ANA Discussion Forum

AN Community => AN Community => Topic started by: GM on May 25, 2007, 08:18:51 pm

Title: A place to vent
Post by: GM on May 25, 2007, 08:18:51 pm

I realized that we don't have a place to just vent.  We have a place to post and receive feedback, but not just a place to type how we feel at the moment.  So...here it is. 

OK...I'll start it off...

TINITUS, I'm so @!#$%^& tired of the ringing. I tried to talk to my wife the other day about it (because it was louder than normal), and she said:  "Ohh...I thought you didn't have that anymore because you never talk about it"

I understand that people without these issues cannot understand them, but me not talking about them doesn't mean that they are GONE!   There...I feel a little better already...

Gary

Title: Re: A place to vent
Post by: Jill Marie on May 25, 2007, 11:21:30 pm

Thanks for posting the perfect topic through which I can "VENT"!!  Just because we don't complain about our problems it doesn't mean they are gone or that they don't bother us anymore.  Of course we can't blame those around us for not realizing that or understanding what we deal with daily. Some days I get really, really tired of putting ointment in my eye every 5 to 15 minutes.  Then there's the ointment that I have to remove from below my eye while the eye is dry and needs more ointment, why can't it just stay in my eye so I don't have to wipe below my eye again and then put in more ointment.  Then the skin below my eye gets red and irritated from wiping it all the time.  The ointment gets on my glasses so I have to clean them all the time.  I have really long eye lashes so I have to trim them so they don't poke my eye with the weight of the ointment on them.  I wrap the ointment tube in kleenex and put it in my pocket but the ointment still gets through the paper and onto my pants so they have stains on them that usually takes two washings to get out.  To top it off the ointment isn't covered by Insurance and costs me well over $1000 a year!  I'm starting to feel better now! ;)

My eye only waters when I cough hard, choke or workout hard enough to sweat, unfortunatly that's when my nose runs (tumor side only) so out come the kleenex again.  My depth perception is off because of the ointment so I walk slower, especially in new territory.  I love to walk & hike with my Husband and our dogs but I have to spend more time watching what I do and less time enjoying the view. Not feeling as well, must vent more!  :(

One of the other topics I read tonight was about whether to call AN's Brain Tumors or not.  I remember when I wrote to a childhood friend a couple a years after my surgery and told her about my Facial Nerve surgery.  She wrote back they she was glad to hear that was ALL I had as she was told I had a Brain Tumor. 

Then of course there's being out in public and not hearing what some one says to you and they think your ignoring them.  At work I don't hear what someone is telling me while I'm on the phone, as they pick up what a customer is telling me and have info. to add.  Then when I get off the phone they say I should have told the customer what they said, forgetting that I can't hear them while I'm on the phone. 

I laugh and joke with my coworkers and customers but I can't smile so some of them think I'm not friendly. Speaking of being friendly, why the HECK can't some of the people I work with be more considerate of others. I love the saying, "Don't judge someone tell you have walked a mile in their moccasins."  Despite the fact that they have all gone through rough times be it growing up or as adults they still don't have the compassion I have for others.  Someone mentioned in a post that they were a lot more emotional after there surgery and wondered if it was just related to the type of surgery they had.  My father had open heart surgery and mentioned to me that he was a lot more emotional after that.  I believe that when you have any surgery that is life threatening or life altering you become more emotional and caring.  I sometimes wish everyone had to go through something like we have then the world would be a nicer place!  Feeling better again! :)

I think the main reason I need to vent has nothing to do with my tumor.  It's because Memorial Weekend marks the beginning of Summer for most people and it's time to have fun in the Sun, I can't.  A few years ago I found out that I have a skin disease, some of my skin won't tan so I have white and tan spots all over my arms, I have to wear a long sleeve shirt so I don't burn the skin that won't tan and so the skin that does tan doesn't tan so I don't look "Funny".  I have tried the strongest sunblock on the market and it doesn't stop the tanning.  So instead of looking forward to Summer like I use to I find myself dreading the additional things I have to do and worry about looking even weirder than I do in the winter.  When I go outside I have to wear a long sleeved shirt when everyone else is wearing tank tops or T-shirts.

Thanks for letting me vent, now it's time to get some sleep so I can enjoy the rest of the Memorial Weekend!

Title: Re: A place to vent
Post by: Lainie181818 on May 26, 2007, 12:06:13 am

I think the 25th of every month should be "Vent day". Just for one day let's forget how lucky we are that its not " something worse" and let us wallow in self pity.
OK here's my list.
It drives me nuts that,
I now have the agility of an elephant, not that I was delicate and poised before, but now I can bring down a shelf of soup or anything else in a store without even moving. Forget about  ever going into a crystal store again.
I used to love a good glass of wine, now I am a cheap lush. I can't tell the difference between a good Pinot and a good Paint stripper.
I am no longer in controll of my eye or my mouth. I have an uncontrollable smile [ or snear ] that manifests itself whenever it llikes. I can be told about a death, a divorce and I will start to smile and wink my eye.
I hate that i can bring silence and gasps in a room just by saying " I had a brain tumor " God even a leg amputation doesn't bring this much attention.
Actually I walk like I have had a leg amputated.
I'm sure people think I have been " hitting the bottle " as I stagger along I am just trying to "hit a straight line "
OK I could go on and on, but I feel better now. So it's off to bed after I have put drops in my eye, my "Capt Hook" eyepatch on. Taken my Ambien, and Prozak, and god forbid I fall asleep on the AN side. My poor husband has to turn me over like a " rotisserie chicken.
But guess what guys " It could be worse "
Lainie.

Title: Re: A place to vent
Post by: Catflower on May 26, 2007, 06:15:44 am

Thanks for the great suggestion on "venting".

As for me I'm almost 6 weeks post surgery.  I'm sick of feeling sleepy and tired most of the time.  My family is waiting for me to "recover", but I wonder if I'll ever meet their expectations.  I don't know if they will understand that my "normal" self will be much different than my pre-surgery self.  I was having so much fun enjoying my only granddaughter before the surgery.  Now, I can't even pick her up or have her stay with me for the weekend.  I often times think I should have just kept the AN until it became life-threatening.  I had such great expectations about getting that thing out and returning to life.  Some days the depression takes over even on Prozac and I hate those days. 

I also stagger around like I've been "hitting the bottle".  My right eye is bigger than my left, my smile is crooked, I can't hear out of my right ear and the left one feels like it's plugged up and has since the surgery.  My surgeon told me he was able to preserve my hearing so I'm angry that it didn't turn out that way.  I'm angry that I have had all of these darn complications (brain swelling and back to the hospital; infection in incisionn so back to the operating room and more time in the hospital and six weeks of IV antibiotics at home; reaction to one of the antibiotics)  This stinks!!!!!

Title: Re: A place to vent
Post by: nancyann on May 26, 2007, 07:03:23 am

Hi guys:  Lainie, I know you were serious, but I got a great laugh from reading your post !!!  You made my morning !!!!  It was really funny - I can relate to the wine issue.
Well, all I can say is 'ditto' on all the vents.  However, I have the added joy of being single (well, maybe it is a good thing !), & dealing with all this alone, not having someone to snuggle up with at night...... feeling like Quasemoto or Phantom of the Opera.....  I want my smile back....

Title: Re: A place to vent
Post by: Omaschwannoma on May 26, 2007, 08:12:55 am

I just got "knocked offline" after typing a whole "schpeel" about venting.  SHEESH!

I thank you for this forum as I found it very humorous!  Laughing out loud my husband came in to see what was so funny.  As I read some of the issues we deal with and we both reminisced about mine.

Yes, he likes my fatigue level that now matches his--low (he's years older than I) as I've now caught up to him.  Cheap date and drinks!?--we both like that!  Calls me a stumble bum as he reaches for my arm as I sway this way and that.  He'll chime in "Come on, spit it out." as he sees my eyes searching the air for the word as if it will mysteriously come along like a marquee posting.  Frequently he'll forget and talk to me while I'm on the phone asking me why I didn't tell them, "blah, blah, blah."  "Hello? I can't hear you! This side is busy."  Other times he sees me standing alone in a room trying to remember why I am there and with a serious look on my face I'll ask, "Why am I in here?"  He smiles.  We have fun with my quirks as to see them otherwise is depressing. 

I know some of us have a more difficult time dealing with our issues and cannot find the humor--I am sorry for the losses of your "self", but may I add some positives words.  I noticed early on I may perceive I am alone in my daily struggle and wanting "them" to understand is futile.  I encourage all who feel alone to discover that it is our "self" that knows how we feel and all we struggle with.  Truly we are not alone. 

Two and half years later, I still have friends and family members saying "You STILL struggling with balance?  I though you had rehab?", "You are teaching Yoga classes aren't you?", or "You STILL can't hear out of that ear?", or "I always forget what I was going to say or where I put that."  Then there are those with an honest desire to really know how life is for me and explaining my nystagmus to them is like watching someone's amature video of scenery while holding the camera and walking (bouncing all over the place). Then they will finally say, "Oh, now I understand."  only to be followed quickly by, "Well, you look great though!"  To this I picture myself on the ground saying, "I've fallen and can't find the words to tell you."  All the while drooling and holding my swollen head while my eyes are tracking wildly back and forth.  This keeps their insensitive comments from bothering me as I enjoy a private joke.  I guess to them it's "Dahlink, it's not how you feel, but how you rook and you rook mahvelous!" 

I bow out with a statement made elsewhere on this forum, "Life sucks, then you have a brain tumor (even if you don't call it that)!"

Title: Re: A place to vent
Post by: ppearl214 on May 26, 2007, 09:41:14 am

For those of you that are experiencing the "not-so-good" aspects of our AN journey and are having a difficult time, I send huggles and wishes that today... and tomorrow... will be a better day.

Phyl

Title: Re: A place to vent
Post by: madshackle on May 26, 2007, 10:31:06 am

The bleeding tinnitus ! aaargghhh!! When people laugh at me when I can't locate what direction a sound came from, priceless. My already bad insomnia made worse with the stress of all this. Cognitive issues creeping in like transposing letters in words and words in sentences while typing and speaking. The balance problems that will most likely cost me my job. The insane health care system that we must bow to to get treatment.

hey, I feel a little better...

Dave

Title: Re: A place to vent
Post by: Boppie on May 26, 2007, 10:56:06 am

My husband and I had a chuckle last night when we were shopping in the grocery store.  I was following behind him at 30 feet perusing the deli stuff.  He was pushing the cart.  He turned around and looked for me just when I took one step forward and did one of those steadying two steps.  He said what he always gets to say. "I saw that!".   ;D

And yesterday, I was manuevering my stepping stones on the garden path and had reached the front door.  I looked up to locate the voice that was saying "Hello mam."  It was the flooring repair man, who had made an appointment and was exactly in time.  Instead of just letting him in the house, I fumbled all over myself explaining my drunken approach to the door and why I didn't see or hear him for the whole five minutes he stood there waiting.  I heard a little sigh from the poor man when I let him in to get his work done.

It is hard to stop explaining myself.   
 

Title: Re: A place to vent
Post by: Dealy on May 26, 2007, 11:30:21 am

 I certainlily agree that we should have a national vent day per month. The other day an employee at work started yelling at me-I asked her "why are you yelling"-well you can't hear me"-probably because I had my hearing aid out- "oh she said" Yesterday at work she was like sweet as pie. I told my wife and she felt like I do-people will never understand what it is like. Try being an NF2 sometime-wow what a challenge. My ear is dead on one side and needs a hearing aid in the effected ear-phone is still out-but I can detect speech-just not deflection in tones etc. We still run across relatives when I am about town-since we live in a small city-only population of 20 thousand. I am still asked-are you cured yet-I thought you had radiation. You want to say-well actually I am but I was faking the last year to get your sympathy amd make myself miserable all the time-how's that for an answer. I can tell when people at work think I am using my tumor as a means of sympathy. The world can be cruel and people can be so-in a sense stupid. I just deal with it and except this cross and no that I am not the only one that has to deal with being incapaciatated. I ran into a good friend of mine the other night walking our little dog. She suffers froms depression and has macurlar (spelling) degeneration of the eyes-so she can not see. She invited me in the her house to talk and told me all about her problems and wanted to know what I do to carry on each day. Well that is another issue and story-but carry on we do-what else can you do. Love too all on this group-Stay Positive. My brother-in-law has a saying "Don't let the bastards get you down" His quote-not mine. Thanks-Ron

Title: Re: A place to vent
Post by: tony on May 26, 2007, 11:55:40 am

I was in an Interview and had explained about multiple tumours/surgeries and NF2
I DEFINATELY used the word "Incurrable" in the explanation
"Ah but youre alright, "cured" now, arent you" - said one of the board smiling...
Hmmmm........ and I thought I was the one with the hearing defects......
yours...in sorrow.....
Tony

Title: Re: A place to vent
Post by: Sue on May 26, 2007, 12:25:23 pm

Ooops, I sort of vented in my post about Dizziness and Deaf Issues...

Didn't see this thread.

Vent on, comrades, vent on.

Sue in Vancouver

Title: Re: A place to vent
Post by: mema on May 26, 2007, 03:39:00 pm

My husband didn't grasp my tinitus and hearing loss at first because he has complained of hearing loss and tinitus for years from noisey construction work.  It wasn't until just recently when he had his first real hearing test that he could see in black and white on the reports just where we differed.  While he was at the 50 mark, I was off the chart way beyond profound.  Now he understands.   Now wouldn't it be nice if others did too.  It is a bit monotonous when friends or co-workers say "you still can't hear?   As for my clumsiness, I always was .  So now I have an excuse for it.                                                                                                                                                   


                                                                                                                                 mema

Title: Re: A place to vent
Post by: matti on May 26, 2007, 09:16:18 pm

losing some of my independence has been a big issue for me. On my dizzy/off balance days, I know it's not safe to drive, so I always have to depend on others or will put off what I need to do.  I am also tired of the sensory overload I get while driving and have to stick to side streets that are less busy and also not being able to drive at night :(

Feelings of isolation that sometimes accompany SSD

Cheryl

Title: Re: A place to vent
Post by: er on May 26, 2007, 09:50:40 pm

hello Gary,
Right on!!! The feeling is mutual.
And Jill Marie, You are right about the emotions, my husband also went through a 6 way bypass in September 2006, 8 months ago and he does the same thing so we both feel that life is very important and no wasting of time
eve

Title: Re: A place to vent
Post by: Pembo on May 27, 2007, 08:40:21 am

I'll play, I'm 3 yrs post op on June 3rd and just had my MRI this past week. I've been venting for days, sometimes you just need to feel sorry for yourself, because no one understands.

tinnitus - augh
ssd, can't locate sound---augh
the wide open eye - augh
the crooked smile and continual smirk
not being able to squint, even when it's not that sunny - augh
clip-on sun glasses - grr
the word mix-ups - grr
the endless amounts of chapstick and god forbid I forget to put it in my pocket, I turn into an addict looking for my next fix.....

Yep, it could be worse but this is my reality and it is not always fun and YES I have my days when I long for the normalness that was life before the AN.

Title: Re: A place to vent
Post by: Sam Rush on May 27, 2007, 11:04:29 am

This venting thread has made me seriously depressed.  Thanks all !!!

Title: Re: A place to vent
Post by: Windsong on May 27, 2007, 11:35:58 am

Come'on Sam.... you're made of stronger stuff! ;D

What's that phrase? It could have been worse.... just think if you had had an An appear in the 1960's?

Life is good, life is precious, have fun when you can.

In the meantime, for this second, I will vent about hearing loss.

Having 0 hearing in my An ear and loss in the second one, meant that yesterday (as usual now) I missed half the conversation directed at me from someone eight feet away because that person was on my An side. And although I knew something was being said I stayed put because I am tired of constantly walking over to a person speaking to me in those situations.  And.... I have noticed that most don't bother to do the walking over to me because frankly they don't get it....

so i'm anxious to get this hearing aid because I wanna hear.
 ;D

be cheery... life is good (for the most part) :D

W.

Title: Re: A place to vent
Post by: Boppie on May 27, 2007, 11:53:08 am

Yes, lets be cheery!  I agree!  Let's get a thread going about finding the positives, books and poetry references for recovery. :)

Title: Re: A place to vent
Post by: Jill Marie on May 27, 2007, 07:49:46 pm

I agree that being cheery, looking on the bright side, laughing at yourself, laughing with others, knowing that it could be worse, enjoying all the good things in life (family, friends, fellow tumorites, Spring weather & more) is very important.  However, I first posted on this thread because it had been a very long week at work & I was really tired and a bit frustrated.  I felt this was the ONE place I could let it all out, so I did.  I felt much better after that and have had a great weekend since then.  I do believe that I will leave the bright side of life for a thread on that subject.  Here is where I can come to vent when I need to so I will feel better.  I encourage others to do the same!  JIll

Title: Re: A place to vent
Post by: ppearl214 on May 27, 2007, 09:23:10 pm

Hi all,

Just fyi reminder.... this discussion forum was created by the ANA as "support" for each other.  I do believe we all need a place to "vent" and release our frustrations during this AN journey, but we are also here to "support" each other.  As we all have our good days and not-so-good days, this thread is being watched carefully to make sure this doesn't turn out to be a real downer as many new folks log onto this site daily to seek support.

As we all need to release our frustrations, let's please keep in mind those newbies on this site that reach out for information/knowledge, as well as share emotions... ok?  This is a much needed thread for many but there are many that are trying to also keep a positive light during this time.... so, please remember that.

Thanks.
Phyl

Title: Re: A place to vent
Post by: BB on May 27, 2007, 10:11:05 pm

AS MUCH AS WE DO TRY TO BE HELPFUL AND POSITIVE, ISN'T THERE A NEED TO TELL IT HOW IT IS?  WE ALL HAVE GOOD DAYS AND REALLY BAD DAYS.  ISN'T HONESTY THE BEST POLICY.  WE ARE SO HAPPY WE HAVE MADE IT THROUGH THE AN SURGERY AND ALOT OF THE PROBLEMS WE ENCOUNTER, BUT LIFE IS DIFFERENT FOR A LOT OF US.  EVEN OUR DOCTOR'S ARE NOT THE BEST AT HELPING US DEAL WITH OUR PROBLEMS AFTER SURGERY, BECAUSE, THEY DO NOT KNOW HOW OUR OUTCOME WILL BE, OR REFUSE TO ADMIT IT EXIST'S, LIKE THEY DO NOT WANT TO BE RESPONSIBLE FOR ANYTHING.  SORRY, BUT I GUESS I ALSO NEEDED TO VENT.  MY HUSBAND TELLS ME IT'S OK TO VENT, AND THEN REMINDS ME HOW FAR I HAVE COME SINCE SURGERY. I KNOW WE NEED TO BE POSITIVE, AND HELPFUL TO ALL THE NEW AN PEOPLE.  IT IS A SCARY TIME FOR THEM, WE SHOULD BE SUPPORTIVE, BUT AFTER SURGERY THEY DO NEED TO KNOW WHAT LIFE CAN BE LIKE.  THANKS FOR THE VENTING TIME.

Title: Re: A place to vent
Post by: TP on May 27, 2007, 10:19:16 pm

As someone who tries very hard to be positive and encouraging to others, I find I have not been as honest about my feelings because I know I cannot change my situation physically at all, I pretend a lot about how I truly feel. As I have read thru this thread I can relate a great deal to the frustrations everyone is experiencing.

Each Sunday at church someone asks me how I am doing. They share with me that I look like I am doing great and as a good doobie, I say I am - with a smile. I don't really want to unload on someone about my situation. However, I have a friend at church who has bells palsy. Even though our situations are different we both experience facial paralysis at some degree and all those annoying side effects. We both share between the "two of us" our frustrations because we can relate with each other. We agreed that we are thankful this is all we have - but it doesn't change the fact that people stare, we feel different and folks who haven't experienced this - can't really relate (family, friends and co-workers to name a few).

For you newbies or folks who are considering surgery, not everyone turns out the same. We all have different backgrounds, health history, age, experience in Dr's, recovery times, etc. Going under the knife is serious. I would bet those of us who didn't have a lot of time to think about surgery but needed surgery quickly we were mainly concentrating on removing the brain tumor and not the side effects. I know I never thought about the potential side effects. I just wanted my head aches to end. After the tumor was removed, thank God - they ended. I am sure the folks who are wait and watch mode can be very frustrating and somewhat scary because they have more information than you can imagine. Knowledge is awesome to have but can sometimes can be overwhelming!

Bottom line for me, I am frustrated with all my side effects, but I truly have faith that I will get better some day. I just pray that day is real soon  ;)

Title: Re: A place to vent
Post by: Jill Marie on May 27, 2007, 11:14:14 pm

Quote from: BB on May 27, 2007, 10:11:05 pm

AS MUCH AS WE DO TRY TO BE HELPFUL AND POSITIVE, ISN'T THERE A NEED TO TELL IT HOW IT IS?  WE ALL HAVE GOOD DAYS AND REALLY BAD DAYS.  ISN'T HONESTY THE BEST POLICY.  WE ARE SO HAPPY WE HAVE MADE IT THROUGH THE AN SURGERY AND ALOT OF THE PROBLEMS WE ENCOUNTER, BUT LIFE IS DIFFERENT FOR A LOT OF US.  EVEN OUR DOCTOR'S ARE NOT THE BEST AT HELPING US DEAL WITH OUR PROBLEMS AFTER SURGERY, BECAUSE, THEY DO NOT KNOW HOW OUR OUTCOME WILL BE, OR REFUSE TO ADMIT IT EXIST'S, LIKE THEY DO NOT WANT TO BE RESPONSIBLE FOR ANYTHING.  SORRY, BUT I GUESS I ALSO NEEDED TO VENT.  MY HUSBAND TELLS ME IT'S OK TO VENT, AND THEN REMINDS ME HOW FAR I HAVE COME SINCE SURGERY. I KNOW WE NEED TO BE POSITIVE, AND HELPFUL TO ALL THE NEW AN PEOPLE.  IT IS A SCARY TIME FOR THEM, WE SHOULD BE SUPPORTIVE, BUT AFTER SURGERY THEY DO NEED TO KNOW WHAT LIFE CAN BE LIKE.  THANKS FOR THE VENTING TIME.

Thanks BB for saying exactly what I was feeling.  I think it's good for the Newbies to know it's ok to vent!

Title: Re: A place to vent
Post by: Catflower on May 28, 2007, 06:14:48 am

I think having a place to vent is great.  We all need to vent to others who share our feelings, both physical and emotional.  I also agree that is a good idea to let the newly diagnosed know what life can be like following surgery.

If I had known before surgery what I know now I would have definitely tried the Gamma Knife first.  My surgeon told me if I worked outside the home to plan on being off for 3 weeks.  Here I am 6 weeks post and there is no way I could go back to work.  Of course, I have had several complications which required two subsequent hospitalizations and a second surgery due to infection in the incision and am on IV antibiotics until the end of June.  Nevertheless, I wish I had known more.

I try to be positive each day, but some days it just isn't possible and it's great to have others to "talk" on those days.

Title: Re: A place to vent
Post by: Ellenmn on May 28, 2007, 06:21:54 am

Well I'm glad this thread is here. I also try to be positive every day. If you've read my other thread you know that I have had radiation but will be having surgery the end of June. I am so tired of the facial spasms, headaches, sharp pains in the right side of my head, and now it seams as if my tear duct gets plugged on that side. I feel like some ones pushing my eye ball out from the inside, then when I rub my eye a couple of times I have so many tears it runs down my face and sometimes it relieves the pressure and sometimes it doesn't. I can also relate to the hearing issue on the AN side.
All that being said I am also very scared of all the things that happen after surgery.
The facial problems, the balance problems, etc...
I also read on some threads on hot flashes increasing if that happens I will be one walking heater. 3 months ago I started getting the Hot flashes again and they are back with a vengeance. I have one to two an hour and I am awaken at least 3 times a night with night sweats.

OK EVERYONE HAVE A GREAT DAY.

Title: Re: A place to vent
Post by: GM on May 28, 2007, 06:30:06 am

I've read all of the posts so far and I'm happy there are others that feel the need to "vent" as well.  I absolutely believe that a positive attitude, support from family, church, friends and loved ones…and just plain ‘ol  "strong will" will get all of us through this.

But there are just days...when it all piles up and I need to let it out.  Sometimes it's while driving to work, or typing in my (password protected) journal.  But it helps to vent to people who can understand and may want to see that they are not alone in their frustrations.  

This is just an area to vent...no supportive posts required...just vent.  Spouse doesn't understand?  Coworkers don't get it? Kids driving you crazy today??   Here is your place to vent.  

For me there are days (yes they are few, but they do exist) when I need to not be "the rock" that people see.  Most people know I have a AN...but do not know that I deal with the ringing in my ear, or how I DREAD the annual MRI's, or worry that one day I may have to have this cut out of my head and not be able to return to work.

Most days I handle it well...but on occasion, I just need to vent...I'm sure others feel the same way.  Maybe newbie’s need to see we're human too.   ;)

Gary  

Title: Re: A place to vent
Post by: amylynn on May 28, 2007, 07:07:04 am

I third, fourth and fifth that venting statement.  I am so frickin sick of putting gooey ointment in my eye day and night  I look much different, since the paralysis on the AN side, which has greatly improved, still lots more forehead wrinkles. (poor me!) Conversations with more than one person are extremely frustrating;  often the things I want to say, the words wont come-  that may be good since I tend to be "outspoken";  I cant exercise at even close to the intensity that I feel I need to work off my anxiety (I get weird pressure in my head when I try to jog- which was my pre-AN removal "happy pill") now I am taking prozac and have recently got into the wine a little heavy.   I feel like I have no right to complain because lots of people have it much worse and more difficult than I do.  I have weaknesses I need to work on.  In some ways the AN situation has made me stronger but there are days I feel like an emotionally pathetic wimp. On a positive note I am still back to work full time and have done pretty well so far, getting stronger- my job depends on it.  Driving the fire truck is no problem. I do know that I am blessed to be here and things will get better, just have learn to adapt to the changes and keep moving forward, I am determined.   I have set a short term goal to run in Race for theCure in August.  Thanks for the opportunity to vent!
I wish all you out there a Happy Memorial Day.  God Bless!
Amylynn

Title: Re: A place to vent
Post by: Lainie181818 on May 29, 2007, 12:18:42 am

I think it is a very positive thing to be able to Vent. I also think that when you can bring some humor into it, it is a sign that you  are starting to get over it. I wrote one of the earlier messages, and felt great after sending it. I also feel a kinship with all of you who also vented. Apart from this website, it is not easy to find someone who has "staggered in my moccasins" and I do not feel so alone. I also think that "newbies need to know what MIGHT HAPPEN after treatment. If i had of known before surgery I would have absolutely definitely looked at other alternatives before making my final decision. The outcome may have been the same but I would have been better prepared and educated.
Happy Venting
Lainie.

Title: Re: A place to vent
Post by: ppearl214 on May 29, 2007, 05:49:08 am

Question... in follow up to comments made here.... how many of you are microsurgical vs. radiotreatment?  I ask this as it seems that many of you that are venting seem to have had microsurgery (whether by choice or not) vs. radio or is it those that had radiotreatment are not posting on this thread?  I agree with Lainie that newbies need to know what might happen and please remember there are other threads here in many of the forums (esp. the "Post-Treatment" forum) where many share their post-treatment outcomes, regardless if good or not......

Just curious of the ratio of treatment for those that are venting... nothing more....

Phyl

Title: Re: A place to vent
Post by: Catflower on May 29, 2007, 06:07:01 am

I had microsurgery.

Title: Re: A place to vent
Post by: ppearl214 on May 29, 2007, 06:08:14 am

Thanks Catflower


So, Microsurgery:
Catflower


Others? What procedures (microsurgery vs. radiotreatment) did you have?  I'm just curious if the frustrations noted here are more microsurgery or other treatments and if so, this sends a clear message to treating surgeons of issues and emotions they need to be aware....


Phyl

Title: Re: A place to vent
Post by: Dealy on May 29, 2007, 07:02:59 am

I had radiation. I believe that venting can be a postive conduit to healthy mental health. Why. Simply becomes as human beings we need to release our anxiety and concerns knowing that not one person on this site can change your physical condition but then can change your mental stability. You relate with people who have the same thing. I thought this was one reason for this site.If we intend to sugar coat everything for newbies then we are  fooling ourselves and them.Life is not a bed of roses. Some come through with flying colors in AN surgery or radiation or microsurgery while other's have complications. We all have a right to feel down as Gary says. If we have too resort to playing footsie on the site-that we might offend someone because we are venting-well to tell you the truth I would rather resort too correspondence then with people on an individual basis. The Cyberknife site is more depressing than this one will ever be. I said by spiel-that's how I feel. Thanks-Ron.

Title: Re: A place to vent
Post by: Ellenmn on May 29, 2007, 08:01:30 am

As I stated in my vent I had radiation 4 yrs ago and will be having Translab on June 28th.

Title: Re: A place to vent
Post by: ppearl214 on May 29, 2007, 08:20:53 am

Quote from: Ellenmn on May 29, 2007, 08:01:30 am

As I stated in my vent I had radiation 4 yrs ago and will be having Translab on June 28th.

ellen, based on your post history, I am assuming you had GammaKnife (single dose with metal headframe)?

Phyl

Title: Re: A place to vent
Post by: Mark on May 29, 2007, 08:55:10 am

Ron,

The Cyberknife site is more depressing than this one will ever be

Help me understand this comment. If you're referring to the CPSG site, it is designed to allow potential patients the ability to ask questions of doctors primarily and there is no where near the amount of patient interaction as on this one. I'm very supportive about your comments regarding venting, but the CPSG site does not have the dedicated community size of this one to expect it to have that capacity, if that's your expectation of it.

Mark

Title: Re: A place to vent
Post by: Captain Deb on May 29, 2007, 11:21:05 am

I actually had my wonderful grandsons (aged 18 months and 4--both born after my surgery) here for  4 DAYS and guess what? NO SCREAMING BRAINWRECK MIGRAINE!!!!!  That's the first time that's EVER happened--thanks to 2 great docs and $250 worth of prescription meds a month!  Of course I passed out cold for 4 hours after they left, but no screaming headache. Big Progress for me.

Capt Deb 8) 

Title: Re: A place to vent
Post by: flier58 on May 29, 2007, 01:15:43 pm

Hi Ron,
Like Mark I am wondering what made you feel so negative about cyberknife site.  I am a CK patient (very happy for time being as my 6 mos MRI shows no growth and a bit of necrosis-dark spot) and the site was extermely helpful in making my decision.  I did not find it any more or less depressing than this site even though it deals also with much more severe illnesses than AN.  And I actually love the humor that docs on that board  share with us.  Just wondering?!
Flier58

Title: Re: A place to vent
Post by: Captain Deb on May 29, 2007, 01:59:26 pm

By the way folks, there be a BIG difference between venting and ranting--I find no ranting here, just folks who need to 'splain stuff that their loved ones can't comprehend, to other AN survivors .

Vent on!

Capt Deb 8)

Title: Re: A place to vent
Post by: Dealy on May 29, 2007, 03:19:52 pm

Capn Deb hit the nail on the head-venting is not ranting. The CK site deals with cancer and issues that can be life threating.  I realize so can an AN-If you are speaking about only information that it serves it purpose. However I fail to conclude as some people can defer by people on this site venting that it inself becomes depressing-I cannot conclude the connection. The CK gives info and input from very knowledgeable doctors. I understand someone supporting CK if that is what you had. If I had been on the group before I had FSR I may have gone that route myself because Oklahoma City is only 6 hours from where I live versus Baltimore where I went for FSR. We have multiple medical situations on the CK site while here-we are only confined to people with AN's etc. When I was getting my treatment in Baltimore I was on the same ward on oncology where people were receiving treatment for various forms of cancer. My AN paled in their situation. Spend 6 weeks in that enviroment and yes-seeing people all day in this situation gets you down-can be depressing. That in itself is not a negative statement-I was just referring how someone on this site can call venting depressing. It is fine too feel positive thoughts-I am all for that-but I realize that some people on this group have some serious issues they are dealing with-I for one am glad too hear them vent and express themselves. As I said earlier-I nor you can change one iota of their physical being or condition-however support and lending an  ear is sometimes all we need. Please do not take my comment as being critical of CK or the Cyberknife group. Someone said earlier-walk a mile in my shoes before making a judgement. ThanKs-Ron

Title: Re: A place to vent
Post by: Gennysmom on May 29, 2007, 03:38:46 pm

Ya know guys, we had a huge issue in our office years ago where we were ordered not to complain or to take issues to the person directly rather than "gossip" about them to another employee.  I tried so hard to explain to the boss, and they finally got it, that there is a difference between gossipy complaining and being able to vent frustrations.  Venting is a coping mechanism and done positively can be so helpful in releasing stress....which we all know too well about.  I love most of the comments here!  The other thing that I see from venting is that you can let your true feelings out and receive validation...something that's hard to do in the non-AN world...and validation can be so helpful in that AN treatment and the following symptomology can be so isolating and leaving with you a craving of being "normal".  To me, everyone seems to focus on cancer and the fact that this is non-cancerous, and not to put a label on cancer, but sometimes it makes me feel like I should be feeling my tumor is insignificant.  Well, as far as I'm concerned, brain surgery is brain surgery, whether it's for a TBI, cancer, AN, whatever it may be.  The need to vent is really the need to feel normal and not unlike everyone else...and to receive validation that your thoughts are set in reality. 

So today my vent is this:  it's hard enough that surgery sucks all of the energy out of you, but life goes on and you get other viruses or injuries that just seem to add insult to injury.  I already feel like my life is all work and no play just to pay the bills these days, but now that I've pulled a muscle in my back near my herneated disc....any extra energy I may have had to enjoy life has been sucked dry.  Luckily I'm a tough old bird and will get through this, but today it's bugging the crap out of me.

So a big kudo to everyone who is surviving and thriving...vent on your tough days and lend support when you have the extra energy to do so.  And lean on a good shoulder when you don't have the strength to do either....there's lots of shoulders here. Time heals all wounds, including AN's.

Title: Re: A place to vent
Post by: Mark on May 29, 2007, 04:11:10 pm

Ron,


Thanks for the clarification on your previous CK board comments. I certainly wasn't taking anything personally, just was confused by the statement without any defined context. I would absolutely agree with your perspective that given the much more serious conditions and afflictions that people are looking for CK to help them with on that site, it can be very depressing to read those stories. Having an AN is very serious to all of us who have one, but it does pale in comparison with what others face. That site does have to accomodate a wide range whereas this one is has a much tighter focus. So, I think your comment is very fair based on what I see your point was in the last post.

Mark

Title: Re: A place to vent
Post by: Ellenmn on May 29, 2007, 06:27:04 pm

Quote from: ppearl214 on May 29, 2007, 08:20:53 am

Quote from: Ellenmn on May 29, 2007, 08:01:30 am

As I stated in my vent I had radiation 4 yrs ago and will be having Translab on June 28th.

ellen, based on your post history, I am assuming you had GammaKnife (single dose with metal headframe)?

Phyl

That is correct

Title: Re: A place to vent
Post by: GM on May 29, 2007, 06:32:59 pm

I am a radiation patient....(see post script under this post)...

Gary

Title: Re: A place to vent
Post by: lori78 on May 29, 2007, 06:53:23 pm

Oh wait, we are venting?!?!  Sign me up!!

I'm tired of being tired.  Of feeling like a child under parents' care after two near-engagements to men.  ONE of those ending because after my 2nd surg I became "too difficult" and "much worse than before".  I'm tired of constantly feeling like my job is in jeopardy.  Of drivin ten miles under the speed limit w cars honkin at me.  And mostly, I'm tired of being misunderstood. There!  'Nufff said!  Pity Party over, for tonight, anyway...

Title: Re: A place to vent
Post by: linnilue on May 29, 2007, 07:19:19 pm

I am so happy and relieved that the people that post on this site feel comfortable enough to vent their personal frustrations with others.  We should all feel honored that we are the recipients and participants of such personal and sometimes profound information regarding very private medical and psycological issues.  I am proud to be allowed into this zone of opportunity.  aA you can see there is so much for all of us to learn both pre and post radio or micro surgery.  Both newbies and oldies alike can peruse this site to gain very valuable information, good or bad it keeps us all sane because we all have the same tumor, large or small.  Despite the medical intervention we choose there exists three outcomes, good, bad and mediocre.  These tumors effect our lives forever, just like cancer the tumor takes on a life of its' own.  And just like cancer the options are numerous and there are always three outcomes, good, bad and mediocre.  what is different about cancer is that it is through research that I feel that the doctors are much more realistic and forthright about outcomes and with AN's I think they(the doctors) are not quite honest or forthcoming about the longterm realities.  Therefore, I think that people are just in giving / venting their feelings, frustrations and REALITIES of micro/radio surgery.  Especially for "newbies" (of which I am one even though I am 2 1/2 years post radio) because there is no place to do any really good honest research on all of the implications following either one of the techniques available.  I wish I could've seen what people had to say about their own personal and private experiences, my choice certainly would have been influenced by these threads because the honestly is implicit.  I wish I was a "watch and wait" I wouldn't have done anything until I was forced by circumstance.  I am disappointed by the reaction of others who don't want "newbies" to be scared.  This information is not to scare anyone, it is to inform them of the absolute truths.  I am very disappointed by the notion that we should not "let this information get out of hand and we should be supercautious."  Why?  Because the truth is real?  Because people will make the wrong decision?  I don't beleive that for a minute.  I think people love honesty and I hate skirting the truth.  The truth will always set you free.  I have multiple issues following radiosurgery and my information is not to scare anyone, it is to inform them that all procedures have different outcomes and once you know that you can make the best decsion for yourself.  Everyone please keep posting about this.  I take great comfort in knowing that I am not alone, that I am free to come here to be apart of a group that I love and take comfort in its' presence and take comfort from the strength of others.

Title: Re: A place to vent
Post by: er on May 29, 2007, 09:31:12 pm

PPearl214
What is the difference between   microsurgical &. radiotreatment? 
Reading my recordes that I have, states ,The patient is willing toward a suboccipital craniotomy for microsurgical removal. 
He did not advise for watchful waiting
and no radiation
Please explain
eve
PS
I finally down load the photo taken of my self after my third month of surgery,   I look at that & I do look 100% better
Even though when I smile or talk my mouth is crooked .
the dumb blonde and off balance only last long enough until I go in and take a 20 minute or so rest 

Title: Re: A place to vent
Post by: Jill Marie on May 29, 2007, 10:22:31 pm

Quote from: Dealy on May 29, 2007, 07:02:59 am

I believe that venting can be a postive conduit to healthy mental health. Why. Simply because as human beings we need to release our anxiety and concerns knowing that not one person on this site can change your physical condition but can change your mental stability. You relate with people who have the same thing. I thought this was one reason for this site.If we intend to sugar coat everything for newbies then we are  fooling ourselves and them.Life is not a bed of roses. Some come through with flying colors in AN surgery or radiation or microsurgery while other's have complications. We all have a right to feel down as Gary says. If we have too resort to playing footsie on the site-that we might offend someone because we are venting-well to tell you the truth I would rather resort too correspondence then with people on an individual basis.

I've spent the last 15 years wondering how others like me deal with having had a Tumor. After searching and searching for info. about people that have had Facial Tumors I finally gave up and tried to find a forum about AN"s as that was the most common info. I found when asking my doctor about how to deal with my issues.  When I asked for phamplets about Facial Tumors from the surgeon, eye doctor or info. on  the internet I alwasy get the same thing, it's sort of like an AN. 

When I first posted I wanted to let others know that after dealing with this for 15 years I was doing fine, married 30 years, same job for 12 years.  Then it hit me, what I NEEDED was to know how others TRUELY felt about their situation and how they dealt with it.  All the info. I have read on how to protect your eye, what ointment to use and how to handle various situations you come across in public have been great.  Then came the chance to VENT, the venting really helped, but the best part was seeing that others needed to VENT as well and reading what they vented about. 

Someone posted on here a while back that they wished they could take a vacation from their medical issues.  I think that is what got me going last Friday, here it was, the Memorial Weekend, I worked really hard all week and just wanted to relax and enjoy myself.  I can take a vacation or Holiday from work, laundry & house keeping BUT I can't take a vacation from putting ointment in my eye every 15 minutes!  Jill

Title: Re: A place to vent
Post by: Jill Marie on May 29, 2007, 10:35:18 pm

Quote from: nikynu on May 29, 2007, 07:19:19 pm

I am so happy and relieved that the people that post on this site feel comfortable enough to vent their personal frustrations with others.  We should all feel honored that we are the recipients and participants of such personal and sometimes profound information regarding very private medical and psycological issues.  I am proud to be allowed into this zone of opportunity.  Both newbies and oldies alike can peruse this site to gain very valuable information, good or bad it keeps us all sane because we all have the same tumor, large or small.  Everyone please keep posting about this.  I take great comfort in knowing that I am not alone, that I am free to come here to be apart of a group that I love and take comfort in its' presence and take comfort from the strength of others.

Well said, I'm going to post a bit about the bright side of life but I will be back to vent when I need to and will certainly be here to read what others Vent about.  Jill

Title: Re: A place to vent
Post by: Joef on May 30, 2007, 07:36:17 am

I moved the topic to AN Community , I hope no one was lost in the move!  I do ask that we tone things down a bit or move this to offline PM's .. as Phyl stated,  we don't be a downer or scare newbies off! we all need to vent once in a while.. but like at the office .. I close the office door first  ;D   ;)

Title: Re: A place to vent
Post by: Gennysmom on May 30, 2007, 09:38:00 am

OK, I have a huge respect for you Joe, but your post begs a question for me....is this forum more concerned about scaring "newbies" or supporting patients?  I was here 4 months pre-op, and now for almost 11 months post-op, and I think this IS toned down in comparison to some threads I have seen that have been removed and I would be horrified to think that everything I learned pre-op was "sugar-coated" for my behalf, because that was the "real" focus of the forum here.  I think if you don't let patients be real, then what is the purpose of this site?  To continue the fallacy that having a brain tumor is a breeze?

Title: Re: A place to vent
Post by: msuscottie on May 30, 2007, 10:29:27 am

Well said Gennysmom, I agree. I come here because I appreciate that things aren't "sugar-coated." I get enough of that from my Doctors.

Title: Re: A place to vent
Post by: Jackie on May 30, 2007, 11:06:21 am

Good morning all,

I just needed to put my two cents  in. I recently went to a gathering of An'ers and being the newest member to be diagnosed, listened very intently to the others. What I gleened from the experience was absolutely "be informed", ask questions and make sure before you do any procedure, you know all you can possibly know about the possible complications. Also it is tantamount that you choose wisely the surgeon to do the procedure. After the shock wears off of the diagnosis, if you are lucky enough to have the time to "wait and watch" do your research. So many people that I spoke with afterwards had regrets of their decision to have a surgical procedure and are unhappy with the results. These were people who only spoke to one surgeon and were made to feel they needed to do something right away! After all surgeons do surgery!!! That is why all of you on this forum stress, be informed and continue to research what is best for you! One gal I spoke with is dealing with debilitating headaches, and many other post surgical problems and when she complained to her surgeon, he told her "She had a textbook outcome, quit complaining"! Just another reason to really check out whose doing the procedure and what kind of care will you get post-op.

Title: Re: A place to vent
Post by: Lainie181818 on May 30, 2007, 11:56:09 am

How sad we have been banished to the AN community room. So much for freedom of speech. This no longer feels like a support group. For some people this is the only contact with the AN world. Venting is part of the healing process as well as good days. This moderating seems more like censoring. Now i really feel like venting with nowhere to go.
Lainie.

Title: Re: A place to vent
Post by: ppearl214 on May 30, 2007, 12:04:52 pm

Please note that the move of this thread to the "AN Community" forum is so that the "community" can feel free to share these emotions.... not a "censorship" of posts. As you can see, no one's posts have been edited or deleted as everyone has something of value to share.  The move was just to move it to a more free-form discussion forum.  As Joe also noted, for those that have stronger feeling regarding a particular vent, it is asked that you share that amongst yourselves in private email.

Please know that we all share many of the same feelings/emotions that you share (myself included) and all are respected... nothing has changed.

I now return you to your regularly scheduled broadcast.

Thanks.
Phyl

Title: Re: A place to vent
Post by: linnilue on May 30, 2007, 12:31:33 pm

Quote from: ppearl214 on May 30, 2007, 12:04:52 pm

Please note that the move of this thread to the "AN Community" forum is so that the "community" can feel free to share these emotions.... not a "censorship" of posts. As you can see, no one's posts have been edited or deleted as everyone has something of value to share.  The move was just to move it to a more free-form discussion forum.  As Joe also noted, for those that have stronger feeling regarding a particular vent, it is asked that you share that amongst yourselves in private email.

Please know that we all share many of the same feelings/emotions that you share (myself included) and all are respected... nothing has changed.

I now return you to your regularly scheduled broadcast.

Thanks.
Phyl

I think that is is a purely "politically correct" statement and I am so sorry to see you post this.  Every time soemone starts a thread which is deemed to be "too sensitive" and/ or "private"  the response by you moderators is to "tone it down."  Excuse me for exposing the truth but shame on both you and Joef for attempting to move what you consider "sensitive" material to another thread.  You are censoring, whether you want to believe it or not.  I am very disappointed.  I felt like a real person again once I knew that others had the same symptoms and results as myself.  Given the fact that most doctors jsut roll their eyes and don't give you the real truth, I found solice in this site.  Today I am disgustd by the response from the two of you.  It is as if we should not put forth the truth because the truth should be hidden, it's like you are manipulating what we are alllowed to say.  Both of you should rethink your responses.  I want the truth, if I had known the truth I would have given much more thought into making an informed decision.  Isn't this forum all about making informed decisions based on the results which are clinically present within this population?  Ask yourselves why you think that you should be able to control this information.  I think I know the answer and I don't like it.  I believe in giving patients all the information that they need, all the possible side effects that are possible and I want to know the numbers.  I am a nurse and have firsthand knowledge of full disclosure, theerfore I think that both of you are very wrong in moving this thread. I wish you would rethink it.

Title: Re: A place to vent
Post by: nancyann on May 30, 2007, 03:34:27 pm

No offense Nikynu, but I don't see a problem with just 'moving' this subject to the appropriate site of AN Community.  Lighten up my friend, we've got bigger issues to fry.

Title: Re: A place to vent
Post by: TP on May 30, 2007, 03:47:49 pm

I've read many threads on this site, I agree with most but there are some I don't agree with at all, so I type my response to those I don't agree with and then delete it or I just go find another thread and move on! The nice thing about this website is if you don't like something there are many other topics to find and spend your time reading.

However, when this particular thread started I really enjoyed reading it! I could relate to all the irritating side effects and issues with listening and communicating with my day to day life. I found myself laughing out loud. Knowing someone else is going thru this (although I don't wish this on anyone) does make me feel a little better knowing someone can relate to what I am going thru. Missing half of the conversations going on around me, taking forever to eat my food, having a messed up eye, these are just a few of the simple tasks in our life we take for granted but now have become mini obstacles to remind us daily of our situation. So when I read that we were being told to tone it down or we need to be more positive - I personally took offense.  >:( I try very hard to be positive most of the time.  :D I think everyone so far has been very adult, no one has used any harsh language and folks have spoken from their heart. I pretend daily - saying I am doing great. I have bad days but I don't tell folks in my daily life that cuz I don't want too be "negative" or come across as "complaining". I try to be the rock solid tough gal that I have been most of my life!

So I vote that the venting thread is positive!  I've enjoyed reading everyone's venting updates and issues! It has made me feel good. Vent on!  8)

Title: Re: A place to vent
Post by: Windsong on May 30, 2007, 04:06:53 pm

I think putting this thread under "An Community" which states states "this section is for personal messages" is a misnomer.

The comments in this thread all seem to deal with post An treatment whatever it might have been.

Surely it is more suitable to be listed under either "General Category/An issues" OR "Post Treatment/Comments and Information" ?

Title: Re: A place to vent
Post by: Windsong on May 30, 2007, 04:20:10 pm

Quote from: Joef on May 30, 2007, 07:36:17 am

I moved the topic to AN Community , I hope no one was lost in the move!  I do ask that we tone things down a bit or move this to offline PM's .. as Phyl stated,  we don't be a downer or scare newbies off! we all need to vent once in a while.. but like at the office .. I close the office door first  ;D   ;)

I prefer open doors.....

I wouldn't be on the net reading about Ans except that I want to know things, all things.....

I don't eat candy either.

Title: Re: A place to vent
Post by: linnilue on May 30, 2007, 04:24:02 pm

Quote from: Windsong on May 30, 2007, 04:20:10 pm

Quote from: Joef on May 30, 2007, 07:36:17 am

I moved the topic to AN Community , I hope no one was lost in the move!  I do ask that we tone things down a bit or move this to offline PM's .. as Phyl stated,  we don't be a downer or scare newbies off! we all need to vent once in a while.. but like at the office .. I close the office door first  ;D   ;)

I prefer open doors.....

I wouldn't be on the net reading about Ans except that I want to know things, all things.....

I don't eat candy either.

Touche'...

Title: Re: A place to vent
Post by: nancyann on May 30, 2007, 04:29:01 pm

Well, maybe I'm a little off (nothing new) - but I don't care where a post is placed, if I'm interested in the subject I read it.  Things like 'moving a subject' or having my words 'censored' (when inappropriate for a G-rated forum)don't bother me.  Nikynu, I apologize if I hurt your feelings - alot of times things that bother others don't bother me, sometimes it's a good thing & sometimes not ( look at the mess I'm in from NOT doing research, etc.....)   Always good thoughts to all on this forum, Nancy

Title: Re: A place to vent
Post by: linnilue on May 30, 2007, 04:34:00 pm

Quote from: nancyann on May 30, 2007, 03:34:27 pm

No offense Nikynu, but I don't see a problem with just 'moving' this subject to the appropriate site of AN Community.  Lighten up my friend, we've got bigger issues to fry.

  I'm not sure I understand what you are saying?  If we have bigger issues to fry then why can't we fry them in front of the general population?  You, my friend may want to rethink this ambiguos statement especially if you believe that we/I have bigger issues to fry.

Title: Re: A place to vent
Post by: nancyann on May 30, 2007, 04:39:59 pm

What I mean is I don't see the point of getting angry over where a subject is placed by one of our moderators - I try not to 'sweat the small stuff' - but if this has you in a tizzy, blast away ! (the subject is "RE: a place to vent") Nancy

Title: Re: A place to vent
Post by: BB on May 30, 2007, 04:59:09 pm

OK, DID WE HIT A HOT TOPIC?  I HAVE BEEN MORE OF A READER OF THIS FORUM, THAN A WRITER.  THAT'S JUST ME, BUT WHEN THIS SUBJECT CAME UP, IT HIT REALLY CLOSE TO HOME. I COULD RELATE SO MUCH WITH WHAT EVERYONE HAD TO SAY, AND IT HELPED ME TO KNOW THAT I AM NOT ALONE WITH THE THOUGHT'S I AM HAVING OR PROBLEMS I AM HAVING.  I AM ALMOST ONE YEAR PAST SURGERY.  I DO GET VERY DOWN AT TIMES AT MY PROGRESS.  SOME DAYS I FEEL GREAT.  MOST DAYS THERE IS ALWAYS SOMETHING OUT OF WACK. SOMETIMES JUST NO ENERGY.  JUST AS NEW PEOPLE ARE JUST DISCOVERING THEY HAVE A AN, WE WHO HAVE BEEN THROUGH SO MUCH ALSO NEED HELP AND ADVICE AND ENCOURAGEMENT AS TO WHAT IS NORMAL AND WHAT IS NOT.  NOT THAT ANY ONE WOULD KNOW FOR SURE, BUT THERE IS A LOT OF VERY EDUCATED PEOPLE, AND PEOPLE WHO HAVE REALLY RESEARCHED THEIR STUFF.  I THOUGHT I DID, NOW I AM QUESTIONING MY DECISION ALSO.  IF I HAD HAD SOME OF THIS INFO, I WOULD HAVE ASKED THE DOCTOR MORE QUESTIONS, WENT THE EXTRA MILE THAT I THOUGHT I HAD.  LIFE IS PRECIOUS, BUT I THINK WE ALL GREIVE OUR OLD SELVES AND WHAT WE USED TO COULD DO.  I HOPE THIS PROCESS WILL PASS, OR WE ADJUST BETTER TO IT.  I'M A LITTLE SURPRISED AT THE RESPONSE OF MOVING THIS SUBJECT.  IT DOESN'T MAKE ANY DIFFERENCE, BUT WHAT DOES IT LOOK LIKE TO TRY TO HIDE IT.  JUST MY THOUGHT.  I DO APPRECIATE EVERYONE ON THIS FORUM.  WE ARE ALL IN THIS TOGETHER.  THE GOOD, THE BAD, AND THE UGLY PART OF THIS AN THING.  THIS IS WHERE A LOT OF US ARE AT RIGHT NOW.  SO BE IT, LET US WORK THROUGH IT.  THANKS

Title: Re: A place to vent
Post by: Jeanlea on May 30, 2007, 05:29:11 pm

I like this thread.  It helps so much to know that there are others with similar problems.  I had a larger tumor and surgery was my only choice.  It was pressing on my brainstem so it needed to be done quickly.  I went into the hospital with the brightest of spirits.  I truly thought I would come out the same as I went in.  I knew there could be complications,  but I didn't think I would have any.  Well, I came out almost the same as I went in.  Just lost a balance nerve, hearing in my left ear, no more feeling on the left side, no more movement on the left side, my vision has never been normal due to all the lovely lubricants I have to keep in my non-blinking eye.  My left side is a bit weaker than the right, too.  But each day I go on like I'm the same as I was before.  People tell me I've taken this all so well and have a positive attitude.  If they only really knew how I feel some days.  It's nice to come to a place where people really do understand.

Title: Re: A place to vent
Post by: GM on May 30, 2007, 07:29:11 pm

Well I feel I should say something since I started this...mess?

I originally started this post because I was coming up on my annual MRI...which I hate by the way...and I had no one to talk to about this.  My wife worries when I talk about my AN, my family wonders why I still "have it" since I had GK, and the people at work don't have a clue...nice bunch...but clueless.

I figured I had the right spot since it stated:  "AN Issues - Feel free to talk about anything AN related in this board"    I felt that since I have a AN...and I feel this way because of my AN...it's AN related...make sense?

I understand that newbies can get scared...hell...aren't we all scared at times?  That headache, the eye twitch, wondering if we'll be able to support our families with future income...sounds pretty scary to me.

You run the site therefore you make the rules, but to "one-side"  a conversation is like continuing to teach that the world is..."flat."

Gary

Title: Re: A place to vent
Post by: Raydean on May 30, 2007, 08:19:55 pm

In the past few month i had wondered if there was till a place for me on this forum.  I am thankful that I still have a place here. 

Since this is a vent thread I'll start with what was Chet's biggest vent.Surprisingly it wasn't any of the medical conditions, or even the Doctors.   He absoultely reacted to the term "horror story" in reference to someone having a poor outcome.   Persons  with outcomes seldom refer to themselves as a horror story, nor did he see himself as a horror story,  what was, was. A horror story is something you watch on late night TV, or a  scary novel, it wasn't someone's life.  It's kinda funny now because if you only knew how many times that I censored and cleaned up his replies when the term "horror story" came up.

I think Gary came up with a fantastic and appropriate thread.  We all need a safe place to vent.
Looking back over the years it wasn't the big stuff that happenned that caused a need to vent, but the accumulation of alot of little stuff.  Big stuff, adrenalin kicks in and we go in overdrive, but that small stuff sure  adds up, you know the straw that broke the camel's back.   I would hate to see anyone leave the forum, be it a newbie or postie. because of having to watch how every post is worded in fear of offending or scaring  I believe that the vast majority of posters show responsibility in there postings.  It's important to remember that while each of us has the AN in common, each of us has a different different story to tell.  each person's perspective is valid. 
Each AN journey is as individual as the person that hosts the tumor.  What makes the forum  special is that we all fit no matter where we are on the journey, there's room for all.  It would be a disservice to both the newbie,  postie  and AN community as a whole if only the positive was allowed.


Hugs to all
Raydean
 

Title: Re: A place to vent
Post by: er on May 30, 2007, 08:42:22 pm

GM’s comment, the eye twitch, wondering if we’ll be able to support our families with future income is a big issue.  :(And I do agree with him. I do know that everyone is different. If I had to do the surgery again, yes, I would do it. My life is important and I do enjoy being around my son’s and their families. But we are here to support each other. :'( :-* I wish I could hug every one
Eve

Title: Re: A place to vent
Post by: Jill Marie on May 30, 2007, 11:53:08 pm

As I read EACH post I find myself wanting to reply, to tell you I agree with how you feel about being able to Vent, I understand your frustrations with the medical community, your work & your friends.  I made a few notes about some of the posts so I could reply so hear goes:  Gary -thanks so much for starting this thread; Lainie -  Let's hope that we can get back to venting about our medical issues instead of venting about not feeling it's ok to vent: Gennysmom - I understand the problems of adding medical ailments on top of our daily issues, I figured having a tumor change my life should be enough for one person, guess I was wrong; Lori - let's hope that our worries about our job being in jeopardy is just over worrying because of our medical issues, I often find myself over compensating for what I can't do as well as others as I don't want them to feel like they have to do more because of my limitations.  They don't see it that way, don't judge yourself harder than they do.  We all have strength and weaknesses.  TP - Yes, here we can see ourselves experiencing the same things others do, here we are NORMAL! 

Our youngest son is in the Military and he told me one of the hardest things for him is to talk to friends and family about his life now as we don't understand the Military language or the way they do things.  Then when he's with his comrades they don't understand what his life before the Military was like.  They best thing for him is getting to talk to friends and family members that have joined the Military as they can speak his language and understand both sides of his world.

We have that same opportunity here, we understand what it's like to have a Tumor, but we don't know how the rest of our lifes are, if we truely let in both the good and the bad then we can get to really know one another! Jill

Title: Re: A place to vent
Post by: Dealy on May 31, 2007, 05:24:36 am

Gary-As far as I am concerned-you need no apologies. When I first found out I had another tumor-NF2-after being-so I thought free of these monsters after 18 years-I searched the Internet for answers. Got on a small group where Gary_GM was a member also but they all had GK. I was the only NF2 and the only one comtemplating FSR. Still I figured Radiation is Radiation and these people-Gary included helped me so much After FSR I would dream that things would surely improve now and I would be on the fast road to recovery. The smaller group stopped replies and I felt I still needed input and too talk and relate too people that may have AN's and if I am lucky another NF2. Well I hit it on this forum. If I had found this before I may have decided on another route-especially considering CK. However-that is water under the bridge now because I got FSR with the info I had at that time and have too live with the consequences good or bad. I found only one person on this site that I would consider offensive and that person is no longer here.We all share one thing in common-an AN. Some have more other's less to deal with. When I had my first tumor in 1988 that was surgically removed-their was no one too talk to or relate. I came out fine and forgot about my AN and SSD. If I would have had this site -perhaps I would not have been MR. STUPID. I never had an MRI after my first surgery in 1988-thinking this was gone and I would never see another of these again. My surgeon back then told me ever 5 years too have an MRI. I was more concerned about saving money and hoping too forgot I ever had a tumor called an Acoustic Neuroma. Well I found out they can return-whether surgery or radiation and now being an NF2-well I never even gave that a thought in 1988. People-this is a lesson I learned the hard way. I am now paying the price for my stupidity and being naive. Information is the most vitial component to making a decisive decision. I have learned more on this site than I have when I scanned the Internet myself for 3 months. Love you all-Have a good day. Ron

Title: Re: A place to vent
Post by: Maude on May 31, 2007, 07:27:04 am

I am a newbie and am going to my specialist in about an hour. I have three things to share 1) a personal vent, 2)on the site in general and 3)  a comment on the moving of the discussion
1) In December I went to our college president's home for a christmas event. As I was leaving, I realized the front stoop had one step but no guardrail. Knowing my balance problem, I spread out my arms slightly to get my balance but was unsuccessful and tripped down the stairs anyway. My president shook his head, laughed at me as being the ultimate klutz and told me , you throught you would trip and so you did. I was humiliated and told him, no, it was my ear. That moment, while small compared to the vents of after treatment, keeps ringing (no pun intended) true to me. I know regardless of what happens in the next few hours (wait and watch again or follow a different treatment plan), I will have a personal journal that is fraught with joy, sorrow, anger, and fear.
2) I appreciate the place to vent my sorror and fear (for today). I also understand everyone has different levels of anger, fear, joy and fear depending on the day and the person. I have read all these vents and can see each person's journey. It is scary, it is overwhelming for a newbie but no more so than the literature. There is a human element here that touches my heart. I know and feel for each person's pain and frustration.  3) having spend 10 years of my life as an award wining journalist I can say that our freedom of speech has not been compromised. I think the moving to a different venue is correct because it is a private reflection shared among those who really understand. It is still public and non censored. Freedom of speech comes with responsibilities as does this forum, there are clear guidelines. I find it the most open and supportive venue for me (remember I am a newbie, I reserve the right to change my mind later on). I thank the association and the members for providing this opportinity. While sometimes the "warts" in warts in all are unpleasant; they are real. I hope not to dwell on the warts for I am already struggling with my own downward spiral of discontent.

Title: Re: A place to vent
Post by: linnilue on May 31, 2007, 07:40:56 am

Dear Gary,  You did not start a "mess."  This is a site devoted to an patients and their issues.  It is full of very important information right form the "horse's mouth" if you will.  I am amazed myself at the response.  I believe this is about "free speech" and if  the moderators choose to move it because "they" feel that it is too raw or scarey for newbies, that's where I have a problem.  In my opinion that is censorship that is unnecessary since the information is factual and unbiased.  I think that that is what everyone is looking for since most of us don't get the real picture from the physicians.  We look to each other for the truth and that is why I am upset that this thread would be buried in a place that is difficult to find.  I had trouble finding it once it was moved and therefore a "newbie" would have much greater difficulty.  Wasn't that the purpose of the movement?  To sort of hide the thread because of the truths of the information.  I don't think that that was fair.  We are all here helping one another every single day and to move a thread because of it's "scarey" content is not fair to anyone.  Venting is extremely important and  I think we all deserve the right to be listened to by those who KNOW.  If you read through all the entries the common thread is that you can feel very much alone with these tumors but on this forum we share with each other the knowledge that we have all experienced firsthand.  This reminds me of the recent policeing that has been happening on the major news channels.  I am glad you vented Gary, keep on doing it, everybody keep on doing it.  There is nothing distasteful in anyone's responses.  I feel like we are writing for the rights of free speech which is at the core of this site.  

Title: Re: A place to vent
Post by: Gennysmom on May 31, 2007, 11:08:03 am

You guys are all just amazing.  What warms my heart to this thread is that the more I read, the more I feel connected to you all because I can tell by your voices that while specifically different in your stories, we all have so much in common....something I don't really feel in new non-AN friends.  It brings to me a feeling of community and normalcy, something I have lost in this journey.  We all struggle to find the "new normal" and this is the one thread that I have felt closest to the "old normal" with, if that makes any sense.  To lose this feeling because of policing would just be one more loss and the proverbial "straw that broke the camel's back" for me....let's leave us be and stop all the losses and chalk this up to a great gain.  Hugs to you all.

Kathleen

Title: Re: A place to vent
Post by: Captain Deb on May 31, 2007, 11:25:09 am

OK Here's my vent.
I &*%$ hate these  @*&%$ headaches I  *@#$% wake up with in the  #$@%^ morning.  I $%#@ hate not being able to *&%$ hear the  $%#@ TV unless it's &*%$ turned up so  *&$% loud it gives everybody else in the $%#@ room a $%&* headache! I'm %$#@ mad as &*%$ at my local neuro who waited for  three $%*& years to refer me to someone who could actulally &*%$ help me with the *&%$ headaches!  I hate @#$% spending $250 a month on @#$% meds! And I really hate the $%#@ Social *%#$ Security people who've #$%^ put me off for @#$% four years as a #$% tax-payng citizen for 40 *&@# years, and won't give me my $%#@ money!

But I #$%@ LOVE you guys!!!!

Capt  @#$% Deb
cussin' like the true $%# sailor she be!

Title: Re: A place to vent
Post by: msuscottie on May 31, 2007, 11:36:59 am

We're gonna need you to clean that up a bit Deb   :)

Title: Re: A place to vent
Post by: Sue on May 31, 2007, 01:17:49 pm

Just want to say that I appreciate the good work done by our "hosts" aka Mom and Dad, and I appreciate that there is a Forum that we can all turn to for information and also as a place to articulate our frustrations and fears.  It's good to write things out and let off a little steam.  Thank goodness we can do that.

Correct me if I'm wrong, but I think that quite some years ago there were some problems on this site insofar as personalities and opinions regarding treatments etc. that got out of hand and caused some sort of ruckus. I'm thinking that there are watchful eyes now to help avoid those kinds of blowups that can cause hard feelings and ultimately damage the Forum. 

Is this some of the reason, Mom and Dad????  :)

Sorry, I'm in a hurry, gotta go....I may have not stated this exactly right.

By the way.....HELLO RAYDEAN! 

Sue in Vancouver USA

Title: Re: A place to vent
Post by: matti on May 31, 2007, 01:23:26 pm

Not sure this is really a vent, but may be more classified as "a day in the life with single sided deafness".  I was a lttle early for my meeting this morning, was sitting in my car reading and kept hearing someone's car alarm going off. Having SSD I had no idea which direction it was coming from, so kept on reading. I noticed a guy waving at me, so I wave back and then continue reading and listening to someone's annoying car alarm. Another minute or two pass and same guy comes up to my window and says "you must either be deaf or can't figure out how to turn off your car alarm".  I turned 10 shades of red and could do nothing but laugh :D

Cheryl

Title: Re: A place to vent
Post by: Mark on May 31, 2007, 01:24:18 pm

Every once and a while there is a thread that inspires a lot of dialogue and this is clearly one of them. I generally stay out of these exchanges because I never feel there is a lot to contribute as the subject by it's nature lends itself to articulating one's personal perception which is valid for them.

I was somewhat surprised and disappointed to see some of the criticism pointed at Joef and Phyl as moderators. I think they have done a wonderful job maintaining this board and creating a good environment for all of us with AN's to interact. Being involved myself currently and in the past with support and not for profit groups, I also have a tremendous amount of respect for those who dedicate their time in that way. I haven't met many folks with a surplus of time in today's world. So, my hat's off to both of them.

So, at I'm sure some personal risk, I'd like to offer my perspective on a couple of issues that seem to pervade this thread.

1) Moving a thread to another category is NOT censorship, it's organizing where it is either a) connected with similar subject matter or b) more easily found by others seeking that type of commentary. With the exception of vile or generally offensive language situations, deleting a thread IS censorship. I don't see where that happened in this case. There is no secret password to the AN Community category that restricts access and the new posts are visible to everyone. It is out in public to anyone who wants to read it. I don't follow the logic where censorship has occurred at all.

2) I understand the need to vent and / or connect with others who have faced or are dealing with similar challenges related to an AN. It is a major purpose and function of any support group and absolutely should be a component here. On the other hand, I believe that members of an open access, public forum such as this have an implied obligation to assist and provide information to the newly diagnosed people in an objective and balanced way. By definition, vents and rants are deeply personal expressions of frustration or other emotions of an individual. Unfortunately, I have seen many instances where posts written in that state of mind make statements about one treatment or another in general or misleading terms based on that one person's experience. In my view, that is a disservice to those seeking good information in their own journey. It's not about sugar coating or hiding any of the truly worrisome outcomes that we all know can happen. It is about making sure they are couched as a personal experience and not necessarily representative of the norm. I may be in the minority with this thinking but I truly spend time here out of sense of trying to help people with information. I recognize that some folks are here for their own personal issues which is absolutlely fine, but I would suggest that if what your posting is purely emotional that perhaps it does belong in a PM as was suggested. Please be aware that what you post here is very PUBLIC. New readers don't always know how to differentiate between what is common occurrence and what is one individuals issue out of thousands. I think forums like this can be effective in meeting multiple needs of people and I think PM's and categorization of threads are useful tools to integrate the diverse needs of the group.

While I'm sure others will disgree, that's my 2 cents

Mark

Title: Re: A place to vent
Post by: krbonner on May 31, 2007, 03:26:13 pm

Quote from: matti on May 31, 2007, 01:23:26 pm

Not sure this is really a vent, but may be more classified as "a day in the life with single sided deafness".  I was a lttle early for my meeting this morning, was sitting in my car reading and kept hearing someone's car alarm going off. Having SSD I had no idea which direction it was coming from, so kept on reading. I noticed a guy waving at me, so I wave back and then continue reading and listening to someone's annoying car alarm. Another minute or two pass and same guy comes up to my window and says "you must either be deaf or can't figure out how to turn off your car alarm".  I turned 10 shades of red and could do nothing but laugh :D

Cheryl

I hope you don't mind me saying this, but that is hysterical, Cheryl!!  And I really needed a laugh right about now.  Sounds exactly like something I would do!!!   ;D

Katie

Title: Re: A place to vent
Post by: Captain Deb on May 31, 2007, 04:28:30 pm

OK, folks,  now that I've read all of this thread I'll put my 2 doubloons in as well.

So this thread got moved. Boo hoo.  I'm sure it was discussed among the forum admin, 2 moderators and the director.  These people, sans the director, are unpaid volunteers who give their precious time and energy to create a positive place for us to get the help we need.  And this isn't exactly a "public" forum.  It is bought and paid for by the ANA, without which, most of us would have had sugery or radiation by our local small-town yayhoos instead of finding the centers of excellence which, in some cases saved our very lives. If moving this thread has created a more positive place for newbies, so be it.

It now lives in the same category as the Good Morning thread, which is another place for us to blow off steam using imagination and humor. At one time the GM, as we regular posters call it,  was threatened with extinction, but was saved by input from the people reading it and posting to it.

Personal attacks (flaming) around here are really inappropriate and have happened in the past, but the flamers either have left voluntarily or have had their butts shipped on outta here. I believe we were asked to tone it down due to it's location in an information finding area.  Rather than having to spank anyone, they shifted it to the community section, where toning down is not necessary. Fine by me.

That's my story and I'm stickin' to it!

Capt Deb 8)

Title: Re: A place to vent
Post by: Windsong on May 31, 2007, 05:20:35 pm

You know, the word "vent" is one i always understood to be something one did to vent something like that which comes out of a laundry drier hose for example, or , well you get the picture. Interesting what the dictionary says:   "an opportunity or means of escape, passage, or release.... "(quite different from a rant I think) or  " an opening for the release of pressure". It's also a "slit" or "fissure" ( from the French... fendre to split.....

In any case, I think hearing one has an An, then finding out the treatments available and if one even has a choice of treatments for that An, then having the treatment, and  moving on from whatever that was....(dealing with after effects; altered things in life; change in so many things or maybe very few or none at all) .... well all that does mean that no matter how serene we are in hearing about this and dealing with it that some pressure does build up somewhere and there may not be places to "vent" that pressure.  Certainly not at work;  or with strangers one meets during the day   ;);   ;  family is perhaps too close to it or not "there" to begin with;  significant others are so close to it all along that they may not want to hear more... and so on. Thus, what better place to  "vent" than here on an An board, one which has on its home page "An Discusssion Forum" as it's Banner line,  and when one reads down the various listed sections, also has all sorts of places to speak specifically about things....like hearing/balance/ and pre and post and so on......?maybe we should have a Vent section ( it would be a healthy thing) or even "Side Issues That Crop Up Now and Then"

It's great to see that we have a place to do this here, as the reality is that it's the little things that can often be that straw someone spoke about (and those straws are things one wouldn't be dealing with pre An) and venting is good for blowing that straw off so the pressure gets removed nicely and calmly and easily and everyone can get on with life. And smile after and feel OK.....

Great we have this board....
semantics gets tiring after a while though....

all the best to everyone..... :)

Title: Re: A place to vent
Post by: ppearl214 on June 01, 2007, 07:34:12 am

(Cheryl, you need to set that car alarm on vibrate, hun!  :P )

*slowly walks up to microphone, trying to dodge tomatoes and eggs being tossed at me..... stands in front of microphone, taps on it with finger 3 times.....*

Testing, Testing.....

Ahem... hello all... I am Phyl, Cruise Director of the PBW and ANA Web Policewoman and I am here to officially vent regarding my AN.

*clears throat*

I started my AN journey just shy of 2 years ago.  I had already been diagnosed with pancreatic cancer (curable, not the kind that kills you in 3 months).  Complications arose and I had to have a head MRI... well.... lo and behold, I was diagnosed with Chiari 1 Malformation AND and AN.  Now, I was the one working out in the gym 6 days a week, power walking 4 miles in 47 minutes every morning, even in the snow.  I now walk with a cane due to the Chiari 1.  I can't tell if my balance issue is due to the Chiari or AN.  I can't tell which is causing the vertigo.  I hated the fact I had to tell my family, esp. my folks, that they had ANOTHER daughter diagnosed with a brain tumor, after losing my sister to brain cancer.  I am tired of not feeling well. I miss my workouts. I miss my power walks.  I dislike the fact that I have gained 30 pounds (just over 2 stones for you Brits! :) )  I want my old body back. I want to be healed of all that tries to fail me.  I hope this "booger" in my head dies and dies fast.

*wipes lone tear from face*

So... nuff said.  I have had my vent, I appreciate you all listening... .oh, and btw, for those of you that have said kind words about me... not only do I thank you, but your money is in the mail.... (truly.. thank you).

I thank you for listening to me....please vent on.

*smiles at everyone and walks off stage*

Title: Re: A place to vent
Post by: BB on June 01, 2007, 08:17:28 am

I FEEL FOR YOU AND ALL YOU HAVE GONE THROUGH. YOU MUST BE SUPER STRONG  TO ENDURE ALL YOU HAVE HAD TO.  YOU APPEAR TO US ON THIS FORUM SO POSITIVE.  I THANK YOU FOR ALL YOUR HARD WORK THAT YOU HAVE DONE HERE. IT TAKES A SPECIAL PERSON TO BE ABLE TO DO WHAT YOU DO.  THANK YOU FOR LETTING US IN ON YOUR HARDSHIPS, AS IT HELPS US TO KNOW YOUR JOURNEY AND WE CAN RELATE TO YOU BETTER, AND WISH YOU TO WELLNESS.  I DON'T THINK ANY OF US ARE  MAD AT ANYONE, WE ARE MAD AT OUR SITUATION.  FOR ME IT'S ALMOST ONE YEAR MARK, AND I HAVE NO HEALTH INSURANCE NOW.  I CAN PAY FOR THE MRI, BUT THEN WHAT, IF IT IS BACK.  IS THERE ANYONE HERE WHO DOES NOT HAVE INSURANCE? I SEEM TO BE LOSING FAMILY SUPPORT, AS MANY THANK IT'S TIME, IT'S BEEN A YEAR, TIME IS OVER FOR YOUR PROBLEMS, YOU SHOULD MOVE ON NOW, ANY WAY BACK TO YOU.  I WISH YOU LOTS OF WELLNESS TO COME YOUR WAY TOO. PRAYERS TOO, IF YOU ARE OK WITH THAT. THANK YOU AND THE THE OTHER'S FOR ALL YOU DO FOR US, EVEN WHEN YOU HAVE TO PUT UP WITH US ON OUR BAD DAYS.   

Title: Re: A place to vent
Post by: Captain Deb on June 01, 2007, 08:33:02 am

I can relate Phyll--the year I turned 50, I was walking around on the beach on St John in a tiny bikini and was a 5 mile a day runner, a size 4, and had arouind and 15% body fat. Now, 4 years later, on the beach I feel like a whale and won't even take off the shorts and I'm online shopping for a bathing suit with a  >:(skirt! It is a total drag not being able to excercise due to exertion migraines and fatigue from meds. My self-esteem and self-image suffer greatly with my extra 20 pounds (I'm a shorty and it really shows.) The weight bothers me, but the loss of muscle tone bothers me more. I feel my cardiovascular system is suffering and I won't live long enough to see my grandkids grow up.


Whooooooooooooeeeeeeeeee!!!!  That felt good!!!

Thanks for listening with your  good ears!

Hugs,
Capt Deb 8)

Title: Re: A place to vent
Post by: BB on June 01, 2007, 08:56:59 am

CAPTAIN DEB, I WAS JUST OFF TO THE STORE TO TRY TO FIND A SWIM SUIT TO HELP COVER THIS WEIGHT I'VE GAINED TOO..  A SKIRT OR LONGER SHORTS, SOMETHING TO HELP HIDE THIS BODY.  HOPE YOU FIND SOMETHING AND HOPE I DO TOO.  I MAY NEED TO COME BACK AND VENT ABOUT THIS SITUATION. WISH ME LUCK.   BB

Title: Re: A place to vent
Post by: Gennysmom on June 01, 2007, 10:06:57 am

I can tell you all with certainty that the weight thing gets you down, after my surgery I gained 20 lbs.  When I was well enough this last January, I joined WW, and have gotten those 20 off by diet alone, as I can move but wouldn't of called it "exercise" in my past life.  It was like the weight of the world was lifted off my shoulders when I no longer had "post-surgery" weight.  A huge mental block was lifted as well, and I feel like I'm just that much further along in my recovery, just because I have one less noticeable trace that I've had surgery.  It's worth the effort if you can find the strength to accomplish it.  Finding strength these days, I know, isn't as easy as it sounds.

Title: Re: A place to vent
Post by: Windsong on June 01, 2007, 11:06:58 am

I too can relate to the bathing suit bikini, weight gain , loss of exercise mobility etc., the 20 lb that felt heavy despite carrying it well enough on small bones, ok height at 5'6, having a cane... even went thru the wear skirts etc.... then due to other med issues decided to fine tune what i already thought of as a healthy diet....plus "talked" to myself about the fact that i might not be able to fix things health wise in certain areas regardless of what i did, but I could "control" food intake, how much/what etc. and thus embarked on a regime that i hoped would take it all off plus make me healthier all around.... Also, I reminded myself every day that this was to be a life style change and so not a crash diet, learn to remain patient, and slow and steady wins the race to use a cliche.... i spoke with someone who was on a hypoglycemic diet (what/how did they eat);  i already knew the WW use of points or flex systems;  i read up again on the whole carbs/ fats/ protein issues etc. I knew that the fish/fowl/fresh fruits/ veggies. no choc/alcohol/ sugar/candy etc made a difference for me with fibro and crps;  i knew from a guy who was a living example that tai chi had let him walk again with bad arthritis and eventually dump his arthritis meds and move up levels in fancy tai chi moves  etc.;  So basically I embarked on a combination of all of that and watched the pounds come off a healthy two pounds a week on average. I told myself the extra 20 did not come on overnight so it won't come off overnight and in two and a bit months it did come off....
It is wonderful to not have that weight on the shoulders. Think of holding a ten pound bag of potatoes in each hand... heavy huh?

Also it was great fun to go out and buy new clothes  (side bonus was decluttering the closets) ;D

Ceecee has spoken of probiotic yogurt and that was something i always have eaten but now i stepped that up too...oh and breakfast became oatmeal and fresh fruit/berries every day (my cholesterol is good lol)

So even without big exercise it can be done as already said here.

I may not be back to downhill skiing or high impact aerobics or treadmills and weights and i doubt i ever will be due to spinal/ muskuloskeletal limitations, heart and so on, but oh it feels good to be thinner again and  know that what i eat is so much better......

Hope this encourages anyone else.

If you start now, just think, by mid August the 20 lbs should be off!  ;D (without much effort! portion control and balanced eating, with more smalls meals a day being better than 2-3 bigger ones)

Happy losing! :)
W.

Title: Re: A place to vent
Post by: nancyann on June 01, 2007, 02:32:43 pm

Does that mean I have to give up a Brandy Alexander ?  How 'bout if I use 'fat free' ice cream    lol.....then crying out loud !!!!

Title: Re: A place to vent
Post by: Ellenmn on June 01, 2007, 02:40:38 pm

Ok ladies I really didn't think about the weight thing much but know I'm worried. I have struggled with weight for years and I finally found a program that worked and have lost over 50 lbs. It's not really a weight loss program but a Life style change. Learning when to eat the different food groups and the portions. But this also included excerising. The thought of putting it back on is really depressing.

Title: Re: A place to vent
Post by: Patti UT on June 01, 2007, 07:48:07 pm

There There Now,   see how quickly this thread settled down and became a venting arena for us who are caryring around the extra post surgery weight.  Now that's something I can really VENT about. In fact I want to RANT about it, cus about it, scream about it..  I had the opportunity to go on the weight watchers journ y along with gennysmom in Jan, should have, seh's dropped her 20lbs. and her it is summer and I still got mine. Like everyoneelse her has seai, The lack of being able to be mobil has really packed it on.  More  frustrating is when I do get going on exercise,  I can't stay consistent dur to too many bad head days.  But I keep chipping away at it best I can but agree it is very discouraging.  SKirt, Hell, I'm going to visit Omar the tentmaker for my swimsuit this year.  (he he he)

All joking aside. I have taken a long break from this forum that has helped me so much in so many ways. I got to a point I needed to kind of see if I could move on from talking about it over and over.  The break has helped, but coming back now and reading the venting here on this thread helps me to realize that no matter how much fooling I do of the world around me that I'm Ok now, But truth is, I'm not. All the stuff listed in these vents I share with all of you, I don't need to mention them because you all have covered all of them. But It's this forum that is the ONLY place I can come to find the support and understanding that NO ONE else can give me.  So thank you all, like I've said before on past posts,  I owe you all $100. per hour for the therapy.

Oh and BTW, Matti, would you turn that darn car alarm off already, my neighbor just told me it was still going, of course I can't hear it even with me good ear over the tinnitus. LOL  That is hillarious, what else can we do but laugh.  Fell down in my driveway a bit ago looking up at the house with the satalite TV guy, then after getting up, turned too fast and walked into the wall. it was 9am, sure he thought I was hitting the bottle already. All we can do is laugh, but sometimes we do need to vent about it.

Patti UT

Title: Re: A place to vent
Post by: Jeanlea on June 01, 2007, 09:07:33 pm

Okay, my turn to vent about a weighty issue, my weight.  I am lucky in that I can exercise without any problems.  But the food end is where I have a problem.  I haven't gotten over the "I had a brain tumor and can eat what I want."  It's also really hard for me to stick with it, when I know the body is attached to a face that is no longer working properly.  It's hard for me to get past the fact that my face isn't looking right so why should I worry about the rest of me.  And then there's the chocolate that keeps calling my name...
Jean

Title: Re: A place to vent
Post by: Jill Marie on June 01, 2007, 09:29:59 pm

Oh the weight of it all!  I Love this thread!  Everytime I thinki there is nothing more to post about someone comes up with an issue I can relate too!  While the boys where in there grade school years my husband and I gained about 20 pounds.  We joined a gym, lost the weight and were having fun.  A couple of years later I broke my leg, 2 weeks after finding out I had a tumor.  I spent the summer on the couch with a tri-lateral leg break and a Facial Tumor recovery.  On came the weight, lost some, gained some, lost 20 pounds a year ago, need to loose another 10, you guys give me hope and inspiration.

My vent for today is not AN related, I was really looking forward to the weekend, feeling upbeat and all.  Then BAM, I got rear ended while driving to the bank for my company.  Luckily my pickup had a hitch on it so it didn't do any damage.  However, I didn't have a hitch so my back and neck are giving me some trouble, got the heating pad on as I post.

I feel better after reading the posts, kind of ironic isn't it, feeling better after reading about others problems.  I feel better because I see that your problems are my problems too!

PPearl - so glad you posted your vent.  Now I see you as ALL of you not just a moderator.  I understand your wondering what medical issue actually causes what side affects.  I wonder if I'm the way I am because of age, is it because I broke my leg falling and fear falling again or is it because of my eye and the ointment I put in it that causes me to see things differently?  You do indeed have a reason to vent!

 

Title: Re: A place to vent
Post by: Gennysmom on June 01, 2007, 11:30:29 pm

Jill Marie....luckily the weather here in Seattle has been gorgeous this last week (I mean it's raining cats and dogs, wink! wink!)...I'm assuming you live out here somewhere since you went to Mangham....and I'd rather get outside than sit inside and eat.  I'm sorry you got rear ended today....as someone just coming out of some back issues and venting about now dealing with regular health issues in addition to the AN, I can relate.  My heating pad is my best friend, and we sleep together a lot  ;) 

Jean...try feeling that way with your mother living with you taking care of you post surgery constantly running to the store to get you treats to  make you feel better!!!!  I still do that, but try to be better at least 51% of the time.  I think my parents declining health helps give me a reason to get up and stop munching on chocolate....besides wanting one more reason to be more like myself before surgery, and I also don't need any more health issues to deal with....anything to decrease that risk I'm all for.   

Title: Re: A place to vent
Post by: amel on June 01, 2007, 11:45:16 pm

I've been wanting to vent for a long time - great idea.  Let's see...tinnitis and hearing loss are nothing I want to live with.  I can't believe this is my fate.  It's frustrating speaking to clerks in stores or servers in restaurants because I barely hear them - and you're not going to go into your life story and explain everything to them.  I guess I can handle the stares from people when I'm walking with my cane, but I really want to know what's so odd looking to them.  I also get stared down by older people when we park in a disabled spot with my permit (they sometimes stop staring when I get out with my cane - or they stare more).  People I know who see me tell me "I look great" and they're glad I'm doing so well.  I reply thank you, but I think "I don't feel great, and what makes you think I"m doing well?"  Loss of independence is also rough, which causes me to do more than I probably should.

I also am so ready to jog and lift weights!  The summer is not a time to go up a pants size.  Ok, one more vent - I miss music in stereo. Ok, one more vent - it's Friday night and I'd like a glass of wine, but I'm still taking pain pills because it's the only time I feel somewhat normal on my surgery side of my head.  Now I'm done - that felt great! 

Title: Re: A place to vent
Post by: neal r. lyons on June 02, 2007, 11:50:25 am

Ya know just listening to someone else's woes can make you feel bettter! It's also informative.  I haven't even had surgery yet.  Will at House Ear Clinic sometime this month(Translab) Unless i change my mind again of course.Hummm, all these things -loss of balance  , adjusting to deafness, dealing with insensitivity. I'm sorry, i just will not think about them much, or?  Ya know i really don't think i have all that much to complain about.  I,m so much better off than many, for which i need to give thanks.  but wait just a minute- i,m supposed to be in Alaska right now working and getting lots of overtime in what was(is) going to be my last season working for Blm Alaska Fire Service>  I,m supposed to be in an airplane flying over the friendly and beautiful skies of Alaska,having strapped down 4000 lbs. of cargo which we are delivering to a remote airstrip to support wildfires.  We,ll drop off the supplies and then go pick up a 20 man hotshot fire crew and deliver them to another airstrip in Alaska  where they'll be deployed for another fire.  I'm not a pilot but the guy responsible for the cargo(loadmaster)   Well i am really missing the fire season in Alaska and going out with a big finish!  This is my 27th consecutive season.  But you know i still feel like a lucky guy!  I,m going to get this damn tumor removed, pray for minimal complications, recover, and perhaps even salvage part of the fire season.  Hell, even if it doesn't work out, i'll probably retire anyway!   Thanks everybody  Godbless  Neal

Title: Re: A place to vent
Post by: marg on June 02, 2007, 02:46:34 pm

This has been a great section to read. I think it took me a couple of hours to read all the pages, laugh, cry and feel like I have a family here who REALLY understands.  Thanks for sharing your stories.  I am  less than 3 weeks out from my AN surgery and have some things I'm dealing with too ( balance,  some facial paralysis  including an eye that doesn't close all the way - but hopefully will in a few more weeks and some tinnitus).  I'm grateful to be on this side of my surgery  - waiting 5 months for my surgery was forever.    I too grieve that music no longer sounds the same ( I was a singer/voice teacher  at one time), movies are hard to understand with SSD especially over the music....but closed captions are now my friend.  I am worried that I won't be able to go back to my 2nd grade teaching job next Fall (how do SSD  deal with a bunch of people talking all at the same time........ and that is ALL 2nd graders do).  
       One of the reading units I cover with my kids is called "Being Brave"  At the beginning of the unit the kids think that being brave means not being afraid.... but after reading several of the stories they realize that Being Brave means that you can be afaid- but you still do what you need to do in difficult circumstances.   I see all of you as very brave people ...who on a daily basis deal with difficult situations that don't always get better.  I appreciate you.  Thanks for being here.
Margaret

Title: Re: A place to vent
Post by: matti on June 02, 2007, 05:53:43 pm

marg - Jeanlea has SSD and teaches elementary school. She recently got a TransEar hearing aid and has found it helpful.  You might want to contact her, I know she will be of great help.

Cheryl

Title: Re: A place to vent
Post by: Jeanlea on June 02, 2007, 07:20:41 pm

Hi Marg,

As Matti mentioned I teach in an elementary school.  I teach 4th graders.  They talk as much as second graders only louder.  lol  I taught them for a year without any hearing aide. It went okay.  This year I got the TransEar.  It doesn't seem to do much until the few days I forget it.  Then I notice it.  I found myself cupping my hands around my good ear to capture more of the sound.  I was just thinking that I don't do that anymore.  (Except for today when once again I forgot my TransEar. I was in a hurry to go to my son's track finals.  Their team won the championship!)  Anyway, my teaching was not hindered in any way because of my SSD.  And walking between desks and small children is good for balance.  I reminded them to keep their hands in their laps when they sat on the floor so I wouldn't accidentally step on them.  I don't think I really would have, but any tricks that work I use.  Lol  Good luck going back in the classroom.  Nice that you will have the summer to recooperate.

Jean

Title: Re: A place to vent
Post by: 1wareagle on June 02, 2007, 07:35:19 pm

Hi Everyone,

I have been reading all the post on this topic since day one. I feel like I know all of you a little better now. I have laughed, cried and mostly understand what a lots of you are going through. My surgery left me deaf in the AN ear and I have all the facial problems too. All of your stories seemed so much larger than mine that I felt ashamed to complain, until now!

I got off work early today to attend a good friends daughters wedding. Wedding are not my thing but I felt like I had to go to this one. To get out in large gathering now makes me so uncomfortable with SSD, (not to mention my droopy face). The BAHA helps a lot but not in large crowds. First I sat on the wrong side of my wife and family. I couldn't hear them tell me anything! When I tried to talk, my daughter told me I talk too loud. So I just sat there and tried not to embarrass her. Well we got through the wedding and made our way to the receiption. I forgot to mention there were around 350 people at the wedding. As we made our rounds around the tables to eat I tried to speak to everyone. Right before I got to a table to sit down to eat a lady came up to me and started to fuss at me. She said she had tried to speak to me 3 times at the punch table and I just ignored her. I said I'm sorry but I lost my hearing in my right ear. She said your wife told me that, I guess you have all the excuses now.......Blind and can't hear!  I felt bad the rest of the evening. When we got home I asked my wife what she told her. All my wife told her was that I lost my hearing, she told her nothing about my surgery and all my other problems. She thought she knew. I guess the lady now just thinks I made it up about my hearing. After this experience it will be a LONG TIME before I have any desire to be at any kind of function in my town. Now I wonder how many other people I probably offended.

Sorry for the vent but I feel so much better now!

Ellis

Title: Re: A place to vent
Post by: TP on June 02, 2007, 08:36:48 pm

Ellis, I totally understand. I miss half of what people say and my daughter (she is 17) seems to be bugged the most when she has to repeat herself because I can't understand what she is saying most of the time. When I remind my family of my ordeal (which I seemed to do quite often) they get all nice and supportive for about an hour but they too are insensitive at times.

My venting for today is I am sick of my double vision.  ::) I am approaching my year anniversary of my AN removal and have been seeing double for one year. I have an appointment on June 11 to see a specialist, I have not talked to them yet but I sure hope they can fix my eye.  I will live with my facial issues but I WANT MY EYE BACK! I AM SICK OF WEARING BLACK TAPE ON MY GLASSES!

Title: Re: A place to vent
Post by: Sue on June 03, 2007, 01:34:47 am

Here's my vent today.  I think that all parking lots should have a section just for SUV's and Trucks and a section just for sedan type cars.  That way, I could find my car in the lot, and I could back out of the parking space much more easily because I could see where I was going!!  See, sometimes I can think of other things besides my stupid AN!!   :D

S in Vancouver USA

Title: Re: A place to vent
Post by: Captain Deb on June 03, 2007, 07:09:31 am

Sue,
Just think, when the Bush/Saudi oil Cartel pushes gas up to $5.00 a gallon, we'll all be trading our SUVs in anyhow.  Just give it some time!

Capt Deb 8)

Title: Re: A place to vent
Post by: matti on June 03, 2007, 11:03:20 am

A few times I have forgotten where my car was parked and then in desperation pressed my key alarm, only to be in bigger trouble because of the SSD and no directional sound :D

Cheryl

Title: Re: A place to vent
Post by: marg on June 03, 2007, 11:41:00 am

Hi Jean,
   Thanks for the encouragement.  I am glad I have the summer to recoup.  I too go for any "tricks" I can use with the kids.  I will be sure to try the 'hands in your lap' so I don't step on them  :).   I have a hearing test a week from Monday to see if I have any hearing left.  I really can't tell yet (still feel like I have fluid in my ear) but ..... sometimes I think I hear something..........who knows.  Anyway it is nice to have an option that can help me teach my last 5 years.... I want my full retirement !.  Actually it will be 35 years in teaching by then ( I taught  1/2 time for several years with my girls were little so this year is Full credit of 25 even though I have taught for 30).  Also encouraging to know that you were able to teach with SSD.  How did you use an overhead projector?  I had enough problems with it this year with the loss of some hearing in my AN ear.  I'm thinking of asking my district for an 'Elmo' in my classroom. It  doesn't have a loud fan and I would be able to  hear the kids. 
     Today for the first time when I woke up I 'felt like me' again....of course that was before I put my glasses on (left eye doesn't close all the way) and got up (felt like I was walking on a rolling ship) and looked in the mirror ( a 1/2 way working face) .....  lol......  anyway, I'm glad I Feel better. ::).  I will keep my focus.... it's not quite 3 weeks since surgery.... things will get better.
Margaret

Title: Re: A place to vent
Post by: marg on June 03, 2007, 12:06:03 pm

Ellis,   I have to say this....That lady was totally rude!  She is the one with the problem.....not you.  She could have asked your wife why you couldn't hear.  Don't let this keep you from going out.  I have not had my first 'outing' in a large group yet (and yes I am nervous about it)..... but my husband and I had a conversation about it yesterday and I told him if people said something to me about not hearing them, I would just tell them " I had a brain tumor and had brain surgery to remove it.... I totally lost my hearing in my left ear but I'm thankful to be alive."  After reading what you wrote, I'm going to ask my husband (and daughters) to just state the facts to people if they ask too.  We are the ones who have gone through most of the ordeal.... our families can help by giving information to other people if they ask them.  That will take some of the pressure off us.  As a matter of fact I'm going to tell my friends to feel free to share  with others too if they are asked.  Of course that won't help in groups where we don't know people...... in that case I'm thinking of having a T-shirt designed that says something like 'this ear works - talk here..... this one doesn't .....with arrows pointing to the ears.  I'm still working on it.....
  I do have other friends who have lost hearing in an ear because of other reasons and sometimes people think they are ignoring them..... I guess it's just one more thing to deal with.  Of course we don't want to offend anyone.... but this is something beyond our control.
Margaret

Title: Re: A place to vent
Post by: Joef on June 03, 2007, 12:44:08 pm

Funny thing happend this Christmas at my wifes office party .. they had a band .. very loud ... I hated it .. but my wife said "Dont stand with your feet so far apart like you allways do". .... and then it dawned on me.... she was right . Ive been doing that for YEARS at cocktail parties and such .. but I do it because its easier to balance ..... I've been doing this for years.. without realizing why.... and know we know the rest of the story..... ;)

Title: Re: A place to vent
Post by: Sue on June 03, 2007, 05:51:40 pm

Quote from: Captain Deb on June 03, 2007, 07:09:31 am

Sue,
Just think, when the Bush/Saudi oil Cartel pushes gas up to $5.00 a gallon, we'll all be trading our SUVs in anyhow.  Just give it some time!

Capt Deb 8)

My son told me yesterday that he was thinking about trading in his big red dodge ram pickup.  He just loves it...but I don't know what he was thinking when he bought it a not that long ago (18 mos-2 years).  Gas wasn't so cheap then either.  It's a pretty truck..hate to see him get rid of it...but it's a gas guzzler.

Anyway...Big vehicles on the right, small vehicles on the left!! :D

Sue in Vancouver USA

Title: Re: A place to vent
Post by: Jill Marie on June 04, 2007, 11:46:33 pm

Gennysmom, yep I live in the Evergreen State too!  I was born and raised in Goldendale (70 miles SW of Yakima, 30 minutes from The Dalles, OR).  I moved to Spokane after High School and never left.  Dr. Mangham is great as far as I'm concerned, oops, forgot this is the venting thread, tell you more later.  As for the back issues I'm doing fine now, used the heating pad (actually rice pack heated in microwave, works great) again Saturday night but doing fine now.  I have had a bit of trouble wtih my back over the years but have learned how to take care of it. 

Ellis, I read your post a couple of days ago and was so angry about what the lady(not the right term for her) said to you at the reception that I couldn't find the words to post to you.  I'm still having trouble but wanted to let you know that she is luckily a rare one, she would probably be that way to anyone no matter what the situation was.  It's like the girl I work with, she still doesn't undserstand that most of the people she talks to on the phone aren't mean & stupid like she thinks, I believe she is the one that provokes them so it appears they have a problem when she is actually the problem.  I'm sure you will find that most people are a LOT more understanding of your situation.  Please don't let ONE person keep you from doing what you want.  I'm sure we have all offended others some before our Tumors some after.  I recall going to my oldest sons middle school for a teach parent conference, as I entered the building I was a bit winded from walking all the way there and not looking all that cherry.  I met a teacher in the Hall and they asked if they could help me, I told them I was there for a conference.  He then said why don't you smile, it can't be all that bad, I said it's not, I'm just winded from walking 3 miles, he then said, then give me a smile, I said I can't, he said give it a try, I said I can't as I had a Facial Nerve Tumor removed a year ago and physically can't smile.  Someone once told me I was insensitive to say that, however I tried to let it go but he wouldn't let it go.  I didn't want him to think I was a cranky person so I told it like it is!   :o

Title: Re: A place to vent
Post by: 1wareagle on June 05, 2007, 08:35:48 am

Thanks Margaret and Jill Marie for the understanding words. I had to let you know what just happen. The LADY ,who was so rude to me at the receiption, came to my job just now to apologize. She must have went to someone complaining about me not speaking. That person must have set her straight. She said she would have never said what she did if she had know about my surgery. I played like it didn't bother me and that I was glad she had not noticed my drooping face. But it did bother me and I hope I never do the same to anyone else.

Ellis

Title: Re: A place to vent
Post by: Gennysmom on June 05, 2007, 03:29:14 pm

Jill Marie....so the other side of the state!  My best friend is living now outside of Davenport/Reardon.  I'll have to give you a jingle if I head over to visit her!  I'd love to now, but she has 2 boys, one is 2 1/2 and one is 10 months, and I just can't take it after surgery.  I love them all, but the thought of being trapped in the boonies with 2 loud kids makes me want to take an Ativan right now.  I don't know how you ANers with small kids do it, I have a huge amount of respect for you all!!!!!

Ellis, I hope this teaches her a lesson that she can't judge a book by it's cover.  Good for her to come apologize. 

I'm in a great mood today, but I'll add a vent just because I know it bugs me...and I'm thinking about it as I listen to you guys...other people's expectations of your surgery recovery...and that you have to keep constantly reminding them of your condition so they don't judge your behavior as lazy, insensitive, uncaring, etc.   And as much as others may get annoyed at us saying "what" all the time, I get tired of saying "I'm sorry, I can't hear you, you're speaking into my bad ear".  Nothing earthshattering, but just one of those straws that builds up.   I am extremely thankful to my better half who has yet to do any of that.  He is constantly vigilant in being aware of and attending to things I am now deficient in.   Three cheers for that!!!!!   My mom still can't remember which side I'm deaf in, so I really am aware when those I'm close to take that extra effort to notice. 

Title: Re: A place to vent
Post by: Windsong on June 05, 2007, 03:55:37 pm

A grey day here... cloudy and cool and I'm feeling glum....

It might have begun on the weekend.... let's see, i went off to buy this chair and although I had my cane looped over my wrist i might have grabbed my back once or twice as it was bugging me... as I left the lady who served me was outside having a cigarette and asked me curiously if i might have arthritis... she did and noticeably so whereas I look like nothing is wrong with me...so, i blithely said um a bit but other things bother me more....after mentioning that I had this "thing" in my head and one or two other "maladies" too my mind drew a blank hahaha as I couldn't recall any more on my list....even when i have to see a new doc about something i draw a blank sometimes... i s'pose I could have a card made up and laminated which i could whip out of my purse?

Then i picked up a bunch of movies, and grabbed the wrong boxes which a nice clerk kindly pointed out, so i replaced them,  got the right ones, accidentally knocked over a bunch more onto the floor, and muttered something about being ah "mentally.... challenged"... (forgot what i was saying in the middle of the two words so that was the best i could come up) to which he said ah "you're not the only one, we all have days like that".... so i smiled and said "nice to know I'm not alone in that"  and decided not to mention the health stuff of course...

Then I got a call about a former colleague who is having to take early retirement now due to health and did i want to go to the party....and i have realized no i don't....but i still feel bad about that as I think i should.... but I am avoiding it as i feel too glum being reminded of my own no-choice-early-retirement all of a decade ago... you'd think i'd be comfortable with that by now and most of the time i am...but nope i see i am not right this very moment...

When I had my An treatment four of us who worked together were all having treatment of some sort at the same hospital and a fifth at another.....makes me think oh forget about the cell phone, and what was in that building that got us all, anyway....

Well, tomorrow is another day and three family birthdays are being celebrated so I know i'll cheer up....just one of those days today I guess....

Title: Re: A place to vent
Post by: marg on June 05, 2007, 05:23:05 pm

Ellis,
    I am so glad that the lady apologized... and that someone 'set her straight'.  It did take courage for her to come to you.  Maybe next time she jumps to a conclusion she will think about what happened at that wedding reception and give the person the benefit of the doubt.  We sure learn a lot more from our mistakes than our successes.  And I say Hurray for the person who set her straight... that person sounds like a good friend to me.
Margaret

Title: Re: A place to vent
Post by: Jill Marie on June 05, 2007, 11:36:47 pm

Gennysmom,  I've been to both Davenport & Reardan many times.  My husband and I love small towns, I grew up in one and he wishes he had.  If you head over this way let me know ahead of time, perhaps we can meet there.  I totally agree about having to explain to others that you didn't hear them, one time I was at a meeting and two groups of people were talking at the same time & I asked that we all keep on the same subject.  One lady said what's the problem, you have 2 ears to hear with don't you?  I said, NO I don't, I'm deaf in the left ear, besides I only have 1 BRAIN to process what I'm hearing. I should have felt bad about making her feel uncomfortable but I ddin't as she had a bad habit of talking to others when she should have been listening to those running the meeting.  My better half does a good job of helping me too, he tells me when someone is talking to me and I don't know it. He sits on my good side so I can hear him, unfortunatley that means someone who doesn't know I can't hear on my left side is sitting on that side. 

Windsong, I'm glad you have some family birthdays to celebrate and cheer you up.  I too grabbed the wrong movie boxes the other day.  I usually rent movies from the grocery store and there you don't run into that problem, however, I went to Hollywood and didn't realize they left the display boxes out and you needed to pick up a NON display box, I thought the display box just meant that you took that box to the counter to get your movie.  Now I understand why their is no description of the movie on the back of the display box, DUH!   

Title: Re: A place to vent
Post by: Ellenmn on June 06, 2007, 06:16:06 am

Some of the people here at work are starting to find out about my AN and up coming surgery and are starting to treat me like I'm an invalid. I'm an IT Manager and we a staff but I contract out some network needs. To keep expenses down I do allot of things myself like setting up PCs and Printers. Anyway the other day I had to move two people to a different office and then I had a PC down in another area so I had to bring in a replacement. Well I come in several hours before anyone else so I had all the moves done before anyone got in. I must have had six different people come up to me and asked me if I should be doing that, why didn't I wait for one of the guys to come in.
Yes I may have facial spasms, slight balance problems, hearing loss, and headaches, but the rest still functions perfectly fine.

Title: Re: A place to vent
Post by: Jill Marie on June 06, 2007, 11:04:13 pm

Ellenmn, I know you know your coworkers are just trying to show concern for you put it's still frustrating to feel like they think you can't do your job or more imprtantly make you feel like perhaps you won't be able to after surgery.  You will of course have some down time but hopefully all goes well and you will be back at work soon. 

A few years ago the place I work at had an armed robbery so we added on to our counter, we put up a wall made of wood and grated metal that was hard to look through, we also put in a door that would lock.  Do to some changes in the law we will be doing a lot more paperwork and therefore making the customers wait in line longer.  To help speed things up we have done away with part of the wall so we can help 2 customers at once.  There is now a big hole in the wall while we figure out how to change things.  One of my coworkers locked me out today so I jumped up on the counter and slid head first through the hole and landed on my feet on the other side.  As I approached the counter the girl I worked with said, "I bet you can do it, Jill!"  As the guy that locked me out prepared to pick up the pieces.  Another coworker came in and was told about what I did, and he said aren't you "50?"  Yes, I am but don't tell me I can't do something & don't encourage me to do something because I will.  Goodluck with your surgery! 

Title: Re: A place to vent
Post by: Captain Deb on June 18, 2007, 02:47:28 pm

Well, OK I need to VENT!!  I reached the $2000 cap on my prescription benefit with BCBS and it's only JUNE!!!!  Now I get to pay retail for my meds which just SUCKS! I've got to decide which ones to stay on and which ones to not.  Sleep meds and antidepressants I guess will go as well as HRT..I guess Dr Love will have to put up with a sleep-deprived, depressed, and homocidally hormonal menopausal me. My Imitrex alone will cost around $200 not to mention the Neurontin at around $100. I'm on another med called Imipramine with will run another $50-60. My a$$ is definity chapped over this.

GGGGGGGRRRRRRRR................

Capt Deb 8)

Title: Re: A place to vent
Post by: Ellenmn on June 18, 2007, 03:15:08 pm

Quote from: Captain Deb on June 18, 2007, 02:47:28 pm

Well, OK I need to VENT!!  I reached the $2000 cap on my prescription benefit with BCBS and it's only JUNE!!!!  Now I get to pay retail for my meds which just SUCKS! I've got to decide which ones to stay on and which ones to not.  Sleep meds and antidepressants I guess will go as well as HRT..I guess Dr Love will have to put up with a sleep-deprived, depressed, and homocidally hormonal menopausal me. My Imitrex alone will cost around $200 not to mention the Neurontin at around $100. I'm on another med called Imipramine with will run another $50-60. My a$$ is definity chapped over this.

GGGGGGGRRRRRRRR................

Capt Deb 8)

Write to the companys that make the meds Many of them have program for people who can't afford them. Or maybe talk to your pharmacist to see if they know of the programs available

Title: Re: A place to vent
Post by: TP on June 18, 2007, 03:35:59 pm

Captain Deb, I am sorry to hear about reaching your max prescription benefit. As a suggestion, have you tried Melatonin? I recently bought the dietary supplement to help with sleep. I haven't had the need to take it yet but friends of mine use it and they say it works.

Title: Re: A place to vent
Post by: Raydean on June 18, 2007, 03:45:53 pm

Deb

Time to get on the phone.  Call your Pharmacy and find out the makers of the drug.  From there
go online and contact the makers directly.  I've heard of cases where dealing direct with the company helps.  Many of the programs are based on income and I think you'll end up in the same boat we were in, just over the limit for help.  So this post will be from that perspective.

Contact your insurance, some will have you pay a certain amount then they'll start paying again.

Call around for the best prices.  Your neighborhood just around the corner pharmacy may not be the cheapest.  You would not believe the amount that the same prescriptions can vary.  Depends on the contracts.  Some pharmacies will keep the most popular drugs at a discounted price, but raise the price on other medications to offset the reduced price.  You could very well be helping to pay for someone else's medication!!

Ask if the drugs are available in generic versions.  Ask what the savings would be for buying in bulk,
 Ask what a 30, 60, 100, 200 size  would cost.  You'll be surprised at the savings.

Talkto  your druggist, ask what might be available under a different name.  As an example Chet took augumentin,  which when we had coverage not a  problem, but it became a big problem without drug coverage.  I explained the situation to my pharmacy and they did some research and found it came in a generic at 500 mg.  Saved us big bucks!!  (Thank you Walgreens)  I can't stress enough how important it is for you to talk to a pharamcist directly, explain the situation.
In our situation Costco was cheapest for one of his drugs and Walgreen's for the other.


Hit those doctor's up for free samples. 

Do your homework, research and find the cheapest place for each prescription. keep a written log. Then talk to your local pharmacy, sometimes they will match written quotes,  remember you have to call and ask because I don't think by law that they are allowed to advertise.

Check into the Canada Pharmacies that shipp, compare there prices.

Ask the pharmacies if there are any discount drug programs available for those who's incomes does not meet the criteria for help.  This may help in reducing costs.

Deb, I hope these ideas help,

Hugs
raydean

Title: Re: A place to vent
Post by: Captain Deb on June 29, 2007, 02:56:24 pm

Thanks so much for everyone's suggestions re: my crappy prescription drug benefit.  Good thing none of my meds actually help keep me alive, but most of them seem to offer a quality-of-life benefit.  I called my insurer, who assured me that I really was not all that screwed.  Apparantly I recieve a bit (a wee bit) of a "discount" anyway after my benefit was used up.  I've gone off the expensive anti-depressants and sleep meds, and I plan to beg Imitrex injectable samples from my doc, your doc, and anybody else's doc that I can think of.  I'll message my address to anyone who can get it! Everything else I'm on is generic except my HRT which I refuse to give up.  Hot flashes were keeping me awake all night, and lack of sleep is a huge headache trigger for me.

Thanks again
See you in Philly!

Capt Deb 8)

Title: Re: A place to vent
Post by: Brendalu on June 30, 2007, 05:36:20 am

Okay, now I need to check my insurance for the fine print.  Because my meds change so often my docs give me samples as often as they can and I do ask for them.  All of my deductibles went up for scripts.  My docs have started writing a stronger dosage for me so that I get double the pills.  If I receive a sample that doesn't work I take it back to the doctor so that she can recycle. 
Sounds like it is time for a Boston Drug Party!  Keeping you in my prayers, Capt. Deb.
Hugs,
Brendalu

Title: Re: A place to vent
Post by: Windsong on July 07, 2007, 09:41:47 pm

Off topic re geraniums..... what eats them?

I was at my summer shack today and discovered a bunch of geraniums were not only uprooted and lying on their sides in this flower bed, but someone/something had chomped off flowers and stalks... i know we have raccoons around and deer and squirrels and chipmunks.... but eating gernaiums???? never had this happen before....
any ideas about this are welcome, thank you!  ???
windsong

Title: Re: A place to vent
Post by: Cheryl R on July 08, 2007, 07:06:51 am

I have had raccoons dig up my plants in the pots on the deck.  Very maddening!      Also have seen chipmunks do it in a pot on a table.                Something is chewing on my husbands hostas too.    Probably deer or rabbits.   I live in the country.             I have heard someone say they are using a product called Liquid Fence on their hostas  with some success.       It has to be redone after a rain though.              Surprised me though to hear of the plants being dug out of the ground.     
                                         Cheryl R

Title: Re: A place to vent
Post by: Windsong on July 08, 2007, 11:15:59 am

Thanks... i'll go check out that liquid fence.... my hostas disappeared too a couple of years ago...i only have one left lol... i know the deer have wandered through.... the squirrels tend to dig in the potted plants.. I'm tempted to scatter river stones around all of them...... one neighbour out there has put moth balls in her pots lol....the one thing that hasn't been touched is all the herbs growing in various pots and the begonias!... oh and the petunias....

Title: Re: A place to vent
Post by: Captain Deb on July 11, 2007, 04:53:37 pm

I know what works for us with varmints! Dr Love pees around the perimeter of our yard. It really works! No we don't have neighbors who can see. lots of trees and woods surround our house. Don't tell him I posted this.


Capt Deb

Title: Re: A place to vent
Post by: Larry on July 11, 2007, 05:29:57 pm

Bin lingering a bit without posting much and spotted this one - very aptly named.

i was watching an old episode of Enterprise on pay tv last night which i was hoping could happen here. the captain's head was infiltrated with bacteria from a different time line. It meant that he could only remember stuff before the invasion and the entire future time line was nasty until the good old doctor created a cure and as soon as those invaders were expelled from his head, the original time line re-appeared. Now where am i going with this (I don't know really, just venting!!!). Anyway, everything liveed happily ever after once those b....s were zapped. Kinda like our AN's really. Bring on Dr Flox and his magical cure - we don't want any more headaches.
Slight problem with the cure but - need the power of a warp engine to generate enough zap to zap the beasties. As warp speed (greater than the speed of light) is deemed virtually impossible, we may be waiting a while.

Sorry guys, but feel better after kicking the cat so to speak.


laz

Title: Re: A place to vent
Post by: Static on July 11, 2007, 07:02:34 pm

OMG Deb, that cracked me up so much!!! and after reading all those vents and thinking about my own, I really needed it!!! LOL   

Title: Re: A place to vent
Post by: Betsy on July 11, 2007, 08:04:01 pm

Deb, I love it!  You can buy "predator pee" at farm stores, but it's much more fun to use the home-made variety.  Thanks for the smile!

Title: Re: A place to vent
Post by: ppearl214 on July 11, 2007, 09:04:00 pm

Tell my dear Dr. Lurrrrrrrrve that he has now one-upped me vs. my crying baby canadian goose.... Dr. Lurrrrve is one sick (but funny!) puppy! You can tell him I said that! :)

xoxoxoxo

Quote from: Captain Deb on July 11, 2007, 04:53:37 pm

I know what works for us with varmints! Dr Love pees around the perimeter of our yard. It really works! No we don't have neighbors who can see. lots of trees and woods surround our house. Don't tell him I posted this.


Capt Deb

Title: Re: A place to vent
Post by: Brendalu on July 12, 2007, 05:12:16 am

I got my laugh of the day!  Thank you all for that one!  As a former hairdresser, at the end of the business day I had a couple of farmers who would come in and get my haircuttings of the day.  They placed the hair around their gardens or whatever they didn't want disrupted.  They provided the bags so the hair was kept seperate from the other garbage.  I thought that they were a little looney until I had dear getting into my vegetable garden.  I put some around my plot and no more deer...........I put a salt lick in the field for the deer.
ust my two cents................Brendalu

Title: Re: A place to vent
Post by: Captain Deb on July 23, 2007, 09:53:04 am

What I don't get is how a forum member can begin flaming other members posts, then proceed to hurl vulgar personal insults  at other members in particular, and send threatening personal messages, get banned from the Discussion forum for life, then less than a year later begin to post again under an alias and then finally start signing his own name again like nothing happened. I don't care how smart or well-informed this guy thinks he is. Banned for life is banned for life in my book.  This person is just thumbing his nose at the forum administrators with no consequences. You all know who this is. Time to let your feelings be known to the ANA folks.

Capt Deb 8)

Title: Re: A place to vent
Post by: Larry on July 23, 2007, 08:46:02 pm

here here Deb,


laz

Title: Re: A place to vent
Post by: Static on July 24, 2007, 08:13:03 am

I believe that same guy is why I left the old forum (list serv), he was always starting arguments with someone and seemed to know everything.  It seemed like everyday it was influx of mail that was a bunch of arguments and fighting and I just couldn't take it anymore so I left.  This forum is much better but .... BUT.... the nonsense is still totally uncalled for.

Title: Re: A place to vent
Post by: matti on July 24, 2007, 10:54:06 am

Static - I agree with you and is the same reason why I left several years ago. I needed support and comfort, but many times I was chastised for not understanding the scientific side of AN. I understand that it is difficult for some to show a caring side and may show it in other ways, but this AN journey can be rough at times and the last place I want to feel worse, is on this forum.  Thank goodness for Raydean and Chet who always kept me afloat.

Cheryl

Title: Re: A place to vent
Post by: Static on July 24, 2007, 05:44:31 pm

Yep, same here Matti.  I felt like I didn't want to say too much cause I really don't retain things very well, especially after the surgery and I really didn't understand alot of the scientific stuff.  There's no way I could've taken notes or remembered things like KRbonner or Gennysmom or any of the others did from the symposium.  Things will come back to me here and there, but I totally suck at taking notes.  I take it in as it comes and makes my decisions with that.  Raydean was there for me while I was making my decision too.  Not sure if she remembers me tho.  I was under list serv as Karen, (I may have used a last initial, not sure).  Anyway, the forum is way better now, and we don't want it messed up, that's for sure!
~Karen

Title: Re: A place to vent
Post by: lori78 on July 24, 2007, 08:09:29 pm

Already said, I know... but.

Why shouldn't we have a place to vent?  I go to work every day, help disabled people discover MUSIC (no tinnitus, Thank God) and come home exhausted.  I am a therapist trying tol live this life, understand why bad things happen to good people, and my right to vent should be 'toned down'?  AND is NOT G-rated.  Nothing about it is.  While we are here to support each other, we must remember that venting is healthy.  Why do people hit punching bags, work out like mad, etc?  We all have ways of taking out our frustrations, and if our medium is IM and words, then peace!  I AM SCK OF BEING SICK OF THIS DEBATE.  VENT AWAY!!

Title: Re: A place to vent
Post by: Captain Deb on July 25, 2007, 02:02:26 pm

Lori--
there is a big difference between venting and hurling personal insults and threats at another forum member, which is what this person did a while back.  I agree we all gett really angry at our situation from time to time--venting is healthly and this is a good place to do it!

Capt Deb

Title: Re: A place to vent
Post by: linnilue on July 25, 2007, 04:16:49 pm

Hi all,  Could you maybe tell the rest of us what is going on here?  Is there someone that we are suppose to be aware of or something?  I've been watching these posts for a few days and now I jsut have to ask, what is going on?  I'm curious but if it's something private then I won't ask.

Title: Re: A place to vent
Post by: TP on July 25, 2007, 06:09:30 pm

Nikynu, I was wondering the exact same thing. I was searching thru the posts and couldn't figure out who was this guy/gal.

Title: Re: A place to vent
Post by: linnilue on July 25, 2007, 08:46:45 pm

Thanks for the update Bruce.  Since I am only a member for a few months now, I was taken aback by this but it has been explained quite well and now I can move on.  I think I need to hear some more news about Lindsay Lohan, so back to the news.   ;) :'(   Thanks.

Title: Re: A place to vent
Post by: matti on July 25, 2007, 08:51:44 pm

Apparently Brittney is back in the news as well, but at least Paris is behaving herself (this week).   

Cheryl

Title: Re: A place to vent
Post by: lori78 on July 25, 2007, 11:08:34 pm

Thanks.  I am obviously a very (stubborn...aries) newbie!!! :)

Title: Re: A place to vent
Post by: Captain Deb on July 26, 2007, 10:37:10 am

Thanks for the update Bruce. Funny how this guy we're talking about has been signing the same name as the guy who got banned....hmmmm...

Now about Paris and Lindsay and Britney. Hope none of you come down with an AN. Then you will know exactly what reality is, ladies.

Be Well and Sail On,
Capt Deb 8)

Title: Re: A place to vent
Post by: Sue on July 26, 2007, 01:26:32 pm

Speaking of banned, I think the "Troubled Trio" should be banned from the news!! 

However, did anyone watch the show last night (Wednesday) The Next Best Thing that's about people who do impressions of famous people?  The finalists were so talented. One did Paris Hilton and she was hilarious. 


Sue in Vancouver USA

Title: Re: A place to vent
Post by: Mel on July 27, 2007, 05:54:34 am

I need to vent----------------but there IS so much.
Why do friends and family seem to be ignoring my AN!!  Why did a friend say to me " You are not having Brain Surgery", they're just pushing your BRAIN out of the way!!"?  Why am I thinking that this is a mistake? Not Real.  OH, the nooise runs me crazy at night so I use an old tick-tock clock, still hear the noise.
Is it going to go away after surgery?  Will I have headaches, never been much of a headache person.  Welllllllll, maybe these are just questions ???
I feel better now for the moment----Got to get to work
Thanks
Mel

Title: Re: A place to vent
Post by: Brendalu on July 27, 2007, 07:11:13 am

Mel,
I'm sorry you are having so many problems!  This is the place to unload them tho.........we understand.  Yes, it is brain surgery.  They may be "pushing" the brain out of the way but they are still "messing" with it.  The noises?  For some people the tinnitus goes away, for others it is worse.  I'm told that you learn to ignore it.  So far that hasn't worked for me, but I keep trying.  I still wake up some mornings and think I can hear and that having the surgery was just a bad dream.  Then I remember that it wasn't a dream, but I do wake up.  You just have to take one day at a time.  Sometimes I can only take one minute at a time.  I just do whatever it takes.  I would tell your friends and family that they need to start reading about the Acoustic Neuroma and its affects on you and start being supportive and be there for you.  Don't let them diminnish this problem.  It is a very big deal.
Hugs,
Brendalu

Title: Re: A place to vent
Post by: Betsy on July 27, 2007, 07:25:17 am

Hi Mel,

It's just overwhelming, isn't it?  There's so much unknown about these things.  Most of my friends are ignoring my AN too, in fact only one has even stayed in contact with me since the diagnosis and he's 500 miles away.  My family, who lives out of town, doesn't seem to know how to react, so it's like they're ignoring it as well.  I think they're scared too, so I try not to bring it up.  Once, someone at work actually asked me how I was and I practically burst in to tears...no one asks me that anymore.  And after my emotional reaction, that person is avoiding me!  It's so hard to keep this all inside.  Thank goodness for this forum.

The tick-tock wasn't enough for me either.  I'm trying one of those air cleaners now.  It's quieter than a fan, but it seems to do a better job at masking the smoke alarm in my head.

Betsy

Title: Re: A place to vent
Post by: Cheryl R on July 27, 2007, 09:09:28 am

Ok, duh!      I thought I had just lost the post I had started so surprised to see where it had went.    I was starting to say that it would be interesting to see what the friend would say if it was their brain  being operated on!       It might be a different story.
I even had my surgeon say it wasn't brain surgery to me when I called it that at an office visit.    Then several sentences later he called it brain surgery!           
I had a family dr tell me where I work prior to my 2001 surgery that he knew someone who had AN surgery.       Yeah, they just have the droopy face and can't hear out of that side.     No big deal.       I am glad I am not his patient.
 We have no answers for the tinnitis.               Not everyone gets headaches though.   I have been thru 3 AN related surgeries and have never had any.
                                                     Cheryl R

Title: Re: A place to vent
Post by: Captain Deb on July 27, 2007, 10:44:58 am

AN surgery has been called the "Queen of Brain Surgeries" and should never be minimized as not being real brain surgery. Sometimes those who love us tend to minimize our outcomes, symptoms,fears, because the reality of the situation is too overwhelming for them to cope with--it's not that they don't care--it's quite the opposite and is a form of denial.  I, too have been distanced from some friends and family, but most of that is of my own doing.

The headaches for me have been life-altering, but I had a family history of migraine going into this and was beginning to experience them mysself but not in the way I have been post-op. The tinnitus doesn't really bother me at all--I've never been a big fan of silence--I like to hear music, the ocean, waves slapping the hull, tree frogs, breeze in the palm trees etc. Now I have the ocean and the tree frogs with me all the time!

This journey needs to be lived one day at a time or it can eat us up.  My Headache Wizard said to me th other day that I could let my pain drive me crazy or I could go out and have as much fun as possible in spite of it. He is a very wise man for his young years--I wish every AN-Headacher could be treated by him.

Be Well and Sail On!

Capt Deb 8)

Title: Re: A place to vent
Post by: matti on July 27, 2007, 11:40:55 am

I also think people minimize our or anyones diagnosis/problems, due to fear and denial. First reaction is shock, second is to comfort and how most of us comfort is to say "it's not that bad, it could be worse or at least it's not cancer".  I am guilty of it, but IS it what I wanted to hear with my AN diagnosis, NO!!! Through my own journey, I found that I was the one doing the comforting with my family and friends and telling them it was going to be alright. I was scared, but so were they.  I really don't think people know how to react unless they are in your shoes.

Just throwing this out there, but before our own AN diagnosis and journey if someone where to come up to us and say "I have a brain tumor", what would you say?

Cheryl

Title: Re: A place to vent
Post by: ppearl214 on July 29, 2007, 10:42:03 am

Quote from: matti on July 27, 2007, 11:40:55 am

Just throwing this out there, but before our own AN diagnosis and journey if someone where to come up to us and say "I have a brain tumor", what would you say?

Cheryl

Unfortunately, I was introduced to "brain tumors" far too young in life... I wish I could answer your question but now when I hear it, it's a true mix of emotions but I try my best (not always succeed, but do try my best) to be as supportive as I can since I/we are now in the same shoes.

Not enough coffee yet today....sorry.
Phyl

Title: Re: A place to vent
Post by: sgerrard on July 29, 2007, 01:17:26 pm

Quote from: matti on July 27, 2007, 11:40:55 am

Just throwing this out there, but before our own AN diagnosis and journey if someone where to come up to us and say "I have a brain tumor", what would you say?

I might have said "I hope your surgery goes well", but been thinking "I hope you don't end up in a wheel chair speaking through a computer voice." I didn't know much about them, obviously.

One reaction I got was "just get really healthy and take supplements, the tumor might disappear on its own." Another was "that needs to come out", as if that were as easy as having a wart removed.

It seems to  help to explain that it is a tumor growing on a nerve. This helps convey that it is not growing inside the brain itself, but that it is in a very busy neighborhood, so treatment is not trivial.

Title: Re: A place to vent
Post by: Windsong on July 29, 2007, 01:20:30 pm

i like that phrase...."it's in a very busy neighbourhood"... thanks.. .that about sums it up doesn't it?

Title: Re: A place to vent
Post by: Lorenzo on July 29, 2007, 11:10:54 pm

Ya, a real spaghetti junction of nerves, with lots of traffic and little space to do road works without disrupting the rush hour.

Title: Re: A place to vent
Post by: matti on July 30, 2007, 07:41:49 am

Lorenzo and sgerrard - Thank you! I am using both of your explanations from now on, hope you don't mind  :)

Cheryl

Title: Re: A place to vent
Post by: Lorenzo on July 30, 2007, 08:59:09 am

LOL  Did I write that? Gees.  :D

Title: Re: A place to vent
Post by: Captain Deb on July 30, 2007, 11:20:12 am

I like the analogy of the tumor being located in the major fuse box of the brain, or at Ernestine's "One ringy dingy, two ringy dingies" telephone snake nest of a station.

Capt Deb 8)

Title: Re: A place to vent
Post by: Larry on July 30, 2007, 04:12:26 pm

yeah, I feel likee a ringy dingy most of the time.

Someone please invent a headache free day. I mean, I'll even tackle the sea monster with my bare hands. Just one day of no ringy dingies.


Laz

Title: Re: A place to vent
Post by: Captain Deb on July 30, 2007, 04:28:42 pm

No Spit! I haven't had a headache free day since I woke up from my surgery!

Capt Deb 8)

Title: Re: A place to vent
Post by: TP on July 30, 2007, 08:13:46 pm

For people who blow this off and say it is not "really" brain surgery, that is when I grab their hand and place it behind my ear and let them feel the 4 inch long 1/4 inch deep scar. That usually grosses them out and I get a good chuckle. It is amazing how insensitive "some" folks are to the notion you've had brain surgery. Fortunately majority of my friends and family are very kind and sensitive and really do care but there are a few who I categorize as clods.

Title: Re: A place to vent
Post by: Lorenzo on July 30, 2007, 11:53:22 pm

At least you got the scar to prove it! I haven't that either. All I can say is that I probably glow in the dark, inside my skull. Without physical evidence it's harder to convince them that it was real and that we did get major treatment.

As for the morons, we all have ways to deal with them. Now, I just ignore them, or snap their heads off, verbally. Depending on the mood of the moment.  :) 

Ciao

Lorenzo

Title: Re: A place to vent
Post by: Mel on August 01, 2007, 06:03:30 am

Why do I say, "They call it Brain Surgery, but I don't understand why."?, when I talk about my upcoming
surgery.  Do I say this to make my friends and family feel comfortable?  Why do I pretend that I feel wonderful
all the time eventhough on some days I would like to be a mole and crawl in a hole?
Ooops! Got to get to work!!   
Thanks  Mel

Title: Re: A place to vent
Post by: Brendalu on August 01, 2007, 09:27:35 am

I went to visit an older friend whose daughter (my age) had brain surgery two weeks ago.  I asked how the daughter was doing.  She said, "I don't know, all she does is cry when I go see her or call her so I don't bother."  I didn't want to explode at this woman, I was taught to respect my elders.  She further went on to explain that her daughter was afraid she was going to end up like her younger sister (deceased) who had brain surgery.  She then said all they did was relieve the pressure that a vein was creating on top of another vein.  The surgery was perfect and there is no reason for her to act this way.  I was amazed at this woman's attitude.  She totally and completely ignored her daughter's feelings.  I asked for her daughter's address and just on a hunch I stopped by to see her.  I let her cry for an hour with my arm around her.  She just wanted someone to understand what she had been through.  She, as I did, felt guilty because she survived the surgery. Her sister had not.  I got on her computer and showed her our forum and found some for her problem.  I gave  her my phone number and email address and will accompany her to her doctor's appointment on Friday.  Her husband found no reason for her to not go to work today!  I am just truly amazed by insenitive people.  Especially families.
Brendalu

Title: Re: A place to vent
Post by: Betsy on August 01, 2007, 10:31:15 am

I do the same thing, Mel, especially with my mother.  With her, it's an "ear problem".  What I really want is to tell her how scared I am and have her tell me it's going to be okay.  I've come to the conclusion that it would be worse to see my own fears reflected in her than to bear them on my own, so it remains an "ear problem" that needs to be "x-rayed" to be "fixed".

Brendalu, you did an incredibly kind thing.  You're my role model!

Betsy

Title: Re: A place to vent
Post by: Captain Deb on August 01, 2007, 10:38:57 am

And THAT is why Brendalu is a PBW member in good standing.  You gots some guts girl! Not to mention a big, big heart. Sometimes it takes someone who's been there to step up. Way to go.

Be Well and Sail On!

Capt Deb 8)

Title: Re: A place to vent
Post by: ppearl214 on August 01, 2007, 11:31:49 am

Brenda,

I commend you... and sending you MAJOR puggle-huggles for your humanity, your love of life and your unconditional heart..... you truly are a gawd-send.


I do have to comment about the mother's reaction. If I read it correctly, the younger sibling passed away (who did have brain surgery) and now, she's contending with child #2 with brain issues... in fairness, my mother (and father) are also dealing with the same. As many of you know, my sister died of malignant brain tumor (childhood astrocytoma) and now, me dealing with an AN (regardless of how many times I try to tell them it's benign).... so, in seeing my folks reaction to them having to deal with another child with a brain "issue".... I am actually not surprised.  I have witnessed what my folks handled with my sister.. .and now with me (and my multiple physical ailments)... it's kinda like what we share around here... "individual results may vary".. and if her mom is not reacting in the way we would hope, my hope is that with time and courage and strength, her mother will then be there for her as quickly as possible.  I recognize the support her daughter needs... boy, do I ever... but it's also (possibly) causing a "flash back" of what her mother went through in the past with her younger daughter.  Mom needs healing as well.

Brenda, who/what is the support network for this family right now?  As you have been there for the daughter, do you have any awareness of support for the rest of the family?  The family could be "reliving" the past and need the support as well.....

Just my opinion... may not be clearly stated but a thought that I try to share as clearly as I can write.....

Brenda, thank you SO very much for being there for them, even in light of your own situation.... you absolutely rawk.
 :-*
Phyl

Title: Re: A place to vent
Post by: Brendalu on August 01, 2007, 12:06:33 pm

Thanks all!  I only did what I would hope someone (you all have done) for me!  I agree, Phyl, that the Mom is having a hard time with this whole thing.  Unfortunately the daughter feels like her Mom is minimizing her surgery because she didn't have a tumor, just an extra vein growing on top of the other one.  She is having bad headaches, I totally understand, her Mom thinks they are for sympathy.  I feel bad for both of them.  The Mom has a great support group, but the daughter doesn't.  I guess I understand some of the daughter's problems which she says are because she is the middle child.  That's where I always was too.  I think that this gives me something that does take my mind off my problems!  That is always a good thing.
I'm sure the Mom is having major flashbacks.  I'm praying that she comes back to the present to help this daughter. 
Phyl, I'm glad that Beanie has a good belly scratcher!  Puggle huggles to you too!
Capt Deb, I need a book on pirate speak......any suggestions?
Bruce,  I get more good information from you than I do my doctors..............any new web casts?

Brendalu

Title: Re: A place to vent
Post by: linnilue on August 01, 2007, 03:28:06 pm

My God, Brenadalu,  Thank God for you.  That poor girl, my hear tgoes out to her.  I know how she feels though because my father and grandfather both died very young of cerebral hemmorhages.  When I was diagnosed with the AN, I thought that this brain stuff was "all in the family" and that I would die too.  Noone in my family understood because it wasn't th esame but to me it was, brain=brain and that was that.  I was inconsolable but had noone to console me.  My husband was sympathetic but the rest of my family wasn't.  So thank God you took the bull by the horns to help her.  She is blessed to have you and give her a hug from me becasue I get it!  Holly

Title: Re: A place to vent
Post by: Larry on August 01, 2007, 04:25:36 pm

The people on this forum (virtually everyone) never ceases to amaze me. So often in life we get despondent about non-caring, insensitive ignorant people that have one interest only (themselves) then we have people like Brenda, El capitan, the girly, Ms yodelay hoo hoo and others coz the list goes on, and you then realise that the selfish stereotype can be squashed with some human kindness that really doesn't cost much at all.

Great stuff guys.

laz

Title: Re: A place to vent
Post by: Patti UT on August 01, 2007, 05:35:16 pm

Here, Here Larry,  I'll def drink to that!!  My hat's off to you Brenda Lu,  keep on doing what your doing, cuz kindness can be contageous.

Love you all

patti yotee

Title: Re: A place to vent
Post by: Brendalu on August 01, 2007, 08:13:23 pm

The very reason I love this board....everyone supports and helps each other.  I never thought that anyone realized how much a kind word or a virtual hug means until I started posting and reading.  Y'all are the BEST!!!!
Brendalu

Title: Re: A place to vent
Post by: luckylady on August 01, 2007, 08:32:15 pm

Was diagnosed about 4 weeks ago - have to travel over 300 miles to Dallas, Texas for the treatment -- I thought I was handling this diagnosis well -- however I woke up this morning mad at the world.  I think it is the waiting to see what the physicians recommend treatment should be -- the very disruptive ringing tone in my left ear -- and the hearing loss --
Thanks for all the information everyone shares - it has been a lifesaver.....

Susan or lucky lady. ;D

Title: Re: A place to vent
Post by: Raydean on August 01, 2007, 09:08:26 pm

Hi Susan

Just a note to say hang in there and we'll hang with you.  Know that you're in our thoughts. Continue to use this waiting time to research your options.  Write down your questions for your Doctor, beginning with the most importand and ending with the list important.  This way the big questions will be answered.

It's ok to be mad at the world, I think we've all had days like that.  In the end I hope that you'll be like your screen name, one lucky lady!!!!

Big Hugs
Raydean

Title: Re: A place to vent
Post by: Patti UT on August 01, 2007, 11:25:23 pm

HI Susan,
    Please understand that you have just been told the unthinkable.  You will go through many emotions from fear, toanger, to wanting to blame someone, back to scared to death and angry again.  It is totally normal to go through the range of emotions as you digest the diagnosis. We have all been there and truely understand what you are feeling.  This forum and the wonderful people on it and the information you can gain from it will help you work through much of these feelings as well as help you in your decision making process for your treatment.  I am sorry you will have to drive so far. That makes it a bit harder.  I have the terrible ringing as well,somedays I it is very hard to deal with. But we all do get by and life goes on.
Take Care, My best to you on your AN journey

Patti ut

Title: Re: A place to vent
Post by: Brendalu on August 02, 2007, 05:05:25 am

Susan,
We are here for you and it is okay to be mad at the world.  I still have days when I'm mad at the world and it has been over two years.  I say why me and my little voice (the one I don't like listening to) says why not you?  It also tells me that I am strong enough to handle it and others might not be.  So I have to believe that.  You will too in time.  My prayers and thoughts are with you as you start this journey.
Brendalu

Title: Re: A place to vent
Post by: McFlorida on August 02, 2007, 06:26:24 pm

Well, I have just found the ANA forum, and after spending half the day reading it, I have found the perfect topic in which to contribute.  I was diagnosed on June 28th as having a 6 x 12mm AN on the right-side.  After having ringing and then a dip in hearing, followed by an MRI and ABR test, and a diagnosis, I find myself surfing the web for more and more info.  I had been to my family doctor, who sent me to an ENT, who sent me to a neurotologist, who is now sending me to a neurosurgeon.  It is funny because even with the constant ringing, the rise & fall of hearing in one ear, and the lightheaded feeling at times, my biggest frustration is the slow progress towards some yet-unknown recommendation and conclusion.  I know that this type of tumor is slow-growing, but come on!  Coming to a medical decision is like watching a snail race.  Who is going to win!? Observation? Radiation? Surgery?  Time to cut to a commercial.  I appreciate reading everyone's experience.

Title: Re: A place to vent
Post by: sgerrard on August 02, 2007, 08:33:22 pm

McFlorida:
Fun, isn't it? Not...
   One thing you will sooner or later realize, as you talk to all the docs, and do you research here and on the web, is that you have suddenly been appointed "chief medical decision maker for McFlorida", a title you probably didn't ask for.  You can find a doctor who will suggest Observation, another recommending Radiation, and another telling you Surgery, or maybe one who will suggest all three. In the end, you get to decide.
   It seems weird to me that the medical community has not worked it all out already, and that they leave it up to us, as if we knew what we were doing.  But, at least things are much better than 60 years ago, when survival was still the key issue.  I certainly have some days where the hearing loss and cricket chorus seem much easier to deal with than all this medical mumbo jumbo and anxiety.
Steve

Title: Re: A place to vent
Post by: Larry on August 02, 2007, 10:13:35 pm

McFlorida,

You will have to make the ultimate decision - my advice is more theoretical because i get too cynical with this debate coz I think the recommendations made to you by the medico's will largely be based on dollars - sorry if that ofends anyone  but surgeons have to live, radiologists have to live (they live well but still.)

First decide - can i observe? if you can handle the an in your head and there are no real issues from it, then fine - watch and wait. If you can't, and a lot can't, then surgery or radiation. Both have plusses and minuses which have been well documented on this forum. At the end of the day, go with the one that you think will be best. Absorb the advice you get but remember, the medicos are a business and if you had a service to sell, you wouldn't tell someone to go to your competitor would you?

Laz

Title: Re: A place to vent
Post by: Windsong on August 03, 2007, 10:49:57 am

For myself, I can't imagine dollars are in a doctor's head when "promoting" a treatment suggestion whether it's for surgery or radiation.... if I was a specialist with specialized training and knew what I did was a sound approach for treatment and could do it well, i'd be "promoting" it....the work is far too demanding, specialized and takes years to get there to go in with the thinking of this is money for me.... it would be the rare doctor i think who doesn't think in terms of " i can help this patient and want this to go well "...... my two cents...

Title: Re: A place to vent
Post by: Captain Deb on August 04, 2007, 10:52:29 am

Quote from: sgerrard on August 02, 2007, 08:33:22 pm

   It seems weird to me that the medical community has not worked it all out already, and that they leave it up to us, as if we knew what we were doing. 
Steve

BINGO!!!!!!!!!

Quote of the Century, at least here. Let's put it on T-shirts for the next ANA convention.

Capt Deb 8)

Title: Re: A place to vent
Post by: Omaschwannoma on August 04, 2007, 12:54:15 pm

Bingo?!  Prove it!   ;D

I want one of those T-shirts as I have asked myself the same question but never wanted to say it OUTLOUD so as not to offend any professional--but whatthehey way to say it Steve!

Title: Re: A place to vent
Post by: linnilue on August 04, 2007, 08:47:23 pm

Quote from: Arushi on August 04, 2007, 12:54:15 pm

Bingo?!  Prove it!   ;D

I want one of those T-shirts as I have asked myself the same question but never wanted to say it OUTLOUD so as not to offend any professional--but whatthehey way to say it Steve!

     Touche'   only I did and have confronted my AN physicians which at this time are numerous.  I think it is pathetic that many of these "professionals" are so out of touch with the AN community of patients in general.  Theya have no clue what to do when situations arise that need medical attention because they themselves don't know exactly where to send their patients or what treatment is necessary if any.  I have also found that these same physicains are totally unaware of the impact an AN has both physically and emotionally post-treatment.  I could not beleive it when I started having problems post radiation and I looked to my neuro guys for help and answer and they had nothing for me except stupid ugly and uninformed responses.  It was so frustrating and emotionally draining for me, I felt alone, empty and very depressed that noone knew how to help me.  I had no energy, felt sick all the time and had to muster the effort to try to figure out every last move and appointment I had to make.  Thank god I am in a much better place and thank God for this forum.  I will never feel alone again.  I know that when I need an answer I can find it here.  I thnak all of you for that.  Now let's band together to try to educate our doctors so that others don't suffer in the way some of us have.  We must insist that they put together comprehensive programs so that they as well as we can get the help and suppost we need.  I think I need to make a trip to Washington!!!

Title: Re: A place to vent
Post by: sgerrard on August 05, 2007, 12:04:41 am

Quote from: nikynu on August 04, 2007, 08:47:23 pm

  I have also found that these same physicains are totally unaware of the impact an AN has both physically and emotionally post-treatment. 

Just last week I saw my ENT, and as I was leaving, I said something like "you should have an acoustic neuroma sometime to see what it is like." He gave me an odd smile while shaking his head. I suddenly realized at that moment that most doctors have no idea what "that feeling of fullness" actually feels like, or what any of the other symptoms are really like, or what it is like to go through treatment. Their only sources are what they read in books, what they hear from other doctors, and what is told to them by patients.

What we really need is a nifty machine that 1) gives a doctor all the symptoms of having an AN, and then 2) gives them all the symptoms of having it treated by their various methods. Of course I mean temporarily... ;)

Steve

Title: Re: A place to vent
Post by: GM on August 05, 2007, 07:57:12 am

How about a “Reverse ANâ€? conference?  Instead of the docs getting together and discussing the latest technological advances with each other…they get together with patients.  We discuss our frustrations, the way we became self educated on our AN (self-education methods), our decision making strategies, and how we feel/deal with our symptoms post treatment?

Wait have to keep it in the vent area of this forum…have to say something “vent likeâ€?   So here it is…Hey, get with it docs!  AN Patients are smart and informed…but you’re supposed to be the professionals!   :o

Gary 

Title: Re: A place to vent
Post by: Omaschwannoma on August 05, 2007, 02:24:19 pm

YEAAA!  I agree with Steve and Gary!  As I read nikynu I was thinking hmmmmm.....what would simulate "wonkyhead", "fishbowl", "fullness", etc.?  We could over stuff his ears, place headphones on with the sounds of tinnitus then put one of the docs underwater and take him to a depth where there's pressure build up, oh but first, let's get him drunk, I mean really drunk and do this procedure the next day when he's got one of the worst hangovers simulating the head pain!  Then after he's given us the "thumbs up" hand signal to come up from the depths we'll ask him how he felt.  Maybe we'll just look at him with a sheepish grin and scribble onto a pad for him to see a psychiatrist as it must be stress causing your symptoms.   >:(

Title: Re: A place to vent
Post by: linnilue on August 05, 2007, 03:25:06 pm

Karen,  It's so true, it's disturbing.  It's a good thing we can get a laugh on them otherwise....But Honestly it is my learned opinion that AN's should get the same attention and thoroughness of care as any patient (i.e. cancer, cardiac) with a very complicated illness.  The care we receive is not comprehensive, it is fragmented and incomplete and yes, the docs are ready with psych. referrals when they can't put their finger on your symptomatology.  Believe me, I know!!!!!  And I wish I didn't.  But I think that it would be a good thing for the association to start putting out information publicly like the cancer and heart associations do for a formula of care, expectations and updated research.  I think we deserve it.  As I said, I think I better make a trip to Washington!

Title: Re: A place to vent
Post by: marg on August 06, 2007, 12:04:49 am

All right all.... I am in total agreement about finding a way to inform the public....( INCLUDING the doctors who treat us) about the life changing reality  of dealing with AN and all that goes with it.  I actually had an ENT tell me when I went to go see him that...  'if I lost my hearing  in my AN ear ... it would be no big deal and  I'd adjust.'   At the time I didn't know what to say (and of course I still had my hearing) so I thought he had talked to lots of people who had lost their hearing on the AN side and the other ear must have adjusted and it really wasn't much of a problem.   HA !!!   Well, I know better now and frankly I am MAD !   In the less than 3 months since I have had my surgery  I have had too many people say things like - 'well, at least it isn't cancer'  or  tell me - ( and this is a direct quote)  : " that's why God gave you 2 ears  - so you would have a spare" .  I now make it perfectly clear what it is like dealing  minute by minute with the changes in my life.
     #1 How tired I get trying to understand what people are saying .. in a crowded room or over music, TV, radio etc. because I only hear on one side.... and where is the sound coming from anyway? !
     #2 The loud and varied tinnitus sounds I hear constantly ... which are worse now because I don't have any outside sounds on that side to compete with the sounds inside that deaf ear area.
     #3  The balance issues .... which are better but still a problem.
     #4  My facial paralysis ... which is getting somewhat better but still causes great difficulty -- I can't blink... washing my hair or face is a PAIN because I don't want to get soap in my eye, I can't rinse my mouth after brushing my teeth without 'leaking' out of the weak side, I hardly smile because it draws attention to my 1/2 way working face. 

Of course I don't  go over all these areas with someone.... only the area that applies to their "expert" advice or  comment..... and I present it in a nice way ( I have been doing parent teacher conferences for 30 years... so I am used to using tact when getting my point across.... even when I am ticked ...thank goodness).  I will be seeing my neurosurgeon in another week and I will be sitting down and writing up some notes of things I want to share with him.... what it is truly like to deal with the result of an AN post treatment.  I don't know if it will help but..... I will share with him in words he can clearly understand the impact something like this has on those who go through it. 
     I too would love to have the  doctors who treat the AN experience what it is like to deal with this on a day by day -  minute by minute basis.... for at least 3 months (with them not knowing when it would end).   How an AN can affect their relationships with:  extended family, spouse, children and friends.  The changes in the ability to do their job.....if they can still do it at all - they maybe have to change to some other line of work or go on disability...   and this leads right into the tumor's affect on  self esteem.

     Here is an  example.  My husband and I have wanted to go to Hawaii ever since we got married 27 years ago.  We finally  could work it out.  I had just made the reservations for us to go in July for this long awaited trip  - when I found out I had "a benign tumor called an acoustic neuroma".   I had surgery in May and yes we did go on our trip.  I am so glad we went .  Here are the positives (glass 1/2 full) :    The weather was beautiful, I was there with the man I love, we saw many beautiful and interesting things, the people were great and I didn't get airsick  :D.....  BUT these things were also a reality:  I couldn't snorkle (like I have always wanted to do) because I can't close my mouth tightly around anything.  I couldn't walk on the sea wall because with my balance I could have fallen in the ocean ...... but the hardest thing was that in the pictures I was in ... I either wasn't smiling  or my face looked like I had had a stroke.  I had to make a tough decision... keep the best of those pictures or only keep the ones of my husband and Hawaii.   Well, I did keep the pictures to remind myself that I had survived a very tough surgery and life does go on.  But I'll tell you a secret.... it hurts every time I look at those pictures... because I don't see the 'real me' the one who smiles and laughs a lot.  I see someone else who kind of looks like me... but has something wrong with her. 

     My life (and yours dear friends) is changed... and for most of us will never be the same.  Most of the time I look at the glass as 'half full' and yes I do count my blessing but I will never be the same again and I miss what I have lost.  It is a 'big deal'.  And every day I have times I feel sad about how how things are now.... and the adjustments I have to make and the things I miss hearing/understanding. 

     Thanks for the place and safety to vent  how I feel ....to people who I know will understand. 
Margaret

Title: Re: A place to vent
Post by: Windsong on August 06, 2007, 12:44:57 am

and that is why I feel that this An is not particularly"benign"....it leaves too many other things......

Title: Re: A place to vent
Post by: Lorenzo on August 06, 2007, 01:02:48 am

educating docs... ah yaaa... well, I missed my chance to do that; when i 'said' too much i was dismissed by them, and was left with one other guy i could see in the entire country (small place, few neuros). So, docs, i'm still mad about that. Do they have an understanding of what it's really like? No. How could they?? All I'm asking is that they consider what we're telling them as more than just anecdotal, we're not making this stuff up! Unfortunately, I think that some docs will never see it our way. They're mechanics, they fix things. The rest is up to us, or others to fine tune. At least, that's the impression I get from their reactions.

Title: Re: A place to vent
Post by: Omaschwannoma on August 06, 2007, 08:37:13 am

YEAAAA! to all comments above mine!  The docs leave this life altering choice for treatment up to us (unless size is an issue), so we become educated, set appointments to talk with "the experts" and while spilling our information out in the doctors' office we are chastised (as I was numerous times), the doctors' ego seemed to rear it's ugliness.  Seems they feel I am challenging their knowledge with questions (which tells me they are taking it "personally" and maybe they're the ones with a "personality disorder")! 

My point is (catching my breath after such a winded statement), with my post treatment symptoms all I want is an honest answer if what I am dealing with is something that can be fixed with meds, time, PT, more definitive tests, how about an opthamalagist for my nystagmus and oscillopsia (read about Tx for this with Rx)?  If there is nothing that can be done and time will only tell then prove this to me, give me good information based on what is seen in their other AN patients, but for Pete's sake (don't know Pete) stop with the Dx of "See a psychiatrist as it's stress related." canned response which tells me anyway that you don't have the cahonays to say "I'm at a loss here because it's out of my field of expertise, let me find someone who can help you." 

WHEW!  What a venting session here for me!  Guess I needed that.  Nikynu how about an AN march on Washington?!  When's the bus leaving, I want a ticket! 

Title: Re: A place to vent
Post by: matti on August 06, 2007, 10:42:11 am

My diagnosis (after 2 years of misdiagnosis hell) was finally made by my dentist. While I was sitting in his chair he called up my GP and told him that he thought I needed an MRI because he was highly suspicious of my symptoms and he thought a possible tumor. Anyway, I have the MRI, then see my GP for the "official" diagnosis and he proceeds to wave a finger in my face and tell me how embarrased and appalled he was to be called by a dentist and be told what to do. Shame on this doctor!!!!!!!!!  I then proceeded to wave my finger in his face and tell him that it's time to put his massive ego aside and do what is in the best interest of his patients like he was taught back in med school. I also told him a few other things, but can't mention those on here.

Cheryl

Title: Re: A place to vent
Post by: Brendalu on August 06, 2007, 04:52:05 pm

Leave room for me on that bus to Washington, too!  I have experience there....in 1969 I was protesting our involvement in VietNam  ( I supported our troops) anyway, a group of us were protesting on the Capitol steps and got arrested.  We were from a very small town and didn't know you had to have a permit!  The judge let us all go with a warning.  We got our permit and protested more. 
I would just like a doctor to not say well everyone else has had a routine recovery.  I am not everyone else, I am me and I count too.
Brendalu

Title: Re: A place to vent
Post by: Larry on August 06, 2007, 04:54:21 pm

Margaret,

I don't fully understand all of your issues because i don't experience them all but I can certainly agree with your sentiments.

I want to also take a sec to clarify my earlier comments that Docs will go for the dollars. I should have not been so generic. There are conciensous docs around and there are greedy ones. A little story if i may, I haven't spoken of this before but feel its important to share in light of this topic. My brother is a cancer specialist. He performs bone marrow transplants. I say this so that you can see my comments are not an all out attack on docs. he works in a public hospital and his hourly rate is below an orderly's. he works extremely long hours. He is allowed one afternoon a week for private patients. His income is pretty good but compared to other specialist that are in the private industry, his income pales into insignificance (even down under). Now where am i going here. he is one doc that actually cares about his work and is not in it for the $. he has mates that are in it for the $ and their biggest decision each year is what car can I upgrade to after a merc!!.

The ENt surgeon that I had dismissed radiation right at the start and inferred it like chemo therapy to scare me coz he wouldn't get any fees. I know that now.

In the U.S where surgeons fees are over $50K a pop, I am too sceptical about those that close the door on radiation as an option and can only assume its for the $. I am self employed and if i have an opportunity to earn $50k for half a day's work or send that person on to someone else, well, I'm afraid I know what i would do. I'm not saying that surgery isn't a good option but I get concerned when docs close the door on alternatives.

I'd also like to address the lack of compassion that docs display. My brother sees life and death every day. Thankfully, he has a very good success rate. he is a person that is not a great communicator as far as emotional stuff goes and he has told me that as soon as he opens his emotions up, he will fail in his job. he says that you must remain objective when treating deriously ill people, as soon as you get emotionally involved, you are gone. i must say that his stress levels are very high also.

Now us AN'rs are a little different to cancer patients but nonetheless have serious issues to deal with. I would however like to see docs inch a little closer to compassion than they do but hey, I don't think they are trained for it.

whew, too much detail for a Tuesday morning.

Laz.

Title: Re: A place to vent
Post by: Gennysmom on August 06, 2007, 04:56:09 pm

Not to take anything away from anyone, but I have to say I have the best doctor.  I went straight from audiogram to MRI, to brain tumor ENT in a matter of 2 weeks.  I'm lucky though, my Doctor has a Brother-in-law who had an AN removal several years ago, and he's very sympathetic/interested in what's going on with me.  3 cheers for Dr. Mehlum!!!!!!!   Not only that, but he's a HMO doctor!!!!  

Unlucky for me, mine was 3.1 by the time I admitted to a hearing problem, and now I have a big hole in my head and feel wacky about 100% of the time.  Poo!!!!!!!!  It's me own fault for not speaking up sooner!!!!!  Boo to me!!!!!!!!!!!

Title: Re: A place to vent
Post by: TP on August 06, 2007, 07:50:26 pm

I went from seeing a pain Dr to neurosurgeon and scheduling my AN to be removed in a matter of a few weeks. I was blessed, I really liked my Dr's but what I don't think they are trained to do very well is treat the side affects/disabilities that come with a brain tumor. Once my tumor was removed it was up to me to speak up about what was bothering me. I thought I was going to have double vision for ever and finally the eye Dr said, eventually we can correct this but that was about it. Also, they never mentioned to me that exercise would help me get better, I did that on my own and my recovery improved dramatically.

Bottom line, this website is awesome. I hope there are Dr's who read this and learn from all the information that is shared and provided. 

Title: Re: A place to vent
Post by: ppearl214 on August 07, 2007, 09:24:33 am

I need to vent, dang it!  >:(

*tries to think of things to note for proper venting... um.... husband finally arrived from the UK... won the long battle with US Immigration..... dog and spouse finally enjoying Father/daughter time..... balance in checkbook could be better but still able to pay bills.... car is working ok... spouse landed job in 1-1/2 wks post-arrival to the states... um...head booger is dying.... Chiari 1 stable.... hearing stable... had great "Best Coast" brunch this past weekend..... oy....um... crap*

Nothing to vent for today... carry on! :)

Phyl

Title: Re: A place to vent
Post by: Brendalu on August 08, 2007, 09:01:29 am

Phyl,

I like your "vent".  I'm glad things are going so well for you, Beanie and Ian.
Huggles,
Brendalu

Title: Re: A place to vent
Post by: Dealy on August 08, 2007, 09:21:40 am

This is not really a vent-but for me a manner of coping with all my frustrations especially the lack of hearing. I have turned to reading alot now because of the hearing issue. Probably better anyway because I was a TV Couch Potato before. I just finished a book called The Hiding Place by Coorie Ten Boom. She was a Dutch woman who hid people with her family during WW2 and was caught and sent to a concentration camp where eventually her sister Betsie died.She talks alot about forgiveness and dealing with hurt. I must admit some days I am full of bitterness that this happened in my stage ofl life when everything was going so well. How we take life and it's consequences for granted.I was so impressed with her outlook on life and the entire Ten Boom family regardless of what was dealt too them-good or bad. I would highly reccomend this book to any one on this forum who enjoys reading and even if you don"t-hey-you might begin to look at things different. I know it made me appreciate what I do have-even if I ending up gping totally deaf. So this is not really a vent-just putting things into perspective. Excellent Book-Read It. Thanks Ron.P.S. I will not spoil the plot of the book any further by revealing the contents. I guarantee-anyone who desires too read this book will not put it down.

Title: Re: A place to vent
Post by: Captain Deb on August 08, 2007, 09:55:39 am

Anyone who thinks these ANs benign,
Has gotta be outta their mind!
Your doc says "Be glad it's not cancer,
but for you, well, I just got no answer!"

I like the idea of a reverse AN conference--where we sit up there on the dais like the gods and goddesses we are and answer their questions!

Actually the ANA will be posting an online survey about "life after AN treatment" on the website in an attempt to gather information on quality of life issues and do some actual published research on the subject, not much of whci has been done in the US.

Brendalu--I did my time in the pokey for 4 days in May of 71 in DC along with 18,000 other "kids". Capt Deb in the brig for something other than drunk and disorderly. Imagine!

Be Well and Sail On,

Capt Deb 8)

Title: Re: A place to vent
Post by: Brendalu on August 08, 2007, 11:58:07 am

Ahhhhhhhhhh, Capt Deb we have a lot more than AN's and headaches in common.
A reverse AN conference sounds like the real meal deal!  I am anxious to see the survey!
Brendalu

Title: Re: A place to vent
Post by: Captain Deb on August 08, 2007, 12:15:32 pm

I'm surre we'll all get a head's (in your case a redhead's up) up when the PTB (powers that be) finally post it on the website. 

Capt Deb 8)

Title: Re: A place to vent
Post by: nancyann on August 08, 2007, 12:30:58 pm

Dealy:  thanks for the book suggestion.  I love reading & am always looking for books.  I recently started one - but when I get to the bookstore I'll pick up The Hiding Place.   Nancy

Title: Re: A place to vent
Post by: Captain Deb on August 08, 2007, 01:29:56 pm

Nancyann--If you want to have a real laugh--pick up ANYTHING by Carl Hiiasen. Tourist Season is good as is Stormy Weather and Skinny Dip.  He writes about Florida and it's history and wacky inhabitants. I had a laughing fit on the plane once.

Capt Deb 8)

Title: Re: A place to vent
Post by: nancyann on August 08, 2007, 03:09:56 pm

Hey Capt:  I read them - they were hysterical, especially Stormy Weather !!!  My mom read me Skinny Dip while I was recuperating immediately post op & couldn't read too well.     I love the way he pokes fun at the politics in Florida too - unfortunately he's 'right on' - alot of it IS based on reality. (Lord,I miss New York...)

Title: Re: A place to vent
Post by: Captain Deb on August 08, 2007, 03:21:06 pm

Your MOM read you Hiiasen? :o Too funny. He is the world's best cusser! Creative cussing is my favorite.  I love Jon Stewart and the Daily Show on Comedy Central.

Capt Deb 8)

Title: Re: A place to vent
Post by: Static on August 08, 2007, 04:03:30 pm

Maybe I should look for those books too.  I do alot of reading while waiting at doctor appts.  Jon Stewart and Stephen Colbert are two of my favorite shows.  Comedy central is my fav channel.  Its my default on the remote  ;D.

~Karen

Title: Re: A place to vent
Post by: Betsy on August 08, 2007, 04:24:00 pm

Hiaasen is a hoot!  I bought a "grab bag" of recorded books on e-bay awhile back and Skinny Dip was the best of the bunch.  As it turns out, recorded books are just the thing for those dizzy-days when I can't seem to focus on the printed word.  Some authors "read" better than others, and so far everything by Hiaasen has been a delight to listen to!

Title: Re: A place to vent
Post by: Gennysmom on August 08, 2007, 05:13:48 pm

Oh, audiobooks are the best these days!!!!!  It's how I get through work when the ambient noise is too much to take.   I'll admit I'm a huge geek and have all the Harry Potter ones on audiobooks, and they help me keep my sanity!!!!  Very relaxing!

Title: Re: A place to vent
Post by: nancyann on August 08, 2007, 06:14:42 pm

I took my mom to see the movie 'Sideways' - the guy gulping down the spitoon full of 'used wine' didn't bother her, what DID bother her was  during the last sex scene she turns to me & says, "Do they HAVE to show CHUBBY people having sex?"  (mom is 81, 5'1" & 105 lbs of energy!).  I almost had an accident laughing so hard !! (so Hiassen is mild stuff for her!)

Title: Re: A place to vent
Post by: Static on August 08, 2007, 06:59:59 pm

Gennysmom,
Not as geeky as me.  I took my daughter to the midnight selling of the last Harry Potter book then spent all weekend reading it!  We have every book and every movie.  I guess I'll have to reread them all again!
~Karen 

Title: Re: A place to vent
Post by: Gennysmom on August 09, 2007, 12:28:16 pm

Oh, believe me, I have all the books and the movies as well.  I read the last one in about 24 hours to beat the news leaks of what happens.  I could vent about that stupidity for hours!  At least I know I'm not the only one, I know Katie's a fan too. 

Totally off the venting subject, please feel free to vent on everyone!   ;D

Title: Re: A place to vent
Post by: krbonner on August 09, 2007, 02:56:19 pm

Quote from: Gennysmom on August 09, 2007, 12:28:16 pm

Oh, believe me, I have all the books and the movies as well.  I read the last one in about 24 hours to beat the news leaks of what happens.  I could vent about that stupidity for hours!  At least I know I'm not the only one, I know Katie's a fan too. 

Totally off the venting subject, please feel free to vent on everyone!   ;D

Better believe I'm a fan!   ;D

Title: Re: A place to vent
Post by: Captain Deb on August 10, 2007, 09:35:31 am

Ah, sweet Kathleen. My favorite Amazon Geek. (Amazon as in the warrior woman kind)

Capt Deb 8)

Title: Re: A place to vent
Post by: Sue on August 10, 2007, 02:21:52 pm

I have all the books and I even decided to go to the mall at midnight to scoop up the last Harry Potter book (sob) just to say that I went to one middle of the night event.  And like Kathleen, even tho I wanted to savor the last book, I was afraid if I took my time, I'd hear something about it before I was done....so I raced through the book.  The people behind me in line asked if I was buying this book for someone.  I said....yes, ME!

My friend uses audio books all the time because she likes to be doing busy work while she listens to the story, or else driving to and from work.  I've never listened to one...but the pre-recorded message I got on my telephone reminding me to come and get the book was recorded by the man who narrates the Potter books.  My what a silken voice he has!  It would be a treat to hear him tell the story.

Sue in Vancouver USA

Title: Re: A place to vent
Post by: Patti UT on August 10, 2007, 08:11:28 pm

Quote from: Static on August 08, 2007, 04:03:30 pm

Maybe I should look for them books too.  I do alot of reading while waiting at doctor appts.  Jon Stewart and Stephen Colbert are two of my favorite shows.  Comedy central is my fav channel.  Its my default on the remote  ;D.

~Karen

These shows are great,  Comedy Central was my post op recovery therapy before I could focus enough to read> I wouod wake up in the morining and turn on  Comedy Central and lay in bed and listen to the stand up comics. Started my days off laughing....it was great

patti ut

Title: Re: A place to vent
Post by: Captain Deb on August 11, 2007, 08:16:46 am

While I was recovering in California, my cousin's husband watched Fox news continuously and Bill O'Reilly all the time. No wonder I developed headaches!

Capt Deb 8)

Title: Re: A place to vent
Post by: Ellenmn on August 11, 2007, 08:33:34 am

Quote from: Captain Deb on August 11, 2007, 08:16:46 am

While I was recovering in California, my cousin's husband watched Fox news continuously and Bill O'Reilly all the time. No wonder I developed headaches!

Capt Deb 8)

That would give me Headaches as well.

Title: Re: A place to vent
Post by: Dana on August 12, 2007, 12:45:53 pm

Dear all,
When I first found this post, I felt a great relief - all the exchange of info and the positive outlook on this Board is wonderful, but it's also wonderful to acknowledge all our frustrations honestly.

I haven't read every entry in "A place to vent", but I want to add some historical perspective to the posts about doctors with unsympathetic attitudes and no particular recommendation.  I'm definitely not trying to sugar coat everyone's experience, just point out that it used to be alot worse.

Although there are many, many egotistical doctors still out there, at least there are SOME who actually listen.  (You may have to repeat yourself a gazillion times.)  The attitude of the medical profession has changed alot in the last 40-50 years.  There used to be very, very few doctors who weren't arrogant.  Now there are many, or at least some.  That's a big change to me, in my life time.  I saw my mother suffer horribly, being constantly told that things were "in her head."  I know it still happens alot - it happened to my husband with what was eventually diagnosed as MS.  But now that our family doctor (a younger person without decades of experience) knows what MS 'looks like," she openly acknowledges that she learned alot.  For me, there's a huge difference between my mother's lifetime of suffering, and the 6 months or so it took for Clyde's persistence to "educate" our family doctor.  And my mother was a smart and very feisty woman, so it wasn't for lack of trying on her part.  I tell these stories to my doctor so she'll know the vast difference between the 50s and 60s and now.

I know it's VERY difficult to be under the extreme stresses of AN symptoms AND having been told you have a tumor, and then having to decide yourself what option to take.  But to me this is such a positive development in medicine historically, I sincerely think we should appreciate it.  I am only at the beginning of my AN journey and i don't know if my GK procedure will help or hurt my situation, nor do I know if there's some fact I haven't uncovered in research that I will wish I knew in retrospect (as I  know is the case with several AN Forum members).  BUT it seems accurate to me that the choice of treatment for ANs is appropriately one that each of us has to make, no matter how hard it is.  It's the doctors who say defniitely to us that "procedure x is the answer" that are speaking an untruth, unless of course one has a large or particularly invasive AN.  Many of us have a choice, and many people have 'fought' the medical establishment over the decades to give us that choice.  It makes it oh-so-much harder, but it's better to be able to take into consideration ALL of our personal factors in addition to the medical realities of our situation.

And, finally, the internet.  What we would all do without this Forum?  I'm not sure we'd be able to make an educated and personal decision.  The internet allows us to talk to hundreds of other people we would not know otherwise.  I find it difficult to wade through the posts, but I found the posts and the recommended links I needed to make my decision.

I'm sure several of you will say, "What the heck is this Pollyanna doing here?'  I'm not a Pollyanna; I'm just saying it's so much better than it used to be.  Both my mother and I have spent our lifetimes fighting the establishment, being dogged patient advocates for ourselves and loved one.  It takes pushing, pushing, pushing.  You have to see it as a contribution you're making to human progress, even as you suffer.  It IS a contribution to human progress!  In the 70s when I was involved with a meditation and wholistic health group, I would have NEVER thought that acupuncture would be so accepted by the 1990s.  There's lots of racism still in the world, but it's better.  There's alot more openness and acceptance of, for example, depression as a medical condition, not a moral one, but there's still alot of stereotypes that still need to be overcome.

Fight on!

End of rant ................ :-)
Dana

Title: Re: A place to vent
Post by: Brendalu on August 12, 2007, 05:56:08 pm

You are very right Dana.  We are better off in some ways today than ten, or more years ago.  I do remember our family doctor when I was a child in the fifties though.  I was a sick child.  Lots of different, difficult illnesses.  He always took time and HE made house calls.  He listened and when he didn't know the answer he found someone who did.  I lived in a town with a population of twenty thousand and we had two hospitals. I have a doctor, who although she doesn't make house calls, although I've never asked her to, does listen and she is one of the smartest and nicest doctors and down to earth ones next to my childhood doctor I have ever been to.  Sometimes I think the searches on the Internet give us too much info.
Brendalu

Title: Re: A place to vent
Post by: Soundy on August 13, 2007, 07:04:20 am

One little rant from me ...


POST OP SNEEZING IS BAD !  >:(

even 6 weeks out


Sneezing fit resulted in having to take heavy duty pain killers about 4 pm yesterday afternoon... sneezed til AN
side of nose bled some ... called doctor and he said to rest in up right position and go to ER if it bled more or if had
watery discharge ( CSF leak ) ...don't know if my family even ate dinner last night ... sat in recliner and propped my
head in just the right position , turned off all lights and dared anyone to enter room...Husband got me up and
tucked in bed  about 1 this morning ... had to get up and get everyone off about 6 ... hungover but head is
fine ... these little things make me irrationally mad...

Doctor called and ask me to go on in to see my PCP and let him look in my nose and ears even though I told
him I am doing fine and no more bleeding nose and no sign of leaking fluid... so instead of my nice ,quiet , post crazy
weekend day I am going to get to go sit in a doctors office ... I am going to request
to be stuck in the well baby waiting room where they stick new little babies to keep them from
being exposed to viruses and colds and stuff... if a dozen sneezes can knock me flat I don't want to find out what
a virus or bad cold could do

The sneezing  fit was the result of husband weed eating ... I made him stop before he started cutting grass... I told
him to turn a cow or goat in the yard but leave the mower alone...

OK... all done venting ...gonna go get a shower and wait til 9 to see when they can get me in

Have a good day

Title: Re: A place to vent
Post by: ppearl214 on August 13, 2007, 08:17:11 am

official need to vent....

I lost another friend... young one... died mysteriously and a very dear friend.... my friend, my hairdresser, the one that always showed me unconditional love and support, during all of my physical ailments, my foibles, my warped humor, fought like a sister with me.  She loved the fact that I found a man that would love me as unconditionally as she loved me... and as I loved her.

Many here know I lost a friend last year that was young and mysterious situation... and now, here I go again...

Tiger, you have no clue how much you touched my heart.  You have NO clue how much I value our friendship.  I hate the fact that you died so young (36).  I hate the fact that I didn't get to say good-bye.  I hate the fact that you were healthy and fit as can be while my body tries desperately to fail me... and now you are gone.  This bites.

So, my vent today... that another person, so dear to my heart, was taken at a young age.....

Ok, this ends my vent.... sorry folks... just had to let this out.

Phyl

Title: Re: A place to vent
Post by: Dealy on August 13, 2007, 09:15:59 am

Phyl- Good to release pent up emotions I guess. When I had my first AN and was recuprating from surgery-one Friday evening I opened the paper and saw a good friend of mine had died and he was only 33 years old. He had a rare heart condition and he went to excercise.He heart started racing and they could not slow it down-he died two hours later in the hospital. His girlfriend at the time-well they were going to get married in two months.She is still our good friend. She never married. Guess we will never know why someone in this world is taken at such a young age. Condolences to you for losing a good friend. Ron

Title: Re: A place to vent
Post by: Soundy on August 13, 2007, 04:09:34 pm

Phyll ...sorry to hear of your loss...

I have a  friend of 20+ years who my older kids always called uncle... he and
his wife were instrumental in getting me through the breakup in my first marriage...
He asked which one got him in the divorce and I told him I did  ( being a good
guy he has remained friends with both of us) ... anyway... last November his
8 year old son collapsed and died about 12 hours later... he had a brain tumor... not
an AN ... just a benign tumor of unknown origin against his brain stem... he was never sick 
or any symptoms ... just suddenly gone

It is so hard to lose anyone and to lose young people seems even worse... his death
made me think why him and not me ...

My thoughts are with you

Title: Re: A place to vent
Post by: Jill Marie on August 13, 2007, 09:21:24 pm

Hey Capt:  I read them - they were hysterical, especially Stormy Weather !!!  My mom read me Skinny Dip while I was recuperating immediately post op & couldn't read too well.     I love the way he pokes fun at the politics in Florida too - unfortunately he's 'right on' - alot of it IS based on reality. (Lord,I miss New York...)

Warning-don't read posts when you are short on sleep!  My Dad & I had just got back from a WWII Reunion and our flights got delayed and therefore I arrived at home at 1 in the morning and had to work today so I'm really, really tired.  When I read the above lines I thought it said, "My Mom made me skinny dip while I was recuperating."  I then read a few prior posts to see what led to this post and read it right the next time.  Jill Marie

Title: Re: A place to vent
Post by: ppearl214 on August 14, 2007, 06:09:57 am

Thank you Ron and Soundy... for your compassion and wishes... and for sharing tragedy that has also touched you.  When I think of the song "Only the Good Die Young".... dang, it really is true.  Huggles to you both for your losses and appreciation for sharing this with us....

Today is Tiger's wake.... I will go and try to say my good-byes to her....just hasn't hit me yet.......still numb.

thanks again,
Phyl

Title: Re: A place to vent
Post by: Dana on August 14, 2007, 10:11:50 am

Dear Phyl,
    Lots of hugs to you.  I'm sure you'll find your way to say goodbye.  Odd, isn't it, how some deaths hit us so hard?  A "young" (59 = 'young" when you're 58 like me!!) close family friend died last year and I went to his memorial service and just cried and cried the whole time. 
Dana

Title: Re: A place to vent
Post by: Sue on August 14, 2007, 12:36:40 pm

So sorry Phyl for the recent loss of your good friend. It's even more tragic when these folks are young and still should have a good long time to go to fulfill a "normal" lifespan. 

The first week in July I went to the saddest funeral I've ever been too, and that includes my own parents I think.  A friend's daughter lost her 9 day old baby girl to a bacterial infection of some sort.  Three very appropriate but terribly sad songs were played which made it even more heartbreaking.  Tears in Heaven, the song that Eric Clapton wrote after the death of his child, Sarah Maclaughlin's Arms of the Angels, and another one that I can't remember.  And all through it, the young mother is softly sobbing. Along with most of the people at the funeral, I might add.  Jeez that was a tough thing to get through and there was nothing I could do or say to help the young parents (20 ish) .....nothing.  :'(

Love ya,

Sue in Vancouver USA

Title: Re: A place to vent
Post by: Captain Deb on August 14, 2007, 01:14:02 pm

Geez Phyll, so sorry!  Life sure is a mystery sometimes isn't it? Hope your MRI went well, (I know it did) I tried to pick up the phone while you were talking, but my new phone won't let me! Hmmmm.

Good Rant , Dana!

Capt Deb 8)

Title: Re: A place to vent
Post by: Brendalu on August 14, 2007, 03:32:56 pm

Phyl,

I am so sorry for your loss.  Friends who accept you unconditionally are few and far between. I'm sending big huggles and I am soooooooo very glad that Ian is there now for you.
 August is a rough month for me too.  Tomorrow is the twenty-first anniversary of my husband's suicide.  Tomorrow is the first anniversary of my daughter finance's death, and August 25 is the 12th anniversary of my twin baby daughters' passing.   I would like to sleep through August.  Not possible so my therapist tells me to decide how long I am going to spend grieving and only allow myself that much time and plan something else for the rest of the day.  Easy for her to say.  I usually release white balloons with notes attached  (I know, bad for the birds).  This year I am sending up red ones.  I want them to see that I am still thinking about all of them.

Hugs, Phyl...........................it does it easier with time..........Brendalu

Title: Re: A place to vent
Post by: ppearl214 on August 15, 2007, 06:43:32 am

thank you all again for the wishes..... it is truly appreciated.

Brenda, I send you MASSIVE huggles during this rough time.....my hope is that you find peace in your heart during this time... and know that we are all here for you.  Massive huggles...... I know they are "virtual" but I sure hope you can feel them......

thank you all again...
Phyl

Title: Re: A place to vent
Post by: Larry on August 15, 2007, 04:39:35 pm

These tragedies are so unnecessary and hurt so many people. Life sucks half the time.!!

My thoughts are with you Phyl.


Laz

Title: Re: A place to vent
Post by: ppearl214 on August 15, 2007, 08:41:54 pm

Quote from: Larry on August 15, 2007, 04:39:35 pm

These tragedies are so unnecessary and hurt so many people. Life sucks half the time.!!

My thoughts are with you Phyl.


Laz

Hugz hun.. major hugz back at you...  :-*

...and thank you all during this very difficult week..... just trying to move on now... and hoping you all are doing ok as well.

oxox

Title: Re: A place to vent
Post by: Jill Marie on August 16, 2007, 09:07:33 pm

Phyl

I had a very long day Sunday trying to get my Dad & I home from Pittsburgh to Spokane, WA.  Now and then as we sat in the various airports I felt like venting and was looking forward to doing so here.  Wasn't sure it fit the subject as it's not about AN's or medical related at all.  Was going to post but was to tired the first couple of days after I got home to even read the posts and catch up with everyone.  THEN, I read your post about loosing a very good friend that was always there for you and my need to vent was gone, no longer important!  I want to tell everyone that posted about their losses that I'm so sorry they have had to go through those times. I'm thankful that you have a place to share those losses.  Take care, Jill

Title: Re: A place to vent
Post by: ppearl214 on August 17, 2007, 07:31:56 am

Jill, thank you.  :-* I hope your day/week is a better one and glad to see you and your dad are safe and sound.

Phyl

Title: Re: A place to vent
Post by: Brendalu on August 23, 2007, 07:24:22 am

I am glad we have a place to vent.  As I said before, August isn't a good month for me.  It got worse this week.  My favorite brother, passed away Monday night.  He lived in New York State and I live in Houston.  The funeral was Wednesday morning and the flights to near where he lived are few and far between.  I couldn't get one.  I can't believe I am not going see his twinkling eyes, hear his corny jokes or hear him tell stories of our child hood that make him laugh so hard that tears run down his cheeks and everyone who listens as well.  He was only a little older than I am.  I feel sad and lost and angry.  Thanks for listening.
Brendalu

Title: Re: A place to vent
Post by: Boppie on August 23, 2007, 02:45:37 pm

Oh Brenda, I am so sorry you lost your brother.  I love your comments about the laughing you had with your brother.  Memories of times with siblings are the best ever!

My 2 brothers and 2 sisters and MOM are in Ohio.  There are only a few flights a day into Cincy from Houston.  Then we have to drive 35 miles to get to the home town.  It is a ridiculous 10 hour day for me to even get there from here.  In 1997 My Dad was in hospice and took a turn for the worse and I only got there on the evening of the wake!

I have a brother 2 years younger than me.  We are very close.  I've spent 37 years in Texas, and make one trip to Ohio every fall.  It is hard.

Title: Re: A place to vent
Post by: Brendalu on August 23, 2007, 04:16:54 pm

Thank you, Boppie, memories are great, no one can take them away from you.  The drive from Buffalo to the hometown is 65 miles if I don't get lost!
Brendalu

Title: Re: A place to vent
Post by: yardtick on August 23, 2007, 04:52:14 pm

Brendalu,

I'm so sorry to hear about the loss of your brother.  You certainly have had your share of losses.  Know others care. 

God bless you,
Anne Marie

Title: Re: A place to vent
Post by: ppearl214 on August 23, 2007, 07:34:54 pm

Brenda,

Our deepest, heartfelt condolences to you and your family.

{{{{{{{{{{{{{{{{{{{{{{HUGGLES}}}}}}}}}}}}}}}}}}}}}

Phyl, Iain (CB) and Beanie

Title: Re: A place to vent
Post by: Dana on August 24, 2007, 08:00:30 pm

Brendalu,

Ditto to Phyl's HUGGLES.

Dana

Title: Re: A place to vent
Post by: Brendalu on August 25, 2007, 02:21:13 pm

I promise I won't post for at least a month.  Yesterday my baby, Sara's Sunshine Lady. my fawn Pug of ten years passed away.  She was young for a Pug and very small, under ten pounds.  Tomorrow we are having a family gathering to say our goodbyes.  She was buried in her favorite spot in the yard, in her favorite pink sundress.  (she loved clothes and pearls)  Once again I feel as though my heart has been ripped out of my chest.  Thanks for listening.
Brendalu

Title: Re: A place to vent
Post by: Larry on August 26, 2007, 10:04:25 pm

Brendalu,

As I have said before - Life sucks some times.

hugs and cuddles from down under.

Laz

Title: Re: A place to vent
Post by: Ellenmn on August 27, 2007, 06:38:56 am

Well yesterday was both frustrating and embarrassing. My husband and I had several things to do, so he went his way and I went mine. First thing was to go to Sam's club. When I got there they weren't open for another 1/2 hr so I went to a coffee shop close by. When I got there I sat in my car to look for a gift card I had. After having my coffee I realized I had locked my keys in the car. I didn't want to call my husband so I decided to walk the 2.5 miles home and get the spare key. Well part of the way doesn't have a sidewalk and it's along a main road. I was trying to walk along the curb up on the grass and lost my balance and fell into the road and hurt my left hand. Luckily it was early enough in the day that the traffic was still light. So I'm typing this with one hand. I started typing it last night and so how wiped it out when I was almost done so I just left the computer alone. This short memory and balance issue can sure be a pain sometimes.


Went to the doctors this afternoon and I have a fracture in my hand so I’ll be typing one handed for awhile.

Title: Re: A place to vent
Post by: leapyrtwins on August 27, 2007, 07:00:00 am

Ellenmn -

recovering from AN surgery can definitely be a pain and it sounds like yesterday was a good example of that.  Along the way, I've found that "frustrating" has become a big part of my vocabulary.  But, thankfully, I've found that with time, things get better.  My balance is much better today than it was a month ago, and although I still have short term memory issues now and then, that has gotten better also.  I hope you find the same is true with you.

Hang in there, learn to laugh at things you can't control (you'll feel better), and take care of your hand.

Jan

Title: Re: A place to vent
Post by: Soundy on August 27, 2007, 07:48:30 am

hugs to you BrendaLu

I have a catahoula dog... CD...short for compact dog which is what he was when I got him
and he could fit down in my shoe...

he will be 15 in November ... his body posture and shape have changed over last year or so... within a week
of my surgery he went totally deaf... we live in the sticks and he has been my ears for years warning
me that someone is coming up the drive...

at first I thought why now did he lose his hearing when I need him more than ever... but got to thinking that
I know he is old and can't live for ever... maybe his going deaf was to prepare me for him not being there for
me in the near future... a weaning off of dependence of sorts...

Our pets can become family... he has listened to me and been there through a bad divorce and wagged his
tail for me when I remarried a great man and had more kids to see after when I had my two youngest kids ... it
seems he has been with me forever... I already miss him... I still talk to him when we are together... but he rather
tag after my husband and the girls around the farm...I put him on a run if no one is with him ... scared he will
go to road or not hear a cow coming up behind him...

I know your heart is broken...mine is already cracking and that day hasn't got to me yet...

(((hugs))))

Title: Re: A place to vent
Post by: Dana on August 27, 2007, 11:37:18 am

Dear Brendalu,
Life is so difficult sometimes.  I can't imagine experiencing the deaths of so many loved ones so close in time, both this month and in August's past.  But please know I feel your pain.  My brother and sister Shelties died on the same day in '04, one from a medical problem, then an hour later her brother jumped the fence and was hit by a car.  I still shake my head in disbelief. 

I've recently changed depression meds from Zoloft, which has a dulling effect, to a more 'modern' one, and it's allowing me to grieve more deeply, but I am grateful that I was on Zoloft thru deaths of both my beloved parents, my hubby and my two doggies.  The deaths of babies is, as far as I'm concerned, absolutely the most difficult; I've had two very close friends who lost babies, one at 7 days, one at 4 years after being born with genetic problems. 

So, please know I'm thinking of you.  There are no comforting words I can think of, but please know you're not alone.
Dana

Title: Re: A place to vent
Post by: matti on August 28, 2007, 07:29:23 pm

Brendalu - My thoughts and prayers are with you.

I am feeling sort of a loss myself as I am now an empty nester. My youngest son left for college on Saturday and I am an emotional mess, the house is so quiet and empty, I hate being here. I actually made it through 5 hours with crying today. What's weird is that there are thousands of books on preparing for babies, etc..., but no one really talks about what to do when they leave. I know I will always be a mom, but not in the role I am used to.

Cheryl

Title: Re: A place to vent
Post by: ppearl214 on August 28, 2007, 07:33:51 pm

Cheryl

{{{{{{{{{{{{{{{{{HUGGLES}}}}}}}}}}}}}}}}}}}}}


xxoxo
Me, CB and Cosmo's virtual girlfriend

Title: Re: A place to vent
Post by: Larry on August 28, 2007, 10:03:05 pm

Cheryl,

I wanna know if anyone has written Parenting 101?

Having kids is tough enough but their are significant issues at the other end too.

Our eldest daughter is 24 and we pushed her out (she needed to see what life was really about) anyway, she has just bought a place with her boyfriend but just down the road from us. My wife and I have been thinking of moving to another State in Oz but this as quickly squashed coz of the paternal thing. So understand where you are coming from.

Hopefully you will feel better as time progesses and you replace the empty nest with other activities.

lots hugs

Laz

Title: Re: A place to vent
Post by: Soundy on August 29, 2007, 07:51:29 am

I skipped the empty nesting first time around ... had two little girls about the time my older kids
were beginning to fly off  :)


I won't admit it often but I miss my boys... they are 29 , 27 year old twins and 26... they and I were
an island against an abusive father and husband ... super close ... miss them but didn't get overwhelmed
by it because I had the girls to take care of ... and three live within 10 miles so it isn't like that landed far off

remarried a good guy that accepted them all... then started over in 1997 with birth of first daughter
and then youngest ( and Last ) in 1999...

When the oldest and youngest boy had their birthday on the 25 of august , I thought how did I get a
29 year old child and have a 8 year old too...I will be old and worn out by the time the girls leave that
I may not notice ...my husband told them they could live here forever...

Now I am trying to figure if the girls are keeping me young or aging me ... I think a bit of both

Title: Re: A place to vent
Post by: Captain Deb on August 31, 2007, 05:13:28 pm

Brendalu,
I am sure your little Sunshine Lady is frolicing around in Doggie Heaven right this moment with my veterinarian Dad "Dr Ed." Doggie Heaven is where he always wanted to go since he figured that's where all the fun would be. He said so many times. She's in good company. I had a rough August. Would've been his 80th birthday. I know he and Ursa shared a birthday chocolate cake! Wish they both were here. Chin up, babe!

Huggles,
Capt Deb 8)

Title: Re: A place to vent...ordinary life.....
Post by: Windsong on September 16, 2007, 05:10:08 pm

Bobble.. bobble, bobble.....

Hi!

This is an ordinary thing.... but what a reminder of ordinary life.....

Yeah...I have a stuffed roast in the oven, (courtesy local happy butcher),   veggies too, (tossed in their own olive oil and herb concoction),  and strawberries drizzled with this  marinade on them and other stuff waiting and all I wanna do is crawl into bed 'cause I have a cold.  .... (guests cancelled , one for being called in to work and the rest 'cause of me....Been years without  this kind of cold)...how can anybody go years lol without a cold like I did the last few years? well, it was good I did, but this is no fun,  now). Definitely different from the An stuff  .....

Anyhoo, what's normal body temp anyway? ( I can't remember)  Mine says under 36 c...

windsong

Title: Re: A place to vent
Post by: yardtick on September 16, 2007, 05:52:35 pm

Windsong,

Sorry to hear you aren't feeling well.  Normal temp is 37.  Keep warm.  I made chili toady, stuffed a huge capon, mashed potoates, honey glazed carrots, and salad.  Its been a long time since I've cooked that amount of food.  Oh yeah, did a bit a shopping and laundry also.

Yuck, tomorrow is that dreaded four letter word WORK!!

You need some good old  homemade chicken soup :-[

Hope you are feeling better soon.

Anne Marie

P.S.  Could it be allergies?

Title: Re: A place to vent
Post by: Larry on September 20, 2007, 04:42:50 pm

Whats with this OJ Simpson charachter? ooks like he is dang unlucky and happens to be a police scapegoat or he is a mnace and thinks he's greater than whoever the greatest being is.

I can relate to sporting cult heroes coz I luv my sport but he gets more air time in Oz than the poor troops over in the middle east.

Laz

Title: Re: A place to vent
Post by: nancyann on September 20, 2007, 04:53:47 pm

Hey Laz:  Don't get me started on that sociopathic creep - what I'd like to say I can't, being on this forum & all.

Title: Re: A place to vent
Post by: Sue on September 21, 2007, 12:36:52 pm

OJ Simpson is headline news in Australia?  What's the world coming too?  I don't even want him to be headline news in the US, much less the rest of the world.  When I get sick of the stuff going on here, I think...where can I go that's the furthest spot from here, that still speaks English and is relatively safe, and has a good quality of life - and I think...I'M MOVING TO NEW ZEALAND!  So, if all that nonsense is going to follow me down there...then why bother! 

Cheers!!

Sue in Vancouver USA

Title: Re: A place to vent
Post by: Captain Deb on September 22, 2007, 11:05:49 am

Has anyone watched "The Flight of the Conchords" on HBO with the 2 Kiwi Musicians. It is a riot! A house on a cliff over looking the sea in NZ with no TV sounds great!!!!!!! I already have 24/7 sea sounds in my head. Great tinitus masker, the ocean! I'd have to have internet access, cuz I'd miss you guys, though!

Capt Deb

Title: Re: A place to vent
Post by: matti on September 22, 2007, 11:35:34 am

I hope OJ is put away for a long time, then he can start on his new book "If I stole it..."

Title: Re: A place to vent
Post by: leapyrtwins on September 23, 2007, 10:41:58 am

Matti -

that is SO funny.  Someone actually came up with something like that - a parody.  I think I read about it on MSN.

Jan

Title: Re: A place to vent
Post by: GM on September 26, 2007, 06:35:29 pm

Venting time!

My ear has decided to give me the freaky sound show today...and that just sucks.   I got a new hearing aid (thanks Vetran's Administration), but I think it makes my tinnitus louder.

Venting complete....I feel better now....out.

GM

Title: Re: A place to vent
Post by: Soundy on September 26, 2007, 07:59:08 pm

Today was a bad one ...sneezing due to my son weed eating fence line started a head ache
that Tylenol wouldn't touch...so ate hydrocodone and slept alot... but that isn't my vent

For some reason with everything going on right now the one thing that is driving me nuts is the
metallic taste in my mouth... I am just tired of it ... my head aches, I walk like I am drunk half the
time, my good ear is tired and not hearing good by mid afternoon and the ringing in my deaf ear
drowns out what my good ear is hearing ...I deal with all that and get pissed off at the taste thing ...
and it is minor in comparison

My husband is more concerned about the other things and said the taste couldn't be that bad...so
I used liquid Dial antibacterial hand soap and washed a penny and made him put it in his mouth... he
kept it in for about three minutes and spit it out... I told him he had to keep it in til we ate and had
to put it back in between every two or three bites... he said it tasted too bad ... no s***  Sherlock is
what came out of my mouth next and told him I couldn't just spit it out and be done with it...
he gave me a look... it was a she's cracking up look ... and I feel like I am sometimes...

I can take a pill to get rid of headache ... rest helps the wobble and hearing... but
nothing helps the taste ... I guess not being able to remedy it in any way makes me feel powerless...

I know this is not about the taste ...just getting to an emotionally drained point... and it will pass... in the
time being I will pick on my husband ...he is an easy and sympathetic target... hugs me and tells me it will
be alright  :)

Title: Re: A place to vent
Post by: marg on September 26, 2007, 11:12:00 pm

Hi Soundy,
    I so understand about the metal taste in the mouth....and I love the penny with dial soap..............I laughed my head off...what a great idea - my husband hasn't said anything like the taste couldn't be 'that bad' ...but just in case I'm going to show him your post.  I'm sure after reading it he will NEVER tell me 'it can't be that bad'.

     Your 2nd paragraph could have been written by me  2 months ago (if I look in my journal I am sure something very similar is written down)..... so hang in there .  Now at 4 months post-op  the metal taste is less, the balance is better, the brain has helped the 'good ear' adjust better and I can even forget about the ringing in my deaf ear at times.   You will feel better in a couple months.   This recovery thing is VERY slow compared to any other surgery I have had ( and I've had 8 others).   I think it is because there are so many things we deal with all at the same time in recovery.... it is just exhausting.
     And yes it does help to vent ! ...especially to others who understand  :)
Margaret
P.S.  For some reason one of the things that 'tasted normal' about 11 weeks out was a root beer float..... I can't even tell you how many of those I have had in the last couple of months.....lets just say I have bought more than one 12 pack of A & W root beer.     ::)

Title: Re: A place to vent
Post by: lori67 on September 28, 2007, 10:53:47 am

Wow!  This is great - I can vent and not feel bad about it!  I'm new here so it's nice to know I'm not alone!  I had the biggest laugh at some of the venting because I know how you all feel!  I walk like a drunk most of the time too - I had a cousin suggest I walk around with a half empty bottle of vodka so no one would wonder what my problem was!  And if I don't remember to bring a straw with me to drink it , I'd be spilling it all over myself too - that would complete the look.  My husband and kids have been great since my surgery in February 2007, but I know they just don't get it.  I once had someone (not a family member!) tell me I should get a dairy license because I was milking this surgery for all it's worth!  He thought he was being funny.   Not quite.  I'm a stay at home Mom, and after the two weeks my husband could take off work after my surgery, I was home 10 hours a day with a 4 year old and a 10 month old 6 days a week.  I couldn't drive, so we were stuck in the house - I couldn't see, I could only hear out of one ear and kept losing the kids in the house.  I think the fact that I eventually figure out where they are and they're in one piece is pretty darn good considering!  Everything is my house is so baby-proofed right now - my neighbor says its like a Baby Fort Knox - gates, plugs, locks...

Last weekend we were out shopping and I put on my sunglasses (my right eye doesn't close), even though it was overcast.  My husband looked at me and said "What's with your sunglasses?"  I just thought there were fingerprints or something on them.  He took them off and handed them to me - the right lens had popped out in my purse - so it was just a big empty hole that I hadn't even noticed.  He said "Wow, you really can't see out of that eye, can you?".  Ah, finally!  Does he think I make these complaints up?

Not that I like to see other people suffer, but it is nice to know there are people who understand why I constantly have bruises on my arms and legs from bouncing off walls and furniture, why I "ignore" them when they stand on my right side, why I don't smile at their jokes and why I'm constantly winking at them.

Thanks for the laughs!  They made my day!  Now I'm off to find my kids....

Title: Re: A place to vent
Post by: ppearl214 on September 28, 2007, 11:42:17 am

cold front moving in from the west... wonky head strut has been perfected and St. Imitrex doth surround me in preparation of the weather change... yay me....... ::)

Title: Re: A place to vent
Post by: marg on September 28, 2007, 07:38:26 pm

Well, one more week of school down and only a million (it seems like) more until next summer.  I'm still teaching 1/2 time  .... hoping to go back in a couple of weeks to full time ( I've been saying that for the last 4 weeks )  .. my kids are great but I've got to admit I'm getting tired of trying to figure out which one (or more) of my 2nd graders is talking.... or whistling.... or humming.... when I am TEACHING !!    :o now I just stop until it is quiet.  .... I told my kids that we needed to get the lesson finished and "it's ok with me if it takes right through recess time I'm ok with staying in with you "  :)   Now when a child  does a   whistle, talk or humming thing while I'm teaching the other kids just stared at him/her and it gets quiet real fast   ;D and we all get out to recess on time   HURRAY !  ..... now if I could just get the quiet ones to speak up when I call on them.  'sigh'.... oh well, one battle at a time..... and it's Friday night and I'm not going to think about school things for 2 whole days.... or have to take as much headache pain medication as I do during the the school days either.   ahhhhhhhhhhhhh   peace and quiet.
Margaret

Title: Re: A place to vent
Post by: Jill Marie on September 28, 2007, 11:27:01 pm

Our youngest son was home on leave last week and bought a new camera.  He said that the camera wouldn't take the picture tell I gave him a big teethy smile! Great, now they make a camera that won't work until you smile they want you too!  Luckily he hadn't figured out that feature before he took my picture.  In addition I have mixed feelings about the fact that he wanted a teethy grin, had he been away from home so long that he forgot that Mom can't smile like everyone else or had he grown use to me over the years and didn't realize I couldn't give the camera the smile it wanted?  I didn't ask him about it as he had a lot more important issues on his mind that day as he found out that morning he was being deployed.  Thanks for listening! Jill

Title: Re: A place to vent
Post by: marg on September 30, 2007, 12:47:45 am

Jill,   Sounds like he was preoccupied... and with good reason..........I'll pray for him.
Margaret

Title: Re: A place to vent
Post by: Jill Marie on October 07, 2007, 02:53:02 pm

Thanks Margaret,

Our son called us this morning to let us know he's doing fine.  They are all settled in and should start doing there job in the next week or so, that's when I really start worrying!  I best get going as he placed his request for a care package which means it's time to bake the German  Chocolate Brownies and get them ready to mail along with some energy bars to keep him going.  Jill

Title: Re: A place to vent
Post by: marg on October 07, 2007, 11:22:57 pm

Great idea Jill.  Chocolate helps make most things a bit easier (at least for most of us) and I'm sure your son will appreciate all the love that is going into those brownies .
 I have a nephew who was in the first Gulf war....... he is home now but I haven't forgotten how it felt to have him over there.... or how much we prayed. 
      Let your son know that there is a teacher in Washington state that appreciates him and all service men and women.  On Veterans Day I will share (as I do every year with my class), how important our service men and women are.  I have a banner that I put up that says   ' BECAUSE THEY SERVED ... WE STAND FREE '  and I send home stars for the kids to fill out with names of family members who have served our country.... I fill them out too: my nephew (the marine), my dad (WW2), my grandfather (WW1) etc.  These kids need to understand what it means ..and what it cost to live in a free country.  My husband's uncle gave his all in WW2... he is still on the Oklahoma .  I am very grateful to be an American..... please tell your son thank you and that I appreciate what he is doing.
Margaret
       

Title: Re: A place to vent
Post by: Jill Marie on October 12, 2007, 10:04:14 pm

Hi Margaret,  I will make sure and tell our son that you are praying for him, that you appreciate what he and all the others are doing and most importantly that as a teacher you share with your students what it means to have so many serving our country through out the years. 

Do you live in Vancouver?  We live in Spokane and I grew up in Goldendale, Wa.

Our son was in the second grade when the first Gulf War started, when he was in Iraq in 2005 his 2nd grade teacher (now a 4th grade teacher) had her students write to him.  I'm glad your nephew made it home and I'm thankful for people like you that understand what we go through.  My Dad was also in WWII and we have attended 5  WWII Reunions since 2001. 

When our son was home he went to the Bookstore to get something to read on the long flight home, he left without getting what he wanted!  He stopped by the current affairs dept. and found magazine after magazine and books about how we shouldn't be in Iraq and what is going wrong in Iraq.  It was more than he wanted to deal with considering what his fellow comrades have been through and what he and others will be dealing with soon.  So, I know it will really help his spirit to know that you took the time to let his Mom know you are thinking about him and all the other soldiers watching over us.  Thanks, Jill

Title: Re: A place to vent
Post by: marg on October 12, 2007, 10:50:44 pm

Jill,  You are so welcome.... 
    In my opinion, whatever people's feelings are about 'wheather or not  we should be in Iraq '  ...   we SHOULD always support and appreciate our men and women who are over there  (or anywhere else they are sent) for being in service for our country.   Their conditions are often very hard and they don't need to have the added pressure of feeling that they are not supported.  They don't make the policy.... they just enforce it   ( much smaller example.... I had no imput on the 'No Child Left Behind' and WASL ... but I must follow those policy in my teaching.... wheather I agree 100% or not because it is my job to teach using the standards I am given).
     
Margaret

Oh, by the way... I live in a smaller town in Southwest Washington called Longview (about 45 miles north of Vancouver). 

Title: Re: A place to vent
Post by: antoinette on October 29, 2007, 11:48:38 am

You are right Gary... I should vent some too as I have been so discrete about my AN than the children (mine are almost older than me, daughter 57, sons 42 and 43) they may think it is a bit of wax in one ear. Hell they catch me often in "timber" style but it must be my excitement about seeing them. Rare events now. Reading a joke from someone," I do not mind being schizophrenic, it beats being alone"  I will soon pray to exchange the AN for that one. My children and friends never heard much about it and they may look at me with suspicion that I invented the little bugger. No one has heard of it before, they feel safe. They may wonder if "I" am safe to be with.
Now that is venting!!!!  Is the list manager going to delete part of it?
Gary, I hope you are OK. I have not forgotten anyone from ANAWAY but perhaps one or 2. Not you, Not Jeff, not Gail, not... well I will stop here.
ant

Title: Re: A place to vent
Post by: Soundy on October 30, 2007, 05:13:56 pm

Being an army brat that watched young men be shipped off to vietnam I pray for
them all... I have 5 former Cub Scouts overseas...

We do a gift of caring program when we sell Girl Scout Cookies ...the  last two years we have
ordered asked people to buy extra cookies to send and each girl orders what she can afford...
doesn't seem like much, but my Girl Scouts are third graders and aside from the cookies ,
notes they send with them and prayers , there isn't much they can to show they care ...
this past spring my 6 Girls sent 5 cases (60 boxes) of cookies to troops in Iraq... we get feed back
from the guys that get them and they are greatful that a bunch of silly little girls would
take time to get the cookies together , write notes to go with them and package them to
ship... we also bought cookies to give to the children of my Cubs that are serving

Prayers that your son stays safe...

Title: Re: A place to vent
Post by: GM on October 30, 2007, 05:25:21 pm

Ant

I'm doing fine!!  Glad to see you here.

Gary

Title: Re: A place to vent
Post by: mindyandy on October 30, 2007, 07:50:57 pm

I have a problem with people who do not have AN understanding what I'm going thru. I dont know if my husband quite understands what all the STRANGE symptoms are. I dont really even know until they happen to me & I have to go to this website to find out if things that are happening to me are normal. Liket the whole fatigue issue.....THATS VERY ANNOYING. I dont like being fatigued and going to bed at 8-9pm. I do understand that the brain is working overtime to compensate with the balance issues....etc. VERY FRUSTRATING!

Title: Re: A place to vent
Post by: marg on October 30, 2007, 11:30:34 pm

I know what you mean Mindyandy... I just went back to full time teaching 2 weeks ago and I am so exhausted that I can hardly walk out to my car at the end of the day.   Today I came home and laid down for a nap and I was out like a light.   I am on such 'brain overload' with the balance issues (my right leg hurts because I walk differently now to compensate ... & I have to go get massage theropy every 2 weeks or so to help), the SSD ...  very difficult to hear my students especially my very soft spoken girls ( 7 year olds)  and my facial paraylisis ... getting better but after teaching for a couple of hours my face feels frozen on the AN side and my words don't come out as clearly  ( I have no idea how I am going to cope when I do parent teacher conferences in 2 weeks and do 5 or more conferences back to back).   You are right.... as much as I try to explain to the other school staff members.. they don't get it .  They say 'you look so good ... so much better than when school started' - but they can't see the physical issues I deal with on the inside ..all the time  nor do they understand how exhausting it is. 
     I am so glad to get home at the end of the day ..... but then I look at all the paperwork I need to do here and can hardly stand it ( I'm too brain tired to do it).. I'll try again this weekend ..............I still have all the surgery and disability papers sitting in my dining room.... need to get them in folders   and put away...but I'll be  working on grades and reportcards for the 3rd weekend in a row  so... who knows.    It is much harder going back to teaching than I thought it would be....... but I didn't expect to go back SSD..... I was told I had an85 % chance of keeping my hearing. >:(  .. I just hope I can hold out for 5 more years so I can get my full retirement.   
     Guess i'm just over tired..... I'm glad we have a place to vent where others  really understand.
Margaret

Title: Re: A place to vent
Post by: Lorenzo on October 31, 2007, 12:41:34 am

I know how it feels. I'm lucky though,, I teach studio practice to design students, 18-24 year olds. But the noise levels when they all talk to each other is just too much. The first 8 months post CK were the worst ever. I ahd to ask to be relieved of some duties, avoided all meetings and activities that were NOT related to direct teaching. I was always so exhausted at the midday mark, I usually  had to go and nap in the car to recover, before the next assault! As for the colleagues, don't mention them. They have absolutely and completely and most definitely NO clue! At all. 'Sure you look great!' is the classic one, which shows exactly how little they do understand, no matter how much explaining I did. Gave up in the end, and avoided them as much as possible.

Now, three eyars down the road, I have an office where I can see students on a smaller group basis, not 40. Meetings are fine again, and brain overload has greatly lessened. Fortunately. I am still a long way away from retirement! Unless of course I take early retirement, which I might yet do... lol

So margaret, I sympathise and I know where you are ina  small way. Mind yourself.

Ciao, Lorenzo

Title: Re: A place to vent
Post by: Soundy on October 31, 2007, 07:52:15 am

My husband is good as far as taking up slack around the house with things me and the
kids have not got done , he is great with them helping with homework and taking them
to things I used to do ect... but still doesn't get things...

my heater on my truck has decided not to work... we were going to take it to garage last
night and drop it off ... he was going to follow  and bring me home ... I told him
not to bring his truck because it gives me a head ache... it is a jacked up 4 wheel drive Nissan..
 he got to use around the farm... him and the kids think it is great... and it is if you have to go
back thru the hollow in mud, snow , rain ect... but it rides rough and on our twisty turny back
roads a few miles in it brings on a killer head ache and make me nauseated...

when they got to garage they were in it and I refused to ride home in it ...told him to go home and
come back with Blazer or I would drive home and take truck in this morning and get the
guy to give me a lift home ... it is only about 8 miles but seems like 50 in a covered wagon...

He was a bit pissed but went home and returned in the Blazer... an extra trip that could have been
avoided if he had done as I asked... he grumbled but not much

I have tried to get him to see I have no choice in these things and little control... but something
I know is going to make me ill in some way and I can avoid I will... he had a choice to do what
would be best for me or drive his toy ... and I had a choice to ride in it and hurt or be bull headed
and make him make things right or I would  by driving self home and making arrangements this
morning to get the truck in and myself back home

It feels good to let off steam  :)

Title: Re: A place to vent
Post by: Lorenzo on October 31, 2007, 08:35:14 am

i think this AN experience makes us all a lot more assertive, it did change me in that way!  :)

Title: Re: A place to vent
Post by: Gennysmom on October 31, 2007, 04:59:13 pm

Marg, be careful, feeling overwhelmed can be such a trap.  I fall into it, and it's hell getting out.  That's what's been really hard, re-setting all the stuff I "know" I can do, because there's a big difference now on what I think I can do and what I really can do....I don't forget about the AN, just forget about the limits sometimes.  And when it's time to go down, don't fight it....when I press through and get extra stuff done, I just fall harder. 

I was thinking about this the other day....how it is so nice to know that there's lots of us here who do get it, and that is a blessing.  It really is a mountain, not a molehill to adjust to the "new you" 24/7 and not go a little batty.  If I didn't have the others here assuring me I was still on the right path, I don't know where the heck I'd be!  Most days are good, but some days you want to scream "get the hell out of my head whatever is making it so weird"!!! 

Title: Re: A place to vent
Post by: debora on October 31, 2007, 05:24:01 pm

I am going through a very hard time right now.  My dad is in hospice in Mpls and I can't drive the distance to go visit as often as I would like (every weekend).  I have to ask someone to drive me because I get vertigo attacks out of the blue and lately way to often!!!!!  I don't dare drive on the interstate because I am afraid I wouldn't be able to pull over fast enough.  This is breaking my heart.  I am still angry that the Doctors told me radiation has no side effects.  Live and learn.
Thanks for listening.
Deb

Title: Re: A place to vent
Post by: marg on October 31, 2007, 06:18:05 pm

Thanks Lorenzo and Gennysmom,
       I know I need to pace myself..... but I used to (past tense of course ) be able to just dig deeper for the energy needed to finish something... and that doesn't work too well anymore.  I am learning though.  I have no control on the time frame on getting the 7 pages of report card / conference  pages done  but I do have control on how many conference times I offer.... so I am no longer doing 7 in a row (thats 1/2 hour each conferences) , nor am I staying late or doing 9 to 10 a day.  I was at school way too long today and I am only going to hand out candy tonight for an hour (instead of 3 ) then the porch light is off and I'm done.

     Deb,  I hope you are letting your friends / family know that you need a ride to see your dad while you can.  If it's too far could you take a bus or train and stay over night?  What a tough time to not be able to drive.... I'll be praying for you and your dad.
Margaret
     

Title: Re: A place to vent
Post by: Soundy on November 01, 2007, 05:09:22 am

Quote from: Lorenzo on October 31, 2007, 08:35:14 am

i think this AN experience makes us all a lot more assertive, it did change me in that way!  :)

I am more likely to say no and grumble at people than I used to ...used to just take stuff in stride
and go with the flow ... but now I am more vocal and actually it isn't all that bad... especially the
learning to say no part... just wish I learned it sooner when I could enjot the benefits of saying it   :)

Title: Re: A place to vent
Post by: ppearl214 on November 01, 2007, 07:51:57 am

Topic of this rant…. Common courtesy.  I’m pissed… truly pissed… so put on your seatbelts and hold on.

Ya know…. I volunteer a great deal of my time to worthy causes.  I’ve recently been selected by my town (Board of Selectman) for a 2-yr appointment (volunteer post) to sit on the local Commission of Disability Issues.  I volunteer my time on this discussion forum.  I reach out and send emails and make phone calls to check up on others that I am aware that have their own issues going on.  I alert folks to things going on.  I try my best to be a good person.  I “doâ€? because I want to and I was raised to help look out for others…..

Now, I’m not looking for praise…. I seek common courtesy.  Last night, trick or treaters came to my door and after candy was passed out, at least they had the common courtesy to say “thank youâ€?. I’m thrilled parents instill this common courtesy in their children that they actually said it.  As some of you may know, my health has gone downhill lately and I make calls to the dr to ask for help…. Does the nurse or the dr even bother with a call back?  No…. common courtesy would even have the nurse call back to say “the dr is aware of your phonecall and situation and will call you later today to discuss directly with youâ€?.   Nope… nada… not happening.   I had a co-worker in my office recently resign.  Did she bother to work with me prior to her departure to cover issues that would fall on my desk?  Heck no... thus, leaving me and our customers in a state of confusion and flux.   Professionalism and common courtesy would have prevailed if she had taken the time to finalize issues... but... again... nada, nothing, zilch.

There are many of you here on this site… that if I am made aware  of something and alert folks or do an email or phone call to reach out… .not even the common courtesy of a thank you.  There are those recently that I have made phone calls and have shown common courtesy of saying “thank you Phyl for calling to check up on meâ€?.  Now, THAT, to me means more. 

If I have the common courtesy to alert or do or provide or such….. at least a “thank you�… nothing more… just an acknowledgement of common courtesy of a simple “thank you� is all I seek…. It’s let’s me know that my alertness or communications or such has been received and I don’t have to worry if my email or phone message was not received.

I’ve been black-balled lately… and you know who you are.  Well, just remember….. I maintain my vigilance in trying to reach out to all…. To be there for those that need a shoulder or good ear.  I reach out to my town to let them know that someone cares.  I reach out to my neighbors in time of need.  I do all I can, physically and emotionally, to be there for others.

Why the heck can’t folks say “thank you� or “Phyl, I acknowledge�?

Why can’t folks have common courtesy?

My co-worker, who also has extreme health issues, recently shared with me her mantra:

Loving heart.... clear mind.... healthy body... peaceful soul.... blessings one and all

I believe so much in her mantra... and other than my previous-healthy body now retaliating... I truly believe in a loving heart.. a clear mind.... a peaceful soul.... thus, my rant to help achieve... to shed this negative out of my system as it truly does affect my health.

Pissed…. Really pissed…. And this stress of folks being rude is not helping my situation.  I care… why can’t others?

And no, this is not due to over-indulgence of Halloween candy.

Back to your regularly scheduled posts.

Phyl

Title: Re: A place to vent
Post by: Brendalu on November 01, 2007, 09:12:33 am

Phyl,

I am so sorry you are having more health problems..........you do too much for too many people to have more problems.  You need more,  Thank you's and more, " YEAH!YEAH !YOU ARE GREAT!!!  You need to hear that you are much loved and much thanked by mean a hundreds of other folks.  I couldn't have made it through a lot of really rough spots without your support and kind words and huggles.  I'm sending them right back at you.  Plus a big Thank you for all that you do.

Much love and big huggles,
Brendalu

Title: Re: A place to vent
Post by: Mary 117 on November 01, 2007, 10:08:29 am

Phyl, I think you're great. Your posts and guidance are so helpful. I just learned about Chiari malformation. I live in Billings and the TV show "extreme home makeover", built a house here for a woman who has Chiari malformation along with all her daughters. It was a moving episode and after learning about that illness, I can't possible imagine what you go through everyday. Don't let the inconsiderate people get you down, they aren't worth your time, which is so precious.

Thanks for taking the time to care.
Mary
2cm AN, Middle Fossa, HEI Dr. Brackmann, 05/24/05

Title: Re: A place to vent
Post by: debora on November 01, 2007, 03:02:14 pm

Thanks Margaret I appreciate your prayers.  Take care,  Deb

Title: Re: A place to vent
Post by: Desilu on November 01, 2007, 03:48:03 pm

Hi Phyl,

I think it all starts at home. How people were raised. We were always taught to say "please and thank you" it is obvious that some parents did not teach their children right! I always get compliments about my son. People always tell me what a kind, pleasant and courteous young man he is. I guess if I have done anything right in my life, I would say that my son is well mannered! Hang in there, tomorrow is a new day!   Ann

Title: Re: A place to vent
Post by: 4cm in Pacific Northwest on November 01, 2007, 04:10:34 pm

Phyl,

Reading your venting from last night…

Probably the most thankless volunteer job I ever undertook was that of a city “commissionerâ€?. Many  were primarily there as they had a "self-interest" and there was much cronyism taking place. At least your town has a commission to actually address accessibility (or lack there of) of people with disabilities in your town. When I came home from surgery I was 'temporary' disabled (SSD  :-\ ok ok is permanent) and got a handicapped parking permit … I had to deal with a walker, handicapped parking (or lack of) for my caregiver to park her car in, heavy doors that have no automation and I was instructed not to push or lift over 5 lbs due to CSF leaks post surgery. I had this fleeting  ;D moment that I should contact “the mayorâ€? and suggest a “Commission on Disability Issuesâ€? (gasp) then I remembered how thankless the job was in the last commission I served on… and I decided against it. Boards and commissions are always full of politics. I have decided to not “shop localâ€? anymore and head to a city that has good civic planning for people with disabilities to do my consumerism and shopping for provisions. (This is what capitalism is about – let the customer feedback and demand drive the market here… LOL.) Ironically, this is the town closet to me, that I was a commissioner for, has more people in assisted living facilities (mainly seniors) per capita than any other place in Oregon State. No one wants to shop here and they take their dollars elsewhere. (Businesses that are not accessible to people with disabilities are shooting themselves in the foot as the baby boomers age  ;) - I say!) I doubt very little here will change until the mayor (and his counselors) himself becomes disabled and tries to get-a-round town. Maybe then the issues may resolve. My hero mayor is this man back in Canada.

The Sam Sulliven story – in brief
http://en.wikipedia.org/wiki/Sam_Sullivan

His official mayor bio
http://www.city.vancouver.bc.ca/ctyclerk/councillors/sullivan/#bio
He would give our town a big fat “F� for accessibility. Perhaps I should write to him and suggest he rub off on our mayor… here in the USA.

Remember boards and commissions will always have politics and self-fulfilling people there- (always have an always will). I suggest you head to the local library and take out this children’s book

(I am not promoting Amazon.com – it is just they allow you to view the cover of a book and a sample pages in between)

Aunt Chip and the Great Triple Creek Dam Affair by Patricia Polacco
http://www.amazon.com/Aunt-Great-Triple-Creek-Affair/dp/0399229434

She an artist and writer with a disability (dyslexia) who also created this book
Thank You, Mr. Falker
http://www.amazon.com/Thank-You-Falker-Patricia-Polacco/dp/0399231668

Marvel in the fact that the future generation of voters (i.e. those polite, grateful, courteous little trick-or-treaters you enjoyed last night) will be the upcoming voters… and they are being read to (by parents and volunteers) these sorts of books mentioned above.

 

“Thank you Phyl!�

[/size]
 I have read what your post and you are appreciated. Read back a few of your old posts – you will see that you are liked and appreciated. Dwell on the positive… not the negative.

Is your cup half full or half empty?

The co –worker that left you (and customers) in a state of confusion is now your EX- coworker (i.e. you don’t have to deal with that person again) ;D ;)

The co-worker that has extreme health issues is still with you  :) … and says these great mantra’s
“Loving heart.... clear mind.... healthy body... peaceful soul.... blessings one and all�

You got to “keep moving forward�. Know that your efforts are appreciated – just not always expressed by others.

Here is a big ole Mother Canadian Bear Hug coming to you all the way from Oregon State.

Speaking of bears and bear-hugs…I suggest these other great kids’ books … given your feelings and the time of year…

The Berenstain Bears and Count your Blessings
http://www.amazon.com/Berenstain-Bears-Count-Their-Blessings/dp/067987707X

The Berenstain Bears Forget Their Manners
http://www.amazon.com/Berenstain-Bears-Forget-Their-Manners/dp/0394873335/ref=pd_bbs_sr_2/104-6575588-4925539?ie=UTF8&s=books&qid=1193929028&sr=1-2

The Berenstain Bears and the Prize Pumpkin
http://www.amazon.com/Berenstain-Bears-Prize-Pumpkin-First/dp/0679908471/ref=pd_bbs_sr_1/104-6575588-4925539?ie=UTF8&s=books&qid=1193929102&sr=1-1

The Berenstain Bears and Too much Pressure
http://www.amazon.com/Berenstain-Bears-Pressure-Fi
rst-Books/dp/0679836713/ref=pd_bbs_sr_2/104-6575588-4925539?ie=UTF8&s=books&qid=1193929167&sr=1-2

Even though my youngest is almost past the picture book stage I plan to hang onto these books for a while. I just pulled these out and stuck them on the coffee table for my post Halloween grouchy trick or treaters to read.

Another goodie is (I always pull out the day after Halloween)
The Berenstain Bears and Too Much Junk Food
http://www.amazon.com/Berenstain-Bears-Much-First-Books/dp/0394872177/ref=pd_bbs_sr_1/104-6575588-4925539?ie=UTF8&s=books&qid=1193929218&sr=1-1


… maybe do some volunteer time at you local library. There are so many kids out there that aren’t read enough to. They are always so appreciative when someone will take the time to read them a story to.

Keep moving forward! Thanksgiving is just around the corner… a time to count your blessings…

Cheers,

4

P.S. Now come on Phyl  ::) – how much Halloween candy did you really nibble last night? My youngest came home rather sick and grumpy.  She has yet to make the correlation between the consumption of treats and her upset tummy, last night… and the anti-climax that Halloween is now another whole year away and her sad feelings this morning. My eldest too is deflated about having to put away her Pirate costume … and vented. (my teen rolls her eyes so much I think they might just fall out  ::)) I hope Capt Deb gets over her "brain-wreck" soon- we need a leader in a good pirates party… to lift the ole spirits of the sailors aboard the AN ship (even the spirits of those who get drunk just walking in the wind.) Arby Dar! Remember the eve of “all Hallows dayâ€? in the pagan tradition was to get rid of the evil spirits. Don’t let them get to you… today is supposed to be all saints day. Think of the good people…
Think of good thoughts...
http://en.wikipedia.org/wiki/Halloween


P.P.S The best and most productive venting I have seen all year is this dynamo lady… I hope it has you laughing too.
http://www.youtube.com/watch?v=RxT5NwQUtVM

Title: Re: A place to vent
Post by: Sue on November 01, 2007, 04:35:32 pm

Hi Phyl,

You are the best, you've always been the best, and you will always be the best of the best.  I'm  not on here as much lately, but I was just wondering how Phyl was doing and that I hadn't seen many posts from her lately, and then I read your rant.  :'( :'( :'(   Honey lamb, you are a terrific person and I so apprecate you and your encouraging words and your wonderful humor.  I am so sorry you are feeling punk.  I saw the tail end of the Extreme Makeover show and saw it was about Chiari malformation and I now know how to pronounce it!  It's key-ar-ee, right? 

I'm sorry to say, in my experience, it's best not to expect anything out of anybody, and then you aren't disappointed. I'm pleasantly surprised when I actually get a written thank you for a wedding/shower/birthday gift, because mostly I get thanked at the event (if I'm lucky) and that's it.  But, my disappointments aren't on the level of yours, Phyl, because you have a generous, giving, helpful heart and I haven't given of myself that much, truth be told. 

I love the mantra.  It's great.  Perhaps you should add some meditation to that, and see if that helps you.

You are a terrific person and I appreciate all you've done for this forum and for me.

Blessings to you and your family, always.

Sue in Vancouver, USA

Title: Re: A place to vent
Post by: linnilue on November 01, 2007, 08:00:32 pm

Phyll,  You do a fabulous job on this post.  We are very lucky to have a moderator who takes her job seriously, handles issues gently and with respect and looks out for the best interest of all of us here.  You are experienced, knowlegeable and well educated on AN's, their issues, their options and you never have given an opinion when someone makes a decision, even if the rest of us gasp.  You understand that each person is entitled to their own opinion/decison and you never question it in the end.  You make suggestions which are informed and then leave it up to the individual to decide which course of treatment is best for them.  People like yourself never get enough thanks.  But I want to thank you for just being you.  I always read your posts because you always educate me.  You do your job well.  You are everything a moderator needs to be, emapthetic and well informed.  Thank you for being you,  Holly 

Title: Re: A place to vent
Post by: matti on November 01, 2007, 09:00:59 pm

I so agree that common courtesy has gone by the wayside :(

Phyl you have given 1000% of your time, energy and love to all of us on the forum and through e-mails as well as phone calls...THANK YOU THANK YOU:-* 

hugs,
Cheryl

Title: Re: A place to vent
Post by: Lorenzo on November 01, 2007, 10:48:31 pm

...and a BIG HUGE thank you goes to all who contributed to my well being, supported me and made me laugh! Let those be gratefully thanked, and may nobody show any lack of common courtesy and appreciation. Those that shall remain nameless are very much present in my life and prove to me every day that human nature can indeed be humane, alive and kicking. Phyl, you were the first to contact me and call, and for that I am very grateful and thank you.
Thank you all, and you know who you all are.
Lorenzo

Title: Re: A place to vent
Post by: Dealy on November 02, 2007, 06:52:58 am

THANK YOU PHYL-Too many of us take someone for granted until they are no longer there anymore. I always enjoy your posts and you will always be in my heart. I mean that with all sincereity. The world will always judge us for what they want us too be-not who we really are-I hope that makes sense. You are a person who is concerned and has compassion for your fellow person. Their are many on this site I will never forget-as Lorenzo says-you know who you are. Phyl you are one of those SPECIAL people in my life. I feel like you are a member of my family. Please-no matter what-do not change-because YOU ARE SPECIAL- THANK YOU -RON

Title: Re: A place to vent
Post by: mindyandy on November 02, 2007, 12:48:24 pm

Phyl
We all appreciate everything that you do. You always reply to posts (especially to newbies like me) and always say uplifting things to keep our head up. I always look forward to reading your encouraging words. I PERSONALLY WANT TO SAY THANK YOU!

Mindy

Title: Re: A place to vent
Post by: yardtick on November 02, 2007, 03:33:44 pm

Phyl,

You are amazing, and thank you for working so hard for all of us on this forum.  It has been a life saver for me.  It has helped me keep what little sanity I have. 

Anne Marie

Title: Re: A place to vent
Post by: nancyann on November 02, 2007, 04:48:05 pm

For Phyl:  I read your 'vent', & my heart just started crying for you.... I don't like thinking you're upset over what people do/don't do.....  I haven't replied until now, mainly because I don't know how to tell you how much you mean to me/ the 'group'(reading everyone's reply, I hope you see that).   But reading your post.....    I want to scream out "DON'T LET THE TURKEYS GET YOU DOWN"....  don't give anyone that power...
You are who you are, & we LOVE you for it.....    People react differently, PLEASE don't let others' ways get you down.....Keep on 'truckin' my dear, you do all that you do because of who you are, & you are a special star in this world.  ( As I've said before, if I was a guy your husband would have MAJOR competition !!).
& remember to say 'NO' if you're overextended.....   burnout isn't fun.....  Take as good care of yourself(if not more) as you do for so many.
Always good thoughts,  Nancy

Title: Re: A place to vent
Post by: Sam Rush on November 02, 2007, 09:06:06 pm

To Phyl ;;

THANK YOU!!!   For the nice e-mail you sent me this week,,,,,,, and as a doctor, I apologize for your Dr, not calling you back, That was rude, and there is no excuse.

Title: Re: A place to vent
Post by: TP on November 02, 2007, 09:24:21 pm

Phyl, thank you and to all of you that have been kind and supportive to those of us going thru wait and watch, surgeries, recovery and just feeling icky after treatments and/or surgery. What I've learned on this site is helping me provide some support to close friends of mine who have recently been diagnosed with cancer.

I have two very close friends (not related, live in different states), both 46, one female with breast cancer and possibly cancer in other places and a male friend who has intestinal cancer and has been told he has less than 2 years "if" his chemo works. Both recently gotten divorced. Both are raising young kids and had no idea anything was wrong with them. They both had surgery recently and will be starting chemo in the next week or so.

This site has been a God send to many of us. I have learned so much from those of you who are very "gifted" and "sensitive" in supporting folks who have gone thru difficult times. When you think that you may not be appreciated, please remember that your kind words and support do go a long way. The recipient of these gestures will in turn share their support with others and many many people will benefit from just showing some kindness! Our rewards our in heaven!

Title: Re: A place to vent
Post by: chelsmom on November 02, 2007, 10:01:30 pm

Dearest Phyll

I also wanted to thank you for the constant support you give to us.  I know in my most difficullt time with Chelsea, your words were a great source of comfort.  I'm sorry if I'm one of the ones that haven't thanked you.  I was in quite a fog during those awful months and I don't really remember if I thanked all of you for helping me thru.
So, just in case...thank you. 

I'm sorry you are feeling so terrible.  I hope all these loving comments make you feel better.      Take Care.....Michelle


 

Title: Re: A place to vent
Post by: Joef on November 03, 2007, 06:23:40 am

Phyll !!

  Thank you for setting up the "Best Coast" Bunches!! ... I've always looked forward to each one ...  its been great for a few of the newbies to see that we can still have a good time after or Surgery or Radio ...

   Thank you for meeting me for breakfast when I drove up by you to get my kayak ... it was a great diversion to break up that long drive...

   Thank you for moderating!! . its been great talking tho issues with you... You have been taking a much more active role with the forum ... and its been a better place for it...

  and Thank you for being you !!! your very pasionate about life and work ... and when others dont share that passion ... its a source of fustration....

Title: Re: A place to vent
Post by: marg on November 03, 2007, 01:18:08 pm

Phyl,
     What can I say...we appreciate you so much... many times and to many people you have been a life line..... so

THANK YOU              THANK YOU                      THANK YOU         

Margaret

Title: Re: A place to vent
Post by: Omaschwannoma on November 03, 2007, 02:40:35 pm

Hey Phyl,

Just read your recent, most understandable rant.  Never mind asking why people do what they do, as if our understanding will somehow make us feel better or be able to excuse their inconsiderate ways.  Well, it won't because the real answer may just piss us off more!  My hubby works with people and very often I hear him cursing up a storm somethin fierce about "all it takes is one quick phone call.....what happened to common curtosy!  How in the "bleep" do they continue to run their business with discourteous attitudes?  What a bunch of "bleep", how hard is it to figure out?  No wonder they aren't succeeding in their business....etc., etc., etc."  You're not alone Phyl. 

Why just today I had my "rant and rave" fest.  I was called around 10 p.m. last night to sub a yoga class the next day saying it was an emergency.  Okay, I feel for the guy and his emergency so I'll do it last minute interrupting my Saturday with the hubby at home.  It's only for 2 hours with driving.  Just before I leave I get call from my bosses boss asking if I could sub on short notice, she's willing to pay me $5 more (she knows I'm quitting tomorrow due to insuficient pay to work on Sunday not to mention other places pay three times more) I tell her I got the call last night and I accept, graciously declining the $5. 

So, off I go 30 minutes down the road only to find out another teacher is there to teach.  Inhaling and exhaling peace  I lower my shoulders that have attached themselves to my earlobes decreasing the contracted neck muslces.  I turn around to leave and on my way home decide not to waste the travel time and pull into shopping center.  Browsing happily my phone rings.  It's the hubby telling me they're wondering why you haven't shown up to teach.  He tells me he explained to my boss the guy I'm subbing for gave me directions and she states it's at another location and wants to know if I'll travel there and teach even though I'm late!  WHAAAAAAT?!  Hubby reminding me about who I truly am----sigh okay I'll go  So giving up shopping I'm moving on to new location.  Arriving 45 minutes late for an 11 o'clock class there's only one student.  Inhaling peace, exhaling calm, she doesn't deserve my frustration suck it up and remember what you are not  After teaching that one hour I check out but not before writing my own "venting" letter about "......disrespect shown to me by this very large corporation, chicken feed (didn't use that one) for pay (I can't digest it), never being able to plan weekend getaways CAUSE I'M THERE WORKING!, filling in at moments notice only to be jerked around...blah, blah, blah.  Really it was a stern but polite vent. 

This letter continues in my head and when I get home steaming and my hubby says "She told me when she talked with you on the phone before you left she said it was at "blah blah" location."  Screwing up my face I ranted about how that is so not true and how dare she try to make it my fault.  Okay, so I know I'm hard of hearing, and slow with the thinking, nobody gets to use my excuses, expecially to make themselves look better!  I'm no dummy, I just act like it sometimes.  I know I'm "off" but I have an excuse, what's yours?  I'm sorry, I can't hear you when you talk to me in such demeaning tones. 

So this yoga instructor will be signing off at the local gym and searching other venues to continue doing what I do best. 

OOOOOMMMMMMMMMMMMMM

[/color][/font]

Title: Re: A place to vent
Post by: marg on November 03, 2007, 05:41:14 pm

All I can say is good for you Arushi !   I hope you find a better job,,, closer to home....at at  3 times the pay !!
Margaret

Title: Re: A place to vent
Post by: Lorenzo on November 04, 2007, 12:57:26 am

Karen? BRAVA. And "bleep' them. They DO NOT deserve you!
Start your own place, that way you can rant quietly at yourself and work all the hours you want.  lol
Ciao, Lorenzo

Title: Re: A place to vent
Post by: ppearl214 on November 05, 2007, 04:51:43 pm

Hi all,

I am floored... I am overwhelmed... I am humbled... I am appreciative.  Again, I was not looking for praise but just citing personal experiences to note my thoughts about how common courtesy has flown out the window.  I thank you all... for everything... the love and support you all have shown me in my time here on the forum boards (and in private) and I, honestly am quite humbled.  I thank you.

Karen, you KNOW I send you white light and warm huggles... and you are handling crap as well and of all things to do to you... again, where is common courtesy?..... Namaste, hun!

So, again, I thank you all... and if anyone knows where common courtesy has gone, please let me know... as I still haven't seen it for where I seek.

BTW, dr's FINALLY did call (after I got all -- rhymes with "witchy" -- with them) and got my follow up's.  Trust me, I made it VERY known I was VERY dissatisfied with their lack of common courtesy and they crossed the wrong path..... tee-hee. :)

xoxoxoxoxo to you all.... truly.

Phyl

Title: Re: A place to vent
Post by: Soundy on November 06, 2007, 07:23:29 am

I would like to know the same thing... this has also been a resent topic of discussion in
another group I belong to... from kids at school to the lady at Walmart that when I asked
for help getting a crock pot off a high shelf said under her breath What the h*** else am
I gonna have to do here.. I wanted to say well you do get paid and do have the ladder
but me and the friend with me just let it pass ...

I would like to issue a blanket thank you to all who have helped me from this site... I read more
than I post and I guess I am lack in not posting at least a thank you when I read something that is useful
to me , even if I have nothing to add to the discussion... I have got alot of good common sense
advise here and appreciate it

Title: Re: A place to vent
Post by: yardtick on November 06, 2007, 05:25:07 pm

Yes Soundy, I too read more than I post.  I find I have had a lot of questions answered from reading.  So I thank everyone who has posted.  Every now and than I throw my 2 cents in and my crazy sense of humour.  Thanks to this forum I'm met some amazing people.  Thank you again.  We are all in this together.

 I just wish I could go to brunch on Sunday, but Toronto, Ont is a little far away to travel from.  Maybe next time.  I would love to meet everyone in person ;D.

Anne Marie 

Title: Re: A place to vent
Post by: Captain Deb on November 06, 2007, 06:02:00 pm

If It's 1 :30 or 2:00 and my phone rings I know who it is before I answer it. This throaty voice says "How's your head?" I know who it is. My guardian angel checking up on me!

Capt Deb 8)

Title: Re: A place to vent
Post by: matti on November 06, 2007, 11:04:15 pm

We must have the same guardian angel  ;)

Cheryl

Title: Re: A place to vent
Post by: marg on November 07, 2007, 01:22:17 am

     Had my  5  1/2  month follow up MRI last Wed.  and tomorrow I see my neurosurgeon...... I didn't think I would be stressed but all I can think is ...God I hope he doesn't see anything that shouldn't be there.  There are so many things that are going on in my life at the present ( 3 weeks back into full time teaching which is very overwhelming, still trying to adjust to SSD, a mother-in-law who makes major problems from her assisted living place  for many others, a husband who doesn't have a full time job right now so I cover us medically and $$$ )............. I don't know if I could take bad news tomorrow.   My husband won't even be at my Dr. appointment with me because he has to go with his sister to a Dr. appointment for his mother (to try and get her  on anti anxiety meds as part of her daily medication ) ....  excuse me - but he is going to be 'not available' to substitue in the school district so he can go to this appointment for his mother ..... and won't be at my appointment for me !!!!     Normally, he is very supportive, but I admit I feel like I am taking 2nd place (which I don't mind when there truly is a need but why can't his sister do this on her own ! ).

It has gotten so bad with his mother calling us nonstop and saying nasty things that I finally found out how and  blocked her being able to call us  (but we can call her) I just can't take it anymore, I have been the one on the phone for 1 to 2 hours a day for the last 2 weeks trying to sort out the people she is upsetting and I have had enough !!!
 
   Thanks for listening..........................I think I'm just scared about tomorrow ... I was by myself when I found out that I had a brain tumor last December  .... and  I hardly remember driving home.   I just don't want to be by myself again if I get bad news.  I would ask one of my family but they all live 100 miles away . 
I'm just glad  you are all my AN family... and understand.
Margaret



     

Title: Re: A place to vent
Post by: ppearl214 on November 07, 2007, 06:57:55 am

Margaret..... I'm sending MAJOR huggles for your appt and know you have the strength to get through it, even if it's on your own.  Had to do the same thing recently since my bloke was at work. I really wanted him there as he's a very grounded person and if anyone can keep me grounded, it's him.  I'm sorry to hear your mother-in-law is facing her challenges and hope that if other siblings are available to your husband to help out with her, that way he can dedicate his focus to the woman who stands beside in him life.

I know you'll be fine at your appt.... kick some butt and hang tough. I know it will all work out.

HUGGLES!
Phyl

Title: Re: A place to vent
Post by: 4cm in Pacific Northwest on November 07, 2007, 11:18:12 am

Big HUGS to you MARG.

We too are dealing with aging parents as I am from the “sandwich generation� of baby boomers. My husband’s siblings placed my mother-in-law in a nursing home the same week I had my 11+ hour AN surgery out-of-state. My dear hubby was on total overload…

sandwich generation defined
http://www.sandwichgeneration.com/

Marg - You are extra special as you are from the “club sandwich generation�.

club sandwich generation defined
http://www.wordspy.com/words/club-sandwichgeneration.asp

If you need someone to give you a real hug (verses the cyber hug here) my caregiver and I are headed to Portland tomorrow.
(She is age 77 and a “triple decker club sandwichâ€? as she has 5 children, 7 grandchildren and 14 great grandchildren. She is also a widow (her husband died in his surgery) who generously looked after me post surgery once I returned to Oregon. She has gone through major surgeries recently and was home alone  :-\ during her recovery times. Oy ya ya!  To me she a model  8) of strength, perseverance, and faith.  :) A 77 year-old and a 44-year-old post op AN’er hanging out together has been good for both of us as we get each other out-and-about. We are helping each other...) 

She and I are planning an outing in Portland tomorrow but had not picked and exact “where and when� yet …

If you need us- just say so and we’ll be there for you. You have my phone #...

We could find a nice little place that serves club sandwiches. LOL ;D

Cheers,

4

Title: Re: A place to vent
Post by: TP on November 07, 2007, 09:34:17 pm

Marg, you are AWESOME! Being strong is great, it gets you thru life - however, there are times when we need to realize we can't do everything and one of the most important words I've learned to deal with is NO. Sometimes we have to say NO to people, even relatives. That is hard to do but once you say it it sure gives you freedom.  I am going to say a prayer for you tonight but if you do end up going to the DR by yourself, ask one of the nurses in the office to come into the room with you and sit with you while your Dr tells you the news. Hopefully he/she will be sitting there for a few moments and will leave but if the news is tough, the nurse can be there to hold your hand or give you a hug. Either way you will feel better having someone else sit with you while your Dr shares the news.

Title: Re: A place to vent
Post by: Jill Marie on November 08, 2007, 12:48:17 am

Margaret,  I understand your being worried about your doctor visit tomorrow, after what you have been through like we all have been through, we tend to over worry.  I'm not going to tell you everything will be fine because I don't know that for sure, but chances are the MRI won't show anything new.  Although physically you will be on your own tomorrow, emotionally we are here for you, thinking about you through out the day and looking forward to hearing that all is fine.  If not we are here for you as well.  I 'm betting that for Thanksgiving this year you will be Thankful that the doctor said everything is fine.  Take Care, Jill

Title: Re: A place to vent
Post by: marg on November 08, 2007, 01:38:50 am

Phyl, Hillary, TP , Jill Marie and all of you who have sent support my way in the last  2  days .... A BIG Thank you all  SOOOO  much !  My husband was able to be with me after all .  I told him how I felt this morning and he told me that he would do whatever he could to be there for me.   I found out later he wrote a letter to his mothers doctor (about what she has been doing ) and took it over there and gave it to the nurse just before his mom's appointment.  He told his sister if their mom's appointment went  too long ( hers was at 2:45 and mine was at 3:30 - about a mile apart ) he was leaving and she could finish handling  mom's appointment  without him  so he could get to my appointment  to be there for me ... I can't tell you the relief I felt when I drove up to my neurosurgeon's office and there he was standing outside waiting for me.  My 'white knight' is back up on his horse   :) .

     Jill you were right,  my MRI was clear and the doctor said I was doing great ....as a matter of fact he said my facial paralysis was recovering  way above average and that made his day.. I have much to be thankful for this Thanksgiving..... my positive recovery, my husband putting me first in a time I especially needed him ( and his sister supporting that)... and my AN family.  I love you all very much -  there couldn't be a better group of people!
Margaret
P.S  I am also thankful  that they put my mother-in-law on anti-anxiety drugs  on a daily basis .... I love her and before she started acting out she was a wonderful person ...and one of my best friends.   I am hoping to see at least a bit of 'my friend' again so I can enjoy being with her.

Title: Re: A place to vent
Post by: kate on November 16, 2007, 11:03:22 pm

I am an old time ANer, post surgery since 2000, so I only check in here once in a while. I read the first four pages or so of this thread. It is SO refreshing to see that someone started a thread on A Place to Vent. In the old days when I was a newbie and very active on the forum, there was a really good and healthy mix of positive cheery attitudes, and venting and whining types of posts. It seemed to me like a healthy balance.

When I first came back into the forum a few months ago (or was it a year ago?) I noticed that things did seem sugar coated. I had the sense that people were in general putting on happy faces (no pun intended, since I am one with facial paralysis!) or being very easily cheered up by responses from others when they did mention feeling bad. So I am happy to see now that people have been venting here. Some of the humor in the venting is really great too.

In addition to being an ANer, I worked in the counseling profession for twenty years and am now in private practice. I had written an article for people undergoing major life changes (such as brain tumors, job loss, relationship ending) and one of the points I make in it is that we need to be heard, and need a place to express ourselves. I also mention in the article being patient with loved ones who say the wrong things, because they don't know what to do sometimes except to try to cheer us up. People might say things like "when one door closes it opens up another one", which usually does turn out to be true in life, but when said at the wrong time in someone's healing/grieving over their lost good health, it can sound trite and unkind.

Well, enough to my bandwagon here. So here's to a place for venting!  Kate

Title: Re: A place to vent
Post by: nancyann on November 17, 2007, 07:11:15 am

Hi Kate - glad to see your post!!   You helped me so much with questions I had re:  facial paralysis a while back.   I'm having surgery 11/20 with a Dr. Patrick Byrne at Johns Hopkins in Maryland.   He deals with alot of facial paralysis patients & is one of a handful of doctors (in the world) who is doing a new procedure called Temporalis Tendon Transfer(TTT).   I'm going to have a 'Mona Lisa' smile, & it will lift the droop & open up the nasal sinus that's paralysed.   Obviously movement never came back to my face, but I'm glad I waited because this new surgery is almost a miracle as far as I'm concerned.   Well,  take care Kate,  always good thoughts,   Nancy

Title: Re: A place to vent
Post by: kate on November 17, 2007, 06:04:59 pm

Nancy,  Thank you for remembering me, it has been a long time since I have visited the forum. Best to you about your upcoming surgery. I am interested in seeing how it goes.  Be well.  Kate

Title: Re: A place to vent
Post by: TP on November 18, 2007, 07:18:30 pm

NancyAnn, my prayers are with you on your upcoming surgery. I know you are excited and we are too. We want to hear all the details and pray that your recovery is successful and painless! GOD bless you!!

Title: Re: A place to vent
Post by: er on November 18, 2007, 08:35:33 pm

Hello NancyAnn
good for you!!!! :) I'm glad to hear that you are happy!  :) I hope this works my prayers are with you..(http://<a href="http://photobucket.com" target="_blank"><img src="http://i194.photobucket.com/albums/z76/88528852/1zt9.gif" border="0" alt="Photo Sharing and Video Hosting at Photobucket"></a>)
I was talking to some friends about this forum. I Thank God that I have found this place because it really has help me 

Title: Re: A place to vent
Post by: marg on November 18, 2007, 11:37:22 pm

Nancy,  you will be in my prayers for your surgery on the 20th.  I am so glad there is a new procedure that will help you.  Can't wait to hear from you post-surgery. 
Margaret

Title: Re: A place to vent
Post by: lori67 on November 19, 2007, 01:17:39 pm

Nancy - good luck on your surgery!  You will be your own priceless work of art!   ;D
Lori

Title: Re: A place to vent
Post by: 4cm in Pacific Northwest on November 19, 2007, 02:17:16 pm

Hugs Nancy!

Prayers are being said for you.

Be sure to have someone update us

4

Title: Re: A place to vent
Post by: Captain Deb on November 19, 2007, 06:03:35 pm

Good Luck on your surgery Nancyann! New surgical techniques are being updated at lightspeed--it's just incredible! My husband just had lumbar disc surgery as an outpatient! The last time he did his back in 13 years ago they wanted to fuse the vertabrae and stick him in the hospital for a week. Boy is he glad he waited.

Please update us on your outcome and recovery so others can become aware of this new technique and maybe aquire some hope for a new form of treatment. Best of luck to Ya!!!!!!

Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)

Title: Re: A place to vent
Post by: Raydean on November 19, 2007, 06:35:38 pm

Hi Nancyann

I am so excited for you with all of the possibilities that this new surgery brings.  But I also want you to know how beautiful you are inside and out.  Know that your beauty shines thru in every post
Each one of us will be there with you in spirit  tomorrow.

Hugs and Love
Raydean

Title: Re: A place to vent
Post by: yoga52smh on November 19, 2007, 06:40:26 pm

Good luck to you Nancyann.  You are in my prayers. Can't wait to hear the good news.  I always enjoy your posts.  Best wishes always,

Sue
  :D
 

Title: Re: A place to vent
Post by: Janet on November 19, 2007, 06:43:49 pm

Nancyann,

Best wishes for a quick recovery and something to smile about. I'll be thinking and praying for you on the 20th.

Janet

Title: Re: A place to vent
Post by: Larry on November 19, 2007, 06:50:20 pm

We're all fightin fer ya down under Nancy

I'm sure it will all go well.

be very interested in the procedure details after yer all fixed.


laz

Title: Re: A place to vent
Post by: mindyandy on November 19, 2007, 08:42:56 pm

I'm thinking about you too. I cant wait to hear back from ya. HUGS...............MORE HUGS!
Mindy

Title: Re: A place to vent
Post by: Jill Marie on November 20, 2007, 01:06:54 am

Nancyann, I know I'm too late to tell you this before your surgery as I hope you are sleeping peacfully right now, but I just want to say that I too will be thinking about you tomorrow and can't wait to hear how you are doing.  We all have our fingers crossed hoping this is the best Christmas gift you will get this year!

Marg, I'm so very, very glad that your wonderful husband, your knight in shining armor, met you at the doctors office.  Just as I hoped, it looks like you will have a very Happy Thanksgiving! 

Soundy, you posted a while back about being an Army brat and watching them go off to Vietnam, I remember that all to well myself.  Thankfully a lot of the Vietnam Veterans now wear hats that say they were in Vietnam so I get a chance to THANK them for what they did when they come into where I work.  I hope all 5 of your cub scouts make it home.  I love what the Girl Scouts are doing with the cookies, it really lifts the spirits of the troops when they see that those back home really care.   Our son has one more mission then should be headed back to base & hopefully home for Christmas! 

Happy Thanksgiving to all, Jill Marie

Title: Re: A place to vent
Post by: Brendalu on November 20, 2007, 06:10:06 am

Prayers and good thoughts, Nancyann!  Warm wishes and all the rest. 
Hugs,
Brenda

Title: Re: A place to vent
Post by: Cheryl R on December 02, 2007, 02:18:05 pm

   I think I have been handling starting to lose  all of my hearing as good as one can but today it is really getting to me to not hear Christmas music well.       Music has been garbled for a time now so I hardly listen to the radio anymore.              The music from Charlie Brown Christmas has been my most favorite at this time of year and I would listen to it almost every day and it sounds so tinny now.                                     I know I am fortunate to still be  "normal" in so many other ways but today I am mourning  what  has been  an important part of the Christmas season and one I will really miss.           I am not sure if the cochlear implant in the future will let one hear music well if it does work.
                      Thanks for listening!                           Cheryl R

Title: Re: A place to vent
Post by: nancyann on December 02, 2007, 04:26:20 pm

Cheryl R:  I cannot imagine what you & others who are in your situation are going thru.    I have single sided deafness & don't know what I would do if I started losing hearing in my good ear.   I hope there is something out there for you to retain/strengthen the hearing you have left.   In this day & age you'd think there'd be something available.... I hope you find it soon. 
Putting good thoughts out to the universe for you,    Nancy

Title: Re: A place to vent
Post by: marg on December 02, 2007, 04:28:58 pm

Oh Cheryl,   I do have hearing in my right ear - but right after the AN surgery and  for about a month - all music sounded garbled and tinny  in my hearing ear ( brain trying to sort thinks out I guess)  I couldn't stand listening to the radio or any music - just cried when it was on.   I'm so sorry about losing all of your hearing.... and there is a grieving process when something like this happens ... and it will never be the way it was again.  
        Although I can hear music 'ok' now with my right ear and am adjusting to being SSD ...  I had something happen about 7 years ago that was my first huge health issue.  I was outside when  a  large chlorine leak  happened from a local mill and I lost my ability to sing ..... and for a while  to talk without extreme pain and loss of voice.  I can talk 'ok now' ( I use a mic. system in my classroom so I don't strain my voice) but my ability to sing has never come back.... I was a voice major in college  and sang at weddings, funerals, in choral groups and I taught voice lessons too..... I was depressed for over a year and it was a long grieving process for me...a vital part of 'who I was' ... was gone forever.  Cheryl - it is okay to grieve, be angry , cry and vent.... get it out !!!  I hope you have supportive family and friends to help you through this very tough time.  I found the first year the hardest of the change when I lost my voice ...especially at Christmas as I sat on the side lines instead of being up with my friends singing.
    With this AN diagnosis, treatment decision, surgery  - unexpected loss of hearing ( I had an 85% chance of keeping my hearing) and recovery.... I found a wonderful counselor to help me through.  That might be helpful for you too.  I send you my love and prayers.  Next year shouldn't be as tough...you will have been through it once and you will know you made it through once.... you can do it again.
Margaret

Title: Re: A place to vent
Post by: 4cm in Pacific Northwest on December 02, 2007, 04:45:44 pm

Margaret,

You are a wonderfully postitive woman.

Thank you for your above post...

Hugs...

4

Title: Re: A place to vent
Post by: marg on December 02, 2007, 04:46:53 pm

You are so welcome..... we all need to be here for each other  4  .... and you are too.
Margaret

Title: Re: A place to vent
Post by: Omaschwannoma on December 03, 2007, 07:50:37 am

Cheryl,

I "hear" you, but "feel" your emotions more and my heart goes out to you.  You are allowed to show your unhappiness, anger, frustrations, etc.  This surely is not easy for you and I can tell your doing your best to cope.  I too am losing the hearing in my only serviceable ear, albeit it's mild on the high end, and can't compare to what you must be coping with, but I can relate in a small way.  Vent on girlfriend!  Remember Cheryl, you are NOT your ears, you are much more than that.  Do not define your happiness by what you cannot "hear", rather by what you can.  And it is possible to "hear" without the ears! 

Title: Re: A place to vent
Post by: Cheryl R on December 03, 2007, 09:57:31 am

Thank you to everyone  with your support.      Hearing loss is such an invisible disabilty and it is hard right now when I am around people.      Anyone that knows me very well knows I am losing my hearing but they have no clue what it is like.    Being around any noisy area throws me off and it is frustrating to know there are conversations going on and I have no clue what is being said.  I can only talk to people if I am right by them so am still working for the time being.    It is the small things that really are rather minor like not being able to enjoy the Christmas music that are bothering me more than the whole big picture of how life is changing.        Life is all day by day any more.
Thank you Arushi,   I so enjoy your dog updates as having met you at the symposium can picture you with your doggy friends.    You are so small and dainty so 2 bull mastiffs would be quite a challenge.         
Marg, how hard it must have have been for you to give up the singing that sounds like was such an important part of you.    I can not even imagine how hard it was to be forced to give it up.
Nanacyann,you have been in my thoughts with hopes  of a good outcome from your surgery. Since i have been thru facial problems too and good results from my nerve graft I know how much it means to just look normal!           
   Jeff, you have been such an inspiration as I have told you before and am glad for every new
challenge you are overcoming!             Snow is not easy with balance problems so that is super for you to be able to handle it now. 
                                    Thank you to everyone,                Cheryl R
     As

Title: Re: A place to vent
Post by: GM on January 03, 2008, 05:32:52 pm

Any venting for the new year?

Title: Re: A place to vent
Post by: yardtick on January 03, 2008, 05:55:47 pm

YEP,
Why does an employer allow you so many sick days and it is in the policy and procedures and than when it is time for your review they penalize you if you should use some of your sick days?  I'm spitting mad over this.  I lost major marks over this and as a result my increase wasn't as high as many of my co-workers.  As I was having my review my manager kept saying "We understand Anne Marie you have a medical condition and as a result you get terrible headaches and your hearing is an issue.  We understand you have many Dr appt because of your condition."  Yeah right >:(   Understand my behind!!!

Okay I vented,
Anne Marie

Title: Re: A place to vent
Post by: Static on January 03, 2008, 09:59:43 pm

WHAT???  You were actually penalized for taking sick days you were allotted and they know you actually needed them because of the AN situation and your "condition"?    What kind of horse**** is that?  Vent, I think I'd have to stick my foot up someone's arse!  You have alot more patience than I do.  I seriously think I would have gone a little ballistic on someone  if it was me!   I'm annoyed at them for you too!  What the heck is wrong with people these days.  Doesn't anyone have any compassion anymore?   

Title: Re: A place to vent
Post by: marg on January 03, 2008, 10:52:32 pm

Anne Marie was anything said like.....the reason you didn't get a larger increase (like the others) was because of  your use of sick days (that you were alloted) ?  If you didn't go over your sick time I don't think an employer can penalize you for use of sick time provided.  I think I would check it out at a higher level.  How can they  penalize you if you are staying within their guidelines?
   What a crummy deal !!!  If you are being finanicially penalized because you're not doing you job as well as the others - that is one thing but if you are being penalized because of your medical condition that is a whole other issue and one you should be able to pursue. 
   
Margaret

Title: Re: A place to vent
Post by: OMG16 on January 04, 2008, 02:59:35 am

Just a small disclaimer before I begin to vent.  My son does not have an AN (he has brain tumor with some of the same issues) and his complications are very rare.  Newbies do not be afraid as everyone is different and most surgeries go well.

This is very hard for me to say so I will do my best.  We were told after surgery that we could not say anything to anyone.  Now after the fact we are told we still can not be specific.  So I will try to vent but in some cases I will have to be vague.

We did all the right things and still ended up with a questionable surgery.  We only found wonderful things out about how our son's surgery would go.  Had I known that the research is only as good as the researcher and how they can get away with a no major complication or fatalities in their data if they some how relate it to a previous or unrelated post op complication then they do not report it.  This is not true in all cases it is only true that I know of in our case.

So my son has suffered severe complications and still has the brain tumor.  We were told half of it was removed and a MRI taken days after the surgery show none of it had been removed.  I am angry that doctors sometimes don't tell all and sometimes they do not tell you the truth.  With information we have power and we were not given that courtesy.  I am angry that some of the AN members are being told that their surgery was a success when they have post op complications.  We were told that our son's surgery was a complete success.  I am angry I gave my trust freely and did not question this going against my gut feelings.  I'm angry that no one could say anything to us about what had happened due to they had been quieted (very vague here).   I am very grateful for the Doctor that gave us the records that he though we should have before they  were "lost".  This is the only Doctor that we have experienced this sort of thing with so please do not take this any other way that venting.  We have encountered so many caring and helpful providers before this and afterwards also.  We do not trust blindly anymore and that is a good thing.  We talk to his providers now and explain what we expect from them and what they can expect from us.  They have been more than understanding.  I hate to see the posts where providers tell members that it is a non issue or do not even give the courtesy of a returned call.  To me that is unacceptable and am sorry that this happens.  That just increases the stress of an already stressful situation.

I sometimes wish we had the pre surgery life back.  Then I think about what my son goes through each day with a smile on his face.  It does get easier everyday and most of the time I am not angry, sad, frustrated or overwhelmed.  Our life now is better than before surgery.  This has made us realize how lucky we are and we all are better people because of it.  I do miss not being able to just go and get my hair done without getting someone to stay with my son.  We no longer have the freedom we took for granted.  I now need to work full time due to the finacial strain it has put on our family.  I am very greatful that I am allowed to work at home so I can be home with him.  We no longer own our house due to the bills that go along with having a tumor.  I am sorry that my son can not experience college like all of his friends that started this year.  He can no longer drive.  He has social and cognitive issues that create a huge social barrier with people his own age.  The upside is he does not realize this most of the time.  Also while my friends are dealing with an empty nest we do not have to go through that.  This is selfish on my part but still a great complication.  I'm worried that the tumor will grow and cause additonal problems.  I'm angry that he can not use one side of his body, that he has headaches, nausea, vomiting, dizziness and visual problems to name a few.  I wish I could find a support group for him as the ones we have attended have been adults and they were even talking about adult relationships freely which we did not think was appropriate for a 16 year old.  I'm sick of being tired trying to do it all.

I do not want to scare anyone.  I only needed to vent and tell our story.  I didn't even realize it until I started reading this post.  I wish I had the information I now have before surgery.  We were told by a Counselor that we were chosen(so to speak) for a reason and that maybe it is to help other people and prevent them from having to go through what we have gone through.  If anyone needs anything just let me know.

Captain Deb I am sorry that you have such severe headaches and can not get the disability that you have a right to.  Phyl I admire you very much as you have been through so much and give huggles freely when anyone needs them.  I feel as if I know you being a guest for almost 3 years.  If you need to edit/delete this post I will understand so please do so if need be.  To the rest of the forum I look forward to getting to know you through your posts.

To end on a postive note I am very thankful for wonderful supportive Providers that he has had and does have.  I am blessed to have a Husband who loves me even after all of this and after 26 years (high school sweethearts).  I have a very supportive Family and friends who seems to know just when I need help the most and step in without me even asking.  Last but not least I am thankful for this forum.  This is as far as I'm concerned the best.  16

Title: Re: A place to vent
Post by: Brendalu on January 04, 2008, 06:00:45 am

16,

I am so sorry your son and you and your husband have had to go through all of this.  I will keep you all in my thoughts and prayers.  Thank you for your post.
Brenda

Title: Re: A place to vent
Post by: ppearl214 on January 04, 2008, 06:41:49 am

16,

Nothing to edit... nothing to delete.... I'm sorry to hear life hasn't been all that kind over time... but now that you are here, venting amongst those that understand.... well... yeah.... TGIF huggles.  Hang in there and please tell your son that regardless of what is going on, we're cheering him on as well.  He sounds like a truly courageous soul :)

Phyl

Title: Re: A place to vent
Post by: Captain Deb on January 04, 2008, 01:40:08 pm

Ditto to what Phyll and Brendalu said. This is a support forum for patients and family members alike. Thanks for sharing your story--posting it makes it lose some of it's negative power. Thanks also for thinking of me. (I got a letter from my attorney--he's written a rather forceful letter to the judge in my case asking her to s**t or get off the dang pot! It's only been 11 months since my hearing!)

We're here for ya!

Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)

Title: Re: A place to vent
Post by: OMG16 on January 04, 2008, 05:21:56 pm

Thank you every one you are all so kind.  Your right I feel like a load has been lifted just writing some of my complaints.  Captain Deb please keep me informed I will be anxious to know how this turns out you can always Pm me anytime.  Phyl you are so right about how wonderful my son was and is.  He has always been a very happy boy from the minute he was born.  He has been a delight to raise and we have not had any problems with him at all.  He does not deserve this (not that anyone other than the Doctor he had would deserve this) and to find out at such a young age about how bad humans can be, well it just broke my heart.  Brenda I know this is not the correct post but can you PM me with the name of the manufactorer of the androgel none of his doctors or the pharmacist had heard of a gel the you can rub into his shoulders.  Everyone take care and Know that I think of you everyday and wish you the best that life has to offer.  16

Title: Re: A place to vent
Post by: marg on January 05, 2008, 02:44:38 pm

16 You and your family are in my prayers..  Yes, this is a great place to receive support and care from others who understand.  When the stress of life and unexpected situations get overwhelming..;.. I know that my AN family is here for me... as I am here for them.
   
     We may never met in person -but I feel closer to many of you than the people I see and work with every day.  My boss (who has some hearing loss from ear infections and eardrums breaking in the past ) told me this week  'this is the way things are now and you need to move on' end of story.  I told her that I was only 7 months from surgery and I was still running into new situations that I had to deal with in a new way because of being SSD.  She just doesn't get it.  She must think that some partial hearing loss is equal to : SSD, balance issues  and partial facial paralysis that I deal with (off and on) all at the same time on a  a daily basis ! >:( .   Just because all the health issues I deal with are not visible ... gee - I guess they can't be that tough to deal with.  Sometimes I wish I could touch  these people and they would have these health issues to deal with for a week (especially the bosses) then they would have more understanding of what a struggle it is on a daily basis to continue to do the job you had before surgery  !
    Ahhhh, I feel better venting.... thanks all
Marg
   
     

Title: Re: A place to vent
Post by: pattibobatti on January 05, 2008, 05:31:30 pm

16,

I hope you can have a nice evening with your son and husband tonight.  I think it has to be harder to have a child go through all of this rather than yourself.  My heart goes out to you.  It iis wonderful to have a caring extended family and I am sure they have been able to lessen your burden. 

Have a wonderful evening.

From one high school sweetheart to another,
Patti

Title: Re: A place to vent
Post by: OMG16 on January 06, 2008, 03:18:30 pm

Marg I do not know how it is personally but while watching my son I can only imagine.  My heart goes out to all of you who suffer with indifferent people who think they know.  We did experience this aspect also.  Everyone in the family who had strokes thought they knew what it was like and how my son should react.  Little did they know that he should have died with the amount of brain damage.  All of them had relationships already developed and had already been through school and had their careers and were able to retire.  Getting through school and trying to establish new relationship is a challenge for any teenager and this just makes it even harder. 

Patti thank you we had a wonderful night.  My son told us last night he wants to become more independant and asked us to help him.  I was so proud.

Off topic here but does anyone know anything about independant living classes and also about SSI vocational rehab.  Or maybe you can point me in the right direction as far as where to post this requests.   16

Title: Re: A place to vent
Post by: Larry on January 06, 2008, 03:19:53 pm

16,

A terrible plight your son has had to endure. Its also very tough on those around him like yourself. My thoughts go to you and your family.

Laz

Title: Re: A place to vent
Post by: marg on January 06, 2008, 05:25:50 pm

16  It is so true that we all 'think we understand' if we have something similar...and I try to remember that most people are trying to help.  Having a adult (or almost adult) child live with you and not have a 'normal life'  must be so hard. 

     My widowed sister has a son (a former marine from the first Gulf War) who has been living with her for over 10 years because he is very sick from what happened to him over there and he can't work.  My heart goes out to you, your son  and your family.... for these complications from his surgery  continue to affect all of you on a daily basis.
Marg

Title: Re: A place to vent
Post by: OMG16 on January 06, 2008, 09:03:43 pm

Thank you Larry and Marg.  It can be very difficult on days when he is confused and doesn't understand why someone was able to take advantage of him.  He doesn't always see people for who they are and he trusts everyone.  I hate to be the one that always has to point that out to him.

For the most part most days are great and there are no problems just daily living stuff.  We are almost 3 years post op and have worked through most of our negative feelings.  The hardest part for all of us is we can not give specifics about our situation so not even our primary care Dr knows exactly what happened.  It is so unbelievable that if I didn't see it in black and white I would never have believed it happened.  These sort of things don't happen in the US and if they do they end up on dateline.  The only way I can help others is to direct them on how to research their choice of Dr's and to not put to much faith on patient and Dr's testimonials.  The state Medical Boards do not have the power that most think they have.  Complication rates are hard to obtain if the Dr's have used more than one name and have been  under the hospitals name and/or treatment center names.  I have found that if the Dr's are not interested in doing a type of procedure than there is a good reason for it.  Allot of patients believe it is due to money and that the Dr's aren't interested in learning different ways and that is not the case (in our case anyways).  Sometimes the reasons patients haven't heard anything but raving testimonials is that others that have an experience that is different are not able to say anything including other Dr's.  Have you ever wondered this sounds to good to be true.  These types of Dr's are praying on the most vulnerable of patients.  I have worked for Dr's for 21 years and even they were convinced this was our best option.  We all trusted what we were told and unfortunately it had a horrific outcome for a child and there is nothing we can do about that.  We have to accept what our lives are now and move on.  I believe we have done this in a gracious way and this is whats best for all of us.  I want all of you to know that I am grateful for all of your kind words they mean the world to me.  We as a Family are not depressed, bitter or angry.  We would just like to make a difference in the way that we research our providers and what type of information is available to future patients and then they can make a educated opinion on their own with all information.  Please do not be afraid of what I have said please just be informed consumers.  Take the time and make sure you have made the right decision.  Checking on providers in the usual manner is not good enough go the extra mile and turn over every stone.  I have posted some of the resources available on my other posts.  If you need help I can direct you to the appropriate place to obtain this information.  Have a wonderful year filled with joy. 

Marg I believe your sister has very difficult situation to deal with.  We are fortunate that with a younger child he does not completely understand what he has lost.  He has a great attitude and a smile almost everyday.  This makes our jobs much easier and we may have felt differently if he was angry and depressed.  If your sister needs anything have her contact me and I can at least be a sounding board.

Does anyone know of any teens on this site that have had surgery and my son can talk to via email.  The only ones I have found are bitter, angry and this is not where he is.  He just needs a friend who he can relate to and that is positive and moving on with their life.  He has problems with school due to his cognitive problems and someone with these problems could be helpful also.  16

Title: Re: A place to vent
Post by: marg on January 07, 2008, 01:37:55 am

16 thank you for the offer of my sister contacting you... I will be sure to pass on your availability to 'talk' with her.
marg

Title: Re: A place to vent
Post by: Kaybo on January 16, 2008, 03:16:48 pm

16~
How horrible and unjust for all of you!!  I will be praying for you and for your son in seeking the best options to help w/ his independence.  I wish I knew something to help you in that area.  I hate to ask this - & you may not be able to say - but who is it that has told you that you can't talk about this?  Is it lawyers that are trying to help?  I get the feeling it is the Dr. that did this and I certainly don't understand that...
K

Title: Re: A place to vent
Post by: OMG16 on January 16, 2008, 06:25:58 pm

K thank you for your kind words.  I'm sorry I can not be more specific.  I will answer any questions that you have that I can so always feel free to ask.  16

Title: Re: A place to vent
Post by: Kaybo on January 16, 2008, 08:52:47 pm

I totally understand that that was a "touchy" question.  I think that I am just going to have my own opinion of what is going on and I am going to pray that you& yours will be able to overcome this situation in a way that is properous beyond even your wildest dreams!!

Title: Re: A place to vent
Post by: OMG16 on January 16, 2008, 10:29:50 pm

We have already had the most wonderful outcome you could ever imagine.  Our family is closer than we have ever imagined possible and we have the sweetest son who has taught us so much throughout this whole process.  He has the heart and soul of an angel.  I'm proud to say that he just 3 hours ago put his own hoodie on and zipped it himself.  We are so proud of him!!  We are just so blessed and thankful everyday that this has been the outcome of a horrific event in our lives.  Thank you again for your kind words they mean so much.  You don't need to worry about us we are better than ever.  I just needed to vent on that day and then have moved on and it has helped to be able to let some of that out.  I only have fleeting moments of sadness, pain and anger and it does not happen often and only lasts briefly but it is part of the healing process and everyone here on the forum are wonderful people and are there to celebrate the good times and help you through the bad times.  So please feel free to contact me anytime and we will get through whatever heartaches or celebrations life has in store for us.  16

Title: Re: A place to vent
Post by: mbnolde on January 29, 2008, 05:20:36 pm

Quote from: GM on May 25, 2007, 08:18:51 pm

I realized that we don't have a place to just vent.  We have a place to post and receive feedback, but not just a place to type how we feel at the moment.  So...here it is. 

OK...I'll start it off...

TINITUS, I'm so @!#$%^& tired of the ringing. I tried to talk to my wife the other day about it (because it was louder than normal), and she said:  "Ohh...I thought you didn't have that anymore because you never talk about it"

I understand that people without these issues cannot understand them, but me not talking about them doesn't mean that they are GONE!   There...I feel a little better already...

Gary

Gary, I notice from your post that you had GK at U.Va. Hospital....when did you have this?...who did you see (Dr. Hashisaki?)...who did your surgery?  My diagnosis was made there in Dec. 2007 and I am gathering any and all information re: U.Va. and any docs there.  Thank you in advance for any information you can send.  I am in the watch and wait mode since my tumor is very, very small.  My only symptom is tinnitis at this point. 

MB

Title: Re: A place to vent
Post by: GM on January 30, 2008, 11:23:45 am

I had my Gamma Knife (GK) Radiosurgery at UVA by Dr. Steiner, here is his link at UVA:

 http://www.healthsystem.virginia.edu/internet/neurosurgery/faculty/steiner2.cfm

I had GK in November of 2003...  The team there is great.  You didn't say where you were from but there is another GK in Hampton Roads Virginia at Riverside...they are working with UVA...

http://www.riverside-online.com/rrmc/radiosurgery_center/index.cfm

I hope this helped.

Gary

Title: Re: A place to vent
Post by: mbnolde on February 02, 2008, 05:08:47 pm

Quote from: GM on January 30, 2008, 11:23:45 am

I had my Gamma Knife (GK) Radiosurgery at UVA by Dr. Steiner, here is his link at UVA:

 http://www.healthsystem.virginia.edu/internet/neurosurgery/faculty/steiner2.cfm

I had GK in November of 2003...  The team there is great.  You didn't say where you were from but there is another GK in Hampton Roads Virginia at Riverside...they are working with UVA...

http://www.riverside-online.com/rrmc/radiosurgery_center/index.cfm

I hope this helped.

Gary


THANKS GARY, FOR THIS INFORMATION.  I LIVE IN THE SHENANDOAH VALLEY NEAR HARRISONBURG...ABOUT AN HOUR FROM U.VA., SO HAMPTON ROADS IS TOO FAR FOR ME.   Did you see Dr. Hashisaki, or only the GK team?  I am wondering about getting a 2nd opinion and am gathering information toward that end.  Who made your diagnosis, if I may ask?  Thanks again for responding to my question.....

MB

Title: Re: A place to vent
Post by: GM on February 05, 2008, 06:06:15 pm

I was diagnosed by Langley Air Force Base Hospital and Naval Medical Hosital Portsmouth...I failed a annual hearing test (three times in a row), then did some digging and found the AN...I was active duty Air Force at the time.  I wasn't discharged because it didn't affect my work as I wasn't working on the flight line around helicopters anymore...so the loss of hearing was not an issue. 

As for my team at UVA it was Dr. Steiner and his team at UVA...I would suggets calling UVA and talking to them.

Gary

Title: Re: A place to vent
Post by: GM on June 26, 2008, 07:25:44 pm

I HATE MY ANNUAL MRI's THEY STRESS ME OUT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!   :o

I have the CD, and it looks the same to me... I go on Monday to see the Doc... and have my hearing test.

There I feel better now. 

GM

Title: Re: A place to vent
Post by: leapyrtwins on June 26, 2008, 07:32:24 pm

GM -

glad you got that off your chest  ;)

I hope your MRI results and your hearing test results are both positive.

Good luck on Monday.

Jan

Title: Re: A place to vent
Post by: Debbi on June 27, 2008, 12:06:58 pm

GM-

Lots of good luck on Monday.  Meanwhile, try to relax a bit over the weekend, if you can.

Debbi

Title: Re: A place to vent
Post by: marg on June 29, 2008, 07:39:23 am

GM..
     I totally understand.  I had my   1 year MRI follow up last Tusday (after meeting with Hospice care for my 90 year old mother-in-law that morning).   I don't see the doctor until July 16th (unless i can get in sooner- I could have seen him this week but we were supposed to go on our vacation - instead we moved my mother-in-law to an adult family group home....and moved everything out of her apartment ... and still don't know if she will be ok - so we will stay here)  The only good thing about all the hard stuff for mom was that I didn't have time to worry too much about the MRI.
     I plan to go get the written   report from the MRI center and read it myself.  I have the other 2 and at least this time I will not be going into the doctors office totally "cold" about what he might say.
   I hope your results are good !
marg

Title: Re: A place to vent
Post by: Soundy on June 30, 2008, 02:17:48 pm

I don't know if I am venting or whining ...maybe both

My one year anniversary is Wednesday...hard to believe it has been a year...doesn't seem that
long ago... mainly because it is far from over...

At last appointment things were fine according to surgeon... he told me I should not be having headaches
and to relax and they would go away... I do get stressed sometimes and get a head aches but I am not going
around 24/7 stressed out ... but I always have a head ache,  ranging from a dull ache to stabbing /light flashing
before the eyes pain that puts me in bed or on the couch...

my mouth and eye are no longer dry but taste is still not right...ringing in deaf ear drives me to tears sometimes ..
the Doctor told me give it a year before deciding something was wrong needing follow up or that anything was
permanannt... and that after a year most all symptoms should be resolved... When I told him a sneeze could bring
on a killer headache he told me to avoid sneezing ...  >:(

I honestly don't think he understands ... he got the tumor out and it should be over ...for him yes ... but for me that
was the beginning ... I had some dizziness and hearing loss before surgery but functioned well... had the thing
not took a growth spurt it would still be in my head... I was fine with watch and wait mode even though my
family wanted me to have surgery right off
 
and no one around me understnads... I put a travel alarm clock in the brim of a knit cap and put it on my husbands
head and told him he could not remove it til the battery ran down... he didn't last 10 minutes because
"it's driving me nuts" yet when I have on the TV or radio at night to try to drown out the ringing he
complains...I go to the living room and watch TV or read so as not to disturb him and it does because he is used to me
being next to him and my absence wakes him... I want to scream and yell at him to leave me alone, to get comfortable
as best I can and deal with my absence or TV noise or just shut up ... but don't ... he is great and takes up slack as far
as getting done any housework I miss and has never said a thing about the farm work I used to do but can't at all now
because of safety reasons... we are out my income and he has never said a thing ...we do alright but when I am
paying bills I miss my little check ... it paid for little extras and went to saving for trips or unexpected things that
might come up ... he has said little things about it being almost a year now ...he listened to the doctor say in a year
things will be back to normal and believed it ... I kinda did til about the 8 month mark or so ...last few month
I knew that at the year mark unless some miracle happened things were still going to be rough




I am kinda mad at the world right now and have felt it coming on for several weeks ... I want to call the doctors
office Wednesday morning and say OK start looking for someone to find me answers... I have to have referrals and
he better give them to me ...unless the magic AN recovery fairy is going to fly over and wave a wand making the
headaches go away...


I called the doctor last week... I told him I was having an increase in head pain and he renewed hydrocodone ...said
we would go over things at next appointment in August... also told him that after awhile the pain was moving into my
jaw ... he tells me to use cold presses and go through my range of motion exercises 3 or 4 times a day... I had
already been doing that because if I don't the tendons tighten up from shoulder up side of neck and head to the
point they are visible to people ... he mailed me an little info packet of things to help... number 5 made me laugh
so hard I choked ...

#5 when talking on phone alternate ears so as to relieve strain to neck . When listening to TV,music or in a group
turn your head and use both side to listen . People unconsciously tighten neck muscles by tilting the head to hear
better causing strain that can lead to TMJ pain and headaches.

OK...seeing I only have one ear that hears and this is impossible I know it isn't really funny,  but hit me that way...
ended up with a head ache laying on the porch watching the kids swim....

I avoid watching TV with my family ... I watch with close captions and it bothers them... well big whoopdy dooo...
having one deaf ear and one that is not working right bothers me and there is not a darn thing I can do about it ...

Has anyone tried swimming ??? ... I can't swim with head underwater without getting a crushing feeling to my
head and a headache... swimming with face up makes neck and head hurt so settle for floating around on my
back ... luckily I float really good ...it's  extra fat I have gained since surgery  :)


I guess I am done ...just feeling down and mad and frustrated... got new insurance cards in mail today... no book to
tell us what is what so not sure how things are going to be ... but I plan on starting calling tomorrow to see if they
have a headache or pain specialist on their list they will pay so I can get something done... I am not banking on
the doctors belief that after a year things would be normal or that the AN recovery fairy and her/his magic wand
are coming my way...

Grumpy in Tennesssee

Title: Re: A place to vent
Post by: marg on July 01, 2008, 11:16:56 pm

Hi Soundy,
    I understand.... I am 1 year 1 month and  17 days - post surgery.  I still have some facial paralysis, still have times when 'taste' isn't  right .... and the ringing in my ear ...never lets up.  I get some migraine headaches (mainly from stress) too.  The truth is ...... unless someone deals with what we deal with - they can't understand.   They can't see our multiple handicaps ( or challenges as I call them)so they forget we have them -or think they "can't be that bad".  It sounds like your doctor totally does NOT understand (I'm going to my neurosurgeon tomorrow and I don't expect much help either- because surgeons just take the tumor out they don't have any way to help us with the problems after surgery).
     Do you have a local AN group where you live to meet with other AN people or have other AN people to talk to on the phone?   Feel free to personal message me and I will call you .... if you would like.  but know that I am praying for you.  By the time you read this -it will be your 1st anniversary.   Hitting the 1 year anniversary is stressfull and upsetting to most of us .... it was for me.  Hang in there -  you are not alone - and we understand.
marg

Title: Re: A place to vent
Post by: Soundy on July 02, 2008, 01:50:11 pm

Well the sun came up this morning and I let my kids eat Bunny Track and Double Chocolate Fudge ice cream
for breakfast because that is what they wanted...  :D

Have been mentally counting down all day the events of the Big Day... still have an hour before I was out of
surgery and about 3 hours til I was awake enough to know it...

I am stuck in recovery where I was at about 8 months out... face functions even though I still get the feeling that
something is touching the side of my face and a little eye twitch ... taste is in the toilet ... grilled salmon for lunch ...
smelled great and tasted awful... the kids finished mine off gladly... can't hear half of what is going on around me
and my head feels like it has squirrels running around in it

I have been lazy for the most part of the day... thinking about ways to get back on track... I think with lack of
improvement and no real help from doctor with his wait out the full year is up attitude I just let every little thing
bog me down ... insurance changes and BAHA battle ... the headaches and no good treatment for those...
I am thinking have a trapped nerve due to fact many headaches start as pain between the tip of my shoulder and
neck before attacking head...will have to wait and see what I can get done if I get the needed referral to go to
headache specialist... called new insurance yesterday and asked for a copy of the book with lists of doctors they
have pre-approved...

Marg... there may be a support group in Nashville or maybe Huntsville Alabama which is closer to me ...don't really know ...
I have a great doctor here in town that called me this morning and told me "happy birthday" ... asked if it should be
happy anniversary and he said no cause I was reborn a new improved version... don't feel improved but as he was
quick to point out and my kids always tell me ... but you are breathing ...
he isn't even in the office on Wednesday ... he knows me and has been more help with headaches and such than my
surgeon... I saw him two weeks ago for other problems and he said he knew I was down even though I said I was fine...


Need to do a little house work...moved furniture Monday and little stuff is still out of place as I fine tune my nest... and
reflecting on what was last year and what is now isn't getting the place straightened out... told my husband that if I finish
he has to either cook or take us all out for anniversary dinner ... dofus said our anniversary isn't til the 18th ...
wonder if he will figure out by the time he gets home what day it is ... or if it is only important to me

Still grumbly but feeling better... so thankful I am still here to watch my two youngest kids grow up
and being human , a bit pissed that I don't feel better... but more thankful than pissed today

Title: Re: A place to vent
Post by: GM on July 03, 2008, 01:48:39 pm

Soundy,

I’m so sorry that your recovery process is talking so long…I pray that you see improvement soon.

Gary

Title: Re: A place to vent
Post by: GM on July 03, 2008, 02:04:36 pm

I met with the Doc and got my MRI results and they are….I don’t really know!!

My hearing test and speech recognition (72%) are the same as last year.  I measured my tumor (on the CD-ROM) and it looks the same to me.  I don’t have any new problems other than paying attention to my tinnitus at the moment...

My ENT Doc (military hospital, head of the ENT department), feels that there must have been an error in the MRI measurement because of the sizable difference.  He measured it himself and feels that the tumor is stable for this MRI check.  He pointed out to me that these MRI’s are measured remotely and he felt that there must have been some error in the measurement.

Now for the confusing part, the MRI was read remotely (by the same doc that read it last year), but…this year he DID NOT compare it to last years results. 

One of his measurements showed an increase in size from last year’s MRI…

Last years measurements:  1.9  x 1.6 (in the axial plane) x 1.7
This years measurements: 1.8 x 2.3 (in the axial plane) x 1.7

I am waiting for University of Virginia to reply with their measurements…they measured it last year as 2.10 cm3 (cubed).

So now I feel like a “Zapper� (radiation patient) who is now in watch and wait mode… ???

Here are the two measurements...May 2007 (left pic) & June 2008 (right pic)

Gary

(http://i323.photobucket.com/albums/nn470/Jeepstergm/AN/2008GKmeasurements.jpg)

Title: Re: A place to vent
Post by: marg on July 07, 2008, 08:04:38 pm

How frustrating for you.  Hope you get the  correct info you need soon.
marg

Title: Re: A place to vent
Post by: Soundy on July 07, 2008, 08:29:02 pm

Hope you get correct information soon ...

Title: Re: A place to vent
Post by: mk on July 08, 2008, 07:25:38 am

In my experience, one of the reasons that can cause major inconsistencies is how the axial plane dimension is measured, i.e. if and how the portion that extends in the internal auditory canal is taken into account. Different radiologists do it differently, and this can cause major discrepancies in the reported numbers. This is why it is important to have the same person do the measurements consistently every time. Since you have access to the CD and can do the measurement yourself, this is your best bet. In my bitter experience I have learned that I shouldn't trust the reported numbers unless I double check myself (this was a bit of venting to be consistent with the thread topic!!).

Marianna

Title: Re: A place to vent
Post by: leapyrtwins on July 08, 2008, 07:39:27 pm

Marianna -

thanks for explaining the whole measurement thing.  I didn't know that and I'm glad that now I do.

Jan

Title: Re: A place to vent
Post by: mk on July 08, 2008, 08:35:31 pm

Hi Jan,

actually I have been thinking that this may be a reason for the strange measurements in your case. Possibly the initial diagnosis from the MRI considered only the diameter of the AN outside the internal auditory canal, whereas when they removed it they measured the maximum dimension, which includes the portion that extends inside the IAC.

Marianna

Title: Re: A place to vent
Post by: leapyrtwins on July 08, 2008, 11:02:35 pm

Marianna -

you could be right.

Since we all know that ANs are typically slow growing, either I'm a very unusual case or the measurements were off on my MRI.

I guess I'll never know - but I'm thankful that I chose surgery over radiation since the size of my AN was actually closer to the limits of radiation than my doc originally thought based on my MRI.

Jan

Title: Re: A place to vent
Post by: GM on July 09, 2008, 03:12:35 pm

Thanks for the inputs everyone…   I never would have guessed 10 years ago that I’d have a brain tumor and I’d be reading my own MRI’s !!    :D

Title: Re: A place to vent
Post by: leapyrtwins on July 09, 2008, 04:52:14 pm

I wonder if the hospital would give you a discount on the cost of the radiologist reading your MRIs - since you read your own  ???

Yea, right  ::) LOL

Jan

Title: Re: A place to vent
Post by: marg on July 09, 2008, 10:16:17 pm

Great idea Jan...... It would be great to save money somehow on these expensive MRI's.  ;D
marg

Title: Re: A place to vent
Post by: marg on October 05, 2008, 12:25:55 am

It's been a while since I (or anyone else) has posted under this subject heading but..... I need to vent a bit.  All of you SSD people know being in large rooms with lots of people talking is beyond difficult....as a teacher of 2nd graders I am exhausted by the end of the school day and the tinitus in my 'deaf ear' is screaming at me.... but I have only 3 years and 154 days school days left until I can retire with full benifits and I am going to do my best to hang in there.  I treasure my Saturdays where I can be in less noisy situations....or at least limit my time in them.  .....which leads me to my reason for venting tonight. My husband and I went out to dinner at a nice resturant with my brother-in-law .  It is a place we have eaten at many times and although the ceilings are high and there is some echo, it is a nice place to eat and I can usually hear ok.  Tonight ,however, was a disaster.  15 minutes after we sat down and started our salad a group of 10 people came in and sat right behind us .  They were very drunk and VERY loud.  I told my husband that I thought we should move to the other end of the room ...but he said he didn't think it would be better there and when I mentioned it to the waitress my brother-in-law said 'it's fine'...... by the time we got home I was exhaused  and highly irritated from the effort to try to hear and understand my husband and my brother-in-law during dinner.  The only thing that kept me from turning around and asking the people behind us (in a nice TEACHER VOICE ! )to please talk a little softer was the fact that I had no support from either man with me..... and the fact that I downed a glass of wine to survive the situation. 
      When I got home I was very upset and explained to my husband (again!) how I can't filter out unwanted noise/conversation  and that it was about the same as him having a lawn mower running next to his ear  during the entire dinner!!!!!!!!!!!!!!!!!! He then said he understood.
    It's  days like this that I wonder if I can keep dealing with situations like this the rest of my life.  I am sick and tired of being SSD.  One thing is for sure - If I am EVER in this situation again I am going to give the waitress a choice ...... would you like to seat us at another table  much farther away from the noise or would you like me to ask the people at the offending table to talk softer???
It was a nightmare situation that I do not plan to repeat .
marg
p.s.  Thanks for letting me vent.

Title: Re: A place to vent
Post by: Sue on October 05, 2008, 03:34:46 pm

Marg, I totally understand, as many of us do.  For my birthday last March I wanted to go to this nice restaurant in The Pearl District of Portland.  Lots of lofts, converted warehouses, trendy eateries, art galleries, all of that kind of thing.  I figured it would be loud, and yes, it sure was.  It was a Saturday night, busy, and a foursome behind us with a lady who was clearly having a fun time and she laughed, and laughed, and laughed and it wasn't her fault that she had a loud laugh and was having fun, but I wanted to strangle her!  The food was really good, great menu, lots of different things to try (it's Peruvian, of all things) and I wanted to go there so much, that I sacrificed hearing any conversation and having tinnitus up the ying-yang. Nobody else in our little group could hear either, so it just wasn't me.  I'd love to go there again, but next time I'll make it lunch, or in the middle of the week, although I'm not so sure that would help with this particular restaurant.  They make some of these places so darn echo-y.  All that trendy concrete and wide open ceilings and nothing to absorb the noise, I guess.  The picture I have of me on here now was taken that night.  If I could put the little cartoon marks around my head signifying a bell ringing, or something like that, it would be appropriate. 

Sue in Vancouver, USA

Title: Re: A place to vent
Post by: leapyrtwins on October 05, 2008, 04:16:35 pm

Marg -

I'm sorry to hear about your bad experience.  Unfortunately I think all of us who are SSD can totally relate to this situation.

I find this kind of thing extremely frustrating, because as you know it's very hard to explain to the people you are with who are not SSD just what you are dealing with.

I'm glad your husband understood when you discussed it with him at home.  If you find yourself in this situation again, I'm hopeful he will remember your feelings on the subject and back you up when you ask the waitress to relocate you.

Jan

Title: Re: A place to vent
Post by: ppearl214 on October 05, 2008, 06:32:11 pm

DonnaLynn,

I learned quite a few yrs back... not to try to figure out human nature.  I did a post here (prolly in Archives) about when folks in your life disappear after diagnosis.... and it tore me up inside to try to figure out human nature... why they disappear after a tough diagnosis... why folks insist on saying nasty things or to use words that they don't recognize as being hurtful.  I dare them to walk a mile (or less, for that fact) in our shoes....When one doesn't understand... possible niave to what we endure in life..... they have no clue.  Now, the key is remembering that our will... our strength is what carries us through... and for those that insist on hurting us in life, whether with words or actions, well, guess what.....I don't spend the energy trying to figure it out... I just smile, put my head high, and know that I can look at myself in the mirror and know that I am a much better person than they... you remember that.

Please accept my deepest, sincere condolences for this tragic loss.... and remember, your harp friend that you lost would surely tell you to ignore it... keep your head held high.. and know that you can rise above those that insist on showing their bad sides... very unbecoming of them, doncha think?  Shame on them.

HUGGLEZZZ, massive hugglezzz

Phyl

Title: Re: A place to vent
Post by: sgerrard on October 05, 2008, 06:40:09 pm

DonnaLynn,

Keep the scarves; lose the "friend." Life is too short to waste on that kind of thing.

Steve

Title: Re: A place to vent
Post by: Kaybo on October 05, 2008, 07:00:11 pm

Donnalynn~
I would be willing to bet that this person is intensely JEALOUS of you.  Even though I have never met you in person, I can tell by your picture that you are a beautiful woman on the outside and more importantly, from reading your posts and talking to you on the phone, you are even more beuatiful on the inside!  You have commented to me about your love for scarves, so I certainly don't think that you are trying to "mask" something.  I KNOW how much words hurt (I had a good friend tell me this summer that I was mean-spirited, that I only said things to hurt others, and that I was EVIL & hung up on me - she had called me!  Even though I know that not to be true - even though I need to work on my speech - it is still very hurtful!), but you need to rise up & show her the bigger person that you are.  Obviously, she is not truly a FRIEND!!  As my sweet Moma always said, "Shower people with love and kind words and they will have nothing to get you with!"  I can't tell you the number of times when I have done that (even though it is very hard) and things have come out later to show that I was on top!
Keep your chin up - PM me & let me know if you want to give me a call!

<3  <3  <3  <3  <3  <3  (sideways hearts)

K

Title: Re: A place to vent
Post by: lori67 on October 05, 2008, 07:19:51 pm

Donnalynn,

Don't ever think for a minute you are not beautiful.  The people who know you won't forget it.  And it doesn't even matter what the outside looks like - the important people know where the true beauty comes from to begin with.  I have a feeling you put some effort into the outside too though, so I just know you are beautiful on the outside too.  The person who said those things was probably just trying to cover for her own insecurities, and what better way than to kick someone when they're down.  Please don't let her get to you.  I am also quite sure your husband and daughter are not saying nice things they don't mean.  To them, I'm sure you are the most beautiful person in the world.

And what the heck business is it of hers how you wear your hair or what you wear in it?  I think next time I planned on seeing her, I'd wear a Burger King crown or a big giant sequined sombrero.

And let me add that I am so sorry about your friend.  It must be hard to lose someone from such a close knit group like that.  I'm sure you will all come together through this and make her very proud of you!

Lori

Title: Re: A place to vent
Post by: cindyj on October 05, 2008, 07:29:12 pm

Hey Donnalynn,

I haven't been to this thread before and thought I'd just pop in...well, I truly can NOT believe that anyone would act that way to anybody, but especially not to someone as obviously completely sweet as you are.  What is wrong with people?  I am just shaking my head in disbelief.  I echo what everyone else here has commented to you.

Hugs!!!

Cindy

Title: Re: A place to vent
Post by: marg on October 05, 2008, 11:57:18 pm

Donnalynn,
   Glad there is so much support for you... it is plain to see that this gal  is a bully !  I hope she is not one of your group of 7 and if she is I hope another member of your group sets her straight.  It's hard enough when someone says something unthinking '  Lask week I told  a woman I work with at school that I hated my school pictures (we were looking at them and it will go in my class picture - I teach 2nd grade).  Her comment was "well if you smiled more it would be better"  I told her I can't -with my facial paralysis that's as much as I can manage".  I think we both felt bad..... and of course I felt more like I don't want to laugh or try to smile because it  makes me look worse.  Anyway, .....


Sue and Jan thanks for the nice words..... My husband told me late last night that dinner experience "is NEVER" going to happen again - ah yes, my knight is back on his horse !  :) ..... he just forgets what it is like for me until I explain it again.
marg

Title: Re: A place to vent
Post by: Omaschwannoma on October 06, 2008, 04:27:33 am

marg,

Wanted to say before you give up on going out to dinners try using an ear plug, I use one for these situations and makes it much, much better hearing those at the table.  I used to use the "swimmers ear plug" then bought a "musician's" ear plug as this is a custom fitting one and has three different filters that cut out a little, some or all noise.  I chose the middle filter as I still wanted to hear the people next to me talking.  Try using a plug, and not the foam ones, they don't stay in and they don't do a good job cutting out the background noise.  Hope this helps.  Don't want to see more SSD people give up their socialness (is this a word?).

Title: Re: A place to vent
Post by: yardtick on October 06, 2008, 09:41:19 am

Donnalynn,

You do not need a person like that in your life.  She has issues and insecurities and she's taking them out on you.  Actually I feel sorry for HER.  She must be so unhappy and miserable in her life, all she knows is blackness and nothing about the brightness and will of the human spirit.  This is your lot in life and you are dealing with it.  You do what you want and what makes you feel good.  I say good for you for taking the time to care about your appearance.  Surround yourself with people who care about YOU!!!  Scarves and all.   

Your Canadian AN SISTER,
Anne Marie

Title: Re: A place to vent
Post by: wendysig on October 06, 2008, 01:06:47 pm

Donnalynn,
I amazed that someone who considers herself a friend could say such mean, vicious things to you.  You were right to lose the "friend" -- she was not a friend at all.  I have to agree that I'm sure you are beautiful as you look in you picture and as you are on the inside.  If other people don't see that then that is thier loss and I pity them.  I also wanted to say again how sorry I am for your loss.

Wendy

Title: Re: A place to vent
Post by: msmaggie on October 06, 2008, 01:49:09 pm

I'm with Steve, Donnalynn.  With friends like that, who needs enemies? I am sure you look just as cute as your picture.  I'm appalled that someone would choose a time like that to unload on you.  Shame on her!

Mags

Title: Re: A place to vent
Post by: MAlegant on October 06, 2008, 07:11:18 pm

Donnalynn,
First let me say how sorry I am that you lost your friend.  Now let me echo Steve when he said "keep the scarves, lose the (nasty) friend".  The problem here is hers, not yours, and people that treat other people that way are so full of self-hatred that it just has to spill out.  I'm sorry you were the recipient.  I may have had to hit that woman.  Probably best you didn't, but still... >:(
(scarf loving) Marci

Title: Re: A place to vent
Post by: Kaybo on October 08, 2008, 02:21:03 pm

Donnalynn~
Thank you for sharing all of this so that others might benefit...it is like I said on the phone, you are not giving up, just a little break.  You shouldn't have to prove anything to others and if they don't accept & suuport the "new" you then you probably don't need to waste precious time having them in your life!

K   ;)

Title: Re: A place to vent
Post by: Jim Scott on October 08, 2008, 04:16:37 pm

Marg:

As another AN 'survivor' that lives with SSD and it's challenges, I completely understand your frustration.  Fortunately, my wife is very cognizant of my SSD and, when we're out, always remembers to sit on my hearing side.  Still, noisy environments will always be tough for us SSD folks. 

Last year, we attended a dinner with 4 other people at a small restaurant that, unfortunately, had a live band.  Once the band started playing, my ability to hear anyone at the table was down to, maybe, 5%.  I compensated as best I could by leaning over or to the side to hear people across or next to me.  It was a fairly effective strategy but still, the effort was tiring and the noise continually aggravating.  My wife was very sympathetic and the people we were with were aware of my SSD and talked loudly to me and/or leaned toward me as I leaned toward them so I could hear. When your dinner companions are oblivious to your SSD and diminished hearing ability and your spouse seems insensitive to your plight, that has to be very aggravating.  I trust your husband will be more sensitive to your SSD in any future situations like the one your related.

In defense of spouses and friends I have to mention that if our spouse has had a partner with normal hearing for years, it has to be a bit difficult to shift gears and suddenly be aware of our hearing deficit, then make the necessary accommodations in every instance.  It has to be even harder for friends, especially if we don't see them all the time.  They forget.  Remember, they hear just fine and very likely knew you when you had full hearing, too.  They need to be more sensitive to your SSD but education takes time to implement.

I hope this won't happen again but then, I also hope we'll all win Lotto someday.  ;)

Jim
 

Title: Re: A place to vent
Post by: Jim Scott on October 08, 2008, 04:27:42 pm

Donnalynn:

I'm glad the many positive posts have encouraged you.  This is a very difficult situation but I have to concur with the majority opinion that - for whatever reason (and who really cares?) - this woman was no friend and obviously held some misplaced resentment toward you.  Unless she decides to make a very contrite and sincere apology real soon, I would no longer count her as a 'friend'.  I would ignore her as much as possible and certainly take her off your Christmas card list! 

Seriously, a similar thing happened to my wife some years ago and she was very upset, just as you were.  We analyzed the woman's probable motives, concluded from the evidence that she was miserable and unhappy with her life and clearly jealous of my wife (Tina).  This woman very likely considered herself superior to Tina (she wasn't) and couldn't understand why she didn't have the happiness and contentment my wife enjoyed, so she lashed out at her, for no real reason beyond pure envy fueled by her arrogance.

She later proved us correct but I won't bore you with the details.  Suffice it to say that this was obviously hurtful to you but that you seem to be self-possessed enough to rebound, drop this woman like a hot potato and realize that her bitterness shouldn't govern your happiness.  I'm sure it won't. 

Jim

Title: Re: A place to vent
Post by: Omaschwannoma on October 08, 2008, 05:15:26 pm

Hey Donna, remember the "old" saying look for the silver lining in the dark cloud?  Well, your deciding to leave probably will open a great door to you that wouldn't have been noticed had "she" not happen in your life!?

Title: Re: A place to vent
Post by: marg on October 09, 2008, 10:49:26 pm

Donnalynn,
     I think what I came to realize was that I was building a 'new normal'.  It took me a while to accept it but as time has gone by I am getting more used to the things that I deal with on a daily basis.  I play in a bell choir group and had to take a break for a while after surgery.  I play again now but it is challenging as I can't hear the people on my left and heaven help me if I  lose my place when we are playing...... I can't hear the person on my left whisper what measure we are on ( and there is no one on my right to whisper in my good ear) but my friends are understanding and extend much grace.  I do have to remind them that I am deaf in my left ear (sometimes as Jim said it is harder with the people who knew us before we were SSD) but because of their support it is worth the extra effort.  I notice that even though the tinnitus is still much louder after practice.....it doesn't bother me as much either .
     I think it is great that you are taking a break for a while to  evaluate what should be in your life now.
marg
p.s.  I have a harp that a friend let me borrow just before I found out about my acoustic neuroma ..... and it still sits there waiting for me to play it.  I haven't found anyone who teaches celtic harp in my area .  I am still hoping to get a chance to learn..... wish you lived by me.  :)

Title: Re: A place to vent
Post by: lori67 on October 13, 2008, 05:53:45 pm

Marg,

Ever think maybe it's not tinnitus?  Maybe someone is still actually ringing bells in your ears?

Good for you talented folks though.  I have no musical ability besides turning on my ipod.

Lori

Title: Re: A place to vent
Post by: marg on October 13, 2008, 09:57:33 pm

Donnalynn - thanks for the offer of music.  I will PM you when I can get my head above water to have time to learn to play (right now I am trying to learn the new subject matter areas we were given this year to teach in 2nd grade, and I'm still trying to clear out the things we had to bring to our house when my mother-in-law died in August).
     Lori - you know  maybe it is bells in my ears....... if so I would be more than willing to donate them to my bell choir ....... It certainly would be no hardship to give them up  ;D

marg

Title: Re: A place to vent
Post by: hannie on October 22, 2008, 07:46:04 am

be prepared for a big 'ole vent!

I got a letter today from my surgeon postponing my next appointment with him..... again.  >:( This is the fourth time he's done this - twice because he's gone on holiday! gggrrr! i know he's entitled to a break but cant he book it before he schedules people in his clinic!? i'd booked time of work and rearranged my classes (several times) to get people to cover, my boyfriend had done the same and now he's cancelled again and we need to rearrange everything ... again!! i dont understand why the treatment i'm getting from the doctors is so vastly different to everyone elses experiences - maybe its using the NHS - i'm not paying them so they don't feel they need to go the extra mile for me.

i just feel really alone in this as the surgeon basically said to do some research and let him know what treatment i want him to do. hw refused to advice me what he thought was the best treatment option. i'm worried of making this major decision and feel like he's not giving me any support in this. I was really looking forward to seeing him with a big list of questions and getting things straight in my mind. now he's cancelled again and i have to wait til after christmas to see him. i was hoping that i would have made a decision by then and be able to relax a bit over christmas. i have so many questions about his experience, waiting lists, the location of my tumour, size, prognosis etc.. he hasn't told me anything beyond giving me a generic handout. I've done all the research but without knowing his experience and the size and exact location of the AN its difficult to make an informed decision.

the worry and sleepless nights are really starting to get to me and i feel really demoralised.  :'(

gggrgrrrrrrrrrrrrrrrrr!!!

ok rant over. *and breathe*

hannie

Title: Re: A place to vent
Post by: MAlegant on October 22, 2008, 09:57:54 pm

Hi Hannie,
Sounds like it's time to divorce your doctor and speed date a few more.  So sorry.
Best,
Marci