Author Topic: A place to vent  (Read 63839 times)

GM

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A place to vent
« 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

Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

Jill Marie

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Re: A place to vent
« Reply #1 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!

Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

Lainie181818

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Re: A place to vent
« Reply #2 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.

Catflower

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Re: A place to vent
« Reply #3 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!!!!!

nancyann

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Re: A place to vent
« Reply #4 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....
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
right facial paralysis
good to go.

Omaschwannoma

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Re: A place to vent
« Reply #5 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)!"
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

ppearl214

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Re: A place to vent
« Reply #6 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
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

madshackle

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Re: A place to vent
« Reply #7 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
2 mm right side with severe hearing loss and tinnitus. No growth since detection Summer 2006. Watch and wait, next MRI in March 2008.

Boppie

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Re: A place to vent
« Reply #8 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.   
 
« Last Edit: May 26, 2007, 11:07:37 am by Boppie »

Dealy

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Re: A place to vent
« Reply #9 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

tony

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Re: A place to vent
« Reply #10 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

Sue

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Re: A place to vent
« Reply #11 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
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
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mema

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Re: A place to vent
« Reply #12 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.                                                                                                                                                   


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6mm x 8mm left AN FSR 26 treatments Nov.-Dec.2005
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matti

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Re: A place to vent
« Reply #13 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

3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

er

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Re: A place to vent
« Reply #14 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

 


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