ANA Discussion Forum
AN Community => AN Community => Topic started by: leapyrtwins on July 05, 2009, 06:35:14 pm
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I've been away from the forum for days now and though I was very anxious to return, I can't help but be bothered by all the negative posts lately. Yikes!!! Enough to make a newbie scared out of his/her skin! :o
In an effort to lighten things up, let's talk about positive things that have come out of being diagnosed with an Acoustic Neuroma.
Here's my list:
1) met two spectacular, honest, doctors
2) got a great knit hat from Steve ;)
3) the tumor was benign
4) being SSD makes it easy to get a good night's sleep - just lay on your good ear
5) the BAHA
6) met a lot of wonderful people on this forum - most of who have been through a whole lot more than I have and lived to tell the tale - and with enthusiasm!
7) it made me realize how truly lucky I am. So much in life is now trivial.
Pleae add to this list with your own positives. And let's remember why we're here people - to help and support each other; not scare others away.
Jan
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Hey Jan! :-* Countdown is on for CHI and hoping the bail money has been raised for me and Captn Deb :D
Great thread... I thought we did something like this a LONG time ago but too tired to dig up the thread, so will add to this as well:
1. Thankful it was benign and treatable
2. Oh, the folks from this forum that I have met face to face, even in the UK. I've been honoured to be able to travel to different cities to meet so many AN'ers.
3. The guidance given to me by so many others that were treated before me..... my true mentors on these forums and their help have just been so very appreciated by me.
4. Steve's hat (gotta agree with that one, Jan! :) )
5. I knock on wood that I am doing as well as I am for my AN situation.
6. If anyone is going to keep me on my toes, its you all! The best exercise I could ask! :)
7. the marvels of medical technology have come SOOO far since 30 or 40+ years ago. We are all so lucky that medical advances have and are available to us, regardless if surgical (docs now doing endoscopic) or radio (CK, Trilogy, etc).
8. Compared to other medical ailments out there, oh, we are SO very lucky!
9. Chasing Jan and Lori around this site! :D
10. The friendships made here.... too many to count, too many that are so very appreciated and most of all... the love and support given by so many.
How's that Jan? :D
Phyl
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Excellent! Let's keep the ball rolling.
I'm actually a "maybe" for the symposium now - might be stuck in San Diego working. Hope not, but should know for sure real soon.
I'd definitely miss you and the Captain though - among others :'(
Jan
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well, if you go to San Diego, please go to the Coronado Resort for me and enjoy a beverage out back by the pool/beach, will ya? :D
Ok, added my positives... keep the ball rollin'.....
Phyl
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Okay, how about
1. I'm blessed to be alive !
(apparently mine was pretty bad).
2. Definitely don't swear the small stuff
3. I Enjoy nature more
Unfortunately, a lot of people who continue on the forum do so because of long term side effects which can truly impact their lives and are a pain in the #@$!! (I'm one of those >:( ) Those posts are usually different ones for the "newbies". Remember we are supporting all ANers in whatever journey they are in and I for one am going to be in it for the long haul, it seems. And every day is NOT happy for me. If the newbies or whomever reads those posts, ah well, it's a wide open forum and that's their choice I guess. We need to support everyone I guess.
The threads that I have been on all seem to be OK. I like to support the newbies.
Maybe we "scare" others away without realizing it. We're just giving honest answers to questions. Hopefully I didn't inadvertently scare someone.
Anyway,
I'm SO glad to have found this forum to help others and to see that there are others who have the same issues as mine. It makes it so much easier for me just getting through the days. I trudge on, that's all I can say!
Happy day!
Maureen
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*Have greater empathy for people with conditions or ailments that I've never heard of. Because EVERYONE has the potential to be the "me" (as in "it can't happen to ME"). Now I know it does!
*Will NEVER take my health for granted again
*Love the Canadian Health care system even more. Full treatment and not a dime (taxes, of course).
*Have gone through hell the last year (both with my husband and lung cancer, and me with an AN). If I can survive a year like this, I can do ANYTHING!
*I'll remember that no matter how bad a situation seems when first presented, it is possible to get to the other side and be happy again. Time (and surgery LOL) heals wounds.
Thanks. Feeling so happy and positive these says, and happy to pass that along!
Adrienne
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a) looking at life with a whole new appreciation of what I have
b) finding I have many dear, helpful friends
c) basking in the wonderful power of prayer
d) learning it's OK not to be "perfect"
e) learning to be patient, not only with myself but with others
f) enjoying life in the present rather than trying to change the past or hoping tomorrow will be better
...... and I could go on and on
Clarice
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Well, you guys have already mentioned most of the things I would have mentioned, but I think I can add a few....
- giving Phyl lots of exercise "halo-hopping"
- the best knit hat I've ever had
- learning to live in the moment and not always be looking ahead to what comes next
- the compassion and support of people I've never even met
- definitely - not to sweat the small stuff
- learning to take care of ME - not just the kids and everyone else
- learning that there are much more important things in life than material things
- learning how to gracefully and tactfully remove negativity in my life
- learning how to not feel guilty about others helping me
- letting those I care about know that I care
- and... my new motto - just because I may be in pain, doesn't mean I have to be one.
Lori
p.s. Oh, and I've learned a lot of new words from Jim! ;)
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Great thread... I thought we did something like this a LONG time ago but too tired to dig up the thread
I think the last go-round was positives about facial paralysis. http://anausa.org/forum/index.php?topic=7057.0
As one of your adopted step-children without an acoustic neuroma, just let me say how thankful I am to have found a place for information and support about facial paralysis. It is a less common surgical risk for the brain surgery I had, so the ANA forum has been a godsend for me.
Keep posting -- anything and everything -- the good, the bad and the ugly. God knows we all need support now and then, and there is no telling how each experience may turn out to be valuable, either now or for those who come later.
Sara
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This is a great thread, Jan...I really have to think about this because for me, this was a LONG time ago and hopefully, many of the positive things have become a way of life for me...
Still pondering... ;D
K
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this is a great subject. i too will ponder it.
there was another 'similar yet different' thread that i also intended to post to a couple of months ago, but didn't get around to it. it was entitled " ?? something beginnings / happy endings" or something like that. pretty sure it ended with 'happy endings.'
i hope you get to go to the symposium, jan.
i'll show up tomorrow with my positives.
keri
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?? something beginnings / happy endings
Happy Endings/New Doors: http://anausa.org/forum/index.php?topic=6260.0
It was started by Debbi in April 2008, and revived by me on her 1 year anniversary.
As for me, I get to knit those hats and mail them to people and have nice things said. Can't beat it. ;)
Steve
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Futhermore, a great excuse for buying a Nintendo Wii to do balance exercises ;D
Kenneth
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Hi Jan!
So many great things have already been mentioned.
How about the internet, this WONDERFUL group of people ;D , and information, information, information!
I can't imagine how long it would have taken me to be in touch with others say 10 or 20 years ago.
The forum is GREAT! I am grateful to all who have or will contribute.
Sincerely,
Sue
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What more can a person add that hasnt already been said. I'm alive, I can walk and talk maybe not perfect but hey I'm alive. And yes a perfect excuse for a WII and the Fitness. I acquired mine before surgery. Now I try to do 30 to 60mts a day and I've lost 8 lbs wooohoooo....
I was terrified when I first read a few threads on here theb I continued to read and read I mean many a hours and when I went in for surgery, I was calm. Normally I am nervouse with stuff like this but not this time. So calm that my blood pressure was normal...Its usually a little high. But now I love life and live for me.
JO ;D
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?? something beginnings / happy endings
Happy Endings/New Doors: http://anausa.org/forum/index.php?topic=6260.0
It was started by Debbi in April 2008, and revived by me on her 1 year anniversary.
As for me, I get to knit those hats and mail them to people and have nice things said. Can't beat it. ;)
Steve
that's definately one of them, Steve! Thanks for digging it up.
*starts chasing Lori around to see if I can knock the halo off again......*
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As for me, I get to knit those hats and mail them to people and have nice things said. Can't beat it. ;)
Steve
Okay, I'm hijacking my own thread. Phyl can't get me for that one, can she ?? ;)
Aren't there still some hats out there that we don't have pictures of, Steve?
Pictures, we want pictures!! :D
Jan
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I need to see a man about a hat ....
For me many things have been mentioned by others already...
I am alive and breathing , something that I was told was going to not be an option at
growth rate of Bennie
I am more grateful for my family than before ... I like grabbing and cuddling the girls even though
the almost 12 year old thinks she is too big for it ... she gives in casue I am the Momma and therefore
the boss ... at night she gives on voluntarily
I got a cool tattoo on my arm that I wouldn't have gotten if not for AN
I have meet y'all 8)
I keep Matthew 6:34 in mind and try not to worry about tomorrow and what it brings too much ...
everything in it's own time ...
I lost an ounce or two of belly fat that they took out to plug my head :D
I am glad I am alive but still sweat some small thing ... need to work on taking care of myself ...not going
into depression etc etc ... I do OK until anniversary rolls around ... Now with July 2nd come and gone
I am good to go ... I think it is something like how some people start dreading turning 30 , then 40
then 50 ... but that is a whole nuther thread :D
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I agree with all of you. I am still amazed that I had brain surgery and am so-o-o-o grateful that I had so much love and support from my family and friends. I can still teach at full capacity. My faith walk underwent some long overdue scrutiny, and I am more than ever strengthened by my beliefs. I am grateful that I can do the little things that I missed doing or was not able to do when I was recuperating. The meningitis was a problem long before it was diagnosed, and just walking made me gasp at the pain in my spine. Now I can zip around the grocery store and not clutch the cart for support like an old lady. :D Who would have thought that could be so much fun?
Yes, I am not the same person I was before. I am more aware of other people's pain and suffering, and pray for them almost daily because I know there were many people praying for me.
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Great idea! My first thought was the "sleeping on the good ear" as being my favorite but as I read through the responses I found myself saying, "oh yeah, that one" to all the positive statements.
Having an AN changed my life in a positive way, slowing me down, greater appreciation for everything/everyone, compassion, patience, and contentment. I actually feel blessed for what I went through and am thankful. Weird but true.
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I agree with a great many points already posted so will just add too that I feel like I have successfully climbed Mt. Everest.
I am surprised how empowering it feels to get through this. After all, "brain tumor" and "brain surgery" are jokes, synonymous for the worst/most complicated/most delicate thing you can think of at the outer reaches of your mind! "At least it's not a brain tumor!" "It's not brain surgery!" :o
Whatever. Been there, done that, bought the Crocs.
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I agree with Lilan, having gone through brain surgery, you feel a whole new set of things you can do that maybe you were afraid of doing. I hate driving distances and highway driving. But 3 or so months post op I flew up to NH, rented a car and drove all around Boston, other MA cities so I could go to the MA get together of AN'ers (it was great meeting everyone) and then also watch my husband run the Boston marathon. I was insecure about driving in an unknown place, esp with some of the eye issues, but it went well. Then several weeks later, I actually drove a couple of hours away to run a half marathon (sounds stupid, yes I know!) I never would have driven that far, but I thought "hey, I already drove BOSTON for cryin' out loud; I can do this!" It's just given me more nerve - made me felt like more of a survivor (not in the sense that I feared for my life with the surgery, just in the sense that I don't want fear to keep me from something).
I also felt my faith in the Lord was strengthened, and all those Bible verses about His care for us really hit home. And I knew so many here on the forum and in my life were praying for me.
I also have loved being part of this forum and meeting the people here. The people here are so upbeat, encouraging, positive and helpful. It's great! And we can bring up something non AN related and vent and say "help" or "pray for me" and the forumites respond with support and care.
Even though my AN related headaches are past, I now have much more empathy when someone shares, "I suffer from headaches." (or someone goes through surgery, etc).
Through my AN experience, I think I've learned (or am learning) to help and encourage others when they are going through something difficult.
Keri
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I am so glad you started this, I found myself several times in my "search" having to not read the forum (and was told by my physician group not to). Life can be so good after ...
My priest told me to be in the moment and feel the support and love coming from friends and family, we don't having the opportunity when things are going well. he was so right and I have tried to continue that, be where you are, listen more, enjoy more, and focus on what is important in live. That really does change after "brain surgery" I went sailing last week for the first time since surgery and it was good. I was concerned that is would not be much fun and would through my balance off, if didn't and I can do it!
Life is good
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Yea, the forum can be a scary place at times - which is why I always tell anyone who contacts me about their AN to take things with a grain of salt.
Very valuable information here, but you have to remember that everyone's experience won't be yours.
Jan
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I can't add anything terribly significant to the list of 'Positive things about having an Acoustic Neuroma' but the tumor caused me to lose my sense of taste . Because nothing tasted good, I practically stopped eating for a few months and lost about 35 unwanted, unneeded pounds. After my AN surgery, my sense of taste returned but I had gotten used to eating less, re-thought my eating habits and have managed, without dieting or giving up a lot (just eating less of it) to keep the 35 pounds off. I enjoy being at my normal weight again (I was quite trim until I hit my fifties) and so, I guess, in way, the weight loss was my 'positive thing about having an AN'.
Like others, I also realized how much my wife loved me when she stayed in the hospital for three days (sleeping in the nurses lounge - with my doctor's O.K.), which was a lot more than I did for her when she was hospitalized for ten days a year earlier (spinal surgery). She was always there by my bedside when I woke from my fitful naps the first few days, post-op. Should she ever need to be hospitalized again, I'll be a lot more attentive to her because she showed me what love and devotion is. I guess that qualifies as 'a positive thing about having an acoustic neuroma'. I also appreciate my good health more than ever. For years, I just took it for granted that I never developed back problems, diabetes, arthritis or any of the usual vicissitudes of middle age. I now appreciate my health and take better care of myself. Another 'positive thing about having an acoustic neuroma'!
Jim
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That's 3 very important and significant things, JIM!
I almost forgot
My number one positive thing about having an acoustic neuroma is....
I now have a valid reason for my nice daily naps :) I love em........ ;)
Maureen
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The two big thiungs that jump out to me are that I'm no longer expected to keep the house clean and I get to have Phyll as a friend!
Hugs to you all.
Love,
Capt Deb
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Heres acouple i thought of:
I no longer drive over the speed limit
My grocery bill is less becouse i can no stand the grocery store
I spend LOTS more time at home
i do not take my health for granted
I used to breeze through everyday in abig hurry now i take my time
learned that trying to please everyone gets you nowhere fast
true friends are there for you
Familey?famly?spelling is not important but family is!
knowledge n research may scare you at first but help you in at the end of the day.
I am not alone w/ the dailey crap...as i see when i come here everyday
Thanks to all
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Great thread!
Not much to add to sentiments already expressed. A couple of simple yet profound changes.
1. Having an AN made me realize how lucky I am.
2. I probably would never have started standup paddlesurfing... ;D
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I'm coming to this a little late but:
Ironically, this experience has restored my faith in human nature.
I'm thankful for the wonderful, supportive people I've met here.
Learned who my true friends are and that that they will be there, no matter what.
I had become mistrustful of the medical community at large, because of two very bad experiences and learned once again, there are many wonderful and caring physicians out there. You just have to do your homework and be careful of who you put your trust in.
I am stronger than I ever thought I was.
There is life after an AN and it is good.
Wendy
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I am surprised how empowering it feels to get through this. After all, "brain tumor" and "brain surgery" are jokes, synonymous for the worst/most complicated/most delicate thing you can think of at the outer reaches of your mind! "At least it's not a brain tumor!" "It's not brain surgery!" :o
"Empowering." What a great word for how I feel!
My list includes:
- deepened my bonds of friendship with some very special people
- I no longer care so much about what other people think of me. I will be myself and they can take it or leave it.
- Don't sweat the small stuff and enjoy living life.
- I've been better about distancing myself from people who always take but never give in return
- I'm very at peace with my life and how I'm living it
- All of which convinced me that I wanted a third child, and now I have my Audrey! ;D
Katie
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I would echo much of what has been said. Lots of good things have come out of this for me, and one of the best is the many new friends I've made along the way. It has made me re-focus on the things in life that are really important - and it has taught me that I am MUCH stronger than I ever gave myself credit for. I take time now to stop and smell the roses and to appreciate the things in life that truly matter (and my sligtly lopsides smile isn't one of them!) :)
I published an article a while back about the life-lessons I learned from this, so for those who didn't catch it the first time around, here it is:
http://ezinearticles.com/?7-Things-A-Brain-Tumor-Taught-Me&id=1876243 (http://ezinearticles.com/?7-Things-A-Brain-Tumor-Taught-Me&id=1876243)
Come to think of it, I also just published an article about the funny side of facial paralysis which some of you may enjoy.
http://ezinearticles.com/?The-Funny-Side-of-Facial-Paralysis&id=2517212 (http://ezinearticles.com/?The-Funny-Side-of-Facial-Paralysis&id=2517212)
So, I guess I would add to my list of blessings that I have discovered my "inner writer!"
You guys are all awesome. And, thanks Jan for starting this!
Debbi
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I look at everthing with much more appreciation. I try to take nothing for granted. Also trying to keep in the best shape health wise. Very nice to have met so many other nice people who can share their experiences with AN. Mickey
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Debbi,
I read your articles. very nice!!!! Funny, enlightening, entertaining and informative too. :)
Maureen
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I would say holding up all the other hard / scary things in life I have to do .... and putting them in proper perspective by saying to myself ' this isn't as hard as having brain surgery'..... I can do this too.
marg
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I am still the same person only better! During this process there are times when I have had to dig deep and I was not sure I could make it through this. I am a strong woman and the past year has shown me really how really strong I am.
Life does go on and I don't wait to miss a minute of it!
Celebrate we are here to enjoy it!
Hugs Michelle ;D
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Positive: Met a couple of really nice ladies, looking forward to meeting another one sometime in the near future, and made a good friend from the forum. Got my brother to come back into my life sooner than he probalby would have.
Don't get me wrong - I'm extremely grateful that I had the outstanding results that I did, but (maybe naively so) I never expected it to be any other way (I'm a great beliver in the power of attraction).
But that's about it. Maybe I'm being negative (and please, I'm not comparing myself to anyone else because I know others have had a lot more to deal with than I did so don't anyone take offense) but other than that, this thing sucked a year out of my life and I'm glad that it's done. Sorry.
Cathy
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I like honesty ;)
It was hard for me to answer this one too!
How about a new thread-things that suck about having an AN.
Do you want me to start?????
Maureen ;)
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I'm right behind you Maureen ;)
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Maureen!!
LOL! THAT would be a LONG thread!!
Cathy
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Good thing about having an AN:
Meeting a lot of great people on this Forum
Being a part, however small and sporadic, of the Goode Ship Princess Batty Wench
Having something interesting to talk about when somebody wants to talk about medicine/illnesses, as in "I have a tumor in MY head, so what's your problem?"
Finding out my family still loves me and puts up with my problems....at least so far! (like saying, what? all the time. I'm sure THAT gets old...I"m trying to not do that so much)
Knowing that it isn't terminal - priceless...
Hang in there my friends,
Sue in Vancouver, WA
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The best thing of all is the humor that accompanies our chats about ANs. I also like being able to blame my mistakes or brain farts on my AN. I'm too young to have a senior moment. I'm not blonde so I can't have a blonde moment. I have AN moments.
Syl
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Being a part, however small and sporadic, of the Goode Ship Princess Batty Wench
oh, we thrive, our dear PoetLorryette! We thrive..... as we search the waters for sea monsters and my dinghy thingy and cures for Laz's and the Capt'n's headaches. I think we need to plunder and pillage some more chocolate sauce for Matthew McConneghy! :D
signed,
the cursed... oh, forgetaboutit! :D
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I really like that chocolate sauce idea... ;D
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Positive things about an AN
I am no longer caught up in things that have little or no meaning at all. I take one day at a time. If I am up to doing something I do it, if not I simply say no. I no longer try to please everybody, I stop and think how will this affect me? My older brother who I haven't spoken to in almost two years is back in my life. I understand him much more than I did before. I no longer stress out at work. I still take my work seriously but do not get stomach aches at the end of the day.
Maureen, I do understand what you are saying. Although this may have changed us for the better, it does not take away the stress we received from it and try to fight our anxiety each day to keep positive. However, we were fortunate enough to find this forum so that we can share the good and the bad. I am greatful to my daughter everyday for finding this forum for me.
Vivian
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Hi Debbi,
Just read your articles. They are great. Thank you.
Vivian