ANA Discussion Forum
AN Community => AN Community => Topic started by: amymeri on December 29, 2006, 01:03:19 pm
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In my other post I tried to mention some GOOD things that have come out of this journey. While I can't say it was worth having a brain tumor, there are some positive outcomes as well as some terrible things.
So here is my BEST and WORST
BEST: My marriage renewed its committment, my husband hung in there and I am deeply grateful for his love and his steadfast spirit.
WORST: Losing faith in my health, worrying and waiting for the other shoe to drop....every twinge freaks me out (whether mine or my families' )
How about you?
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I'm glad you're feeling better today Amy. I think us girls have an extra burden as I just went through a bad week myself...and it was because of that girl thing adding to the emotional part of this trip. That's about over, and I can feel my spirits lifting.
Best....what I said in the other thread...that my plate was forcibly cleared and now I'm learning to evaluate if I'm going to do something by if I can, not if I should...it's about MY life, and me enjoying MY life. I'm also quite thankful for the man who stands by and gives me every little bit of support I need and keeps an eye out for me (and drives me everywhere because I can't).
Worst....Having to go through this as my first surgery (never even a broken bone before) and things that I remember about it that I wish I didn't.
And as always, my AN friends, without whom I'd be in a mental hospital somewhere. If I could buy you all diamonds, cars and houses to repay my thanks, I would! ;D
Many hugs!
Kathleen
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I love the idea of this thread, amy.. and sending you MAJOR huggles that you are hanging in there.....
Ok, here goes....
Worst: Getting the initial diagnosis, as I was the 2nd sibling in my family to be diagnosed with a brain tumor (my sister's was malignant and succumed to it) and having to tell my folks that another daughter had a brain tumor.
Best: Love and support from my family, my friends, my CB... and having the true honor and pleasure of the friendships here that have helped me during this journey.
Phyl
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Best making all my new an friends, learning not to sweet the small stuff!
worst: not being able to get back to work and being the sole support for my son and I.
This whole experience really does change your perspective on things.
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Best: Our own self-growth
Worst: The symptoms of AN
Make the best of your journey,
Palace
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The Best: was when I found out about this forum and all the wonderfull people that are here..
Worst: was finding out that it is not always possible to have all your prayers answered, when you want it done.. and this tumor, and i am so glad that it is gone.. and all the side effects that goes with it.
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 Of course, I have to do this a** backwards (as goes my life):
 Worst: FACIAL PARALYSIS
  Best:  I ALWAYS LOVE A NEW YEAR.
  Happy New Year my AN Family,   Nancy
(note from Phyl: Nan... had to change a hint of the language... sorry)
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This is an excellent thread! I want to contribute my little bit, so here goes:
WORST: After a lifetime of relative good health and managing to avoid being a hospital patient, to be diagnosed with a major medical problem requiring surgery and hospitalization was disconcerting, at best. I also disliked the fact that most of what happened post-diagnosis (numerous doctor visits, lab tests, etc) was almost totally out of my immediate control. That was tough - for me, anyway. Knowing my 'natural' hearing in one ear is gone for good - and adjusting to that handicap - is a chore.
BEST[/color]: The unexpected opportunity to reaffirm my faith in the love of God for His creation as I was faced with something (an Acoustic Neuroma tumor) I could not 'fix' entirely on my own. I had to lean on Him....and I did, much to my benefit. Learning how many people I considered casual acquaintances actually cared enough about me to pray for me and demonstrate their personal concern for my well-being was quite humbling. Also, my wife's obvious committment to my care and recovery was equally inspiring, strengthening our bond of love, established over the past 36 years. Lots of good stuff and I think, on balance, for me, it outweighs the bad.
Jim[/color]
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Nice thread indeed..
WORST- lost hearing on one side at young age, decreased self confidence in public, didn't go to school or work for one semester,
BEST- New perspective toward living, understanding and accepting absurdity the life poses to us,loving family and friends more than ever, growing up, enjoying the gift of we have got and last but not the least quitting smoking.
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Best...learning that I was stronger than I thought, and that my loving family has taken something good from my tumor, too! ...finding compassionate talented doctors.
Worst...knowing other people endure so much more pain than I have had. I can only offer words and a smile.
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Worst: Finding out that I have a brain tumor --- the world felt apart thinking I was going to die... :'(
Best: Too many to mention --- stronger family, true friendship, ANA and CK forums, Mark (my CK mentor, aka my Angel), better perspective on life to know what is important and what is not, Stanford, ...
Bottom line: The "best" outweighs the "worst". Things happen for a reason and that God has a plan for all of us!!
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Worst: cannot enjoy some places I used to go ; inability to hear in certain environments because of loss of hearing, distorted hearing and Tinnitus, certain sounds causing pain! Loss of balance has taken the fun out of long walks and walking at night, can't walk a straight line!! (don;t drive on New Years eve!! might get a DUI without the benefit of alcohol!! (DUIA)
Best: It could be a whole lot worse than it is! God is in control and has been known for miracles! Its beign!; CK treatment option and awesome Stanford! ; Great support system including all of you on ANA and CK forums. HOPE!
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Worst: I miss being able to hear in social/daily life and don't like the feeling of isolation that comes along with it. Losing friendships and the support of who I thought were my dearest friends when I was just beginning my AN journey. Not having a forum like this 8 1/2 years ago and having to fly solo for so long :(
Best: Discovering an inner strength and faith that I never knew exsisted. Waking up happy and thankful every morning. Finding the TRUE meaning of friendship and deepening exsisting ones.
Cheryl
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Excellent thread!!!
Worst, loss of hearing on one side, and the bother of a BAHA, which I regret doing
Best, resumed all my pre op activities, my medical practice and hobbies, no physical restrictions
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The Best: I got on with my life as before except being half deaf and that is a pain in the butt sometimes. I try not to complain about it as there are friends on here with much, much worse. I gained a little sister in Denise, my fellow ANer and many, many forum friends that I can't imagine being without.
The Worst: Guilt (getting better with time) for having to put my family through the horrible wait while I was in surgery for 8.5 hours. They were dreading that day, I couldn't wait to get it over with. I was happy, happy when my doctors came in before surgery, they were scared to death.
Happy New Year Everyone, Kathy
ps: I was happy, happy even before drugs!! I wanted that thing outta my head very bad.
pss: another worst: when I read the hospital bill........I turned green and I thought I was going to throw up when I looked up all the "Surgical Equipment" in a medical dictionary out of curiosity.....all the different drill bits got to me.
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Best: Realizing that I'm not in control of my life. This experience has definetely taught me a lot about myself, the medical system, what I can handle, and that God will make everything OK. It may not be the path that I want to take, or have very prayer answered my way, but just knowing that God is in control has made this much more berable.
Worst: Echoing on some other inputs... Every pain sometimes spins my in the oh no...now what frame of mind, or every face twitch, head ache makes me wonder has the AN decided to grow??
I HATE THAT! I have never been this way. Feeling alone at times because friends and family just don't "get it" so I keep a lot to myself when I know talking about it would be better.
My inputs above (in best) is my my way of making this year a better year. Hope everyone had a very happy new year.
GM
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The best--- the handicap sigh for my car. the bad---- feeling alot older, being crumsy.(and a bad speller too!)
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It certainly has been a rough year since I found out about my condition, but it did make me appreciate all I do have.
BEST: It made me a better friend. This whole ordeal has made me more compassionate for my friends and their medical problems.
Last month a dear friend was diagnosed with throat cancer. His chance of recovery is good, but the chemo is making him really sick, and my husband and I have done what we can to help out his family.
WORST: The meltdowns. :-[
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wonderful thread! at times it is hard to think about the positive!
worst: the looong and hard recovery. i'm almost 5 months post-op and it's still going. i never thought i'd say it, but i want to go back to work!! i feel so unproductive! i want to do something to help the world! and the fact that AN surgery was the hardest thing i've ever done in my life! the 18 days in the hospital were so rough. it was a whole lot worse than i could've ever imagined!
best: not sweating the small stuff. more patience. and new and better appreciation for health, family, friends, and doctors!
xox
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:o Best: All of you on the forum, that have helped me and put up with my bitterness over this whole situation. My new friend Kathy (obita) (here in MN) who gets it, when no one else does.
Worst: Permanent facial paralysis. Being told by someone you care about that its annoying when i can't hear them.
Denise
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Hello Friends:
8)
Yes, I will "second that," as I too........KNOW, Kathy (obita) "gets it." I appreciate her fully. She wrote privately as well as, a few others.
I was having a HARD TIME yesterday but, feel better today. This is a Yo-Yo go around. My symptoms were awful yesterday and the day before, a neighbor was really "nasty" to me and said a cruel thing RE: my AN. I was so sad, yesterday but, there are lots of cruel people out there and we need to consider, the source. I did!
I'm moving on here.......cruel world out there........
Hugs,
Palace
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Palace, happy to hear today is a better day for you.
Denise
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:)
Denise,
Yes, I wish so much luck for everyone on the forum and those new people joining us!
I read the AN newsletter. Some people have balance to continue or begin exercising again. Yes, oxygen pumping through the heart and brain helps. For those who can't exercise perhaps the doctor can OK the therapy of hanging the head down say, over a bed or couch, to oxygenate the brain. I read once, that is good for anyone that can medically do that. Again, I say getting the OK from the doctor and how long to hang the head over the side of furniture.
My best to all of you.......
Palace ;)
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Wow, how did I miss this thread? My best and worse would echo alot of the others, we all have so much in common, symptoms as well as feelings but having gone through this, we have the compassion that sometimes is not found in even our closest "non-AN" friends. So, to sum it all up.......
Worst - having to go through the whole mess!
Best - I'm still alive!
Pal,
I'm glad to hear you are feeling better, I wish we could go out together with the dogs, it would be fun! Heck, it would be great if Obita could come along too, she understands us "golden girls"! :D Take care of yourself!
~Karen
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BEST:
ALIVE!
WORST:
Post OP: Letting Gravity work on the toilet-
- since you cannot strain.
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Worst: Bleepin' headaches
Best: You guys!!! And the PBW
Capt Deb 8)
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Ixta:
I forgot all about that part.........I remember sittin in there so long I got a arse ache on top of it all. Oh well, I had good drugs!!
Kathy
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Best: having this site and all you guys to help me cope, gaining more patience on the things I can't control, getting back in touch with God,
Worse: not being able to get back to work, falling through all the agency cracks, losing my job and insurance and my ladder LOL Deb I've been with you on those darn headaches! They suck!
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I am pre-op so my worst is yet to come. But here goes ,so far..
The Best: Knowing I will get all my questions answered and getting a surgery date.
Plus "meeting" my God-send, Michelle.
The Worst: The anticipation of what I will find out tomorrow. I have hearing loss on both sides from years of no diagnosis. The thought of total deafness due to surgery terrifies me !!!
PS... Please pray for me..
        Tim
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Hi Tim,
We will pray for you,keep you in our thoughts, hope for the best outcomes. You are in our AN family. Stay strong - we can understand all the emotions you are going through.
Flier58
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Tim
I'm just adjusting to the one sided feeling. It feels so lop-sided, the fullness is huge and noises so loud. My heart was touched when I read you note. I "will" keep you in my thoughts and felt your deep pain of being totally deaf after surgery. (being terrified) I can undersand as, I just have single-sided and it is hard for me to adjust to.ÂÂ
I'm having my hardest time (or second hardest, really) of this journey. The unknown, then the long wait for treatment was the worst but, I'm in so much pain now. My cheek was unbarable today along with my ear feeling like it will blow up, 24/7 now. I think I may call Stanford about it tomorrow. I can't take steroids and don't want anything with that Acetimetiphen (sp?) in the pain drug. I know I need a heavy anti-inflammatory. I'm going nuts, myself right now. I haven't been online much, lately. (somewhat sad how this is all playing out) I'm hoping for changes as the tumor dies.
For you my friend you have my heart tonight and love sent above. I really felt your words and as I'm sufferying so, it helps me feel for you ever the more. I'm rather "down" tonight wondering if this is how I will be left. (mega full ear and the extreme pain)
Hopefully something can be implanted in your ears to hear!ÂÂ
All paws X for you.........
Palace
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Tim:
Your doctors will do anything and everything to save your hearing in one ear. You can count on that.
Huge hug from Minnesota, Kathy
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Tim I'm sending good thoughts, heavy prayers and huggles your way today as you journey to moffitt!
Palace I read that if you lose hearing in both ears you can have the cochlear implants done which are also suppose to help minimize tinnitus. I guess after I read that I figured I had an option if I went deaf so I didn't worry as much.
Hugs to help you feel better!
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Gosh this is really a good thread,
The Worst: BRAIN TUMOR, OMG I am dead. Decisions, decisions, surgery, radiation, ignore it, surgery, radiation can't ignore it.
Dumb friends and co-workers. Single sided deafness, balance problems, memory problems and worst fatigue ever.
Finding out I also have AIED in my only hearing ear and trying to deal with being totally deaf. (Makes single sided
deafness seem very small issue). Mean and out of touch doctors.
The Best: Treatment behind me, I have grown stronger and more confident. I no longer have to think any doctor has
the last word in my treatment or recovery process. And the very best of all is the truly wonderful AN friends I have made.
I have found the most remarkable people during this journey. If I am feeling down or have a wonderful day, I can call or
email them and they are with me all of the way. I have found a renewed joy in life. Is it the army that says, "Be all you
can be!"? I don't intend to wast a day.
Hugs and Blessings,
Sandy
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WORST: Finding out about the tumor, me- as a musician who also records and mixes music material - long term plans seem very grey, like a runner without a leg.
BEST: First time ever I've been through a critical health condition, discovering my ability to handle things without going nuts (feeling proud of myself) , different perspective for life, reading "Love, Medicine and Miracles" by Bernie Siegel , gaining self confidence.
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Worst:
- Not one but two ANs! I am going to be deaf!!!
- Like Pablo I was a musician and a music teacher. Taking time to learn a new profession has robbed me of precious time with my family
- Family having 5 AN surgeries in the past 5 years (2 each for my brother and I, 1 for my father)
- My young niece and nephew being diagnosed with NF2 (3 and 6 yrs old)
- Watching my 7-year-old child have an MRI to screen for NF2 and waiting for the results (still waiting)
- Communication difficulties
- Watching my younger brother lose his hearing and have facial paralysis on both sides
Best:
- Family drawing closer together
- Family understands what we are going through- Wives can relate, those of us with NF2 can relate...You should here some of our "tumor talks")
- Knowing that I can get through more than I thought that I could
Sorry for venting....
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Wow, Jeff, what a rough road for you and for your family. That's a lot for one family to deal with and I am touched to hear that your family has become closer in the struggle.
Your story really touched me and encouraged me to go forward and be thankful for what I have today.
Blessings.
Amy
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The Best: My family support. With out my husband i would have made it this far. :)
The Worst: Being sad and scared all the time. I cry alot. Also being misdiagnosed for 2 years. :'(
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Worst: The fear
Best: Several years ago, when my friend's 7-year old daughter was diagnosed with leukemia, my friend's mother said,
"People want to help. Let them." My friend reminded me of those words, and I lived by them.
So, the best for me was realizing that I live in a truly giving community. People cooked and shopped and provided food for our family for 6 weeks! I was flabbergasted. The kids were thrilled.
It was like magic.
"Mom, what's for dinner?"
Ding Dong. Open the door--there's food.
OK, so now it's payback time and I don't hesitate to give back.
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Best: coming to realize what really matters in life.....at the end of the day what needs to carry on to the next and what doesn't
Worse: hearing loss, re-occurance
Kathleen