Author Topic: Pinch me now I want to wake up!  (Read 11409 times)

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: Pinch me now I want to wake up!
« Reply #15 on: March 30, 2009, 11:42:17 am »
Linda -

I'm so sorry to hear you are having a bad day  :'(

Hope things are brighter tomorrow   :-*

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

kathylittlejohncobb

  • Jr. Member
  • **
  • Posts: 76
Re: Pinch me now I want to wake up!
« Reply #16 on: March 30, 2009, 12:54:11 pm »
Dear Joseph, Linda, klangel,
Oh, gosh!  I guess I am Pollyanna.....!
I absolutely hate how bad some of you are feeling...not wanting to wake up...wishing to die...  :'(
Maybe my AN experiences were not as bad as many.  But...When I look around & outside of myself, I see so many things worse than an AN, & I am truly grateful for having had an AN rather than so many other things.  And I think, "Whom would I wish my AN upon?"  And I honestly can say, no one else.  No one.
A man I have known most of my life died last fall of a malignant brain tumor.....would his widow have chosen an AN for him instead of what he had?  Most assuredly so.
Would the person with terminal cancer trade his diagnosis for an AN?  The one with leukemia?  What about the veteran returning with no legs?  My friend who was diagnosed with Lou Gehrigs's disease a year ago, who can no longer speak?  Would an AN be worse than the cross that she is bearing?  I truly don't believe so....
Is the ringing in my AN ear bothersome at times?  Oh, yes.  Am I off balance at times?  Yes.   But I can walk, I can hear, I can even tune out the ringing when engrossed in something interesting. 
Was having an AN scary?  You betcha'!  Would I have chosen to have one?  Hardly!  But having one has made me stronger, more compassionate, and more grateful for the things that truly count.  Am I the same as before my diagnosis and surgery?  No.  But I hope I am better...I feel better...inside, where it counts.
I truly don't mean to come down hard on you, and my prayer is that you do have better days, that you do come to accept your AN as just one of those things....one of those things that you can accept and overcome...and finally, actually receive grace from.
Praying for good days for you,
Kathy
 
Retrosigmoid at House/St. Vincent's in Los Angeles 4-4-06; partial hearing saved on AN side;
Dr. Marc Schwartz & Dr. Rick Friedman, my heroes!

Mickey

  • Hero Member
  • *****
  • Posts: 753
Re: Pinch me now I want to wake up!
« Reply #17 on: March 30, 2009, 07:58:29 pm »
Its very sad to hear when people are feeling so bad. Please don`t give up! Please at least try to fight back! I know that can be easier said than done but its worth a try. I`m fighting back (presently W+W). I have completly changed my lifestyle doing resarch on nutrition and whatever possible to make me feel better. Exercise, long walks, no coffree replace by herbal teas, supplements of all kinds (research). Start a routine and remember that everything takes time. It Can`t Hurt! It has helped me with my life and symptoms no change in tumor migranes all but gone tinnitus manageable. I forgort one thing Prayer! Which I`l be doing for all hoping you`ll be feeling better, Mickey

yardtick

  • Hero Member
  • *****
  • Posts: 1321
  • I have to keep smiling, or else I WILL cry.
Re: Pinch me now I want to wake up!
« Reply #18 on: March 31, 2009, 10:34:37 am »
Joseph,

Hang in there.  It seems to be part of the roller coaster ride.  I experience either facial pain or headaches every day since I woke up from my surgery Sept 8/06.  Dealing with pain issues isn't easy.  It has taken a toll on every aspic of my life.  Know that you are not alone and it is OKAY to have a pity party.  That's what we are here for.

We have all experienced having a friend or relative battling cancer.  Some do not make it.  This time last year my son lost a very dear friend two days before his 18th birthday.  I would have traded places with Amanda in a heart beat, but that was God's plan for her and this is mine.  Living with chronic pain isn't easy, nor is watching someone loose their battle with cancer.  I may feel sorry for myself some days, and ask why me?  I just know tomorrow is another day and I hope it will be a better day than today.   

One of my best girlfriends is battling lung cancer.  I hope the chemo knocks the cancer into remission.   Her outlook is a little bit of hell for more years of life.  I agree with her outlook.  No one really wish anyone to have an illness.  I believe no one has a right to comment unless they have walked a mile in someone shoes.

Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

CROOKEDSMILE

  • Sr. Member
  • ****
  • Posts: 376
Re: Pinch me now I want to wake up!
« Reply #19 on: March 31, 2009, 04:02:53 pm »
 I really don't like it when my husband or friends/family says........Well you could be a quadraplegic or you could be................yadayadayada. Well. Yes I guess I could be then life would be even more difficult than it is right now. Thank God that is not the case but it still doesn't make this dry eye that doesn't close feel any better and it doesn't keep me from running into walls from lack of balance (Surgery gave me secondary endolymphatic hydrops disease which affects balance) and it doesn't take away the facial tightness and spasms. It doesn't take away the headaches or the incision pain that has never gone away. It doesn't keep me from choking on my food or liquids due to my swallowing nerve being paralyzed after surgery and a feeding tube down my nose for a month. I could go on and on but I won't because I think I've made my point. What I want to say is that whatever your situation is.....if YOU are the one dealing with it then YOU have every right to voice a complaint and definately have every right to a pity party or a bad day or several. Whatever makes you feel better and whatever helps you to cope then so be it. BUT as I have learned and must remind myself is that although I am dealing with alot I have to find things in my life that I do enjoy and focus on that. When I am feeling very down then I HAVE to get outside and get some sunshine, exercise. Take my kids to the park and surround myself with laughing children who don't have a care in the world. I have found my coping mechanisms and you must find yours whether it be i.e. meditation, religion, exercise, gardening, etc. Complain ALL YOU WANT!!!!!!!!!! We will listen, we understand and we won't say.........well, it could be much worse. Because for you maybe it couldn't be much worse. I don't know how you feel every day. Maybe you do feel worse than someone dying of cancer. Emotional pain can sometimes take a harder toll on you than physical pain. And a combination of the two can be disastrous.  What I do hope for those of you going through a tough time is to find your coping mechanism like I said. I read alot of self help books and daily devotionals which are religion based. I also stay busy with my kids. It is truly amazing how if I can divert my attention away from my aches and pains then I don't seem to notice them as much.
Yes I am thankful that I can see, hear, walk and that I haven't been given 6 months to live. Just because I complain about my problems doesn't mean that I am not thankful for the good things in my life. It is just another way to cope.
May God Bless you and may you find peace and comfort in whatever way works for you,
Angie
« Last Edit: March 31, 2009, 07:50:07 pm by CROOKEDSMILE »

msmaggie

  • Hero Member
  • *****
  • Posts: 665
  • Blessings abound!
Re: Pinch me now I want to wake up!
« Reply #20 on: March 31, 2009, 05:56:37 pm »
Well said, Angie.  This is exactly the place where we can let it all hang out.  I, too, hope that those who are desperately unhappy can tie a knot in their rope and hang on for dear life until something comes by that will give them a ray of hope. a window to the world outside of their pain.

Priscilla
Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

highlife

  • New Member
  • *
  • Posts: 39
Re: Pinch me now I want to wake up!
« Reply #21 on: April 05, 2009, 09:16:05 pm »
Joseph,
I'm really glad you started this conversation.  To one extent or another, we have all experienced loss of capacity we had before the AN.  I don't know about you, but sometimes I just get plain tired of being a good sport about it.  I'm only 1 month post-op but had been feeling lousy for almost a year before surgery.  It gets old.  And I'm among the lucky few who kept most of their hearing, had no facial paralysis, and no complications.  Amazing, huh?  But I can't walk without thinking about every step.  The worst thing is that I don't feel safe around my horses,and they are my sanity.  My balance is bad enough that I can't think about riding yet, and I wonder if I ever will be able to regain the ability to ride well. I have Spanish horses, hot-bloods, that are not strolling around horses.  But they represent a physical and mental challenge that I need at my age (63) to keep life rich.
I'm sure we all have things that feel like great losses that might not look that way to other people.
You have a lot of courage, Joseph.  I'm sorry for all of the miserable things you are experiencing.
Steph
Rt ear AN - 10x6x4mm
dx 9/08
wait

Tisha

  • Sr. Member
  • ****
  • Posts: 297
Re: Pinch me now I want to wake up!
« Reply #22 on: April 06, 2009, 10:10:12 am »
I'm so sorry to hear about your pain, Joseph.  And I"m also glad this conversation was started.  I've had an up and down time since my CK in January, but emotionally I've been pretty good.  Today is the first day I've shed some tears about my hearing issues since my diagnosis in October.  I was going to stop by and ask if it's normal to be fine, then just be angry and so terribly sad about the loss.  Plus, do you find yourselves just irritable to be around and angrier than normal sometimes?  I just got back from springbreak and it didn't help.  I'm just in a really bad mood today.  I'm tired of the distortion and tinnitus and worrying constantly if I will loss my hearing.  I'm tired of saying "what?" and tired of worrying how annoying it must be to DH to have to speak up and/or repeat things.  (even though he has NEVER let me to believe he is annoyed). 

I'm tired of hearing the "roar" in restaurants and other places.  I just miss my hearing.

I do count my blessings that I still have and that is what has gotten me thru the past 5 months with a relatively good outlook and mood throughout this ordeal.  But today I'm having my first pity party, real pity party and didn't know where else to turn.

Tisha
1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys

klangel

  • Jr. Member
  • **
  • Posts: 58
Re: Pinch me now I want to wake up!
« Reply #23 on: April 13, 2009, 06:47:13 am »
wow! you hit the nail on the head with that ! its both amazingly comforting and yet sad to me that all of you are experiencing the anger and personal sense of torment and loss that i am. i would never wish this thing on even my worst enemy. im nearing 4 years out of surgery and am just now realizing that i will have to be this awful way for the rest of my life. i am soooo tired of saying what and not knowing where someone is calling me from! i miss going to malls movies and most of all concerts. (cant go cuz of the noise)im sick of facial pain headaches walkers and canes. im plain sick of doctors who all pat you on the wrist and say cant help ya. but what really makes me the most sick and tired is feeling useless and un fun, of feeling real angry that my face is now permenantly distorted and five of my teeth are gone.and that cranial neve damage can not be fixed(at least in this century) so  since i want desparately to love my life again i started a new plan of attack... i am seeking a solution to each singular symptom... i took the advice from a whole bunch of you on this forum i now get botox injections for the face pain and yay it is working. just some minor adjustment the next time but no more twitching and clenching! and my phisiatrist is great! i go weekly to chiropractic and biocranial treatments also massage therapy and lymphatic drainage. it helps tremendously and im even learnig lymphatic dranage and some reflexology from my therapist! i will be going to a thirdeye doc to discuss having the laser surgery on my eye to fix the corneal erosion and that will be a fabulous qol improvement. feeling like i am being poked contiuously in the eye hasnt made me all that nice.so basically the point i am getting at i guess is chances are that we will all be this way probably forever. i wish i had known from the beginning but i didnt so now ill just have to work on each horrible thing and take one day at a time. some days i will have a pity party because i lost the me that was me and no one understands but i refuse to go lay under the back tire of  bus. that would just be too easy. like the docs say "it is what it is. you are still alive" and although thats not the answer i want it is still the answer so i gotta deal. i suppose ive been pinched and am now awake. ha. thanx guys! love, kerri

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7447
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Pinch me now I want to wake up!
« Reply #24 on: April 13, 2009, 08:26:33 am »
kerri,

thank you SO very much for sharing this! Like you, I deal with many medical issues.... and all the dr appts, all the "possible" treatments, all the "well, I've done what I can but maybe another dr has a better solution...."..... I love your spirit! I love the fact you are taking things one step/issue at a time. I learned that many years ago when I first took sick (non-AN) and I tried to attack things from all sides at once.. .and all it did was wear me down emotionally/physically/financially.

Many here know my mantra... "day by day, inch by inch..." as that is the way I have attacked what ails me (and still does to this day).  Sending LOTS of mental energy/strength your way (and to anyone that needs it).... as I am a firm believer that when we all stand together, in numbers, we prevail.

Hang in there all!  And thank you for sharing all you have!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: Pinch me now I want to wake up!
« Reply #25 on: April 13, 2009, 01:22:58 pm »

Many here know my mantra... "day by day, inch by inch..." as that is the way I have attacked what ails me (and still does to this day). 

Definitely excellent advice.  Take it slowly - and even though it's hard, have patience.  Things WILL get better  ;D

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • To conquer fear is the beginning of wisdom
Re: Pinch me now I want to wake up!
« Reply #26 on: April 13, 2009, 03:37:50 pm »
Reading the posts on this vibrant thread is a stark reminder of what some AN patients have to endure on a daily basis and how hard that can be, over time.  The physical and emotional challenges are enormous and for some, can be a very difficult reality to deal with 24/7.  These folks have an absolute right to be angry, frustrated, sad and even despondent at least some of the time.  Who wouldn't?  That the majority manage to get through their bad days and do so with tears, anger or just an attitude of grim determination is beyond inspiring.  I could name many who fall into this category but I fear that I might leave someone out and I wouldn't want to offend anyone who is struggling, but you folks certainly know who you are.  If this website and these forums can make your battle a bit easier in any way, I'm immensely gratified and I have no doubt that the entire ANA organization would agree with me on that.  From the ANA's founder to the current president, board of directors and the folks who oversee the website, including Director Judy Vitucci and the moderators, we're all here to serve AN patients.  That some of you free free to share your bad days as well as your joys is welcome and appreciated as it validates the purposes of these forums.  Thank you - and may you all have better days ahead.

Jim
   
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: Pinch me now I want to wake up!
« Reply #27 on: April 13, 2009, 06:04:16 pm »
I wish I would have said all that, Jim.

Some wonderful points.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways