Author Topic: Nothings Working...  (Read 19050 times)

epodjn

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Re: Nothings Working...
« Reply #30 on: June 05, 2009, 09:48:09 am »
Glad to hear you slept a little better last night. I think the storms do have make a difference. We have had a low front passing through all week and it's really giving me bad headaches. Plus it's allergy season. Whenever I sneeze or cough I also get headaches. Does that happen to you or anyone else? Sneezing, coughing, lifting heavy objects or doing anything that causes head pressure gives me horrible headaches still and I'm 6 months out.
It sure is hard to stay upbeat all the time. I find i need to stay active in things that are not AN related to take my mind off of it and to give me something else to focus on. It would be easy to start feeling bad all the time. But that wouldn't do me or anyone else any good. Hang in there, and find something to look forward to. It really helps.
Left side 3.2cm AN/FN removed 12/8/08 Dr's. Shelton and Reichman. SSD, facial paralysis,taste issues, lateral tarrsoraphy 6/25/09,scheduled for eye and nasal valve surgery 6/22/11 life is GOOD!

JudyT

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Re: Nothings Working...
« Reply #31 on: June 05, 2009, 10:49:04 am »
Thanks..........Yes, I do have pressurized feelings when lifting,bending over etc. I think storm has something to do with my problems. I agree that trying to focus on AN unrelated things help. I am just so fatigued it is difficult but go low and slow and do achieve some things which is positive. Love to cook, play in house,keep order going.......even clean out a drawer or two. I keep trying to focus on pleasantries not negatives. Can't tackle intensive chores.....to much energy invloved it seems. I know I am depressed so only attempt menial tasks yet feel productive.
Judy

epodjn

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Re: Nothings Working...
« Reply #32 on: June 05, 2009, 12:19:32 pm »
You have the right idea. I need to remember to not over-do it. When I have a good day I get so excited about being productive that I really pay the next day. I'm trying to stay focused on packing for a short trip this weekend. I'm having a hard time because my mind keeps wondering and thinking about my upcoming Tarsorraphy surgery. My husband just doesn't get it. He thinks it's just a quicky out patient procedure, which it is, but has no idea how the idea of it all is affecting me. I feel like a "problem child". He was a little short with me when I asked him if he could take that day off. I know he has a lot of pressure at work but he acted like I was being a baby for wanting him there. He later apologized but it's still bothering me. I hate feeling weak and needy. I hate having to ask people to drive me places etc. I can drive most of the time but on bad days there's just no way and no one seems to understand that I can do things on one day and then not do them on another. I wonder if they think I'm just being whiny and needy and want attention or something, which I do not. I just can't do things on some days. No one gets this. So glad I found you guys. I feel like, no I KNOW, you are the only ones that understand. Not sure how I got off on that tangent, sorry. I"m pretty positive most days but somedays are harder than others.
Left side 3.2cm AN/FN removed 12/8/08 Dr's. Shelton and Reichman. SSD, facial paralysis,taste issues, lateral tarrsoraphy 6/25/09,scheduled for eye and nasal valve surgery 6/22/11 life is GOOD!

CHD63

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Re: Nothings Working...
« Reply #33 on: June 05, 2009, 01:12:31 pm »
It is somewhat comforting to know that others are facing the same issues of frustration, fatigue, feeling down, etc.  Underneath I know I really am the only one who can change my attitude ..... but sometimes I just wish I could blame someone else for this happening to me.  It's almost as if I am blaming myself for not taking care of myself and letting my body grow an AN ...... my rational mind knows this is not true!

As "epodjn" said I am slowly learning that I cannot do the burst of activity I used to be able to do or I will pay for it the next day ...... both physically and emotionally.  Figuring out the pace is what has been difficult, because the aftermath of an AN is so unpredictable.

I am determined not to let this take over my life so it is a constant struggle to look at all of the positives I have and work on avoiding the negatives!   :-[

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

ppearl214

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Re: Nothings Working...
« Reply #34 on: June 05, 2009, 01:17:53 pm »
It is somewhat comforting to know that others are facing the same issues of frustration, fatigue, feeling down, etc.  Underneath I know I really am the only one who can change my attitude ..... but sometimes I just wish I could blame someone else for this happening to me.  It's almost as if I am blaming myself for not taking care of myself and letting my body grow an AN ...... my rational mind knows this is not true!

As "epodjn" said I am slowly learning that I cannot do the burst of activity I used to be able to do or I will pay for it the next day ...... both physically and emotionally.  Figuring out the pace is what has been difficult, because the aftermath of an AN is so unpredictable.

I am determined not to let this take over my life so it is a constant struggle to look at all of the positives I have and work on avoiding the negatives!   :-[

Clarice

Clarice,

Honestly, I couldn't agree with you more....

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

JudyT

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Re: Nothings Working...
« Reply #35 on: June 05, 2009, 02:08:25 pm »
Clarice......You've got the right idea....Try not to overdo after a good day. I just recently figured that out. I do the same thing....I think wow here I go.....gonna get stuff done today! Next day.....Not good. My son came by for coffee this am and found me teary eyed and depressed sooooo he proceeded to play therapist....."Why are you depressed"  You need to be up and at it. Okay...."How do you suggest I do that? He does not get it that I can't.........want to badly but CAN'T.....Mom has always been a positive force in his life....we are also business partners.....doesn't help things at all. He wants the active, participating Mom right in there....."Power Mom" that's me. No I'm not and admitingly so.....don't want to hear it is his deal. He is a wonderful, caring son but in denial about Mom's issues now. I really think my 2 sons are in denial about my situation. I am a widow of 14 years and been a participant in all things until now. I don't say much because of this and rely on this network of fabulous friends and mentors that have experience behind the words. Thank God!!!! I had CK 4 years ago and for the first 6 months was great then.......stuff started to change......Mom changed...uh oh......It's very hard on family and friends that don't see behind the scenes and the changes that aren't visable......thought processes,spelling,vision,deaf on left side, facial numbness, lack off rest etc. Hang in there....doing what is best for you.....listen to your self and body.
Judy

Jim Scott

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Re: Nothings Working...
« Reply #36 on: June 05, 2009, 02:27:02 pm »
As an AN patient, I cannot help but feel compassion for anyone experiencing the post-operative problems some AN patients are forced to deal with.  Physical problems that, although not always terribly debilitating, are often emotionally debilitating and negatively affect family members and friends, most of whom simply cannot understand something they haven't experienced.  We know that fatigue, headaches and similar pain aren't visible so "you look fine" becomes, not the compliment it's meant to be - but more like a hurtful insult.  Friends and family, even loving spouses, can't understand why this is so.

While more surgery, drugs and physical therapy are all part of the AN healing process, attitude is a critical factor and one often glossed over by some physicians or dismissed as irrelevant by others.  I disagree.  I don't believe that pain and discomfort can be eliminated by simply 'thinking positive thoughts' - that would be naive.  However, I do believe that they can be managed more effectively by refusing to succumb to bitterness, self-pity or, worst of all, submission.  Of course, we're all 'entitled' to a little self-pity once in awhile.  That makes us human.  However, staying too long at the 'Poor Me Hotel 'can lead to a loss of will, self respect and the optimism needed to keep fighting to regain normalcy.  The operative phrase is "it won't always be this way'...and it won't. 

Although God blessed me with a good surgical/radiation outcome, I've watched my wife, whom I love, endure very painful neck and spine problems, several major surgeries - most only partly successful, Fibromyalgia, Crohn's disease and numerous lesser but annoying health issues, including a Morton's neuroma (surgically removed) and a gall bladder attack (and subsequent surgical removal of the offending organ) a few years ago.  She lives with pain every day.  She takes Neurontin and other non-narcotic pain medications, including high-dose (800mg) Ibuprofen on a regular basis. They help, but as often is the case, do not totally alleviate her pain.   She long ago decided that she only had one life to live and she was determined not to live it as a partial invalid, house-bound and miserable.  She is very active.  She spent yesterday at an Indian casino about 80 miles from our house, with our adult son (he drove), playing Bingo and penny slots.  She had a great time and didn't get back until after 2 a.m.  She won $100.  :)  Today, she's exhausted and has spent most of the day sitting; talking on the phone, at the computer, watching TV and reading.  She canceled a regular Friday morning coffee-date with her sister-in-law.  She'll probably go to bed early tonight and be much more sprightly, tomorrow.  However, she pushed past any discomfort she felt yesterday and was determined to enjoy herself, which she did.  The endorphins released probably helped her stave off her pain.  In any case, she did this through determination and a will to live a normal life, despite her deficits. 

I mimicked that attitude while recovering from my AN surgery and I'm sure it hastened my return to normalcy.  Besides, she needed me to do things she can't do.  My adult son doesn't live with us, works long hours and isn't available most of the time, although he's willing to help when he can.  So, I was grimly determined to 'get my life back' post-op, and I did.  Of course, having few complications was a major factor and I fully realize that those enduring late post-op problems have a much, much harder time of it - and I don't diminish their struggle for a moment.  I simply offer my thoughts on how to best cope with the struggle.

The Lovely and Gracious Tina is my right arm in our church benevolence ministry, which I head, as a Deacon.  She was and remains a good mother to our son and all I could want or hope for in a wife.  She rarely complains and is an inspiration to me.  Although she hasn't endured an acoustic neuroma, she has her own set of physical problems she deals with every day.  She does so with an equanimity I doubt I could maintain.  Because most of her medical problems are internal, she often gets the "you look fine" routine and has learned to smile and say "thank you" when this occurs.  When asked how she's feeling (her friends know of her physical problems) she invariably responds: "I'm fine, thanks!"

So, we take it One Day At A Time and fight for our normalcy however we can, always remembering that 'it won't always be this way'.


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.

JudyT

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Re: Nothings Working...
« Reply #37 on: June 05, 2009, 05:49:18 pm »
Thanks Jim.....the response "I'm fine...thank you" is a very good one. You are not only giving it to someone else.....you are giving it to yourself. You are giving yourself an affirmation......yes I am fine.... This too shall pass........
Judy

cin605

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Re: Nothings Working...
« Reply #38 on: June 10, 2009, 12:24:02 pm »
Judy,
Can you tell me more about your lymphnodes filling n draining?Is it the ones in your neck n throat? ???
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

JudyT

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Re: Nothings Working...
« Reply #39 on: June 11, 2009, 08:01:14 am »
Cin........Yes. From up behind my earlobes, down my neck,out along my collarbone even under jawbone. Massage helps to drain it away. I can feel tightness in my throat...lots of sinus drainage in back of my throat that often gags me.
You too?

Judy

cin605

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Re: Nothings Working...
« Reply #40 on: June 11, 2009, 10:44:04 am »
Yes me to....I ihave had the swollen glands for about 3 weeks,i just got done a five day antibiotic it didn't hep i am now on a different one.I have been taking benedryl & tried claritan,hot compresses,naprosyn .
I am going to try & schedule a massage today.
I go back to Dartmouth on Monday to meet w/ ENT nuerosurgeon & get follow up MRI.
I will try to bide time till then.I know even if i call local ENT(EAr,nose,throat) they wil not have an appoinment till at least a week out.
My lymphnodes?are swollen on left side like you said from below earlobes to middle of throat you can see there is some sort of sac filling up.
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old