Trouble having people believe my issues

[Mei Mei]

Dear All,
This past week and even today I've gotten comments that  I should not think about my illness and move on with my life.    I had a neuropsych work up and in the letter the psychologist said that my social life revolves talking about my illness.   She then sent the letter to my therapist and I'm supposed to work on this.   Then my daughter mentioned it.   The thing is that people don't believe, at least the people I'm involved with namely my family and therapist that I actually do have a problem.   I am almost at the end of the problem thanks to Dr. Ducic, Dr. Moriarity and Dr. Amjad at Georgetown.    Postoperative care is not as it should be and there is little help until you guys point me in the right direction.   You all know the difference between an ordinary headache which I was complaining about yesterday from the stress of taking care of my 97 year old immobile, incontinent father that has just entered hospice last week and a post sugical occipital neuralgia headache complicated by cervical dystonia.   There is a long road to recovery and I would have walked it if it weren't for all of you.   I hope that none of these people that are tired of hearing my story never ever experience a postsurgical retrosigmoid occipital neuralgia cervical dystonia headache.   If they do like you have then they would see the validity of my wanting to move on but the damaged nerves not letting me.

Speaking of damaged nerves, I had the bad luck to be at Georgetown University in 1988 for a cervical disectomy of the C 6-7 and they took the  C 5-6.   It was not until after I was closed up and an intraoperative x ray was done that they discovered they took C 5-6 instead so they had to open again and take the ruptured disc.  Then the next morning, the doctor came to me and said he saw a disc that I would need to have removed in 4 years so he decided to do it then and save me the trouble.  LIE!   He severed the recurrent laryngeal nerve which moves your vocal cords.   Speech is an overlying function of the vocal folds and the primary function is breathing so since I was 36 years old I have no longer been able to jog, cross country ski walk briskly with my dog up and down hills in the parks.  Yesterday I had to rest for 20 minutes in bed after climbing the stairs to bed from bringing in two bags of groceries from the car.   All my air disappears.   In medical terms it's called dyspnea or lack of exercise tolerance.   A year after the surgery I had to go to California to try to reinervate the nerve with the nerve that moves your tongue (ansa hypoglossi).   It never helped my breathing.   My ENT on the last two visits wanted me to see his associate who specializes in vocal cords since 20 years ago my ENT said that I would get an enlarged heart eventually because of this breathing problem.    Now I am showing signs of an enlarged heart on my Echocardiogram and the cardiologist wants me to do a stress test and get a pulmonary work up.   The geneticist said last week that we have to keep an eye on this enlargement and get yearly echo's.   All these years since 1988 when the doctor said this I was very careful not to exert myself so as not to get out of breath.   Well now it's finally caught up, but at least I know to monitor it.... but at least I have all of you out there that understand that I want to get better and get rid of this Acoustic Neuroma recovery process, but it is a process and doesn't happen overnight.   I wouldn't wish this on anyone.

God Bless All of you Forumites!
Mei Mei

[Mei Mei]

Oh and I forgot to mention what has been bothering me since Friday's appointment with this vocal cord doctor.   He said for me to get a better airway, I would have to sacrifice my voice and get a Trache put in.   He knew that wasn't an option of course so now I am on the watch and wait for the enlarged heart and working on getting my cervical dystonia better with some Botox on Oct. 25th.   Maybe the shots will end the cycle of pain and I won't need more.   There is hope at least for that!
Mei Mei

[ppearl214]

Hugglez are all I can truly offer....... MAJOR hugglez.... hun, don't know what to say but try your best to hang tough..... oy.

MAJOR hugglez!!!!!!!!!!!    

Phyl

[Mei Mei]

THanks, Phil and back to you.    Am getting a kind of Botox but not Botox at Georgetown on Oct. 25 for Cervical Dystonia.   Never heard of it before, but then what's new.

Mei Mei

[Jim Scott]

Hi, Mei Mei ~

You definitely have a lot of physical burdens to bear, none of them minor and certainly none of them figments of your imagination.  That your psychologist contends that your social life revolves around talking about your illness is the worst combination of arrogant ignorance and sheer insensitivity I've ever encountered.  Obviously, you have chronic, debilitating physical issues to deal with that cannot simply be ignored or wished away, i.e. 'move on'.  My wife (The Lovely and Gracious Tina) has lesser but still problematic issues to face every day and although she is a trouper, she will talk about these issues with me and her physicians.  One new doctor once tried to give her the 'move on' lecture and she listened silently, thanked him for his time, left, canceled her next appointment and never used him again, for obvious reasons.  He had her very detailed medical record that showed all of her surgeries (18, 7 major) and that made it obvious that while she functions relatively well (out of sheer will, some days) she was far from being an attention-seeking hypochondriac.  This doctor inferring that she was, clearly was a huge insult that, in my opinion, she handled with aplomb.  Then again, I suppose that I'm a tad biased in her favor.   

Its apparent that no one on this thread can offer a real solution to the lack of compassion that you've encountered from relatives, friends and even medical professionals - who should know better.  Your spirit is amazing and I can only add that you are in the thoughts and prayers of many of your forum friends that empathize with and care about you, Mei Mei.  We offer you our continuing support and our hope that some of your challenges can be alleviated and surmounted, if not vanquished, in the months and years to come. 

Jim

[Brewers7]

Mei Mei,
I had close family member tell me once that I should quit going to doctors and taking medicines and just workout at the gym.  I explained that I wasn't dealing with a sinus infection here but that I would love nothing more than avoiding doctors and hospitals.  In your own time frame,  you will probably want to get away from the topic to give yourself a break.  My husband and I were having dinner with another couple about a year post op.  On the way, I asked him not to bring it up.  (If someone asked a specific question, that was ok.)  Mainly I just wanted some normalcy for a little while.  In the meantime and as long as you want to talk, we are here.

[Mei Mei]

Thank you, both.   I know you are always there and understanding.    Three cheers for wonderful Tina.    I have to meet all of you someday.  There are very few people you can confide in that haven't been there.   It's a pain a daily struggle that is indescribable.

I must bring up the book My Name is Aram by William Saroyan.   It is filled with short stories that take place in Fresno Calif.    My favorite one because I can relate to it so well is about the two old men sitting in front of a store drinking coffee all day.   One was Armenian and one was Kurdish.   They didn't speak each other's languages but were clearly minorities of the Middle East recently immigrated.    That sat there all day on the bench grunting and nodding in total understanding.    That's why I value all of your friendships.    I take a break with my non-AN friends and go out to lunch and the movies, but we never as the therapist said talk only about my health.   That was such a patronizing comment and I lost trust in her with that and will move on.   I can do well with my Forumites and make categories for my friends like little PO Boxes at the Post Office.   I went for the long awaited GI doctor appointment today and he understood my comments that GI Cocktails hide real and serious symptoms so he wouldn't give me anything.   I am now keeping track of when the pain hits me in the low belly.   I realized tonight that it is when I am out taking the dog out for a walk.   Hmmm!   Will get the Pulmonary work up on later this week.   He will be in touch with the cardiologist.    That's why they call it CPR.   They are very related.   My father's aide this morning won my confidence with his limited English he said that a breathing problem is very bad for your heart and you have to do something about it.   My Geneticist in Baltimore who originally ordered the Echo said that we have to redo the Echo once a year and keep an eye on it as Ehlers Danlos patients get enlarged aortas.

Yes, there is a Santa and there are real health issues that matter.   

I love my Forumites.

Mei Mei

[ombrerose4]

Hi Mei Mei,

Just wanted you to know you are in my thoughts! It is hard for people to understand if they haven't been there. Keep smiling:)

[Mei Mei]

I know, that's why I love this group so much.   Sorry I missed your NY program and tonight's nerve reinnervation program.   It sounds really interesting.    Could you post some notes about it when you have the time?

Hugs,
Mei Mei

[Kaybo]

I will throw in my 2 cents...as someone who has MULTIPLE residual effects from AN surgery (that most people are not even aware of) AND have lived with this for a LONG time (by far before any of my friends had ANY health issues), I do think that there is a VERY FINE LINE that we have to constantly be aware of.  Even now, I have to be careful about what I say, to whom and how much I say.  For example, I know that my MIL doesn't really ever like to hear me say much at all about this Forum, my friends from here or my AN - it is not really because she is not aware of all I went through (& exceedingly supportive at the time or if issues arise now - like my T3), but for her it was a very scary time - for me and for her son!  She has a tendency to block out all unpleasantness for other issues also - that doesn't mean I love her less or that I never talk about these thing around her, but I pick and choose very carefully.  I think that we have all been around people who dominate conversations with one subject or another...especially health issues.  For us, an AN CAN be a life changing event, but since we are hopefully accepting and embracing our "new normal" we need to save our complaints and stories for those that truly understand the way we feel - on here or in the special relationships that we may have built from this Forum (whether it be thru text, email, or friends close by).  I am VERY open about talking about my AN Journey but I try to let the other person lead that discussion (poor Dave has heard it so many times but he also knows that people are very curioius).  I do count on those closest to me to help keep me in check on how much I might talk about my past - I think that they will be truly be honest & open with me!

So...there it is...
K   

[Tod]

Mei Mei, I feel for you, I really do. To most people I look really normal and since my voice is so much better, I sound normal. But there is stuff going on inside that is not so normal and not so treatable.  I think Kaybo is right: We have to be sensitive to how others handle things.

On the other hand, my youngest sister asked me if I was ever going to get beyond my tumor. I told her flat out: "No. I have no intention to do so. It is mine, it is my experience and it has changed me. So there!"

When it comes to doctors though, we shouldn't be afraid to say what is going on and encourage them to engage in discussion about our healthcare needs. We should also not be shy to ask: If it is not this [my tumor, or whatever] causing these problems, what is? If you don't know, how can you so readily dismiss [my tumor, or whatever]?

Be good to yourself and I hope you get to feeling better,

tod

[Mei Mei]

Thanks so much Tod for your wonderful words.   I'm so thrilled for you that your voice has gotten better.   It's such a struggle not to have your voice as it is so personal and also frustrating because people don't understand you and think you're dumb.

I've had this paralysis since 1988 and my voice was fine but I just had no exercise tolerance.    The doctor last week said he could make my breathing better but I'd have to sacrifice the voice and get the Trache.   No way and he agreed with me.   It's too much to sacrifice.   I think I said this yesterday and I'm repeating myself.

Yes,  it's our tumor and I wish they sent me home with it in a bottle like they did with my friends' tonsils when we were little.   I never got to see it.   Did you get to see Bob?   It's really changed my life.

Tomorrow I see the Pulmonary doctor to give input to the cardiologist for my developing enlarged heart and aorta from this paralysis.   I identified when I get the stomache pains:  when i get outside to walk the dog or get out of the car and walk into the hospital today.   There's this intense pressure in my low belly.   My friend the nurse practitioner said she thinks I'm gulping air into my belly.   We'll see.
Thanks for writing.   You and the rest of the Forum are the only one's outside of Dr. Ducic and Dr. Moriarity that I can talk about this.
They're very sincere listeners that happen to be on the cutting edge of helping us out.
Sincerely,
Mei Mei

[Tod]

No, Mei Mei, I only got to see pictures of Bob. And I do that again on Monday.

One thing to consider, and it is part of what I will be talking about with my doc on Monday, is the complexity of the Vagus nerve. Not only does it trigger the vocal cord, and the autonomic swallowing processes, it wanders all down through the abdomen and also drives the stomach and intestines. It seems quite possible to me that this is a source of all the GI difficulties I have had post surgery. 

We have to be responsible for our own care. If we can't do that, we must have an advocate. You have done a marvelous job pushing for your own care, whatever  you do, don't give up. But do find some time to try and put it aside for a few minutes...you need to give yourself an occasional break.

-Tod

[Mei Mei]

Thanks, Tod.    I've never seen pictures of mine post op.    I didn't know they showed them to patients.
I remember my mother in that last few months of her life would pat on the place of her pancreas tumor and smile like it was her baby.    She had already said no to chemo and radiation and the doctor told me she was the wisest person he ever met.    She died on Oct 15
 I've been having.     I wonder if there is a way they can confirm this.   I'll also write a note to the caroing to Montreal next Tuesday through Sat for a genetics conference in the Delta Montreal hotel.   I get to spend those days with my grandchildren.   I'm looking fo to swimming with them and taking them for strolls in downtown near McGill.    Love Montreal.

We're running out of money for my father's home care and that is a stressor as well.   I have to figure out what to do for his care at home which is cheaper than a nursing home.

Take care.   It's a beautiful day...get out and take it all in!
Mei Mei

[schmidtkat]

Mei Mei,

My heart goes out to you. You truly are carrying many burdens. And yet, you reach out to so many on here with words of encouragement and strength. I know that telling you I can relate to many of your issues doesn't solve anything for you but know that I'm sure willing to read what you feel like sharing and do care about your well-being. This site truly is a place for us to "unload" our baggage, or as a friend has told me... "dump your bucket".
I've been that route of a GI cocktail to soothe the pain, and then be told the physical symptoms are only in my head. Ouch, that can hurt as bad as the esophogeal spasms I was encountering from a faulty gallbladder (which was ultimately determined to be the cause of the spasms).
The devastating effects of pancreatic cancer also strike close to home. My father-in-law was diagnosed with it and passed just 6 weeks later.
Okay, so I wallowed in the pity pot with you for a while. Not likely that fixed anything for you, but please know that I do care and can emphathize with your frustrations and challenges.
So here's a little pick-me-up to end this on a positive note...a good friend gave me a daily devotional with the following quote from Clarence Bauman, "The purpose of prayer is not to inform God of our needs but to invite Him to rule our lives." Sometimes I have to step back and ponder this a bit to remember He already knows of my needs, I just need to Let Go and Let God. I pray this will be of comfort to you.
"Dump your bucket" here anytime. You'll find great support.
Kathy