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Senior Member
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Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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Senior Member
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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I must have a renegade dr or something, cuz' there was nothing wrong with my thymus - other than being a little small, so I don't understand why it had to be removed, but that was concensus among all my drs that it needed to go and "stupid me" I was desperate and did it - I would have done anything to get better - anything! So here I sit with a 6 in scar on my chest and 2 gross spots where my chest tubes were .I still wake up in pain if I sleep flat on my back. Still take 2 pain pills a day - dont want to end up a pill popper, but need them to get through the day........My blood work was a little better after the thymectomy, so you never know - my antibody levels were over 600 when I was admitted to the ICU..should be .04 per my doc.....in short I was really sick, though nothing compared to you........I just don't see why they won't listen to you - you know your own body - you know when you feel like crap - I wish our docs could have our problems for one day then they would understand what it's like to be sick and scared and ignored.... Today has been a bettter day; my son aksed for 7 eggs over easy, picante, toast and chips for breakfast - he's 16 and 6'2" and I was able to make it for him,so I feel pretty darn good! I just love taking care of that kid! He drives me crazy, but he is so much fun. And he has been so scared b/c I always took care of him before and now I have to tell him to "man up" and take care of himself most of the time - I hate that. Your hubby sounds like mine - we are really lucky. A lot of people simply cannot handle taking care of someone that is chronic and take the easy way out - we are really lucky! Mine is already trying to plan a vacation and I am in no condition to do so - for him it's a release, an escape, for me just more work and stress, so I'm fighting tooth and nail - he wants to go Alaska but I refuse to be that far away from my doc - what if something happens? I would be up a creek.........Now my doc has proomised that I won't have another crisis - that they will catch it in time, but the last one scared me so bad that I just want to take it easy- do you think that's dumb? I laughed when I read about your xmas card - you have one great sense of humor lady. I can totally relate.That's like something I would do, so I really thought it was clever.......hee hee You know when I was in the ICU the nurses were questioning whether or not I was even sick - they said I looked to "good" to "healthy" to be ill - what a joke. They kept asking me what "type" of testing I had and if I had tested positive - let me tell you, I went to many drs. and my surgeon said my diagnosis of MG was the most comprehensive he's ever seen and he's been practicing over 25 years, so I KNOW they did all the right tests........just makes me want to scream! WE "look" normal so therefore we are - what a joke. Take it easy and wish me luck today - I have to see one on my many specialists and it scares the bejeebies out of me - I hate blood work! It hurts and scares the crap out of me! Erin
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Originally Posted by rumpled
Oh no, no thymectomy. The CT came back and said only moderate tissue. My husband just laughed. ALL my imaging has been incorrect so there is no talking to them but just a few examples - my pituitary MRI for 12 years said 1 tumor on the left... in the end when they did surgery, there were two tumors, one on the left (actually, it was ALL over), and another one on the right. When I had my adrenals removed, I had a CT the day before and it was normal. They were removed and were at least 2x normal size. I had post op pain and so had another CT - the report said... my adrenals were *unremarkable* [this was really stupid since I was there for post op adrenalectomy pain - hello!!!]. Even my hysterectomy imaging missed significant crud that was there and my doc was amazed at all the stuff that was really there and that they missed adenomysis as well the extent of the other stuff they knew I had... he said I was long overdue and was sorry he argued.
So no, I am not going to get a thymectomy (not really bucking for #13 though...) but who knows what is really there.
Ah the upbeat... counts against you... they think personality is health you know... I have a very warped sense of humor to cope - it is the only thing I have left. Thankfully most do not get it but after my pit surgery, I got my surgeon to give me a picture. I sent it out at xmas with a santa hat and eyes on it (the tumor was the beard, the pituitary was his face) and only one person got it... tee hee... on our little xmas update... Now I do not even have the energy to send out cards. But I have lost a lot of weight so everyone thinks I am fine. Fine fine fine fine fine. I look Good! Makes me want to scream.
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Erin
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