11/09 Medical test's, diagnosis update

It's been awhile since I've made any health updates so here it is:) I don't know where I left off so I might miss some conditions. I saw the eye specialist to see if glass's can help and he too found many things wrong with the eyes. Things the other 2 eye doctors didn't find, along with the problems I already mentioned my eye's are like pigeon toes. They don't always stay centered which is causing the double vision. Then I have more stigmatism then originally thought which is also causing the double vision. The main cause is muscle related, once again the same thing that's causing most of everything else. Well, UCSF still can't find the underlining cause of all these new disorders. The auto-immune is Lupus but the muscle disorder they still cant pinpoint and in the meantime they keep giving me band-aids to help and slow down the progression or damage. The special glass's they made did help but only on one side so I have to go back so they can adjust them and believe me they weren't cheap. Last week I had 2 long and hard heart tests along with a 48 hour heart monitor I had to wear. My follow-up appointment got pushed back till Feb so I wont find out till then the results, yes Feb 2010. That's one thing about UCSF, it takes a long time to get an appointment due to each doctor is only there 1 day a week. One of the test they injected something to speed up my heart while doing an ultrasound and yep, I got chest pains which isn't a good sign. During the test though it seemed they couldn't see what was causing the pain. I have a feeling it's going to be my heart muscles, my gut has been right with everything else. That and my last 2 EC G'S showed problems with the muscles but not severe enough to be conclusive on what was the cause. My mouth isn't getting any better, if anything it's getting worse. It's so dry any sugar or acid is attacking my teeth and causing cavities for the first time in my life. Now I'm on 2 special toothpastes and 3 mouthwash's none that help the dryness but will provide my teeth fluoride, etc. My neck is not in a 24/7 flare-up, the glands are sore everyday which needs to be checked out soon. The glands isn't a muscle problem so I really need to start following up on that. It's hard keeping up with everything since so much is going on at once and so many doctors are involved. The times when I have a week off from going to UCSF are the best, I love the breaks. They are very draining on both me and my folks who drive me to each visit. Thank god for them....they are my support system and will do anything they can. I have to say though I've never been to a hospital or Dr's that had as nice as people as UCSF's. Every department, nurse, student in training and doctor have been very nice and supportive, down to the x-ray tech and helpers. I think that's why I'm doing so good mentally, I finally have the support from a huge team of doctors. Someone asked me if they are giving me "hope" and that's why I'm doing good mentally & I said no but they give me "support" and "they care". All of them say they wont give up till they find out whats wrong but I know they might not or when they do I'm still going to be stuck with the body I have. I'm at peace with that now and that's a wonderful gift. Yes i wish it could have stopped with the nerve & joint damage and not go into the rest of the body but life is too short for what ifs. I Look forward to meeting someone someday when I have time, lol and living life to the fullest that I can. I've been to children's hospital and seen much worse, little kids dying or struggling with cancer. That's a picture I'll never forget nor get out of my head nor do I want to. It's a reminder that things could be worse and I'd live like this if it meant saving just one of them.

Finally, more of my past...

WHEN IT ALL STARTED, PAST INFO...Here is some info about my past. Besides being born with my bad knees and having many surgery's on them and my thyroid by 18 I was also told when I was 20 I had some kind of auto Immune disorder. Way back then a specialist saw it but told me it would take years for it to manifest enough for it to be diagnosed. So I continued on with my life, I was a workaholic, worked out at the gym as much as I could (got pretty buffed), in and out of relations, met my 1 true love but had to say goodbye, basically lived life. I was very attractive and turned heads where ever I went, was good with money and was a very strong independent woman.I got sober at a young age, 24 but had started drinking when I was 12. I had known for a few years before getting sober that I had a problem but the bottle had it's hold over me plus it helped with my 24/7 pain. The day came when even after getting a DUI I was drinking and driving again, it was then a friend asked if I was ready to get help. That was May 7th 1989 & the last time I had a drink. I've been blessed that through out these hardest years of my life that I've had no desire to drink or mis-use any medications my doctors have or have tried me on.Stopping drinking was the easy part, the first few years of being sober is the hardest, you have to find out who you are inside. Many go through phases and finding other "things" to fix us but eventually you will be left with yourself. I purposely spent many years single finding out who I was and it happened around the same time I got carpel Tunnel in both hands. So not only was I working on "me" I couldnt go to work either for the next year I had 5 failed surgery's on my hands. No work, no gym just me.....and it was the best thing that could have happened. I went nto a deep depression, got help and spent time with a therapist that helped me dig through the layers of protection I kept around myself my whole life.I also had to learn it was O.K. to take pain medication while being sober. My first few years I wouldnt touch it and a friend who had 20 years sober told me I needed to work on it and listenn to the doctors. a few years later I couldnt handle the physical pain anymore and god bless to this day I havent had problems with pain medications and abusing them. If anything I dont take the amount I'm allowed. Very few people can do this, can take meds and not start drinking and using again. Mine goes right to the pain, I dont feel a "mental" high and only take enough to keep the edge off.After the CTS surgery's the nerve damage in my hands slowly progressed to my elbows and shoulders and had 2-3 failed surgerys on my shoulder. so as you can see, it keeps progessing and getting worse no matter what part of my body. Around a few years aftyer my hands I was walking and bang my right ankle started killing me. I figured I sprained it but after a month it didnt go away. Two months later the same thing happened to the left and after going to the doctors I found out both ankles had nerve damage. The doctors at this time thought maybe I had fibromyalgia but one doctor didnt beleive so nor did I anymore. FM doesnt cause the nerve damage my body was creating. More coming soon, still need to spell check, sorry:)