Tuesday, November 17, 2009
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.