Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 Martha, She must have really threatened you with the pain meds. Great to see a post and to really hear how you are doing. Thanks for the wav of Commanche. Now when I get homesick for chat I can go to listen to him. Take care and keep up the good work! Lots of love Glenda Is this long enough Heidi? Also for the newbies Ihave the world's loudest cat. You can hear him at:http://groups.yahoo.com/group/Rpolychondritis/files/Scroll down there are a bunch of pictures people haveposted. Ignore them you want to hear the cat. Comanche.wav is the file you want it is sound file ofComanche saying hello.Martha ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 MARTHA, Thanks for the history. I can relate to some of it with my own history. I started getting " strange " symptoms in Sept. 2000 and after a rheumatologist and pulmonologist suspected RP I was referred to Mayo (3/2001) where I was diagnosed with RP and overlapping Wegener's Granulomatosis. Seems to be a pretty rare combo as they have retested three times to confirm and tell me there are only about 15 confirmed cases of both diseases in one patient that they are aware of. I'm on Cytoxan, Bactrim, and of course, Prednisone. But am tapering the pred and only take 7.5 mg/day. Soon to be 5 mg. Such a relief--that stuff really messes with my head! But, I just wanted to say that I firmly believe in your regimen of exercise. I'm up to 3.1 miles on the treadmill every day and also alternate upper body exercises (w/weights) with lower body workouts. Since I am now a disabled retiree, daily exercise is my job, and it's much, much harder than going to work ever was. However, my susceptibility to infections seems to be nil (so far) due to what I call the " artificial fever " theory. That is, I get so hot and sweaty for 1 1/2 hrs each day working out that no bacteria can survive! I have trach & bronchomalasia and the last PFT showed an FEV1 of 21% (of predicted). Keeps getter lower each time I'm tested. Maybe I should just stop getting tested! But, other than not being able to breath very well, I'm in very good health. I have a few aches and pains but have had only one bad flare-up and one respiratory distress episode. Certainly don't want another one of those! I have been measured for a stent at Mayo and a whopper of a stent has been made for me and sits on a shelf waiting until I really need it. I have mixed feelings about that because of the complications that can come with a stent. But there are days when I'd really like more air! updat on me > Heidi has threatened me to send an update so hear it > is. > > For the newbies, here is my history. Summer of '99 I > started with ear & nose flares, was finally diagnosed > in early 2000. I went to see Dr. Trentham in May of > 2000, and he confirmed what I suspected that the > flares were being caused or worsened by another drug I > was on called Zoladex, a hormonal system suppressant I > was taking for a history of breast cancer. It was also > probably suppressing the natural adrenaline in my body > along with the sex hormones. > > Dr. Trentham advised me to stop the Zoladex, put me on > colchicine and Plaquenil, and I started a long slow > taper on the Pred. Since stopping the Zoladex my > flare s have been very few and far between, and very > mild. I've been off Pred since Summer 2001, with > again only 1 mild flare since. I didn't even bother > with the pred it was gone in a day. > > I think I have a touch of Fibromyalgia with this, > especially in my legs butt & hips. For this I have > been starting a vigorous exercise program to > strengthen these muscles (jogging & bicycling) and > this really seems to help. I think the years of pred > did seem to weaken all those muscles, and the extra > pounds sure don't help either. > > This is the first winter in a long time I have not had > a cold or flu every other week, I don't know if it's > getting off the pred or finally recovering from the > chemo, or the exercise program, or what, but it sure > has been nice. I've been very sleepy, my rheumy > thinks I have " atypical depression " . I think it's > just hibernation reflex. Maybe all the sleep is > keeping me from getting colds and such. > > Is this long enough Heidi? Also for the newbies I > have the world's loudest cat. You can hear him at: > > http://groups.yahoo.com/group/Rpolychondritis/files/ > > Scroll down there are a bunch of pictures people have > posted. Ignore them you want to hear the cat. > Comanche.wav is the file you want it is sound file of > Comanche saying hello. > > Martha > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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