Hello everyone,
I almost feel foolish looking for a support group for this disease, at this point in my progression, but I'm scared. My symptoms don't compare in anyway to those that are described by some of you. You are all very courageous.
Perhaps I am one of the lucky ones, as I was diagnosed before this disease went too far. So do I even have it? I guess I won't know for sure until the disease progresses and a biopsy can be done to confirm it. My rheumotologist says we need to assume I have it based on my symptoms, blood work (sed rate, c-reactive protien, ANCA etc) and keep a watchful eye on its progression (monthly blood work and urine testing). I am finally down to 5mg of prednisone (after 8 months) but I still feel the fatigue and the exhaustion leaves me feeling inadequate. I have so much to do!! The aches and pains in my joints are still there, it is often difficult to even walk from one location to another. My inability to move is not just from my joints, it's from every part of my being.My breathing often becomes labored when I go up and down the stairs. It is so hard to understand. I also get shooting pains in my feet and hands but my doctor doesn't think it has to do with Wegeners. The bottoms of my feet hurt at times when I walk. Sometimes I think I am going crazy, like this is all in my head. What makes matters worse is that I am having a difficult time explaining this to my family. If I tell them I have "Iristis" (inflammation of the eye, which has subsided) or inflammation in my ears (with fluid and loss of hearing), they seem to understand, but the overall diagnoses of GPA is not one they are able to grasp. I am TIRED all the time! I have 6 grown children and 10 grandchildren. Several of my kids, don't see me as sick on the outside...so they think I am fine to ask for a lot of help with their kids. Don't get me wrong..I love my grand-kids ...they are everything to me, but it so hard to describe the way I feel to them and my own children. I pray I can stay ahead of this disease and never experience what some of you have gone through. I admire your willingness to share your journey and I would appreciate any support I can get from this group.
Warmly,
Terri
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