Lupus has mixed with severe allergies to such an extent I am now homebound. I am mobile but unable to attend any live events with 4 or more people, including malls, church, and live events. Since I can't go to them I have them come to me with live videotapes, live cassettes on my stereo. I love getting e-mail, but I am unable to attend lupus groups of any kind including chat groups on-line. I first began showing symptoms when I was 9, and I am now 43. My symptoms include arthirtic involvement in all joints, I have soft bones, stomach problems, and side-effects from prednisone, including cataracts. The secondary conditions I suffer with are the evironmental illness which causes me to have such severe reactions, multiple chemical sensitivities, tremors or seziures related to steriods, fibromyalgia, and CFS (Chronic Fatigue Syndrome). It took two years of doctor visits and tests before I was diagnosed with SLE. At the time I was finally diagnosed, the only symptoms I had were black and blue marks and extreme fatigue. Prior to that time, I had been treated like a hypochondriac, especially with tremors and seizures which has lasted 14 years. I've been told that I was just trying to get more attention, and yet, feeling the way I do, I wouldn't wish it on my worst enemy, let alone doctors or family members. Right now, the medications I am taking are Propulsid, Prednisone, Imuran, Plaquenil, Naprosayn, Prilosec, Tyelonol #3, and Vicroprofen. Prednisone and pain killers don't seem to be helping much. The Propulsid and Prilosec help me to be better able to keep food down. The Plaquenil doesn't seem to be helping either. As for my mental and emotional well-being, I try to take the negative and positive aspects of all this and express it thru dj tapes or artwork. Creative writing helps me also. The one thing I would like to express to my family is that you can't see what I feel on the inside, only the outside, so please stop asking me to explain something you'll never understand.
I first began showing symptoms when I was 9, and I am now 43. My symptoms include arthirtic involvement in all joints, I have soft bones, stomach problems, and side-effects from prednisone, including cataracts. The secondary conditions I suffer with are the evironmental illness which causes me to have such severe reactions, multiple chemical sensitivities, tremors or seziures related to steriods, fibromyalgia, and CFS (Chronic Fatigue Syndrome).
It took two years of doctor visits and tests before I was diagnosed with SLE. At the time I was finally diagnosed, the only symptoms I had were black and blue marks and extreme fatigue. Prior to that time, I had been treated like a hypochondriac, especially with tremors and seizures which has lasted 14 years. I've been told that I was just trying to get more attention, and yet, feeling the way I do, I wouldn't wish it on my worst enemy, let alone doctors or family members.
Right now, the medications I am taking are Propulsid, Prednisone, Imuran, Plaquenil, Naprosayn, Prilosec, Tyelonol #3, and Vicroprofen. Prednisone and pain killers don't seem to be helping much. The Propulsid and Prilosec help me to be better able to keep food down. The Plaquenil doesn't seem to be helping either. As for my mental and emotional well-being, I try to take the negative and positive aspects of all this and express it thru dj tapes or artwork. Creative writing helps me also. The one thing I would like to express to my family is that you can't see what I feel on the inside, only the outside, so please stop asking me to explain something you'll never understand.
David
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