I have had lupus for 20 years now. I had Discoid Lupus, which affects only the skin, until last year, in 1998. I now have Systemic Lupus also. My symptoms are joint pain and swelling, fatigue, mouth sores, and skin rashes. I am taking Plaquenil which has been effective for the hair loss and joint swelling, but the joint pain has gotten worse. In the beginning, it took about a year of symptoms before I was diagnosed. It was finally discovered that my skin rashes were Discoid lesions, brought on by sun-exposure. Through all these years, I have felt that some have the perception that I am just a hypochondriac, and I pretty much don't mention anything about my illness anymore. I really don't have the support of my family in this, and I haven't felt that the physicians I have seen have really been very knowledgable about lupus. I have pushed it to the back of my mind, thinking it will eventually go away. I am in pain every day, yet I don't want to be a burden to anyone and I certainly don't want sympathy.
In the beginning, it took about a year of symptoms before I was diagnosed. It was finally discovered that my skin rashes were Discoid lesions, brought on by sun-exposure. Through all these years, I have felt that some have the perception that I am just a hypochondriac, and I pretty much don't mention anything about my illness anymore. I really don't have the support of my family in this, and I haven't felt that the physicians I have seen have really been very knowledgable about lupus. I have pushed it to the back of my mind, thinking it will eventually go away. I am in pain every day, yet I don't want to be a burden to anyone and I certainly don't want sympathy.
Kendra
In the beginning, it took about a year before I was diagnosed with lupus. I had a few months of being quite ill with various complaints and happened to be working in an NIH Clinical Research Center in Boston. One of the physicians tested me for a variety of disorders and Lupus was one of them. It has now been 23 years. My symptoms are fatigue, sleeping difficulties, and some depression. I also have the Lupus Anticoagulant Syndrome and have had some blood clots in relation, as well as having Rheumatoid Arthritis. Prednisone and Imuran are the "major" Lupus medications. These keep it at bay, but there is very little "wiggle room". I have been on Prednisone for the entire 23 years, and am now experiencing the side-effects associated with it. Dealing with lupus, for me, means taking things one day at a time. On the days I am on the pity-pot, God puts something in front of me to make me realize I am better off than many others out there. I know my limitations and if I listen to my body I do well. If I don't, then I have no one to blame but myself. My friends and family have seem me through the bad times, and I also have support from my local lupus chapter. I am beyond the point of trying to do what everyone else does. If it is going to jeopardize my health I simply don't do it. The thing I would most like my family to understand is that I just need them to be there for me, and realize that if I say I can't do something, I honestly "can't." Please don't get offended and think that I just don't want to be involved, and enjoy the times I feel great and can participate.
Dealing with lupus, for me, means taking things one day at a time. On the days I am on the pity-pot, God puts something in front of me to make me realize I am better off than many others out there. I know my limitations and if I listen to my body I do well. If I don't, then I have no one to blame but myself. My friends and family have seem me through the bad times, and I also have support from my local lupus chapter. I am beyond the point of trying to do what everyone else does. If it is going to jeopardize my health I simply don't do it.
The thing I would most like my family to understand is that I just need them to be there for me, and realize that if I say I can't do something, I honestly "can't." Please don't get offended and think that I just don't want to be involved, and enjoy the times I feel great and can participate.
Kathy
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