I was diagnosed with hepatitis B in 1989, and while recovering from that, I started having symptoms of an autoimmune disease. I was able to return to work for nine months before the symptoms rendered me unable to work any more. Based upon my symptoms, my PCP has diagnosed me with Lupus, while my anal-retentive, test-oriented rheumatologist has diagnosed me with "Undiferentiated Autoimmune Disease", or UCD (Undifferentiated Connective Tissue Disease), which he hopes will resolve itself into a specific, positive-test disease someday. SSD, (Social Security Disability) in their infinite wisdom, has decided that I have mixed connective tissue disease; as long as they continue to send the much needed checks I don't care what they call it. My problem, besides the usual overwhelming fatigue, pain and cognitive dysfunction, is a complete inability to tolerate any type of UV exposure, as well as visible blue and violet light. My home is a cave, and I can venture outside only when every square inch of my body is covered with Class II Medical Device clothing, including masks, gloves, etc. And then, I can only remain outside for 15 to 60 minutes, depending upon the source of the UVs. Exposure causes the usual malar rash, followed by fatigue, pain, brain fog, and even flare-ups. It took my rheumy 2 years to believe this. In order to sit in front of this computer monitor -- which is filtered -- I must mask myself completely or suffer burns and flare up, because of the blue-violet range of the spectrum. I suppose I mostly miss the social contact of working and going out and about, and of course I miss my brain. LOL! I joined Mensa shortly before becoming ill, and I seriously doubt that I could even pass the test now. I've about exceeded my time limit in front of this wonderful window to the world, so I must cut this short. Thank you for letting me share my story. Gayla, I just found your site, quite by accident. It is absolutely fabulous. Incredible. Unique. Fascinating. I never knew things like this existed. Totally unreal, outside my realm of experience. I have to get away from the computer because the monitor fries my face, but I also have to keep coming back, again and again, to IssyMissy's House of Fine Repute. I am speechless.
My problem, besides the usual overwhelming fatigue, pain and cognitive dysfunction, is a complete inability to tolerate any type of UV exposure, as well as visible blue and violet light. My home is a cave, and I can venture outside only when every square inch of my body is covered with Class II Medical Device clothing, including masks, gloves, etc. And then, I can only remain outside for 15 to 60 minutes, depending upon the source of the UVs. Exposure causes the usual malar rash, followed by fatigue, pain, brain fog, and even flare-ups. It took my rheumy 2 years to believe this. In order to sit in front of this computer monitor -- which is filtered -- I must mask myself completely or suffer burns and flare up, because of the blue-violet range of the spectrum. I suppose I mostly miss the social contact of working and going out and about, and of course I miss my brain. LOL! I joined Mensa shortly before becoming ill, and I seriously doubt that I could even pass the test now.
I've about exceeded my time limit in front of this wonderful window to the world, so I must cut this short. Thank you for letting me share my story.
Gayla, I just found your site, quite by accident. It is absolutely fabulous. Incredible. Unique. Fascinating. I never knew things like this existed. Totally unreal, outside my realm of experience. I have to get away from the computer because the monitor fries my face, but I also have to keep coming back, again and again, to IssyMissy's House of Fine Repute. I am speechless.
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