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Mar 08, 2010, 12:44 AM
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Member Since: Aug 2009
Location: Fringes of the bell-shaped curve
Posts: 779
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   Hi (((((paddy))))). I'm sorry that you're having to deal with HIV. I don't have HIV, but I do have a hyperactive immune-system disorder (ISD) that requires constant maintenance, plus Major Depressive Disorder, PTSD, and chronic pain.
I have had a number of Stevens-Johnson Syndrome (SJS) allergic reactions in the past to medications and other chemical and environmental substances. I am now allergic to light, especially sunlight, fluorescent lights, television and computer screens, as well as heat - if I get too warm I break out in hives inside and out, so I have to stay confined in a very cold and dimly-lit apartment about 99.9% of the time. Needless to say, this puts quite a damper on socializing. I have had to live this way for the past 11 years, in part due to my abusive family members' interference in my healthcare, so I understand what it's like to be isolated and without emotional support.
I take at least 400mg of Benadryl and 300mg of ranitidine daily to suppress my immune system even in my cold, dark cave, otherwise I break out in hives inside and out, my skin sloughs off, and I even bleed internally. Exposure to antibiotics, pain meds, anesthetics, or other chemical and environmental substances can trigger a fatal allergic reaction within moments. So, I can't have surgery for any reason, nor can I take meds to help me manage my depression, and I'm pretty much limited to taking Tylenol for pain, etc., etc.
I have found that most people do not understand my hypersensitivities and tend to shun me assuming that I am a liar, a hypochondriac, and/or a lunatic - so I'm well acquainted with being stigmatized. There is no cure for my ISD - in fact, the doctors don't even know what to call it - chronic SJS maybe - because most people don't survive long enough for them to know precisely how the body is affected or how to manage and control the hypersensitivities. But, I worked in the medical field for many years and learned a great deal about how the body works, paid attention to what my allergists taught me and how they treated my reactions over the years, and read everything I could find about similar immune-system disorders; because of this knowledge, I have survived more times than I should have. Besides, I'm just too stubborn to go quietly or easily.
Well, those are my "credentials;" so if you think I can empathize and support you in any way, paddy, please don't hesitate to let me know - I'll be glad to lend an ear and help if I can. lynn09
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"I walked a mile with Pleasure; she chattered all the way, But left me none the wiser for all she had to say. I walked a mile with Sorrow and ne'er a word said she; But oh, the things I learned from her when Sorrow walked with me!"
(Robert Browning Hamilton; "Along The Road")
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