Quote:
Originally Posted by lynn09
   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 |
Dearest (((((Lynn09))))
Your "Credentials" more than fit the mark and I think you understand very clearly the challenges involved in an immune-system disorder. It does seem unfair though that you are challenged like this through no fault of your own whereas my disorder is self imposed and quite cavalier as a good friend correctly pointed out to me. My mental health status is Bi Polar rapid cycling, Borderline personality disorder, PTSD etc. etc. To be honest with you at this stage I am passed feeling sorry for myself, that is defeatist. I dont look for sympathy from people I just as you say look for empathy and understanding. My greatest challenge is medicaton compliance at the moment, when I fluctuate in mood so much my medication schedule goes out the window and I forget or I dont remember whether or when I have taken my meds. I find when I am depressed to be the worst stage as I just dont care somedays and then I panic when I realise what I have done. My CD4 and Viral Load are like yoyo's and God help my medical team they really have their challenge set out for them. Recently I am getting these 48 hour flu's when my temperature soars to 104 and I am exhausted and nauseated. If I am in a normal of hypomanic mood I can manage them and get on with it, but godforbid I am depressed then I really just feel what is the point. Other things are of course the toxicity of the meds and keeping them down, just there is little I can do about that, they are my life line.
What I am saying really is that mental health disorders and this disorder dont mix very well. Like you I wont give in, but sometimes that line is very thin and I need a little reminder that life is worth it after all and it generally is. When I meet someone like you I am dwarfed into feeling my complaints are miniscule in comparison. But it is the constant threat and the constant worry of a fever or a cough or a rash that we live under that I think you will understand.
You take good care and we should check in regularly with each other by PM to see how we are doing, it is sad but good to know if you understand what I mean that someone out there knows.