Iâve discovered a little area of webiverse where mycosis fungoides people hang out and discuss their concerns. I was excited at first. Here I was, a stranger in a strange land, and I had found other inhabitants similarly stranded. Lurking on the site for a few weeks has taught me that I really donât have life all that bad. My world may be rocked, but existence goes on virtually unaffected. There are people out there disabled, disfigured, and even actively dying from this. I know none of them well enough to offer any comfort, and I feel that my relatively minor symptoms almost disqualify me from participating much there.
I have been contacted via email by a couple of people from there, but Iâm on guard. Iâve been burnt by friendly greetings from the web before, and I donât want that to happen again. Iâm more suspicious of friendly overtures from complete strangers than I used to be. Itâs a shame in a way, since Iâve made some good virtual friends. But Iâm too needy and too vulnerable right now.
Additionally, I donât know if I can really cope with others who are even needier and more vulnerable than I am. Iâve acquired more than a veneer of selfishness, a sort of âself-ish defenseâ. I keep to myself more than ever at work now, and am glad when I can come home and stay there. Thatâs probably what the tidying up this weekend was all about. Itâs more comfortable to be at home if Iâm not surrounded by messes accusing me of sloth and apathy.
Iâm suspicious not only of others, but my own body. Every rash is suspect now. The steroid cream I have is powerful, and causes a fair amount of stinging and burning. The skin where I use it regularly has greatly improved regarding the rash, but could hardly be said to look normal. Itâs thinner, almost paper-like in some areas, and sheds a fine dander on the inside of my clothes. Iâm constantly on the search for new patches, and agonize for way too long if a red spot is simply winter dryness or if it is a new outpost of abnormal T-cells. One gets treated with an oil based emollient, the other gets blasted with steroid. My butt is the most current site of ambiguousness, and I was forced to make The Prof check it out thoroughly last night. If there is anything more likely to kill off ardor than butt inspection, I donât know what it is. I have to admit, this is one indignity that did not occur to me until need actually arose for butt inspection.
Illness is not for the weak or the proud.