Day Eight- That sneaky Bastard

I couldn't have chocolate or peanuts when I was growing up because my hands would get a rash. It usually happened around Easter. Mommy use to get us chocolate bunnies and we had plenty of candy around. We also went to church dressed in our Easter finery and walk in the spring sun to church. Hummmm! The SUN! This went on for years the rash would come on my neck, under my boobs, even on my thighs. One summer when I was about 14 or 15 we went to the beach and I lay in the sun all day trying to get a deep tan. I broke out from head to toe. I had this little fine prickly heat looking rash. My skin was tender to the touch, swollen red but it didn't itch. I remember it vividly. We all assumed it was a heat rash and did nothing. When I got diagnosed and looked up the rashes. I saw the rash. I never had the malar rash but I had the "ick" as my brother use to call it I would have a rash on my hands moving up my arms, it was very peculiar that I only broke out during the summer.




I use to be tired all the time but I thought it was normal considering that I smoked the reefer all the time. I was a pothead; I woke up lighting a joint and went to sleep smoking a joint. So I always had the munchies, giggles and would always be ready to go to sleep.



I had this rash on my leg in the shin area, the dermatologist, gave me all these creams that weren't helping. Once I used fresh aloe on it and it cause pus to ooze out but not heal. Some of my Haitian employees believed someone had put voodoo on me and had their family send me stuff to fight the voodoo. Finally the dermatologist gave me a cream after several attempts failed and said, "If this doesn't work I'll do a biopsy." The cream worked. It had steroids in it. It took several years before it cleared up I'll say almost 10 years. The bones in my shins are painful to the touch still today.



Another incident was when I was working on-call for the home care agency during a snow storm that crippled NYC, the home attendants were calling because they couldn't get to work. Clients were calling because they didn't have anyone there to help them. Not to mentioning families that couldn't get to their love ones that the agency was responsible for. I was stressed; I couldn't get to all the calls. The boss was calling me, the other coordinators were calling and helping as much as they could but it was my responsibility to ensure that everyone was taken care of. The next day I broke out all over my body, even on the bottom of my feet and the palms of my hands.



I went to the doctor and it was the antibodies I was taking.



My hands always swelled and my ankles and knees always hurt. I blamed it all on playing handball as a teenager. The doctors just chalked it up to arthritis. When my mother died I moved into her house and became a patient of her doctor. I told him I suspected I had lupus, he gave me a complete blood work up and said no signs of Lupus but I was positive for syphilis and they did this test to confirm and it was negative. This was a false positive result.



Now check this out I was about 33/34 I got sick it was an ear infection, I was given antibiotics that contained sulfa. I was hospitalized. There are 11 marks to be diagnosed with lupus. I had rashes my whole life, photosensitivity (from the sun); I had the false positive syphilis results, allergic to sulfa. I was always tired and would sometimes spend the whole weekend sleeping, but I usually worked two jobs. I also had joints swelling and pain. I knew I had lupus but the doctors couldn’t diagnosis it.



Four years ago I had a hysterectomy; everyone told me I was going to feel so much better after. I waited to feel this good feeling that never came. I had insurance, I was losing weight but I wasn’t complaining about that. I told the doctor I felt icky, just tired weak. He told me to exercise. When my blood work came back he said my triglycerides were high. But didn’t run any test or anything else. He told me to take vitamins. Damn!!! I was in a flare at that time, had I started on the steroids then maybe two years later my lungs wouldn’t have been damaged by lupus.



I wish I knew what all they markers were. You see I saw different doctors over the course of my life and the symptoms I was having were put together. I was never referred to a Rheumatologist, hell I didn’t know what a Rheumatologist was. This campaign to make people aware is good. I may have been able to get help earlier. What’s done is done.