Wings ஐﻬ

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Comment by Kathy on August 9, 2009 at 11:40am

This group is for those who have been diagnosed for awhile that can offer help & support with their knowledge to the newbies (Cocoons)

Comment by Kasha Deese on July 29, 2009 at 7:13am

My story is probably no different than others out there… I made a major decision to move my so n and myself down to South Florida from Ohio. I was transferred through my company; my parents lived down here, PERFECT…. I don’t know if it was the stress of the move, environment factors, or the fact that I had a car crash a couple of years prior to the move (my car flipped over) or what, but months later after I moved and started working at my new job, I started noticing that my fingers would turn a strange color only at work and be numb and cold. Most people said it was poor circulation so I just went a long with that theory. Then my fingers started to discolor and were getting lighter… I joked that it was the Michael Jackson disease; once again I let it go. And then I started having joint pain and fatigue that was unreal, but I shrugged that off and figured it was because I had started a new workout plan and my body just hadn’t adjusted to it… wrong wrong wrong, fast forward a little over a year later and I start working for another company down here and was complaining to a girl about things that were going on with me… and she asked me if I had ever been tested for lupus, I explained to her that my aunt had been diagnosed years ago… but I couldn’t have the same thing she has…my co-worker, now friend convinced me to see a doctor and after that appointment, my life has never been the same. I was tested and all the markers pointed to Lupus or as my Rheumatologist liked to say lupus like. She first diagnosed me as UCTD and then about a year later when I was having so many problems with my blood platelets finally broke down and said Lupus. I went from 2006-2009 on plaquenil, Rituxan, prednisone, etc… and then May 2009 was retested because I started going to another Rheumatologist, because my old Rheumy didn’t accept my insurance any longer, and he said MCTD because my blood work came back with the U1-RNP anti-body , but my ANA’s were still very high.

I thank God none of my major organs have been affected. I had to have my gall bladder removed in 2006 because of gall bladder disease. I suspect lupus had something to with it because it was all of the sudden, no warning signs or anything. My major issues right now are keeping my blood platelets up, joint pain, fatigue (the sun zaps me which I hate because I live in a beautiful state), major Raynauds (I keep a heater at my desk) and frequent headaches.

Even though this disease totally sucks, it’s nice to know that there are others that can relate to me. I feel like this year, I have taken more control over the disease. I eat right (no fast food), drink lots of water (no more caffeine), exercise, and rest when I need to rest. I am a single mother of a teenager so life can get pretty hectic. I have refused to let this disease take over my life try to stay as positive with life as I can. We only get one chance so why not make the most of it.