Andrea, here is a video that explains a bit about scleroderma. Im in the middle of the progression, I have whats called limited systemic scleroderma. Which is a long way of saying that the illness is killing me slowly, instead of fast. I know its really vain, but Im glad the worst part of the visible damage is in my hips, back, and trunk instead of my face. Its hard enough trying to overcome this damn thing without it making my face look even worse! I hope this helps explain it a little better...Ill try to find the one on Sjogrens that explains that. The most basic way I can explain it is that my body is attacking itself and hardening and shortening all of the connective tissue as it goes. Its ridiculously painful and energy draining. I try to act like everything is ok, but its really hard to do when it feels like your and and legs are being suffocated and your being stung by a hundred bees all while your bones grind together and every breath feels like someone is trying to shove their fingers through your ribs. Smiling becomes really hard and harder still when you have to face the damage the illness has done to your teeth. Im back on the chemo and the steroids. Please, pray that I get into one of the real clinics, where doctors actually know how to treat it. It looks like my best option is going to be full blown, wipe it my entire immune system radiation. Ive read a bit about it and some people were even able to go back to work! I would love to work again! :)
Posted on: Sat, 06 Dec 2014 06:21:22 +0000
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