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MistressMic's blog: "My life"

created on 01/19/2007  |  http://fubar.com/my-life/b46384
I have never ever lied about my illness - I had this posted once before and I will repost it - Tiger cleared it out when he cleared out all my blogs for me, but here it is again, I will state for the thousandth time - I DO NOT HAVE CANCER - FUCK I WISH I DID - IT HAS A CHANCE OF BEING CURED!!!!!!! I have what they call Scleroderma, only about 150,000 Americans have this disease - arent I lucky? I've always had to be different ;)) its an auto-immune disease of the connective tissue, is characterized by the formation of scar tissue in the skin and organs of the body ( at some point the organs shall need to be replaced but I will worry about that when that time comes) it leads to thickness and firmness of involved areas. It involves symmetric thickening of skin of the extremities, face, trunk (chest, back, abdomen, or flanks) which can rapidly progress to hardening after an early inflammatory phase. Organ disease can occur early on and be serious. Organs affected include the esophagus, lungs with scarring of the heart, and kidneys I have the most involved kinda of Scleroderma which is called CREST characterized by the following letters CREST C - Calcinosis, refers to the formation of tiny deposits of calcium in the skin. This is seen as hard whitish areas in the superficial skin, commonly overlying the elbows, knees, or fingers. These firm deposits can be tender, can become infected, and can fall off spontaneously or require surgical removal (im lucky here - not really hit by this yet ceptin the elbows and I persistently lotion well) R -.Raynaud's phenomenon which refers to the spasm of the tiny artery vessels supplying blood to the fingers, toes, nose, tongue, or ears. These areas turns blue, white, then red after exposure to extremes of cold, or even sometimes with extremes of heat or emotional upset - I can go into frostbite in mere minutes instead of hours like normal people. I had one nasty case of this on a finger this winter cuz I dug into a cooler for a mere minute and sent one finger into frostbite - which i almost lost before convincing my specialist that i needed antibiotics instead of the neosporin and bandaids that he told me to use over the phone lol. E - Esophagus disease in scleroderma is characterized by poorly functioning muscle of the lower 2/3 of the esophagus. This can lead to an abnormally wide esophagus which allows stomach acid to backflow into the esophagus to cause heartburn, inflammation, and potentially scarring. This can eventually lead to difficulty in passing food from the mouth through the esophagus into the stomach. - I just had surgery for this and a hernia attached to the esophagus S - Sclerodactyly refers to the localized thickening and tightness of the skin of the fingers or toes. This can give them a "shiny" and slightly puffy appearance. The tightness can cause severe limitation of motion of the fingers and toes. T - Telangiectasias are tiny red areas, frequently on the face, hands and in the mouth behind the lips. These areas blanch when they are pressed upon and represent dilated capillaries (thankfully this has not appeared to a significant degree on me yet - just on the hands and behind the lips) all hideable with a tan lol Along with it I have a major case of rhumatoid arthritis.... I battle all this with chemotherapy infusions (not the radiation part) I do it every six weeks - yes it makes me sick -yes I lose some of my hair ( my pics are recent and one of the reasons I post recent pics alot) and my hair turns white from the chemo - I also take daily chemo pills. Without the chemo or the steriods - my life would be crap - so I am thankful - I have tried to go without it - and my body paralyzes up on me - so I am whatyou call a chemo junkie - its something I will never be able to quit till the day I die. lol Other than this being a very painful illness - every bone and joint hurts in ur body and the skin is painful to the touch on most days - somedays it feels like ur walking on glass - its what they consider an invisble illness - unless of course you are unlucky enuf to receive alot of the external effects - the only external effects Ive really had are to the hands and I battle it daily with painful stretching exercises and lots of lotion. This summer I also found out that I have a clotting problem with the blood in my brain, 7 factors are clotting that are not supposed to be - Ive had two mild strokes already this year, and I am seeing a hematologist at the KU Cancer Center for this problem and there are investingating, perhaps thats where a supposed bestfriend gets confused when I tell her I am on my way to the cancer center. I was also diagnosed with Lupus this summer. I try not to complain, I take my illness and go on, I figure as long as I have one uncurable I might as well have the rest, perhaps it is saving someone else from having them. I have access to great drugs - I try not to take them ceptin on the worst of days because as most of you know I have three beautiful active teenage daughters who I have to keep up with and I lead a very active life myself and I refuse to be a zombie or to give into this disease. I am not posting this for sympathy or anything like that - in fact I refuse any - that just leads to self-pity and depression - I choose to ignore my disease as much as I can lol. I am only posting so that hopefully some of the questioning stops - and you also realize why sometimes I may not be online or why I may not respond to your emails right away even tho I have read them. All of my - cherry friends - are chosen very wisely - you brighten my days and my nights *wink* hehee jk ,..... but truly - ya'll give me the strength to see thru each and every day - thank you from the bottom of my heart. ~hugs&luvs~ Micshell
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