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When life gives you lemons  When life gives you lemons So folks this month is Scleroderma awareness month..I've been pretty silent about it mostly because I'm angry at this disease right now because of what it has taken from me. But I guess I should share my story so everyone is aware that there are many of us out here who look "normal" who fight an invisible battle that usually only our family and close friends get to witness...so here goes. For a few years I had noticed lesions on my fingertips and red blotches on my hands that I attributed to my job and my age..brushed it off as nothing. Then something devastating happened in my life that I believe was the catalyst to the disease manifesting itself in full force six months later. I wasnt able to stand for a long time , hold my arms up ,grasp objects, my muscles were so weak and the fatigue, oh the fatigue was devastating. I told the doctor I have 4 kids..I'm best friends with tired but this is on another level. My hands were swollen, hot to the touch, extremely painful. They ran some tests and urgently sent me to a rheumatologist that 2 months later confirmed a diagnosis of Scleroderma in September of 2017.. I carry anti RP-11 antibodies..Scleroderma is an autoimmune rheumatic connective tissue disease that causes your body to overproduce collagen..it was almost a relief...to know I hadn't been losing my mind. They just sent me home with some medication and a diagnosis, so I did my research..a lot of research. For 2 years the cycle of pain and depression sent me into a tailspin of suicidal thoughts and doubts about having any sort of real existence after this. Scleroderma is the most deadly rheumatic disease I would read. I have small and teenage children that I want to live for..what will I miss? Will I go into renal crisis and die tomorrow(common for my antibody) Will it be 10 years? 25 ? How long do I have ? Will I even be able to enjoy it? Will I get Scleroderma face and hands(shallow but valid concern) I had BIG plans for all the adventures my body would take me on. Those dreams were shattered. What do i have left? It took 2 years to come out of that and sometimes it still sneaks it's way back in. My life has definitely changed. I'm a capricorn and if you know me personally a go getter. Maybe not professionally but I pride myself in sleeping little and working a lot... Getting things done, being stronger than most women physically, working from sun up to sun down and not being lazy. So I have had to mourn the death of what I thought my life was going to be like. I live on a daily with constant pain all over my body, it even hurts to brush my girls hair..I have to take breaks, repetitious movements are a no go, I'm exhausted every day all day, I get sick all the time, the skin on my hands and arms is starting to tighten, wounds don't heal there, I feel like I'm at the doctor every week, I get random fevers for no reason, I have chest pains every day, the lesions on my fingers are Raynauds ulcers (eventually I will lose parts of my fingers to amputation), the red blotches are called telengiacstasias (dilated blood vessels)have moved to my lips as well, I have trouble swallowing pills and suffer from IBS as well now. I have always what they call sausage fingers and my hands hurt constantly, no more beautiful nails :(, I cant hold my 5 and 6yr old babies for longer than a few seconds and I cant always run and play with them like I would like to do and did I mention the muscle weakness and oh the FATIGUE..Scleroderma causes hardening of the skin and also the fibrosis of lungs, heart and kidneys and now I'm in the middle of an overlap diagnosis (more than one rheumatic connective tissue disease, fairly common) I dont say all this to make you feel sorry for me. I say all this so you know. I am not the only one. Scleroderma is rare but there are approximately 200,000 of us in this country and millions with similar diseases that are just as devastating begging for research, begging for a cure, begging for funding, begging for our lives back. These diseases are EXPENSIVE on us as individuals and families (1000's of dollars worth of testing a year to monitor lungs, heart, and kidneys for fibrosis.)They are expensively draining our medical system and receive less funding for research because they are rare. So now that you know someone..spread awareness, buy a shirt, make a donation, let someone cry on your shoulder, go help accomplish a task, just listen, share this. There are many things you can do to spread awareness and help find a cure. Thanks for listening to my long winded story and I wish you all the best of health and happiness! Here are some links... |
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