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My Scleroderma Story

My Scleroderma Story
My Scleroderma Story

Went to the doctor in October 2011 because my hands hurt...was diagnosed and being treated for occupational carpel tunnel syndrome. It took another 11 months before I was officially diagnosed with scleroderma.

I still remember that day I went to the doctor. My hands just hurt all over in general. They had been hurting for two weeks prior to that appointment as well as my feet swelling and I literally felt like crap all the time. After giving a little blood and urine, found out I was type 2 diabetic and had high blood pressure. I was surprised, but not surprised. I had been overweight since taking Depo Provero birth control shots in 1994. Then, I was an average 135 pounds, 5'2". At this doctor's appointment, I weighed 237 pounds. After beginning therapy for carpel tunnel syndrome, something still did not feel right. Over the next 10 months, I began eating better and making better food choices. I did not exercise because I literally had no energy to do anything.

In July 2012, I visited my GP once again. Up until that appointment, I had noticed the skin on my legs began to feel tight, as well as the skin on my hands and forearms. It was that visit, that word changed my life. It took 2 months for me to get a rheumatologist appointment. It was then I was officially diagnosed. I went through a 2 month depression after that. I didn't want to do anything but sit there and let it just happen. My first mistake was going straight to the internet to look up pictures. Scared the living heck out of me. I mean, who looks forward to looking like a living mummy and having all these problems? I certainly did not. It took me reading another person's testimonial to tell myself to snap out of it and that I needed to continue doing the things that gave me joy, even if I had to modify them or it took me longer.

At that point, I decided to put my big girl panties on and decide to live with scleroderma and not let it define me. I'll be the first to admit, you can live with this and not let it get the best of you, although oftentimes it's hard. I have systemic scleroderma and during the time I was diagnosed with carpel tunnel until the official diagnosis, I had all sorts of things happening to me. I was diagnosed as pre-menopausal, even though I was 39. I had a couple of trips to the gastroenterologist because I knew being constipated like this for months was not normal. I now take Linzess to help me "go potty". I am happy to say, that to this date, I have lost 77 pounds and feel much better, despite my scleroderma. All PFTs, liver and heart tests/scans I have had since October 2011 have all returned normal and negative for any scleroderma-related issues. It's encouraging.

I have been in hand therapy for the last 3 weeks and progress is also encouraging. What was once uncomfortable for me I realize now is helping me to stretch the tissues around my fingers. I do take a yoga class, although my warrior poses are no where near what your arms are supposed to look like and downward dog is now downright impossible!


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