I noticed that the middle finger on my right hand had turned so dark in color that it was practically black and I actually thought there was ink on it and tried to wash it off. Oh, if only the remedy had been so easy. After a few days, my finger had not improved and seemed to be getting worse. My mother dragged me to an urgent care clinic where they were mostly puzzled but suggested something called Raynaud's Phenomenon and suggested I visit my primary care physician. I made an appointment with the Physician's Assistant because I could get in much sooner. She was even more bewildered than the clinic and referred me to a rheumatologist who had a six month waiting list.
I was confused and uninformed so I began my online journey into researching autoimmune diseases. My mother got me into another PCP who surprisingly got me into a wonderful rheumatologist within a week. After multiple blood tests, he determined that I have systemic scleroderma and because of that I had a secondary condition: Raynaud's Phenomenon.
The whole process of finding out what was wrong with me took many months, in fact it took so long that I was able to informally diagnose myself thanks to the internet. By the time I was diagnosed, winter was in full effect and being quite brutal as winters usually are in my home of West Virginia. I had ulcers so large they covered the entire tip of 4 fingers. I was put on different medications for pain, blood flow, and circulation. Eventually as spring came and the snow melted my hands began to heal. I began to stop taking the medications and made my doctor appointments further apart. I healed so well I begin to consider myself in a sort of remission.
I have lifelong effects from that horrendous attack, such as the ulcer on my right index finger was so large that I lost the very tip of that finger. I still have the fingernail on it, but it is sloped and obviously shorter than the index finger on my left hand. I frequently get asked, "What's wrong with your finger?" which, at times, can be a huge blow to my confidence not to mention a huge pain in the neck to have to explain what happened or make something up on the spot.
I still had some pain and if I was cold life was hard but things had improved so much that I knew I could live through this. I was a long time smoker and I gave that up almost a year ago. I had been doing great except for the expected discolorations, numbness, and some pain when cold. Within the last six months, I have noticed some changes. I get very tired very easily and could sleep all day every day or at least feel that way sometimes. Even more recently, I have been having so much pain throughout my entire body, especially my hands and everything from my knees down, I just want be in bed all day and any movement hurts.
I have a full time job that I push myself through with a smile until I get home and go directly to bed where I try to sleep through the pain. I experience a great deal of depression with this and often find myself worrying that I will never get to do things like have a family because no one would ever want to start one with me as I apparently don't have the best genes and I'm not even sure if I could bring myself to put a child at risk of developing my condition.
When I think it has only been six years, I worry about how bad it will get when more years pass. It gets difficult relating to my peers at times because nobody really understands what I have and sometimes I feel like a big baby because I can't do the things they do. I can't go skiing or do anything where I get cold and it's too difficult to get most people to understand what I'm talking about when I try to explain my condition. Even my closest friends seem to get annoyed and are clueless as to why I can't stand around the camp fire in November and would rather socialize inside. Besides all that, why should I have to explain my condition to everyone who comes around?
I've always tried to come off as a very strong person and even though my stature is very small, I never want to seem weak but sometimes I really am. I decided to share my story because I needed to explain my feelings and I can't really tell many people in my life how I really feel because I don't want sympathy I just want to be normal.
Email: [email protected]
Story posted 12-14-10 SLE
Story Artist: Shelley Ensz
Causes of Scleroderma
Digital Ulcer Stories
Emotional Adjustment: Coping
Emotional Adjustment Stories
Limited Systemic Scleroderma Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
Reading Voices of Scleroderma Books: Diana Kramer.
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