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My Scleroderma Diagnosis Story

barefut

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Not long after my first son was born I started having a lot of unexplained muscle pain and fatigue. The year was 1997. Soon, my hair started falling out - by the hand fulls. Not in clumps but overall thinning, at an alarming rate. I went to a dermatologist and he said that since I was nursing it was probably a lack of vitamin K. So I took vitamin K.


I was having lower back pain and since I had been diagnosed with a bulging disc from a work related injury when I was 5 months pregnant, I went to a back pain specialist. He said since I was a new mom and carrying around a 1 year old, that I was probably just stressed, overweight and out of shape.


After years of carefully taking note of my symptoms, and seeing people more overweight than I was able to move more freely and without pain, I went to my family physician for an explanation of my pain and fatigue. Again I was told I was stressed, overweight, and out of shape. I kept going back with every new symptom and finally got blood tests that resulted in a positive ANA indicative of an autoimmune disease. I was told I had "probable lupus".


After my fingers started going cold, I went back and was told I had "Buerger's disease" most commonly found among "Middle Eastern men who are chain smokers". My doctor was tired of dealing with me and was making stuff up at that point. Apparently he never heard of Raynauds being related to autoimmune disease and the possibility of scleroderma - he probably had never heard of scleroderma, yet he was content to look up "Buerger's disease" right in front of me and diagnose me with that.


The next time I went back to him, I mentioned lupus and he said, "Who told you you have lupus?" and he called me a hypochondriac. That's when I asked a different doctor if he could see me. He was the doctor who delivered my second son. But I was told he was not taking new patients. I told the receptionist that I was desperate and that I was technically not a new patient since he delivered my son and they agreed to take me.


After telling him my symptoms and how long I had been experiencing them, he referred me to Dr. Buckner at Virginia Mason. He knew then what Dr Buckner confirmed with a simple examination of my nailfolds and the scl70 antibody blood test. I had diffuse systemic scleroderma. After years of pain, fatigue and humiliation, I was finally diagnosed. It was both a relief and a nightmare. The date was January 2, 2006.


My marriage had been on the rocks for years and in March the same year, my husband left. Actually a blessing. That same month both my boys got chicken pox. At the same time I was having trouble breathing. I couldn't even read them a bedtime story due to shortness of breath and chest pain. I called Virginia Mason and the ER doctor on call, who happened to also be the pulmonary specialist there at the time, insisted I come in because I could have a lung infection contracted from the boys' chicken pox.


I had never experienced so much anxiety in my life. I left the boys with a sitter and headed to Virginia Mason ER. It was the longest 2 and a half hour trip I had ever taken. My sister met me there. I was a complete wreck. From what I had read about scleroderma, I knew there was no way of knowing if I had 3, 5 or 10 years to live. And with this possible lung infection, I was scared to death.


I sat in the waiting room with my sister, sobbing. All I could think about was who would take care of my boys? My ex was abusive and no role model. Not only that, he was in no position to take care of them financially. My emotional state exacerbated my physical symptoms. And the ER was a nightmare. All alone, waiting on a gurney in the hall, among screaming, moaning drug addicts before I could get test results was like being in a very bad place.


Finally I was told that there was no infection and to follow up with Dr. Buckner. I went home feeling only mildly relieved.


Dr Buckner started me on immunosuppressant medication as well as prednisone and a medication to treat the Raynauds. She was not able to give me any prognosis. It was simply just a wait and see...If I was still here after 5 years then chances were good that I would be here another 25 years.


So in those first 5 years, I took a medical leave of absence from work, applied for disability, eventually got SSI in lieu of disability, and then quit my job. I focused on my kids, my health and my home. It took me 3 years to finalize my divorce. When I was about to lose my home due to foreclosure, my dad stepped in and paid it off.


It's been 13 years since those first few very scary months/years and in all that time I have learned to appreciate every little thing. I know what is important and what is not. I have had to give up a lot of myself - of who I was. There are a lot of things I can no longer do and I grieve those losses every day. But I also know how lucky I am. I know what really matters and I know that even living with scleroderma, I am living the best life I can and I appreciate every little thing just a little bit more. Especially the blessing of being a mom.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


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