My story starts around September or October of 2010, when I developed a dollar size red spot on my left breast. At first I thought it would just go away. Another appeared on the right breast. They began on my back only a short time later. They had such a weird sensation. They needed to be scratched, but I couldn't scratch them because it felt like I was scratching sunburn. These spots itched so much that it would drive me nuts.
I don't have insurance so I ended up going to a charity hospital on November 3rd. They were puzzled and were going to refer me to their dermatologist. They decided not to give me a steroid shot and let the other doctor decide what to do.
Two weeks later, November 16th, I went back because I found a bump on my neck. Again they looked at my skin, (forget the bump) and gave me a steroid shot, which didn't help at all. To this very day I have still not received that referral to their dermatology clinic. I went to see my doctor for my liver (because I have hepatitis C) and told her what was going on. She got her staff to get the dermatology clinic to see me the next day.
By then it was December and for once I felt like I might get some help. He took two biopsies and the results were morphea. I was scared. All he said was that they don't know how you get it and there is no cure. He went on to tell me there was light therapy and he would check it out and send me another appointment.
A few weeks later in the mail I received my appointment, and it was set for April, which was nearly four months away. I got more information on the internet. Finally, out of desperation I paid to see another dermatologist. By this time it had spread onto my shoulders, down my face, under my breasts, and down my belly. It rapidly went all around my neck, behind my ears and all the way to the tip on my chin.
The dermatologist took a look and said I was too complex for him. He then sent me to New Orleans at LSU. I met another doctor who did some more biopsies in other areas, and more bloodwork. The findings came back inconclusive.
He put me on antibotics and said to come back in a month. He also offered to have me go to a conference that was coming to town soon. He wasn't sure when but would find out. He thought it would be in February or March. By the middle of February I went to look for the conference on internet. I was stunned to find it had already happened. Why even bring up the idea if you weren't going to follow through with it? I got angry, but I'm going to get through this wall if it kills me.
I am a forty-six year old mother of a twenty-year-old old disabled boy. I think sometimes, what on earth have I done to deserve this terrible disease. Then I think how God only gives what you can handle. That concept is frightening because this is only getting worse. I'm having bad cramps and spasms. The itching, dry mouth, dry eyes, tightening is now extreme. Having to turn my neck is painful. All of this has happened over a period of just five months! I don't know what my other problems are yet, but I am hoping they will come up with something.
Email: [email protected]
Story posted 02-22-11 SLE
Story Artist: Shelley Ensz
Difficult Diagnosis Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
United Way of Central New Mexico
United Way of Snohomish County
See ISN News for recent donors, including Juliet Youkhana; and donations in loving memory of Jim Miller and Arlene Marie Petulla.
Click Here to Donate or Shop
or click on the floating green DONATE sclero.org button.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: