Sharsheen


About September or October of 2004, my hands started turning blue, then purple. I went to the doctor and was told I need to see a Rheumatologist, I did and was diagnosed with Raynauds's syndrome.

At that time started taking medicine to help my my blood flow properly. I was never the person to take medicine even though I battled Asthma since the age 7, I just don't like the fact of being sick. So needless to say I did not take the Raynaud's seriously and stop taking the medication.

My condition did not improve and slowly after my son's 6th birthday I started noticing dramatic weight loss and skin discoloration. I thought that maybe it was from the stress of my job. I had just received a promotion to a highly stress position, but I was looking sickly. Employees were coming up to me all the time asking me am I alright and I would get mad because nothing was wrong or so I thought.

So finally I made an appointment and the Doctor first response was it may be scleroderma or lupus, so she had me do blood work and scheduled me to see a Dermatologist for a skin biopsy. The Dermatologist gave conflicting stories, she told me my biopsy was normal (when it actually showed signs of scleroderma) and my regular doctor told me that I had Lupus. I left the doctor's office that night believing I was about to die! I called my aunt who called the rest of the family and about time I made it home everyone was there supporting me telling me that I would make it and that they were behind me.

After I got in my head that it's Lupus I got online and did research on the disease so that I could have questions for my Rheumatologists my next appointment. February 2005 I had an appointment with the Rheumatologist, who had already looked over my blood work and skin biopsy, she told me that she
wanted to do more tests but she did not believe I had Lupus but she believed I had a form of Scleroderma. What a relief or so I thought.

In between time my original Rheumatologist left and I was assigned to Dr. Elena Gogoneta, the most caring doctor I had ever met. Right away she me on prednisone, she said it may help and wouldn't harm me to take it. She had me take more blood and urine test, also a muscle biopsy to check for polymyositis. When everything came back she diagnosed me with scleroderma, but wasn't sure which type. So she ordered a series of other tests to check and see if any of my other organs besides my skin was involved. Funny story: during my heart ultrasound the technichan had a puzzling look on her face because we couldn't see my heart on the monitor, so she started to ask me something then stopped. Finally she said "uh have you had cosmetic surgery"? Confused at first of what she was asking I responded "NO!?" Then I realise she was asking if I had breast implants. I have size 40D breasts (natural) and due to the position I was laying we couldn't see my heart on the monitor.

Anyway after the ultrasounds, ekg's and other tests, she came to the conclusion that I have Diffuse Scleroderma, I was put on different medication and my blood & urine is monitored every 2months. My skin had even started getting the pigment back in the location that it was losing.

I still go to my appointments and take my medication most of the time. I recently had to switch medical facilities, but the new hospital is the number 1 treatment center in my city (supposedly). I still have chronic fatigue, which I went to a health food store and got an energy supplement with ginko, I get cramping and swelling in my legs from time to time, but for the most part I'm doing a little better taking it one day at a time. I can't let this disease beat me, I have faith that GOD will save us all.  I have to much to live for and his name is Antwan. I am only 25yrs old and have plenty of things to do. So you all keep praying for each other and for a cure. These posting of updates good or bad is inspiration to a lot of people who don't have anyone to talk to, because only someone who is going through it really knows how you feel. And just knowing I'm not alone helps me.

Email: sharsheen@sbcglobal.net

 

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