Notice the Symptoms

When I was first diagnosed with Scleroderma the doctor was leaning more towards a hypothyroid problem, nephritic syndrome, rheumatoid arthritis or Lupus.  Blood work, urology and serum cretin confirmed my condition.  My arms by this point were swelling bilaterally and my legs were becoming shiny and hairless.  My feet were swelling and I had difficulty putting on my shoes. The shoulder, hip, knee and elbow joints were becoming ridged, less flexible and hurt with prolonged movement.  My throat,chest and abdomen are involved with skin tightening and muscle contraction. Most noticeable is my face is swollen around my forehead and eyes. Rosacea appears on my cheeks with my lips tightening to thin lines. Both arms are less flexible and the skin is becoming very taut. Every day it seems is harder to get going. It takes me longer to shower, dress, and go to work.  My hands are less co-operative these days and shaving is difficult as well as tying my shoes. Climbing the stairs at work ( 2 flights) remaining at my desk and concentrating on my bookkeeping or sales takes all my energy and attention.  When I went home for lunch I would have a power nap for twenty minutes feel refreshed and go back but lately the power naps went for two and a half hours and I was feeling terrible afterwards. Depression was setting in with loss of concentration and memory lapse. Also another problem surfaced.  It is called secondary Raynaud's phenomenon when it accompanies other diseases. Raynaud's makes the hands turn white from lack of blood supply then they turn blue due to a lack of oxygen followed by red flush when the blood vessels reopen. My hands are curved at the first finger joint and are ridged. They look like arthritic hands but there is no pain attributed to this condition. I can touch all four digits with my thumb which is still flexible but I can not straighten my fingers.  The onset of Scleroderma progressed so rapidly and the doctors outlook for me was not positive at all. They agreed to make my expiration as  humanely as possible with drugs and care but I wasn't ready to give in yet.  Even after reading everything I could on the Internet and most was not positive information I would not give up. Lets try every angle and invent a few ourselves.  Stay true to yourself.

Tired all the Time.

I realise my body is reacting to muscular and synopsis changes constantly from within, which also means my body is always working to repair itself. Some days with much enthusiasm I am able to perform my walks, housecleaning and meal preparations. Other days it is a chore to get up and move about.  Don't let depression rob you of being glad you are alive. Celebrate the small victories. Today I walked to the end of the block and back. The sun was shining and the fresh air was invigorating.  Yes I cursed as I slowly got dressed, tied my shoes with my gnarly twisted hands but with deep breaths I started my walk.  When I got home I started my regiment of stretches and felt better for the day.  Knowing your limitations helps in how you deal with obstacles.  Not that you should let your limitations dictate what you can not or want to do but rather make it game where you challenge yourself.  Some days this works for you and makes you worth while other days you will curse everything and anything. Don't give up! Being tired has its pluses.  I get to have a rest in the afternoon, slows me down to appreciate what I do have and makes me thankful every day that I am here.

Where to begin?

I am a young man at heart but my body tells me other wise. When I was 45 yrs. old I was diagnosed with  Scleroderma and Raynard's Phenomenon. I want to tell other patients that there is life after being terminally evaluated.  For some unexplained reason when I was down to the 4 months left to live, my life turned around.  My skin was as hard as a magazine cover on both arms, a drawn tight face ( not a wrinkle in sight), shiny flat white legs and hands that were curling into a tight fist was to be my existence. Tired, depressed, lethorgic, all my joints hurt to move, sit or stand. My mouth was tightening as well as my throat. My teeth were becoming loose and I put lotions and creams all over my body to help with the dryness I was having. Was this to be what was left of my life.?