Systemic Scleroderma

Last Thursday, I asked the Rhuemy doc, “How do you know when this is no longer localized Sclerodermaa?”  So he say, “When it starts going beyond your hands and feet.”  Then he took a look and it is going beyond my hands and feet.  He feels I have the Systemic form of Scleroderma.

“Systemic Scleroderma can appear in three different ways:

  • Limited (often referred to as CREST.)
  • Diffuse
  • Scleroderma sine sclerosis

The limited is often referred to as CREST, which stands for:

  • Calcinosis:  Calcium deposits in the soft tissue of the skin.
  • Raynaud’s Phenomenion:  Most commonly seen in the hands, this is a condition in which the small blood vessels contract in response to cold or anxiety.  The fingertips usually turn white, blue, and/or red and often become numb.
  • Esophageal dysfunction: This is an impaired function of the esophagus.
  • Sclerodactyly:  Thick and tight skin on fingers due to excess collagen.
  • Telangiectasias:  Found on the face & hands, small red spots.

Diffuse – typically the onset is much more rapid in limited (CREST).  Thickening occurs more rapidly and includes more areas of the body.

Scleroderma sine sclerosis – resembles the above including organ involvement.  However, the main difference is that this type of scleroderma does not affect the skin.”

Not sure which is the worst of these, but time will tell which of these that I have.

Something I refuse to do, is let this disease steal my joy.  I refuse to let the pain of this disease steal my hope.

I am frustrated, mad, sad, and all the emotions that go along with receiving the news, but I refuse to give up!!  I did have 4 days of stress eating of all the wrong things.  I definitely felt it, as my hands and feet are reminding me what a stupid decision that was!!

My sister in Vegas reminded me, our sister that died from this, survived only 7 years.  I have way too many things to see and do to put any type of limit on myself.  So, I have my boxing gloves on and I’m gonna fight!

I know I had 4 days of eating anything I wanted, but today, I’m back on my Vegan diet.  I know my taste buds have changed, as most of the things I had, did not taste as good as I remember.  So, that’s a huge plus!!

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