My Scleroderma Journey

When I was diagnosed with advanced Systemic Scleroderma in 1988 there was little hope of a full recovery, even a short remission was rare. 

My first indication that something was physically wrong with me was a swelling in my hands and feet.   Although I had Raynaud's disease for 20 years previous which did make my hands and feet cold, numb and discolored, this was something different.  I began having joint pain of shoulders, hips and knees that progressively got worse.  Then I lost the feeling in my head and face.

I entered into a time when I lost my ability to eat due to that numbness in my head and face . I had difficulty opening my mouth as well as swallowing.  For two and half years everything was blended into a watery mix in order to gain nourishment.

Looking at myself in the mirror was difficult to say the least.  I did not look like my former self, my face like Formica, hard and taught yet puffed.  I struggled just to move in my stone like body.

Many times my despair was overwhelming as my only research source was the public library and a bright open minded Rheumatologist.

Much more is known today of this crippling, devastating disease although more research is needed.  

Even though I am fully recovered and have reversed all the disfigurement of Scleroderma, I am still vigilant as to what I eat and drink and work to make my home as chemical free as possible.  

 My attitude to life has changed to living in the now instead of the future.  I make sure that I create an environment whereby I make time for peace and quiet even if it is only for twenty minutes.

Disease is a call to change and can be a time of growth and a journey to finding oneself.

Maureen Taylor.