"May God grant you happiness always, but when the clouds appear
may you have the love and the wisdom to find the rainbows."
My name is William. I am forty-four years old and I seem to be aging rather fast. Also I had to give up my career of being a registered nurse (RN) over two years ago due to total disability of many of the disease effects.
I was given the diagnosis of scleroderma in January 1998 which then really started to explain what was happening to me. My rheumatologist is still not sure if it is scleroderma, lupus, or some combination. I think it is systemic scleroderma due my medical history and current signs and symptoms.
My first major symptoms of disease problems was twelve to fourteen years ago with chronic problems in my colon. I was having diarrhea at least thirty times a day and food material moved so fast that I had very little absorption. At that time the doctors thought I possibly had Crohn's disease and tried various meds including Azulfadine. Since I mainly gave up eating meat my bowel habits are "normal" and very infrequent abdominal pain.
Also six years ago I started having cardiac symptoms by having my first heart attack. I have been diagnosed with a several different heart problems and placed on a multitude of medications. The cardiologist said I have a good pump, "It's just stiff". After I was placed on continuous oxygen at home, I avoided going to the hospital as often.
For several years I have had aches in my joints but in the past year it has become severe polyarthritis and I have to stay on narcotics to remain functional at home.
About eighteen months ago I started having symptoms of Raynaud's phenomenon. I can hardly hold a can of soda in my hands anymore due to the pain. Also with the arthritis in my hands my fingers are becoming very stiff.
My asthma has also become much more of a problem and I stay short of breath most of the time even with the oxygen. Also I was diagnosed with severe obstructive sleep apnea a few years ago and I have to wear a BiPAP mask whenever I sleep.
Now I am having dizziness and hearing problems related to Meniere's disease. Also I am having memory problems which the doctors are not sure if it is part of the disease or possibly all the medications I must take.
Sorry that my letter was lengthy but so has been my journey with this disease. I would not wish this disease on anyone, even a enemy. At least my wife has stood by me and believed me through the years. Without her I know I would not have made it to this point.
I am just taking it day by day and hoping some thinks will get better or at least not any worse. Also there is a family history of Autoimmune Diseases in my family. My mother has rheumatoid arthritis and my father has had gout.
I have written a saying that I had told to many people: "May God grant you happiness always, but when the clouds appear may you have the love and the sisdom to find the fainbows."
I am here to e-mail with anyone and listen.
New email address needed 01-24-05 SLE
Old Email Prefix: heartkaput
Story posted 1-11-99
ISN Senior Artist: Sherrill Knaggs
ISN Artist: Sherrill Knaggs (In Loving Memory)
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: