Recently I have been writing about chronic ailments which are affecting the lives of some of my friends. While these brave women prefer to remain anonymous, at least they willingly speak about symptoms, treatment, prognosis and other details, in an effort to help others who suffer from the same disease. On the other hand, there are those who will barely whisper the name of the disease, and others who will not even speak about it, even though they may be helping some other individual.
Before I write about Cheryl today, I want to say thanks to all those who realise the importance of sharing with others, as after each publication, there have been calls of empathy or from those seeking more information about the disease.
Cheryl was about forty-five and living in Denmark when her hands, feet and tongue became swollen. "I had very bad pains in my chest, I found being able to swallow a problem, I became very tired with chronic fatigue and there was a loss of muscle-tone."
An exercise fanatic, with a special love for riding, she had to stop all forms of exercise as "I was alway so tired." Then Cheryl started to lose weight as well, and would throw up everything she ate. "The worst part about it was they could not find out what it was" says Cheryl.
About a year later, her husband was transferred to Florida, and Cheryl's new neighbours were a husband and wife doctor team. "I explained to the wife that I was choking on my food and losing weight, and she picked it up right away, that was about nine years ago. I remember her writing on the envelope requesting the upper GI test "Scleroderma" with a question mark."
This common but rarely known disease is a chronic, auto-immune, connective tissue disease characterised by fibrotic, degenerative and inflammatory changes in the skin, blood vessels, skeletal muscles and internal organs. Generally classified as one of the rheumatic diseases, Scleroderma affects primarily females who are 30 to 50 years at onset. The localised type of this disease which is popularly known as the "disease that turns people into stone" , will harden only the skin and sometimes underlying tissues but will not affect the internal organs. While the systemic forms cause fibrosis (scar tissue) to be formed, and/or internal organs to harden.
The cause of this disease is unknown and the course and severity of the disease varies widely in those affected. Excess collagen deposits in the skin and other organs produce the symptoms which may range from very mild to potentially life threatening.
Cheryl considers herself lucky. In spite of the suffering and pain she has lived with for nearly ten years and frightening loss of muscle tone, she does not have the disfiguring type which can change your facial structure, hands and feet. "I know one woman who must have her mouth cut at both sides everytime she visits the dentist as her entire facial structure has wizened." And as an artist, Cheryl is still able to produce for her exhibitions. "It is tiring and at the end of a day of bending my head over the easel, I have to wear a neck brace because there are no muscles in my neck and back and the stress from holding my head up all day gives me a migraine. But through all of this you think how God is good, I could have gotten it in my hands and how would I have painted."
Cheryl's main problems are her digestive system, including tongue esophagus, stomach and bowels, with some scar tissue on her lungs. But she has survived the original doctor's prediction "well you know most of them live for about seven years because it gets progressively worst." And acknowledges that some people do not even live as long as that because it can affect the heart and lungs.
There have been surgeries, like when the muscle in her jaw burst and she couldn't open her mouth "I had to go to therapy to learn to open my mouth again"; then to repair the muscle which supports the uterus. When she returns to Tampa next week, there will be more surgery. Using laser rather than cutting because of the skin involvement, a new procedure will be used to tie the bottom of the esophagus with muscle from her stomach.
Cheryl lives on medication, bland food, no alcohol, no fats. She is unable to do most of the things the average person takes for granted, such as, lifting things, climbing stairs, bending "but I have learned to live with the disease, and live my life to the best of my ability."
Because her husband travels a lot with his job, Cheryl is alone most of the time and tries to do everything possible for herself. "Your life does not stop, it does not go on as fast, but it does not stop" says this determined mother of three grown sons and two grandchildren. "I used to clean my house in a day, now I do it in a week. I used to run up steps, now I crawl up steps but I get to the top. When I paint my neck is bent forward all day but it is such a joy that I can still do it that it does not even hurt."
Although she makes a point of not talking about her sickness, because she feels that there is no person who will understand "that I can be so at peace with myself and live by myself a lot" the day came when Cheryl was forced to share it with her art group in Tampa, but with strict warning that she is not about to make it a big part of her life.
She is also chairman of a support group for the disease in her area. There are regular visits to the rheumatologist as it is a sort of arthritis; and the internist who is a woman and the best thing to ever happen to Cheryl. "She calls me sometimes when she gets new medicine, and sends samples for me to try and see if it works."
"There is pain every single day, in all my joints, back and neck because the muscles are totally gone so it is hurt, hurt, hurt. If I get up one morning and did not have that hurt, I would think I died and went to heaven but the hurt makes me know I am alive."
Cheryl demonstrated her inability to raise her hands over her head, and laughingly explained having already had to cut off a sweater as there was no one to help get it over her head. "You learn to adapt, and wear things with openings. I try to stay healthy, eat the right things, You have to learn to live with yourself. I still drive. I cannot walk a lot, but I walk at my own pace. There is no more handball, hockey, tennis, badminton, which I loved. There are a lot of things I cannot do but I do the things I can do" , such as, teaching art at an Art Centre once a week.
Some other discomforts which Cheryl lives with include reflux (excess stomach acidity) because her digestive tract is gone. The liquids in her mouth, nose and eyes have dried up. But she carries on with her life and says "when I reach home, I die. Unless I tell somebody I am sick they would never know" which I can confirm as she looked the same since I had last seen her about thirty years ago.
"There is nothing for anyone to feel sorry about for me. God has been good and kind and I can handle it. If I am not too well I stay home and paint. My house is kept at a pleasant 78 degrees as extremes of heat and cold affect scleroderma patients. When I feel better, I dress and am gone. I go with the flow. It is much easier to handle things that way" says Cheryl with an infectious chuckle.