Barb Case
Fourteen years ago, I was informed that the symptoms I was experiencing belonged to a disease called scleroderma. This was a complete surprise to me since I had never heard of it. Like so many others, I wanted to find out what was causing this and as much as I could about the disease and treatment.
The Michigan Chapter of the Scleroderma Foundation was very helpful in supplying me with pamphlets on the various aspects of scleroderma but I wanted more information. I spoke with others who had this disease and found that many had different symptoms. Others advised me not to join a support group as they were very depressing.
I volunteered to help out at the chapter office and met many more interesting people. One of them was Joan, who was introducing a support group in Livonia. Our first meeting was held in the auditorium at a local community hospital. The turnout was great and I found the meeting to be very upbeat. We have since changed our meetings to a lunch at a local restaurant since meeting rooms became unavailable at the hospital.
Since our first meeting, nine years ago, the Livonia group has met on a monthly basis. This group is very informal and primarily just a group of patients and families who become friends and get together and discuss our problems and share advice and help for those symptoms. We keep the meetings upbeat and refuse to get into depressing moods. It has helped me to accept the fact that I have an incurable disease, but one that can have the symptoms treated. We have found that among our group, we all have different symptoms, but also many that are the same; we look forward to sharing with each other and at times attempting to lift sagging spirits. On the whole, the past several years have helped me enormously. I would strongly advise anyone to join a friendly group. If the meeting gets depressing, attempt to keep it upbeat or do not attend again. I have learned to “listen to my body and live one day at a time”. I have met many wonderful friends and look forward to our meeting in the fall. |
