Carl Noechel
Greetings! My name is Carl Noechel. My wife Sharon has Scleroderma. I would like to share with you my perspectives on living with a spouse who has this disease.
In the spring of 1975 Sharon noticed a tight feeling in her fingers when she got up one morning. She said that they felt swollen even though they didn’t appear that way. Not long after that the skin on her hands and lower arms began to get taut. She went to see a doctor. The first diagnosis was tendonitis. The prescribed anti-inflammatory drugs didn’t help. The second diagnosis was arthritis. That just didn’t sound right. The third doctor, suspecting a connective tissue disease, asked her to go and have a skin biopsy taken. The results were that she had Scleroderma! I remember saying Sclero-what? We had many questions and asked the doctor if the biopsy was correct. The doctor assured us that the skin biopsy was right. Being a General Practitioner he didn’t know much about Scleroderma. He recalled seeing one case years earlier when he practiced medicine with his father. The definition was vague and frightening. He explained that is was a progressive connective tissue disease that caused tightening of the skin on the hands, feet, face and sometimes internal organs like the lungs, heart, kidney etc. His prognosis was, usually fatal, maybe 3 to 5 years to live. We were stunned.
The thought of losing my beautiful young wife was devastating. My attitude was that maybe the doctor was wrong and even if he was right we should try to get the most out of the future. I continuously expressed this idea to my wife who was quite depressed. She gradually agreed and faced whatever life had to offer. That was over 30 years ago.
It is difficult to express in words how I felt watching my lovely wife slowly succumb to Scleroderma. It is very disheartening to see. It is a feeling of hopelessness to know there is nothing I could do to stop the disease.
I no longer have the burden of worrying about my wife while at work as I have retired. I better understand the differences between ache, pain, upset, sore and sick. I have learned her moods and how to cope with them. I know when I can approach her and when I should keep my distance. I do whatever it takes to help her.
Since that early diagnosis, Sharon and I have learned a lot about Scleroderma. Information came from the Scleroderma Foundation, books, seminars and many specialists in different fields of medicine. Sharon and I learned that by talking with others who were afflicted with this disease we were not alone.
My wife is tough. She is a fighter. She is a survivor! Best of all, she is still at my side.
In October we will celebrate 40 years of being together and look forward to many more.
Whatever the future brings we will face it together. |
