THE MOVE
In the fall of 1986, in the clutches of the recession my husband, Al, lost his job and I was unable to work. His family thought the economic outlook was better in their area and convinced my husband to move “back home” to Toledo, Ohio. He found employment and the boys and I followed him in December, arriving in time for Christmas.
My search for medical care that was affordable on one income took me to Toledo University Medical Center. I saw several doctors as they put me thru the paces of diagnosing and treating my symptoms. I was given a “new” diagnosis of CREST. I don’t recall much about the doctors there except for one doctor who gave the impression he REALLY cared about finding a solution. He was interested in the research side of Scleroderma which at that time so little was known about. Dr. Steigerwald was the first doctor I had seen who actually encouraged me to be a part of my own care. The sores or ulcerations that constantly developed were a type of staph infection and required heavy doses of antibiotics. Dr. gave me a refillable prescription for antibiotics (something I had never seen before or since) and told me “when you see it starting, start the antibiotics, THEN call me”. I finally felt I had some control!
Much to my dismay, Dr. Steigerwald passed away and I was then referred to other doctors. I lost some of that control I felt I had gained, but I refused to let go of it totally. I have since been very involved in my own care and I let my doctors know that is how it will be. I know how my body reacts to different situations, they don’t.
In 1988 I reapplied for Social Security Disability. This time my application was approved, and back-dated to my original application in 1986. Although this was a wonderful thing, SSD is based on your work history/amount paid in to Social Security during the 10 yrs prior to being determined disabled. Unfortunately, I was young and had not been able to work full time for quite some time so my deposits to SS were slim so it wasn’t a financial windfall by any means. But it was a great help, and since they had back-dated me to my original application date, I had put in my 2 years waiting time to receive Medicare. So now I at least had some help to pay the doctors and purchase needed medications.
It wasn’t until after the move to Ohio that I managed to put 2 and 2 together and came out with 4….I don’t know if it was because I was naïve, stupid, unobservant, so stressed I didn’t pay close attention, or any of the many more excuses I could probably come up with. BUT…after that first winter in Toledo, it dawned on me that the cold was VERY HARD on me. The ulcerations would get worse each winter. The skin was tightening not only on my hands but my arms, legs and torso too. The range of motion in my arms was limited by the tautness of the skin. Eventually I was barely able to raise my arms above my head.
Each winter I spent many days and nights sitting in the rocking chair wrapped in blankets to stay warm enough to keep my fingers from turning blue. The ulcerations would become gangrenous; I would spend months on antibiotics. I tried different medications to improve circulation; anything the doctors wanted to try I was a willing participant. However, trying to cope financially with all of the costs involved and raise children was very stressful. My husband worked 3 jobs to try to keep everything together for all of us.
I started setting short-term goals to give myself a reason to get out of bed every day.
Although we loved being near Al's family, living in OH was one of the most stressful times of my life.
To continue my journey with me click here. (The Move II)