THE EARLY YEARS

I have tried many times to write “my life story”. It never seemed to look right once it was down on paper. Now that I am awaiting a lung transplant, I have decided I need to put as much as possible together to give anyone interested the chance to learn about how I got here and where the next fork in the road will lead me. It has been a long and often stressful journey, but I have always tried to look at the “bright” side and enjoy the life that God has given me.

I was born and raised in Corvallis, Oregon. Our family was what we perceived as "normal". As children there weren't too many broken bones, sprained ankles, or other traumatic experiences that would have our parents spending too many hours at the doctor's office or the Emergency Room, just your basic "kid stuff".

I married in 1969 and had my first child, a son, in 1970. Life wasn't easy as a teen-age parent, no one has ever said it was or would be. But as life went along I dealt with things as best I could.

I remember the first indication that something was medically wrong. I don’t remember the exact date, sometime during spring of 1976 I believe, but I do remember waking in the morning and finding my fingertips a very purplish color. I also remember them feeling like I had burned them. It was that pain of a “quick” burn, the kind where you grab hold of something hot and it instantly reminds you that you shouldn’t be touching it. The kind that doesn’t blister, but just says you were foolish. The problem was I didn’t remember grabbing anything hot. Whether this pain and discoloration lasted for any significant amount of time, I don’t recall. I assume there were some lasting affects because I did see my family doctor.

His diagnosis was Raynaud’s Syndrome. At this time, not a lot was known about this condition. He was aware of the symptoms that presented, but was not aware of treatments for the condition so he referred me to the Oregon Health Sciences University (OHSU) research laboratory in Portland, OR, where he knew they were conducting studies. After visiting with the doctors there, I was accepted into the research program.

One of the first things this acceptance required was a week-long hospital stay while undergoing testing (many of which I don’t recall or maybe don’t care to recall). There were “angiograms” where they injected dye into my system to travel through my arm and into the fingers while they took x-rays, blood tests, and I remember some kind of electric “stimulus” where they shocked me in the elbow region (I guess to see if that would dilate the vessels or “jump” them out of their spasms). After those tests, I was put on a regime of 3 or 6 month visits. At these visits the protocol was to sit the patients in a very warm room (I seem to remember 85 deg F) for a period of time sufficient to “warm up”. Hand temperatures were measured by a device with a sensor that was held between 2 fingers. These temperatures were recorded, then patients were required to submerge their hands in tubs of ice water for 30 seconds; after which, the temperatures were again measured and recorded every 5 minutes. This was done to see how quickly a patient responded to “warming back up” in the warm room. I remember most people leaving long before me, and after 45 minutes – 1 hour even though the “finger temperature” had not returned to “pre-submersion” levels, they would send me home.

I continued this “therapy” for quite some time – 5 yrs or so. During these years I continued to work and take care of my young son. I got divorced, remarried in 1979, had another child and began raising my new husband’s son. Although I was happy, life was stressful. The skin on my fingers began feeling tighter, sores began developing; I was no longer able to work full time. I eventually began to see a Rheumatologist and was diagnosed with Scleroderma and told the prognosis was unknown. Although considered a terminal illness, no one knew how long a person would live since everyone affected seemed to follow a different path. In 1986 I applied for Social Security Disability and was denied.

To continue my journey with me click here. (The Move)