For those who may not know, my primary diagnosis is
Rheumatoid Arthritis. The first symptoms began when I was 20 years old. I felt
shooting nerve pain in my fingertips and toes. Then a knuckle swelled up. My
oldest brother cracked his knuckles at the time and I thought it was cool so I
did it too. I didn’t think much about the swelling in my knuckle until it
didn’t go away. Then my left ankle swelled, followed by my left knee.
Overwhelming fatigue came next. That was around 1980. By 1982, I was declared legally
disabled. I had to leave my job as an Administrative Assistant for a large
Lutheran church in the Twin Cities and move back to my home in Hutchinson. I
was 23 years old. (Just a side note: I worked for a life insurance agency when
I was 19 and one of the agents talked me into buying a disability policy. At
age 23 I was using it.)
Years later I had to give up my health insurance for a
period of four years and that’s when my knees went. I didn’t know about
something called “contractures” which basically means if you don’t keep the
range of motion in your joints they freeze up, and that’s what happened to me:
I can’t straighten my legs. (I wrote about that decision in a prior blog.)
That’s why I’m in a wheelchair. I’m in a power wheelchair because my left
shoulder is gone as well.
I went the holistic health route for many years and did
really well but eventually I couldn’t afford it. I miss the holistic
modalities, and I have suffered greatly from the Western medical paradigm. I
awoke July 28, 2004 and could not get up out of bed. I tried for hours, unsuccessfully,
and eventually I urinated all over myself. I called my mom, weeping, and after
she came and got Tia (my Yorkshire Terrier), I called the ambulance. My life fundamentally changed forevermore. I
went from no medications to way too many medications and have had great
difficulty tolerating most of them. In the beginning of my Western medicine
journey my primary care physician began an acupuncture practice and that was
such a blessing because it was covered by insurance as well. But, yep, you
guessed it, the practice voted to discontinue the program because it wasn’t
financially feasible, regardless of how well it was working for the patients.
We discovered after the fact that it was minimizing the side effects of the
other medications, and it has been hell since.
Currently I’m going twice a month to the Courage Center
Rehabilitation Center for physical therapy. The summer before last I was in the
hospital numerous times and nearly died a couple of times. Those experiences
left me quite weakened and I’m still fighting to regain my strength. I learned
more at my first appointment at the Courage Center than I had in the previous
30 years of physical therapy. I had developed Scoliosis but now it’s gone,
they’re helping me with my wheelchair, and they’re the ones that got me writing
again. We’ve only just begun! Whaahoo!
I have many more stories I could tell, but enough for now. I
just wanted everyone to be on the same page, so to speak. Don’t hesitate to ask
me questions.
