Once upon a time in 1974, a 19-year-old University of Oklahoma sophomore kept a doctor's appointment. She was there all day.
At the end of the appointment, the doctor, a rheumatologist, told the coed things about herself that convinced her he was a mind reader.
He wasn't, but he knew her disease well.
"You cry all the time," he said. "You get sick all the time too, but no one believes you because you don't look sick. But, you are. You have a disease and it's called:
Rheumatoid Spondylitis, Strep Sensitive, Female Variant."
I will never forget that day, or that doctor. He changed my life.
He told me crying was good, because it is the body's last stress release mechanism, and the rest of mine were broken. He knew I did not sleep. I got strep throat every month because my immune system could not fight it. It hurt to make the bed or wash dishes by hand because my lower spine was very slightly involved. He knew that I'd spent a lot of time since puberty with heating pads wrapped around my knees.
He also told me a lot of "Nos." No running, no tennis, no skiing, no job where I had to stand all the time, no day without a nap.
I was 19. I was indestructible. Well, I wanted to be.
No is my least favorite word and I fought him on every single "No" until he retired and sent me to a doctor who was my own personal witch doctor. He retired in 2007, a year after he gave me a "No" I had to hear.
He gave me three months to live unless I quit my high pressure but amazingly great job that day.
I left my job as an entertainment writer at a major daily newspaper, covering music, movies and entertainment events.
I slept for two straight years.
After he retired, I bounced from doctor to doctor, and I got better, so much so I was fired by one doctor because they specialized in treating arthritis patients who needed some sort of joint surgery, and I do not.
I spent two years with a pain management doctor and a primary care physician who got freaked out by my odd blood counts.
She sent me to a hematologist, who sent me to a rheumatologist.
She took me in.
Hi. My name is Sandi, and I wake up every morning of my life saying "Ow!"
So, it's 2012 now and here I am. Worse for wear, wiser for it and full of 38 years worth of knowledge of how to deal with a disease that evolves as fast as the treatments for it.
Scrap that old diagnosis. Now I have a laundry list of syndromes, along with the spinal rheumatoid arthritis.
My spine is involved now all the way up to my neck and has spread to my hips, shoulders -- all the usual sites.
They include Fibromyalgia, Chronic Fatigue, every symptom of Lupus, and its in my genetics. But get this. I have only had two positive ANA tests.
Genetic testing has changed how arthritis is treated and diagnosed.
Genetics is why I never had children. I carry the gene for RA, asthma, allergies and MS, and I could not find it in myself to pass this sort of burden along. It was a personal decision I made a long time ago.
I live with my husband, two great dogs named Woody and Caro, and four cats. Only one cat is mine, Kneadle, (yeah, it's a personal joke), my husband claims the other three.
I started writing again this year. I freelance for Internet sites and newspapers on various entertainment topics, and surprisingly, I was asked to write this blog.
I can't wait to share my adventures and yes, my opinions on living with this disease and living with it well.
I will be writing about how things have changed, how they've stayed the same. How to cope when you can't, how to fight the depression, the fatigue, the hopelessness and sadness we all feel sometimes.
I'll also tell stories of places I've been, things I've done. I'll drop celebrity names, tell tale of famous hotels and how to get through them, and airports, and how to survive to pass on what you learn.
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