Hello, My name is Sandi and I have arthritis

Hello, My name is Sandi and I have arthritisOnce 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 “No’s.”  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 rheumatologists on every single “No” until the “No” in 2006 I had to hear.

“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.”

That doctor 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.

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 it’s in my genetics. But get this:  I have only had two positive ANA tests. (ANA is short for antinuclear antibodies found in your bloodstream. A positive result means your immune system has launched an attack against your own tissues, and is considered the go-to test for Lupus).

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 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 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 (Stitch, Bobbin and Bogey).

I started writing again this year. I freelance for Internet sites and newspapers on various entertainment topics. Here’s a little something I wrote for anglotopia.net on Downton Abbey withdrawal: http://bit.ly/RBRgN5

Surprisingly, after someone working with CreakyJoints noticed one of my postings on Facebook about RA, 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 tales 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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