"My Health Challenge" / Find your 50

“No Rest For The Weary”

Soothing, Sleepy Sounds

I just woke up to the sound of rain. I love sleeping during a rainy afternoon. However, I’m sleeping a bit too much lately, at least it seems more than usual. My family would tell you they feel I don’t get enough sleep through the week.  I’ll nap some days but lately it’s been for hours on end only to wake up for a couple hours and then back to bed.

 “Too Tired”

Fatigue is certainly one of the major symptoms of Scleroderma. But I seem to go in spurts. Right now, I get home from work and make a beeline for the bed, barely taking off my shoes before I drop into a deep sleep. That may sound like heaven and it is, but I don’t want to sleep away the rest of my life. Okay, that’s a bit dramatic but it’s frustrating.  It seems there’s no rhyme or reason to my erratic sleeping.

Admittedly, I do get up weekdays before 5am for work. I’m on the air by 6:05 at the radio station where I work as news director and anchor. My day is always busy and I’m through by the early afternoon. I also host my own show on Saturdays where I talk about health, wellness, fitness, family, relationships, finance, books and my autoimmune issues from time to time. The show is taped so I don’t have to work 6 days a week.

 Ready for my close-up

A documentary crew just stopped by our KTRS studios here in St. Louis. They were in town profiling a fellow Scleroderma patient and I invited them on the show and they captured a bit of our exchange on tape. It’s called “Project Scleroderma: Beneath the Surface.” The producer lost her mother to the disease last year within a few months of being diagnosed.

I was thrilled to visit with the producer and her crew. She’s a hair stylist by trade but raised $35,000 in 30 days to produce the video to help spread awareness worldwide about Scleroderma. She got an added endorsement from actor and comedian Bob Saget, whose sister died from Scleroderma several years ago. He now serves on the board of the Scleroderma Research Foundation and continues to raise money.

Her mother’s diagnosis came too late, possibly because of her breast cancer. Although the chemotherapy took care of the cancer, she was still sick. That’s when doctors realized she had Scleroderma.  The disease spread rapidly, taking her life within a few short months. Since Scleroderma mistakenly attacks and destroys healthy body tissue, the chemo took its toll on her mother’s body. Cancer is often a complication of Scleroderma. Many symptoms can be mistaken for another ailment.

“Listen” To Your Body

Early diagnosis is so important and can be life saving.  In fact, as I’ve written in earlier blogs, I may not be here right now if I hadn’t gone to my internist for a “routine physical” four years ago.

I knew something was wrong when I couldn’t walk up the hill to our house as easily as before, my hands were always swollen and I was itching.  I had terrible reflux whenever I ate–to the point of choking.  My mouth was so tight I could barely open it for the dentist or to brush my teeth and, I was having trouble speaking, slurring certain words. And, of course, there was the fatigue. I chalked everything off to Menopause. But it was a simple blood test of an antibody called anti-SCL-70 by my savvy internist which confirmed his suspicion that I had Scleroderma. Ask your doctor to test for that antibody if you think you have any of the symptoms.

 

 

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