Wednesday, February 10, 2010


My best friend Sue (Roller) Twiest, my son Charles when
he was much younger, and myself. Taken in Lutsen, MN.

I took an FMLA day today. I woke up feeling lousy with muscle and joint pain and other HCV symptoms. It's not fun living with liver disease. On the other hand, I've always had a very strong constitution. It's hereditary. I come from good strong sturdy peasant stock. As a Mayflower descendant, I enjoy strong healthy genes. All the weak genes died out that first winter that was so harsh and that killed half the residents of Plymouth Colony.

By this afternoon I had bounced back. Two extra-strength Bayer helped. I decided to spend some time with Gym. This time I ran a mile around the track. That's 14 laps. Then ten miles on the stationary bike while reading more in Rob Hahn's book. After that one of the weight machines. Then the stair climber while watching the tv that's embedded in the apparatus. All that took up over an hour. Time to hit the pool.

I spent about an hour in the pool swimming laps. I love swimming. The pool was nearly empty. I suppose most people were still at work. Back and forth, forth and back, breast stroke, back stroke, scissors kick, then back to the regular swim stroke. I was starting to feel good.

Jacuzzi, steam room, shower. Time to go back home. Nap time.

Tomorrow after work I get to meet my trainer. Nate. Oooh la la. Oh wait, what if Nate is short for Natiana?

I lost another five pounds. I can hardly wait for spring. Then I can run in the huge park that's adjacent to my apartment complex.

On March 11, I get to find out how my liver's doing. I go in every six months to see Gina Storres, nurse practitioner for Minnesota Gastroenterology. Sometimes I see Dr. Coleman Smith, one of the best experts on hepatitis C in the Twin Cities. My blood is tested for various things, such as ALT, AST, cholesterol (mine has been way too low), thyroid, etc. Then I'm sent to St. Paul Radiology for an ultrasound of my liver. So far, even though I have a cirrhotic liver, it's well compensated. Decompensation could occur anytime. That's why they do the ultrasound every six months. It tells them if there are any tumors and whether the portal vein is still functioning properly. So far so good, but that could change in a heartbeat. After all, I had no liver damage for decades, then suddenly it went from stage one, grade one (which signifies minimal damage) to cirrhosis in less than three years. With cirrhosis, there is also a risk of developing liver cancer. Some think I must have been a heavy drinker or I wouldn't have cirrhosis. That's false reasoning. I have never been a drinker. Never liked the taste, plus I get enough headaches. Lots of people have cirrhosis who have never been drinkers. You can get it from HCV, HBV, auto-immune hepatitis, fatty liver and other medical conditions.

How do I cope with chronic disease? Except for the times when I have medical appointments, I try to ignore it. I know it's there, but I try to keep busy. That way I don't think about it. I'm very busy with Toastmasters, DAR, Red Hat Society, and now I'm also active politically. Not to mention my full time job and the hours I spend blogging.

The only thing I wish for is a better support system. I used to go to LiverHope, but they're not so active anymore. Most of the members either died or cleared the virus with treatment. Unfortunately, I was a nonresponder to treatment. A good support group is an excellent thing to have. Only other heppers know what it's like to live with this. Some of my friends try to understand. Some of them have medical issues of their own. Ain't life grand!

On the other hand, I enjoy spending time with people who aren't aware of HCV and its effects. It makes me feel normal again.

I also enjoy meeting new people and learning new things. And maintaining hope that the FDA will soon approve the new protease inhibitor that will be added to the treatment protocol.

Meanwhile, I enjoy listening to music. Happy music makes me feel better. It makes me smile. Watching Savion Glover tap dance also makes me smile. Thinking of my new political friends makes me smile too. Thanks Holly, Orrie, Mark, Katie, Brian, Gene, Frank, Elizabeth, Ryan and everyone. My life is richer for knowing you.

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