Life with a Myositis Disease

The laughter and tears that come with living with Polymyositis

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Location: fort worth, texas, United States

Sunday, January 29, 2006

What's 'ordinary'?

I caught a small part of an interview on NPR with an author who had written a book....I think it was called 'The Extraordinary Search for the Ordinary American'.

It tweaked my interest since I recently was contemplating how unusual the average person's story is.

For example, as I was chatting with the home health nurse who came to oversee my IVIg treatment I learned a lot about her and her 'ordinary family'. It seems her daughter has Lupus, her sister was once in an abusive marriage to a cop and was saved by a guy she met in the internet who conspired with her family to sneak her out of town. She now lives with him in Virginia.

I have a coworker who has a port wine stain. Aside from the social problems that you know every child with a visible physical difference goes through, I learned that there are serious medical problems that come with this physical condition. He and his wife are very active in educating and supporting others with port wine stains. Looking at either one of them, you would never guess their extraordinary story.

I have another coworker (young!) who set her life on hold to raise her sister's children.

I have an old friend with one of those fathers who went through her own personal hell trying to find a way to respect herself after her father did his best to teach her she was not worthy.

I have an email pal - an older gentleman with the eyes of an artist, the soul of a poet. He also suffers from IBM and has lost much of his ability to physically enjoy life and explore his gifts. He spends much of his time delighting our online group with his sage perspective and quirky sense of humor.

I could go on with so many of the stories I have heard from people who I have come into contact with.

When I was in my self-centered and depressed teens....all right, all right - and twenties!..... I can remember being bemused by the seeming happiness and contentment of those around me. 'Are they really happy?' I wondered 'Or are they just too stupid to see how miserable life can be? How much pain happens seemingly at random?'

Does someone look at me that way? Ignorant of my travels across the country, my oddball childhood, my disasters, my fight with a rare disease?

I now can see and respect how ordinary extraordinary is. It seems to me that most people have a story to tell. A story that includes a fair share of challenge, pain, drama, recovery, love, excitement, etc....

Extraordinary IS ordinary.

Of course, that doesn't stop me from wishing for a little less extraordinary in my life ;-)

Reading over this, it sound incredibly trite. Maybe I should go on Oprah! Oh, that's right - MY story is real!

Trite or not, people really are interesting in the stories and experiences they have to offer.

Thursday, January 26, 2006

Early Death

I saw a death notice on the TMA site today that really brought home how fickle fate can be. A young man died from complications of myositis less than two years after being diagnosed.

Hi wife feels that his death was preventable, if not for the relative ignorance of his doctors regarding this rare disease.

And here I have been complaining about the endless tests my doctors continue to put me through to ensure I do NOT have any complications.

Shame on me.

Thursday, January 05, 2006

More news of the weird.....

How much stranger could life get? What a silly, silly question....

Went to see my neurologist today, and got some great news, some bad news, and some weird news.

The great news? I was worried about the bills when I realized that this neurologist was outside my insurance. I asked for my balance today and was informed that the MDA picks up the difference. Have I mentioned before how much I love the MDA? Considering my medication co-pays alone run me over $150/month, this was great news!

The bad news? My insurance company denied our attempt to get me back on IVIg treatment. Said it was only 'proven' effective for Dermatomyositis, not for Polymyositis.

The weird news? My neurologist changed my diagnosis from PM to DM.


His point was that my biopsy was positive for myositis but wasn't specific for which since I was already taking prednisone at the time of the biopsy, the fact that DM is more common, the fact that I responded so well to the IVIg but have not to the other treatments, and the fact that I have itchy skin on my hands and my eyelids get red. I had assumed the skin issues were due to my thinning skin, courtesy of the drugs. Good thing I had already asked my PCP about the hives in case the insurance company doubts the sudden appearance of rashes. I also checked with others at TMA - several people didn't have rashes in the beginning and were later dx'd with DM.....

At this point, I'm just confused. I guess it's time to bone up some more on DM......