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

Tuesday, March 21, 2006

Cooow tippin'!

Let's go coow tippin'! Cooow tippin'!

What the hell?

That was my reaction when I first heard this refrain playing overhead in my bookstore.....What in the HELL is that, and why are we playing it?! Turns out it was from the Little Willies cd - Nora Jones sings on it, but doesn't headline. I don't care WHO sings on it, I have absolutely no desire to listen to anyone warble those words to a tune. God help me!

My Dad is evidently excited to have me visit downtown Fort Worth. At 10am and 2pm they send a bunch of cows (longhorns?) running down mainstreet. Poor cows. What a life - running back and forth. I wonder who gets stuck picking up the crap?

There have been thunder and lightning storm for the past three days....along with an amazing amount of rain. I'm still floored that so many people think of rain when they think of Seattle. So far, I have lived in 4 states with awesome rainstorms, 2 of which get more annual rain than Washington! (shhh! Don't tell anyone, or more people will move to the Northwest and it'll get even more crowded and expensive than it already is!)

Got sick last week. A cold. No big deal, right? Well, since my body has decided to become more obnoxious these days, I wound up with a balance problem. I would be standing still, then suddenly keel over to one side. Walking was a delight - I looked like a drunken sailor! When I couldn't get in touch with my neurologist, I went to the ER. This balance thing was scary....They ran tests - blood, ct, x-ray. (I wonder if I glow in the dark now?) Nothing showed. I sat there for SIX HOURS waiting for the doctor to come back, getting more and more hungry and impatient. I finally decided to just leave - they could call me with the results, which the nurse had already told me were clear. I wobbled my way to the doors leading to the waiting room and was completely stunned to discover they were locked. Locked. What was this place? I was berating the receptionist when the nurse came back. "Where are you going? Where are your papers?" Papers? How the hell should I know? I just wanted to go home!

Never did see that doctor again. They just gave me a prescription for dizziness (the side-effects to the medication? drowsiness and dizziness. Huh?) and finally cut me loose. I think they were as glad to see me go as I was to leave. Go figure. Three frustrating days later I got a pressure sensation in my left ear - you know, like you get in an airplane? I popped my ear and boom! Dizziness gone. Eight days of not walking straight and all I needed to do was pop my ear??

Feeling a bit grumpy this week....can you tell? Hope your week is going better!

Friday, March 10, 2006


Wa-hooo! My latest CK levels came back at 700. The IVIgs are working the magic again! I am so excited because my neurologist took me off the chemo and cut my prednisone in half. It'll probably take me a year to get off the prednisone, and he warned me that I might never be able to get completely off it, but having so much of that poison I was putting into my system every day taken out has me beyond pleased. Now, I just hope the insurance company finally agrees that IVIg is the only treatment that works for me.....I have a feeling the $15,000 monthly bill will make it a hard sell :-(

Now, how long will it take to get my hair back? How long until my face looks normal again?? I want ME back!!!

Ok, ok, enough whining.

An old friend was in town this week, and she was so sweet! Her only comment when seeing me was "Yep. You're on prednisone all right!" We had a great time. It takes another dog lover to tolerate dinner where you have to push a nosy dobie away, and to appreciate gossip taking place over the bodies of two dogs luxuriating in the rare opportunity to each have a human to themselves. I think Teddy and Tasha were more upset to have her leave than I was!

She fell in love with both, of course, and understood why I couldn't let them put Teddy to sleep, despite his homicidal tendencies. You're the best, Cyd!

Wish me luck! I'm trading in a swollen face, thinning hair, deteriorating bones, damaged liver, etc etc for track marks. Fabulous trade-off, in my opinion!! LOL Thank GOD we can now convince the insurance company that IVIg is the way to go!