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

Friday, March 10, 2006

700!!!

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!

2 Comments:

Blogger franco said...

Nice Blog :)

7:06 PM  
Anonymous Anonymous said...

Siobhan,

Let's connect soon. Hope you're doing okay with the IVG. Glad you're off the steriods. Let's talk soon. I was thinking about you the other day, I'll have to share my dream. Trying to get to Texas in July. I would love to see you. Lisha

4:58 PM  

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