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, June 10, 2005

Great news!!

I went in for my second day of my monthly IVIg treatment today feeling very nervous. It was a brand new nurse who would be monitoring the treatment, and after reading some of the horror stories from others on the TMA website I was concerned that having a newbie might result in a bad nervous, I decided against taking the Tylenol and Benedryl that is recommended, as it usually put me to sleep. Adding to my nervousness was my regular nurse who, the day before, had advised me several times to 'make sure they get someone from GI to put in the IV if she can't get it' (my veins are notoriously hard to find some days, and it HURTS having someone fish around in several different spots before finding one)...... Well, she got it on the first try, and even got it further down on my arm, leaving me free to knit. It can be a killer sitting in a small room with nothing to do for 7 hours!

As I sat there, feeling rather sorry for myself that I was stuck for all those hours and ruminating over the track marks that were beginning to make me look like a drug-addict to the uninformed, my rheumy's assistant came rushing into the room. They had already gotten my blood tests back from the day before and my new CPK levels were at 150!!! Remember, normal is considered at the 20-400 range....or maybe it's 40-200......In any event, 150 was great news!

Woo-hoo!! I was in shock and didn't get nearly as excited as Sharmone felt I should be. As she left the room, she told me to call my mother or she would. Having gotten to know my mother during the time she spent with me earlier this year, she knew that my mother would give her the reaction she was looking for!

Now, the trick is, can we get my body to maintain this without the drugs. Don't know if it was the prednisone, the methatrexate or the IVIgs that got us was probably my rheumy's "throw everything and the kitchen sink at it" approach, but it left me in a far different mood to wait out the remaining 4 hours of my treatment!

And yes, I DID call my mother right away, and yes, she DID have the reaction Sharmone was looking for. The nurse heard it across the room! Apparently, she burst into tears when she told my father. Then informed me on my way home (we're phone buddies when I'm stuck in traffic) that I am responsible for all her emotional upset this year, and it's driving my father nuts. LOL!


Anonymous Beth said...

Congrats on hitting 150! That's fabulous. You should really start feeling better soon. I find it takes a little while for my body to catch up with my numbers.

I'm still hovering over 2,000 so I'm quite envious! LOL

Whatever you're doing, keep it up. It sure seems to be working! :)

1:37 AM  
Anonymous Mark(IBM) said...

Bravo, Siobhan. I am very happy for you.

5:37 PM  

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