Tuesday, October 16, 2007

A quick update with more to follow....

Hi everyone,
First, thanks Dad for connecting with the Myositis Association to find out more about the Mystery diagnosis show. Here is a copy and paste from what my dad received....

The episode is titled "Bizarre Visions." It does not specifically mention myositis in the description but does point out that LaShaun Davis will be featured. LaShaun is a polymyositis patient and TMA member. The show appears to be airing on October 15 at 10:00 pm and then re-airing October 16 at 1:00 am; October 20 at 7:00 pm; and October 21 at 2:00 am.

We recorded it at our house and I had a chance to watch it this morning before going to work.
If you have cable available I would recommend watching it. It might help you better understand what I am dealing with. There are two "mystery" diagnosis stories, the Myositis one is the second story but holy cow...can you imagine being the woman in the first story, no thank you.
Anyway, watching LaShaun's story certainly brought back many "remember when's" for me and I decided that I would spend some time documenting what happened before I was diagnosed, what testing took place and how long it took to receive a diagnosis.
That will follow but not until the kids go to bed and I have enough energy to put it out there.

I called Dr. Cohen today. I have not felt really good since last Thursday.
In a nutshell, my arms are bothering me. They are achey and tired. In addition I am feeling more fatigue. It seems to be a struggle to get up enough energy to complete some every day tasks. In church on Sunday, I noticed that I was short of breath while singing. Today after a few laps (3) in the pool I showered and got ready for the day and a return of a terrible sweating episode struck me. Some of you have had the honor of being in my presence during one of these. It's disgusting. Thankfully I was at home and not in front of clients or coworkers.
Any one of these things would not have lead to a phone call to the doctor but the combination of them and the fact that it was all within a week made me pick up the phone.

After a phone consultation she recommended I increase the prednisone from 20 mg daily to 40 mg daily and although being a couch potato is not the answer neither is spending time at the gym. I really struggle with this because I do feel better mentally (and physically while in motion, not the next dayor the next day or the next day...) when I go.

One of the things I do when I don't feel well is try and figure out what triggered it.
Here's a review of possible triggers:
1) Last Thursday I went to the gym after weight watchers and spent 30 minutes on the treadmill. I went 1.95 miles.
2) I moved my office and transitioned into my new job (could be stress related)
3) I drank wine the week before while in LasVegas and had a small glass with the extraordinary German dinner Bill prepared on Sunday night.
4) Two people on the same day asked me if the weather effected me. I had not considered that but will add it to my list.
5) I added prednisone but it's really hard to measure if it's made me feel any better.

OK, that's it for now. I think my next entry will be an overview of how this all came to be. Stay tuned if your interested or feel free to skip right by it if you don't want to relive that very hard time in our lives. Before we go there and before you skip right over it, please know that I believe more now than ever that my life is truly blessed. I am not the same person but I think I might be a better one.

Good Night.
Kris

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