One step forward....I was really excited today to see that the word is spreading. Today an article posted on onmilwaukee.com regarding Myositis Awareness. This is truly grassroots effort and it took my friend Jenny getting in touch with her friend Molly to get the article written. A really great thing about the article is I could quickly pass it along via facebook as there is a "share" button right there. So around the world it will go.....that feels great.
One step in place...Today I called Tommy, my physical therapist and told him I needed to take some time off. I have had a decrease in energy or an increase in fatigue or more need to rest...call it what you like, I have had better days. Don't get me wrong, I have had days that are much worse as well. I am getting up, getting to work, but then coming home and resting until I have to get up because the school day is over and the kids are on their way home. It bothers me that I am not going to physical therapy as that is key in making me stronger but right now I am back to the place where I have to budget my energy and use it sparingly.
It reminded me of an article I read about another myositis patient where she said, "you really don't remember what 'good' feels like anymore" I do remember very clearly what 'the worst' felt like and I am not there. My legs still carry me up and down the stairs. My arms still squeeze my husband and kids and my smile is hanging in there too.
Thanks for checking in...
Kris
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I would love to discuss with you my experience with dermatomyositis. I was misdiagnosed with lupus in Nov. 1999 and found out I had dermatomysitis instead in June 2006. Luckily, it is just my skin that is affected -- no muscle involvement yet. My email address is stefanieholmes@hotmail.com.
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