Thursday, March 8, 2012

Falling down a hill

Hello everyone! It's been a long time. I have continued to go downhill. Yes, this has happened before, only this time I'm not really having "better" days. Only, a steady progression downward. I'm sorry if I'm sounding overly dramatic; that's not my intent. I guess for the first time since I was diagnosed (really for the first time since I got sick) I'm afraid. I'm afraid of how much more I will progress, afraid this will leave me permanently housebound, bed bound, or worse. I'm feeling as if I need to do everything in my power to get healthier. No, I cannot change my genetic disease, but perhaps I can get my body in better shape to withstand its assault. My diet has been horrible as of late. I don't sleep well. And, I'm terrible about taking my vitamins. I need a health coach. Any volunteers out there? Seriously, I have to get with the program and fast!

Changing the subject, I have spoken with a woman who runs a local Chiari Malformation group. I'd been meaning to call her for the past few weeks. Well, I finally did and we talked for nearly an hour! She was so nice and she's willing to help me get an EDS group going, even offering to go with me over to the hospital to get it set up! How nice that? She told me of a few people in the Chiari group who had EDS, one quite severe. I'm hoping that I can get in touch with them and offer support and friendship. For now, I don't really care if the group is small, or really, whether we have formal meetings. If we can have a connection through phone calls, facebook, etc that would still help us. I hope to have monthly meetings, but realize not everyone would be up to that; probably not even me which is why I want to find a co-leader.

I think March has come in like a lion.  A mean, pissed off lion. I was thinking back to last summer and I don't think we had but a a few storms for spring and summer combined. It makes me wonder what Spring and Summer will hold, especially considering how mild our winter was.

We only have a few more days until we find out about the job Tim's hoping to get. He had a full day of interviews (11 hours worth!) on Tuesday. We should know something by Monday. Please keep us in your prayers. If you aren't a praying person send good vibes and keep those fingers crossed!!

Thanks for stopping by.


“You've gotta dance like there's nobody watching, 
Love like you'll never be hurt, 
Sing like there's nobody listening, 
And live like it's heaven on earth.” 
― William W. Purkey

1 comment:

  1. Shari, I'm so sorry you're having such a difficult time...The support group sounds like a great idea!
    Sending prayers and good thoughts your way...