Friday, March 1, 2013

I'm very thankful that Neil (physical therapist) is so well read on Chiari. We talked yesterday about the uniqueness of the disorder and the scarcity of knowledgeable physicians, therapists, etc. I felt like a science project and he was like a kid in a candy store, soaking up everything I told him about every symptom, my history, surgery, etc. He got my blog address. He was very encouraging..saying, "You know, you need to write a book"..I said , "yeah...been working on that". So I came home from PT with a headache, but still did my home exercises. I showed Bob my exhausting exercises when he got in last night. He's like.."Is that it?" They go like this: I glance as far left as I can, hold it and think about turning my head left, but don't. I hold it for a couple of seconds then look back forward. I do this ten times, then do the right side. I'm supposed to do this five times a day. Easy right? the second glance, my eyes hurt and by number whole head hurts. So I take a break then go to do the other side. It's ridiculous how this wears me out and hurts like the dickens. Fortunately, the right side is much easier to get through.

So, I had an emotional break down after I got home from PT. Then another one on the phone with Bob. His brother-in-law, you may remember, had open heart surgery the Friday after my surgery. He's an orthopedic surgeon and he's already working 1/2 days 3 days a week. Granted, he's overseeing a resident and not doing much actual surgery..but come on! I'm happy for Jim, I want him to be well...I just had a big pity party for myself...I just want to be normal. I want this to not be so hard. I know that doesn't sound very grateful, I'm just being honest. My entire life it's never been.."Oh, you have a normal health issue that we can fix", it's always been, "I've never seen something quite like this, hmmmm". I know that's what Chiari brings to the table, a lifetime of odd, unique and painful. I know this because we Chiarians flock together. We are bound by the same lack of normalcy. I get texts all day and sometimes into the night from my Chiari sisters, not because I'm some Chiari's because we strive to simply feel normal. Just having someone, anyone, whether they are in Texas, Oklahoma, Colorado (you ladies know who you are), and whether you've met face to doesn't matter...its just having someone on the other end say, "Yes..I understand, I get it and It's okay."

Okay..enough despair. I got it nothing but positive thoughts for the rest of the day for me. Maybe it's the seclusion I've lived in for the past 5 weeks...maybe it's the wedding stress getting to me...maybe it's the fact that I have no patience with myself. Whatever it is..I'm just an multifarious conglomeration of emotional goo. And I have no idea why you would come back day after day to read my wretched ramblings..But I thank God that you do.

Have a great weekend!

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