Wednesday, July 05, 2006

A Flippin' Hug

During the month I was away from the keyboard dearest one did get some answers to his health issues. After one particularly agonizing night he was able to get a same day appointment with a surgeon. He was diagnosed with bruised ribs and cartilage with some (temporary)nerve damage. Whew. So much easier to deal with than what could have been. The surgeon said it was like looking at the ribs of someone who had been in a car accident. Dearest one had fallen outside more than a month previous, hard enough to knock the wind out of himself but hadn't really thought much about it. They think the nerve damage prevented him from feeling the pain until the nerves began to heal. He is slowly losing the need of using pain killers to function. We are grateful. They said it can take 3 months to heal and that broken ribs are easier to live with than bruised ones. The CT scan of his innards is still scheduled for next month as a precaution.

I've been processing my own medical appointments from last week. The good news is that I have improved my exercise capacity from two and a half minutes on the treadmill to six minutes. I was pretty pleased about that. It gave me hope.

I had a satisfying visit with the geneticist about my EDS Type III. It was such a relief to talk to a medical professional who got it. He understood the frustrations and limitations I deal with on a daily basis. I gave him a copy of the spoon theory and he photocopied it so he can share it with 200+ patients he has with EDS. He told me that doctors need to think outside the box with EDS. We spoke specifically about the one test I was going to have done the next day (and that came back worse) and his view that I was entitled to an explanation - an investigation about where the actual problem was originating. This was exactly what the doctor I saw the following day said was simply not going to happen. They were looking for things they could fix and because mine wasn't fixable it became an "oh well" moment. Nor was he ever going to repeat the test that came back worse. Great. Just about one fifth of my blood is going through my system without picking up oxygen but because they can't find out where that is happening in my body it's a non issue. My blood oxygen levels continue to decrease but the mystery of that finding coupled with improvement in other tests translates into it remaining a mystery.

It has taken me until today to process this all and decided how I am going to respond to it. The thought that keeps coming to me is to deal with what is. That I can do. I have to trust that when the oxygen thing starts creating havoc in my body in other ways they will take a look and hope there won't be permanent damage by then. The geneticist did warn me that even if they could find the source of the oxygen shunting they might not be able to fix it anyway. EDS causes problems with blood clotting and surgery is always a risk.

I see a cardiologist at the beginning of next month to discuss some of last week's tests and I have some questions to run past her. If the shunting is happening in my heart there is nothing they will do anyway. Dealing with what is is what I am going to focus on. Forward. That is how one doctor I saw last year said I needed to face. I have worked hard since then to shift from fixating on what I can't do to doing what I can. Days like today it's easy. Give me a day where I can't afford to use up one of my spoons washing my hair and it isn't. Having one doctor listen well to me and talk to me like a real person was good. Having the other doctor treat me in a dismissive manner pissed me off royally. At the end of the day I still get to choose my response. Flip the one doc the bird and give the other a hug. Ha. And beyond that deal with what is. I can do that.

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