Monday, October 20, 2008

Lauren Hillenbrand

I've decided to request another IgeneX test for lyme from my doctor. I want to see if the lyme has reactivated or not.

I need to stop focusing on the goal of getting better. Who knows how far off in the future getting better will be. Who knows whether or not that's in the cards for me. Statistically, the odds are in my favor-that is, if I get treatment for the right pathogens.

Worst case scenario if this is it, I need to find a way to live my life in spite of being housebound. I spend so many hours of the day trying to find answers. Part of it has an obessessive quality that lately leads me to a sense of feeling overwhelmed and despairing at the lack of ways to diagnose and treat this illness.

I thought about Lauren Hillenbrand who wrote Sea Biscuit. I haven't wanted to learn much about her mainly because I'm afraid that I'll identify too much. The severity of her illness frightens me. Tonight I decided to start doing some reading about her. I think I've maxed out my coping skills over this past year. I'm into year 2 of this illness. I'm finding the second year a bit frightening without my protective layer of denial of hoping that maybe extended rest and a few supplements will get rid of this. Unfortunately, part of me still held to the belief that a cure would be simple if not a bit long. I had hoped I would be one of those people that would spontaneously recover within the first two years.

Lauren Hillenbrand has brought me some hope tonight. In an interview she states, "No matter what happens with this illness I think it is possible to carve out a dignified and productive life from it." Here's more from an interview I read:

(Interviewer): What would be your advice for people who have been diagnosed with CFS?

It's such an individual journey. But what I would say is, no matter what happens with this illness, I think it is possible to carve out a dignified and productive life. This illness takes everything away from you, and you have to find completely different ways to define what your life will mean to you. But I think it's possible to make a good life. I have been happy in the time that I've been sick. It requires a real redefinition of everything, but I think it is possible to do.

(Interviewer): You sound at peace with your situation.

I wouldn't say I'm at peace; some days I really struggle with it. I have times of despair. When my vertigo came back and I lost the ability to write, it was a very difficult thing to adjust to. But I have learned to have very low expectations. I am not somebody who thinks I am entitled to good health or to a good peaceful happy life.

We are fortunate when we have them, but when we don't have them it's not that someone's taking them away from us. It just happens. [This attitude] has made it easier for me to deal with [my illness] than someone else who thinks, "Why me?" I've never thought that. CFS is definitely a very difficult thing to deal with. I go through times of real despair, but I pull myself out of it and keep going. I have no choice.

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I read somewhere that she stopped focusing her life on trying to cure herself but rather decided to live the life she had. I'm trying to find out how she is doing now in 2008 but can't find any information.

I'm still alive. Maybe I can find a way to live with this and live a rich life at that. It won't be easy.

Thank you Lauren Hillenbrand whereever you are.

And thank you to, to Renee and Sue Jackson for continuing to visit this blog. And for all others who suffer from this. Though I'm sorry that you all suffer too it's nice to know there are others who are on this journey.

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