So much has been happening and so little really has happened that it's hard to sort through it all and write it down. Today is a day of organizing - and I don't want to do it. So I'm gonna take a break before I start.
The other night I watched a documentary with friends of a woman who lives with cancer...Crazy Sexy Cancer or something like that. It was interesting. She documented her life - and live she did. Sometimes a little eccentrically. She went on crazy diets and did lots of alternative healing things. It made me think about trying some of that. I might go to China for eastern medicine intervention...my sister brought that up a while ago. China's nice.
But the thing that stuck with me most is something this chick said in the first few minutes of her show. That soon after her diagnosis, fighting cancer became her full-time job. I don't have cancer - thank goodness - but right now, fighting the illness I have has certainly become my full-time job. I related to her on a lot of other levels too...but I don't have cancer. If I did, it might be easier to explain to people. People "get" cancer. They don't as easily "get" this stuff. And frankly, neither do I.
It's all so ambiguous. And when my doctors don't even seem to understand the diseases they are treating me for and/or trying to diagnose me with it drives me bonkers. I learned a long while ago that "medical science" (especially related to autoimmune disorders) is really a lot of sophisticated and educated guess work. And likewise, doctors are a lot of really educated people with different opinions. But even gaining that knowledge years ago leaves me broken and wanting answers from them where they don't have them to give.
It's been a week since my spinal tap and I've been all over the map emotionally. Mostly I've been angry and sad. I hate waiting on results. Not that I haven't been here before, it's just so challenging to wait and not know what that piece of paper will say. I've tried to get out and have fun but most ventures at such turn out in tears. Like Sunday at Ravina with my roommate when Diana Krall sang love songs that made me realize I may never find it...oh the tears! I told a friend the other day that I never realized how much energy it took to have fun. When it's painful even to laugh, having fun is just so much work. I'm trying not to take fun moments for granted and really to enjoy the small moments of blessing that do come through these harsh and sorrowful places I'm finding myself lately. That's a lot easier to say than do right now...and though I like to say I always choose joy, honestly it has never been such a struggle as it's become in the last few months.
I could get the results today and I kinda feel like I'm just waiting on these results so my life can start falling apart. Or not. But if the results are negative that won't explain why my body is falling apart. And if it is negative then there will be more tests. Actually, there will be more tests no matter what - so that's just peachy. I love tests!
I go tomorrow for another one. It's called a Videonystagogram. That link will tell you a bit about it. Hopefully this will pinpoint why I've been spinning for a month. However, the doctor doesn't really think it's to do with my ears...so maybe not.
Who knows. I don't. Oh well - back to waiting I guess.
Back in college, in 2004 when blogging was hardly even a thing yet, I was here. Blogging before blogging meant anything to anyone. You can look in the archives for my past writings, but it was much more like a journal in the past. When we started fundraising, I messed around with the idea of launching something new for this new phase of our journey but actually hated that idea. I am a sum of all of my life and so much of it is here already. So I'm keeping it here. At least for now.
My main focus these days is blogging about our newest journey into the bizarre and wonderful world of gestational surrogacy. Posts dated 2013 and forward will trend heavily toward that journey. I don't promise everything I write will be about though. There might be other things that sneak in occasionally.
Please come along our journey with us. As the saying goes, "The more, the merrier!"
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