Friday, October 24, 2008
If I saw this melon man coming up at me, I think it would turn me off on fruit for the rest of my life. Well..maybe for a few minutes. I'd just take out my trusty Henckels knife and lop his head off. Mmmm...
Speaking of scary, painful slices into the head, I met with a group of women last night who have what I have--Chiari Malformation Type I. I found them through a woman named Kelly who was featured in an article in our local newspaper earlier this month. She thought she was alone in Frederick, but turns out there were 6 of us who showed up. Others didn't make it to the meet-up last night, and I'm not sure how many of them there were. We all contacted her through the reporter who wrote the article.
It was enlightening, to say the least. One girl is my daughter's age, another is only a few years older than that (and has had 7 surgeries for brain related problems including CM1). Three of the women have small children and are having trouble dealing with the demands of motherhood while feeling tired and in pain all the time. We all had the common problem of having doctors not understand the disorder or try to write off our debilitating head pain as stress or malingering. There were many tears last night but also laughter. We all agree that we don't let our condition define us. But one woman's husband had left her (and the kids) because of her condition. Another had trouble with long-term relationships because the men always get scared off for one reason or another. It's a lot to deal with.
I felt so incredibly lucky. First off, I haven't had to have brain surgery yet, as two of them have, and I have a great husband who wouldn't dream of leaving me because of this. He knows I've been by his side in tough times, and he is by mine.
The two who have had surgeries had them at TCI in Great Neck, NY, where I am waiting to get an appointment. The doctors up there are the experts in Chiari and I hope that when I see them, they will be able to help.
It's been a pretty good week, though. Not too much pressure or pain, so I am plenty grateful. Maybe it's my Halloween present? Maybe I'm going into a cycle of being relatively pain-free? Wouldn't that be nice.
For now, I have places to go and people to see, and I'm grateful that driving won't be an issue. I am not dizzy nor in pain today. I have my wits about me (don't laugh) and am raring to go. Just like this little watermelon guy. Not quite as scary--just thirsty!
Have a wonderful day - Peace - D