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Archive for the ‘Immune Deficiency’ Category

When it rains, it pours.

It often seems like all the bad stuff gets clumped together in one big barrage of awfulness. This hospital stay is surely no exception.

First, we’ve dealt with a few episodes of dystonic storms. These are often triggered for me by exhaustion, physical pain, and exertion. When these three things are combined, the storms are worse. Dystonia is a movement disorder that causes involuntary movement and posturing of different muscle groups. I’ve suffered from dystonia in my left side for about 9 years. Recently, the storms have caused me to have bilateral leg involvement. It’s painful and the treatment often given cannot be used on me due to the underlying mitochondrial disorder. In short, it sucks.

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As you may have noticed, I’ve been mostly absent from the internet for over two weeks now. Following an internet snafu at our apartment that took far too long to remedy (thank you, Comcast…), I’m baaaack! And we are now the proud owners of a land-line with a Massachusetts phone number! Yahoo!

I must say that it was somewhat nice not having internet. I didn’t stress over e-mail or Facebook or even the weather. Whatever happened, happened. It’d still be there when I got the internet back. I was able to check for important e-mails and monitor bank accounts and the like by borrowing internet from friends every few days, but it was for minutes at a time and just for the essentials. It was almost as if I were back in the 1990s! And I loved it!

But now that I’m back, I’ll give you a brief update on the last 18 days, you know, in the few hours I wasn’t catching up on sleep! 😛

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It looks like Christmas came to my room and spewed red and green vomit everywhere. And I love it!

I’ll admit it: I was starting to lose my spirit a little after I’d been in two weeks, without an end in sight, and the projection of spending Christmas at MGH. I’d been poked and prodded every which way. Despite what my medical team was doing, my blood work was abnormal. And my first glimpse at freedom (the first attempt at the GJ tube procedure) failed. Fortunately, I’ve surrounded myself with people who make it nearly impossible to lose one’s spirit!

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