This is a documentation of me going through a clinical trial for my disease called Spinal Muscular Atrophy (SMA). This trial is going to be a series of visits over the next three months. I will update everyday like a diary. I thought that this might...
Last night I got about two hours of sleep before I woke up with a massive heartburn, which resulted in me having to wake Nanny up at two thirty in the morning to burp like a truck driver. I kid you not, when this happens I think the neighbors can hear me. I ate some tums after that and went back to sleep. But of course when I woke up this morning I was cursed with the cough I get way too often. The past few years have been pretty difficult with me getting sick about three times per year, when I wouldn't even get a common cold for years. With SMA, yes, you have a weakened immune system. But I built myself up by wearing my Bipap, a breathing machine that close resembles a Cpap, and by swimming a whole lot. But something changed in the end of eighth grade, the aid that I'd had since the sixth grade was being taken away from me. I won't go too in depth with the details, but since then I've been getting sick and not feeling myself a lot.
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Anyway, I haven't felt good all day, so I'm not sure how much there's going to be written today... But I guess I should write down what's taken place today. I sort of had a meltdown this morning over a stupid thing, I think the stress of school being only a few weeks away and the fact that I'm doing this trial is getting to me. Going back to school hasn't been the most wonderful event in the world... I'm starting to sound like a real sorry-for-myself sap now *nervously laughs* I'm sorry.
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As the night continues, dad and I are watching Ghost Adventures. But I still can't shake this feeling of melancholy.
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My dog, Shaddow, is trying to make me feel better by being adorable xD
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So I just found out that I'm going to get my hair highlighted tomorrow!!! It's going to be interesting to see if it's actually going to work this time.
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I'll let you in on a little secret on how boring my life is. I went swimming today and then my dad came in and we chilled for a bit. My dog ran around like Scooby Doo, then I went to my dads house and watched Thor and then Ghost Adventures. He drove me back to my grandparents house because this is where I live and stuff, and Nanny, Bubba and I watched a movie that was quite adorable actually. I think it was called Unfinished...something...*looks up recently watched on Netflix* ah, yes, An Unfinished Life. And now I'm listening to Twenty Øne Piløts in my bed with my Bipap on while I'm writing this. Life isn't all that bad, we all have our woes and troubles. I am grateful for the people in my life, they have stuck around when others have left and I am forever in their debt because of that.
Whelp, I've made about five hundred words now and it's quarter to midnight again. So I'd better get to sleep, I'll fill you guys in on the hair tomorrow then Monday will be here and I'll be writing about my anxiety in the car trip *chuckles*
Good night, my darlings. I think I'll call you that, though if you have a better nickname than that, please comment <3
