100 Day Long Week

I clearly haven’t posted in a while. I have a decent excuse, I swear. The past week or so I’ve been sleeping (or attempting to) for about 20 hours a day. Some kind of a bug or something I think. It’s starting to slowly ease off now but I still feel exhausted all day long. The fatigue is accompanied by some very intense headaches (to add to my usual ones) and the feeling that my entire body, from head to toe is bruised. The lymph nodes in my neck on the right side are swollen but that’s nothing new. Actually, to be completely honest it feels like waking up with the worst hangover ever. Gravity feels a thousand times stronger than usual, my pillow feels like a magnet and my head the metal.

I had some blood work taken on Thursday to make sure it was nothing serious since my parents were going out of town for the weekend and I’d be home by myself. I got a call on Monday that my doctor wanted to see me, “nothing urgent” so I have an appointment for next Monday. It’s got me curious as to what she wants to see me about, maybe the blood test showed my iron’s low again or something like that. To be honest I’m hoping it is because then I’d know why I always feel so ill (not just the past week’s kind of ill).

My eye doctor gave me a stronger Pilocarpine drop to see if that would keep my pupil small for longer. This drop is 4% instead of 2%. I didn’t even know there was a stronger one until he prescribed it. I haven’t tried it yet, I’ve been waiting until my head hurts a little less, I don’t want to add the eye ache to it. I have an appointment with a connective tissue specialist next Wednesday. Through him we’ll see about booking an MRI of my spine. It’s been about 5 years since my last one.

A few weeks ago I sat down with my town’s local newspaper and did an interview about what my life’s been like since I was diagnosed and how critical raising awareness about these disorders is. The article was recently published and I’m really proud of how it turned out. I’m not sure where my copy of it is hiding right now but when I find it I’ll post some of it on here.

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