I woke in a lot of pain this morning. It’s one of those mornings that happens once in a while with me that no doctor has ever been able to explain. When it happens, I’m in so much pain I’m literally trembling, my hands shaking, unable to stand or move or even really think. Those who have seen me in this condition say my speech is also slurred during this time, but it’s hard for me to know, because I can’t even think when I’m like that. I can’t get to a doctor when I’m like that either, because I never know what’s bringing it on, when it will happen or how long it will last. Even if I could somehow get my brain to work during those times, I’d have no ability to get up, get dressed, call a doctor, get an immediate appointment and then get to the office all before the pain either goes away again–and that’s assuming I can get to the doc the same day, a rare occurrence, if if could even happen at all.

And then what? So the doctor sees me like that, but they schedule testing, and it’s not like I can make it happen on the spur of the moment so that I’m in a flareup during the test.

Sigh.

It’s tough. It’s tough never knowing what the day will bring when I open my eyes. It’s tough never being able to plan for anything, because of that one morning I could wake up and not be able to even move or think. It’s tough when people in your life don’t understand, but even worse when people through work or who aren’t as close to you don’t understand, because they don’t know what you go through.

So what do I do when this happens? I don’t do all that much but lie in bed and moan and sleep. But if a family member gives me a pain pill and brings me my morning meds, I’ll take all of them and wait for the meds to kick in.

Eventually, and it takes about an hour for this to happen, I’ll feel this fuzzy feeling starting in the back of my head, and then, like dropping a sheer veil over my head from above. It touches the top of my head and then slowly flows down and gently covers me in a comforting haze. I’m so grateful for the relief of pain that I don’t even mind the fuzzy brain that comes with it, at least, at first.

And I know any day that starts this way is not going to be a good one for the entire rest of the day. I will fight off the pain all day, and I will stay in a foggy haze all day too. Sometimes, this happens just one day and the next day I ‘ll be fine. Other times, it’ll happen two or three days in a row, and then just go away like it had never happened.

I don’t know. I’ve mentioned it to just about every doctor I’ve ever gone to, and for some reason, none of them seem interested in it. I’m interested in it. It hurts. Bad. It’s scary when it happens, for both me and my family.

I ran into a website the other day that is crowdsourcing medical diagnosing. I’m curious about it. Might put this up on there and see what it says… see if anyone else can come up with any ideas.

In the meantime, I’m going to start writing on this blog again, sort of like a personal journal. You guys can read along if you want to.

Love and stuff,

Michy