3am ramblings

My ear decided about an hour ago to start threatening another Meniere’s attack. Between the anxiety that creates and the discomfort sleep is awhile off. I’m trying to just get back into blogging and reconnect. It’s hard because bad news and a bad mood is not something I like to write about. I’m very solution focused in what I like to put out into the world, and I keep the ugly times to myself. I recognize that is unhealthy, and I’m finally trying to break that pattern.

Friday morning after my post I realized I was not going to make it into work for the second day in a row. This is always stressful since I’ve had to go out on disability twice, and take extended sick leave too many times. I always fear not having the will and/or physical ability to go back. I always feel like a failure when I call in, even though it is really amazing the amount of bullshit I go through with my body on a daily basis. I have to remember it is an insane amount of willpower and strength that keeps me working at all. I say insane because I know I regularly push my body past its limits. My routine weekend “comas” are proof of that, seriously it’s not unusual these days to spent 18 hours at a time passed out. The Monday morning question of “How was your weekend?” is always a rough one.

This week my body gave out a few days early. Though between Xanax, Meclizine and the shear stress of a Meniere’s attack I often take a long hard nap afterwards.

I made some progress on my delirious Friday. I broke down and cried a bit, which I probably should do more since it gets me into action mode. I finally worked up the courage to e-mail my Rheumatologist. I wrote up all the awful since stopping the Plaquenil and then the whole antibiotic debacle. She really ain’t great about putting the pieces together. She wrote back “Since there was no improvement on Plaquenil and your bloodwork is negative I still don’t think your problem is autoimmune”. I just about slammed my head into my keyboard, and cursed a lot. I then managed to write back as kindly as possible, “Sorry it wasn’t clear in my message, but my symptoms worsened AFTER stopping the Plaquenil”. Then she went Oh I guess I should re-review your records.

I don’t like spelling things out to doctors because I’m then inserting conclusions and possibly omitting important details. It wouldn’t be a relationship ender if it didn’t take months to get an appointment, with no wiggle room to get in if I’m having a problem. Thankfully without my saying so my parents, boyfriend, and nurse care manager all said that it was time for a change. So I now have an appointment with a new Rheumatologist right by work on February 3rd. They managed to get my notes from Mercy in less than an hour, whereas Hopkins took from weeks to never depending on the doctor. So I’m feeling confident.

I hate to jump to conclusions but once again it’s beginning to look a lot like Lupus, in spite of the bloodwork. A month after stopping Plaquenil my pain became debilitating and I had to go back on narcotics, and then at 6 weeks my fever comes back. At 2 months my joints start seriously misbehaving. Now I’m having a “Lupus reaction” to the antibiotic. Hmm . . .

I don’t think it’s necessarily straight up SLE, though my body clear seems to be fighting itself in a similar way.

 

 

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