My cine MRI flow study is scheduled for October 7th. It’s similar to a regular MRI but you wear a cardiac monitor that will display the pulsing of CSF fluid in your cranium (spinal fluid pulses with your heart). They’re looking for blockage, most likely in the cerebellar/posterior fossa area. Also, I was surprised today when they said the doctor also ordered another MRI of my C-spine. I’m not sure what he is looking for there, I would imagine he is checking out the pocket of fluid there again, but I also have a slightly bulging disc there too. He pointed it out to me in July but said it wasn’t anything to worry about. I do get these electric shock pains in my neck sometimes that run down my back, like a nerve is being pinched. So if the bulging disc sits on a nerve sometimes, that would explain it. It gets worse on hot days, which makes sense, my muscles tense up more on hot days.
I wish it was a closer date than Oct 7th, but that was the soonest appointment they had with nurses available. I hate waiting around for answers. I’m really not good at dealing with everything being up in the air and not knowing what comes next. I feel like I will be mentally pacing back and forth until then.
In the lupus department, my rheumatologist said that my blood work is the best it’s ever been. My white cell count is up now, too. I’m still having nerve pain, tingling, numbness, and itchiness. The itchiness is the worst of it. The doctor is going to give me hydroxyzine for it. She asked me if I had tried benedryl and claritin, but I tried to stress to her that it’s nerve pain and not allergies. Pain killers make it go away, but I can’t take them at night because they make me wired. Getting my point across to doctors can be really frustrating sometimes. I’m me. I know what is going on with my body most of the time. I feel like they look at me like I have 3 heads when I tell them my itchiness is nerves, and my lungs hurt because of acid reflux. But it’s true. It’s not that hard to figure out.
All in all, my rheumatologist has been driving me nuts. She means well, but she’s always been a pain in the ass. She actually asked me to call the pharmacy to tell them to call her so she could tell them to fill the prescription. That’s the weirdest request I’ve ever heard, and the pharmacy thought it was weird too. Now I have to fuck around playing phone tag to make this prescription happen. “Tell them to call me” is her favorite thing to say to me. I get tired of doing her job for her sometimes, especially because nobody ends up calling anybody. I know she is busy, but she can’t possibly be so busy that I have to call people and tell them to call her. I don’t have the energy for it.
The thing about suggesting benedryl was irritating. Doesn’t she think I would have tried that on my own first, before calling her and being on hold forever? She makes me feel like I am a pain in the ass sometimes. I gotta be honest too, I don’t want another pill. Pills don’t help as much as one would think, they just trade a symptom for a side effect, and you have to decide which one is easier to deal with.
I thought I was getting sick again over the weekend. The migraines flared up, my body temp was outta whack, and my pain everywhere peaked. Turned out to be a lupus flare instead. It feels like a cold when it first hits you. I’ve been pretty tired, and I haven’t been able to play my mandolin. I’m pretty stressed out. It’s probably triggering my flares.