This week’s bullshit.

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.



  1. Oh wow. I think we can learn a lot from eachother. I don’t talk or write much about my pain, as it seems to seep out in my other expressive outlets – the art and music.
    After a lifetime of misery and Drs with deaf ears, I FINALLY was forced into a situation with an MRI of my Lumbar, which was such a mess that they had to get me back in to see what was going on in the Thoracic and Cervical.
    Nothing much in the cervical, but yep … compression fractures throughout my thoracic. And the worst thing is they’ve been there since I was young – too young to know any different.
    So after finding all of this out I start getting very strange sensations in my feet and a red line down one of the nerve meridian in my hands.
    Within a couple months I have full blown neuropathy in my feet ~ pain, spasms and cramps in my toes that seem to just move around as they see fit. All the while jumping through HMO hoops to get to pain management.
    Though I thought I had found a good primary care Dr – he dropped the ball so many times due to being over-loaded, that I had to use his insurance go to to get anything done.
    I think I’ll start writing about these things. It might help.
    Thanks for the inspiration.

    • That’s terrible. I’m sorry they took so long to figure out what was going on. Damn HMOs. I know how you feel in that department. If HMOs even bother to diagnose and treat you at all, it’s like they use the most archaic form of treatment. I had a hard time getting the newest med for lupus. I had to actually switch insurances. I was lucky enough to even have that option, I feel terrible for other people still fighting to get their treatments.
      I’m glad my blog has helped you in some way. I used to try writing in a journal but it felt like a dead end. When I write online, I sometimes get feedback, and I know my misadventures of being sick must be useful to someone out there, and I find that feeling to be rewarding. Writing has been a good experience and a way for me to get stuff out so I can sort it out in my head and not feel so overwhelmed. Good luck in writing and thanks for reading 🙂

      • Thanks for the words. I try not to complain too much these days, but sometimes … You obviously know what it’s like. I was tested for lupus, as well, considering I fit into that percentage of ppl with neuropathy that have no obvious direct cause. There are a few things that the “not-so-thorough” Dr would have, could have said, “this is why”. But luckily I finally have the best Drs possible (which isn’t saying a lot, but at least they acknowledge that and don’t give me any BS. In fact, they explain all the crap that makes it such a mess.
        Thx again. Following now : )

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