I’m not a toy

Trying times in the land of K.  Yes indeed.  Unless you’re one of half a dozen people on the “outside” (it’s very much like prison) who gets regular updates, you should count yourself lucky.  I feel bad for anyone who has been sucked into this shit-storm vortex right along with me (I’m SORRY!!!).

When am I getting out?  I’d like to know the answer to that question as well.  Now that I’m here and I’ve been here for weeks and will likely be here for several more, people gets ants in their pants and feel like they need to do something with me.  Either to pass the time or because I’m like an exotic animal.  They all want to take a stab at my innards.

If it weren’t for the one seizure I had, I wouldn’t have been introduced to Dr. Neuro.  I was happy to let things stand.  “Thanks for the drugs, nice chat, don’t come back.”  Oh no, that’s not good enough, is it?  When I’m asked questions about my symptoms, I don’t think twice before answering.  Perhaps I should.  When one mentions neuropathy and a spectrum of neurological symptoms tentatively blamed on malnutrition, it now becomes his job to carry the torch.  This means we go back to square one.

Square one, after my deficiencies were corrected the first time, was to check for things affecting my central nervous system, most notably MS.  I’ve been checked for MS three times already.  It’s not frickin’ MS.  “I’d feel better if I at least ordered an MRI.”

That MRI was ordered over a week ago, but I was sort of tethered after I crashed.  Monday I got off of vent and I had a decent 24 hours, at least by my recent standards.  Given that I seemed to be stable, what better time to have me take a nap inside of the Daft Punk tube?  I do have a tendency to fall asleep, which is a bit odd when even the slightest noise usually wakes me up.  Maybe it has something to do with all of the fluid in my body vibrating…it’s like a very deep, gentle massage.  At any rate, I survived, was able to keep the coughing to a minimum, got shipped back to my cell bed and was hooked back up to R2D2 (now that I’m on continuous renal replacement) and my hanging bag of “food”.

This morning Dr. Neuro stopped in for a chat after the rest of the quack squad was done trying to get me to consent to some shit (again) that I’m still undecided about.  This is when I expected him to say “you were right, it’s not MS.”  He didn’t exactly say it’s not MS, but he didn’t say it is MS either.  My brain was completely fine, normal, and very much there, despite what some people think (myself included).  Where it got interesting is that it picked up hyperintense signal and swelling in my left optic nerve (this has historically been my crazy eye – mainly just dark spots in my vision, some transient blurriness, and pain around that time ‘o the month), and in two sections of my spine – c spine and t spine.

What makes it even more interesting, the places in my spine are several segments long and span the entire width.  This is usually associated with transverse myelitis, and optic neuritis is can be an early finding in MS.  The fact that there is zero brain involvement still makes it likely that these are nutritional myopathies or even drug toxicity, but he ordered labs and has ordered more tests to be done when the mood strikes him and when I’m able to tear myself away from my machinarium long enough to visit the bizarre land of neurology  Another thing it could be, we’ll hope it isn’t.  As I understand it, it’s worse than MS.

I’m not at all interested in pursuing this because I’m too preoccupied trying to adapt to a constantly changing set of circumstances.  As fucking delightful as I am, I think doctors sometimes forget I’m not a toy.

8 thoughts on “I’m not a toy

  1. This really sucks Kara. Remind them you aren’t a toy. (As if they would listen)
    I didn’t know about the renal stuff. Can’t get a break can you?
    I hope it gets better faster than anyone expects.
    Thinking of you.
    Sending virtual hugs. {{{HUGS}}}

    Liked by 1 person

  2. I truly hope this neuro dude is in it to help you and not to use you as his newest puzzle to piece together for fun. I’m glad to hear you’re still sticking around and fighting through hell and at this point it sounds more like you’re frustrated and (obviously!) tired than anything else. I think honestly my least favourite part of being stuck in the hospital is that you’re available to ‘them’ whenever ‘they’ want you. I hope things continue to settle out and that you are able to keep up your mental strength through all of this. We’re rooting for you. xoxo

    Liked by 1 person

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