I’m The Fridge

August 25, 2013 at 12:29 am (Chronic Pain, Hospitalizations, Medical, The Journey Towards Diagnosis) (, , , , , , , , , , , , )

…and the diagnoses are the spaghetti.

Still at Johns Hopkins, and it looks like this trip is going to end very unsatisfactory. After being absolutely certain that the problem lied in my kidneys, they have now ruled that out completely. I don’t really understand how, as some of my symptoms are unmistakeably kidney related, but the doctors assure me my kidneys are just fine, other than the small stone that is “in a place I shouldn’t be able to feel it”.

So today’s crazy noodle is some sort of lung issue combined with neuropathic pain. The chest x-ray they took showed that part of my right lung is not getting as much oxygen as it should. Of course, this could easily be explained by the fact that I’ve been having crippling flank pain for over a week now, forcing me to take shallow breaths, but of course that would be too easy.

From what the doctors said, it looks like their plan is to run a few more tests, let a few test results come back from the lab, but otherwise begin the transition towards discharge. They’ve already lowered my pain meds; normally I’d be cool with that, except around dinnertime I got another giant stabbing, burning pain in my flank and now nothing the nurses can give me helps at all. I spent most of the night sitting still in the chair, trying hard to find a position that doesn’t make me cry. Gah.

What really upsets me though, is that the doctors are already talking about how I should chase this problem down as an outpatient. However, and it’s not their fault, but I can barely keep up with all the doctor’s appointments I have now. Between not having a regular driver who can bring me from Hagerstown to Baltimore, not feeling well enough to leave the house, not having the money to fill any more prescriptions or other medical shite thrown in my direction, I don’t know what the hell I’m going to do to chase this down. They’re talking about attempting an MRI again, although this doc says she knows of a few machines that might accommodate me better than the one here. The intern stopped by this evening and asked me a bunch of questions that were dancing around the idea I might have MS: this is one of the most bandied about diagnoses I’ve heard since this all began, but the diagnostic criteria are either a) spinal or brain lesions on an MRI or b) ruling every other disease on the planet out first. I might actually be getting close to the latter, these days…

But I have to say, this hospital stay has been exceptionally hard on me. It’s a combination of factors: I’ve been alone more; every time I feel like I understand what’s happening with, and to, me the rules change; I’m in the “historic” building this time (if you think the 1970’s were “historic”) and the room isn’t as cheerfully appointed; I haven’t been able to eat or sleep like a normal human being in more than a week; oh, and let’s not forget Dr. Laing’s shenanigans. I can’t recall if I’ve ever secretly planned to sneak out of a hospital AMA before.

I also am feeling this crushing weight on my heart because, for so many years, loved ones were pressuring me hard to seek out Johns Hopkins in hopes they would be able to solve the greater Del mysteries. Now that I’m here and in the reality of it, people are constantly asking me why. Or why I haven’t moved on to somewhere else. Here’s the truth of it: it’s really not that easy for someone like me to up and move all of his health care around. I mean, I’ve been in Hagerstown for just about a year and I still have at least one doctor in Germantown I have yet to find a counterpart for. Getting my pain management shit transferred was a big deal (although, another benefit of having suffered through the wean is that if I don’t like what his next move is, I can likely find another pain management doctor fairly easily now), and now I have a huge amount of data here referring to my abscess adventures.

In fact, I debated going to the Hagerstown ER when the flank pain didn’t get better. I figured any hospital worth it’s weight should be able to heal a kidney infection, right? But the more I thought about it, the more complicated it got. We’d have to get all the office info for my JH doctors; they wouldn’t have any of the information about the abscesses; they would have to get all my CT results so they could compare now with before; and of course now that we know it isn’t a kidney infection but something more difficult, I’m glad I didn’t.

I have decided, however, that I am using the next few weeks as a time of omens. There are some big questions on my plate that I have been very slowly compiling data on, and depending on how this plays out some of those questions will be easier to answer. For example, if one of the doctors decides to go gung ho on finding MS or something like it, I would be more likely to invest and take the long route. And that’s all the hint you’re going to get.

But for now, I have to figure out how to sleep when my back and side on are fire.

3 Comments

  1. Maia said,

    I was a bit confused by the title – we Brits don’t put spaghetti in fridges!?! But I hear what you’re saying. It sounds so very difficult, especially that you’re expected to pursue things yourself instead of your doctors managing things for you. My thoughts are with you. Keep paddling. And if you find yourself in practical need, please ask for help. I shall be cross if you don’t. ;-) All the best for now. M x

  2. Virginia Carper said,

    Reading your saga in and out of the hospital reminded me of mine and what I learnt from my mother, who was in nursing for 30 years. There is a lot that is simply guesswork and the Hospital is just a holding place until they can agree on something. I think doing Divination is probably the route at this point to figure what your Gods are telling you. I discovered that after my brain injury, that certain Gods had particular missions in mind for me. I had to find out what. Now I still have the TBI, but a least I have a clue where to ask for Help.

    My mother would call your predicament, The Three Stooges Disease – since it is as crazy making they are. Good luck!

  3. Meli said,

    I understand not wanting to move your healthcare around, it’s a logistical nightmare.

    when I had right flank pain my doc was sure was kidneys, I had to chase the wild goose, 8 months later they finally diagnosed me with gallbladder disease and “silent stones.” which would be a great band name, incidentally. I had periodic GB inflammation, not steady, it kept getting missed.

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