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.

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Square Pegs

August 23, 2013 at 1:26 pm (Hospitalizations, Medical, Mental Health) (, , , , , )

This is going to be difficult to write. I almost never use trigger headings (warning people about potential upsetting topics), but this post deserves one: Trigger Warning: discussion of sexual assault, abuse of power.

There is also an anatomical image of a vaginal opening further down.

I’ve posted to Facebook my frustration over the way doctors have been tossing potential diagnoses at me left and right. At various points in time, I’ve “had” a kidney infection, an abscess on the kidney, a blood borne infection, another abdominal abscess, kidney stone(s), a pelvic infection, etc, etc.

In the course of this, I am being seen by an intern, Dr. Laing. (I am guessing on the spelling. Please note that I rarely use doctors’ real names on this blog, but for him I am making an exception.) At the time, I do not know that this is only his second day on this rotation (although he’s done it once before). He is a charismatic young doctor who looks like he’d make an excellent background character in a college library or Revenge of the Nerds movie.

Dr. Laing stops in and begins to ask me some sexual history questions. As y’all know, this doesn’t phase me at all. He is vague at first, when I ask him how this could be related to my problem. Then he tells me I am getting a pelvic exam to rule out STIs, and other problems with my magina area.

As someone who has experienced real, documented trauma at the hands of a crappy gynecologist, as well as someone who has psychological issues with strangers mucking with his bits, I start to feel a little panicky. I take a deep breath and start trying to make the situation as comfortable and “safe” as I can.

I start by asking for a female doctor to do the exam. It’s not that I have issues with male GYNs, really. I find informing a female GYN of past trauma translates into a much more compassionate and gentle experience. Dr. Laing says he will look into it; a few minutes later he returns to say he couldn’t find one but that there will be two female nurses in the room. I am unhappy (especially since it felt like he only spent a minute looking for a female gynecologist before giving up) but shake my head and accept that the intern will do my exam.

It helps the story to remember at this time that my chief complaint is severe pain in and around the kidney area on my back and side. Dr. Laing informs me we’re going to do the exam in my room, and I am surprised. I ask why we aren’t going to an exam room with, y’know, stirrups and shit. He assures me it’s going to be quick so there’s no need. He is, in fact, surprised that I am surprised.

I should have known something was going awry when he asked a nurse to get all the necessary tools, and when she arrived with them she had to give him a rundown as to what was there. I had requested he use a pediatric speculum, since we weren’t doing a pap smear or anything requiring more than a glance at my cervix. This, too, he pretends to accommodate, by leaving the room for a minute and returning empty handed. I happen to know that JH has an extensive pediatric unit, and I would bet something large that it has at least one peds speculum.

Finally, I carefully lay down, yelping at the pain in my side. Keep in mind, I hadn’t slept in 3 days because laying down was uncomfortable no matter what position – and he knows this. He decides to use an upturned bedpan to raise my hips a little, which digs into the most painful area on my back.

People are probably wondering why I haven’t refused to continue at this point. Again, I mention that the doctor is very charming, and I am honestly afraid that if I really stand up for myself I will get substandard treatment. Also, it bears mentioning that I have been the victim of sexual assaults, one of them perpetrated by a doctor. So being in this situation has already flipped me out emotionally and so I focused on being physically compliant as I could.

I lay down with the bedpan digging into my lower back. We mess around with the positioning of my legs. I am making a constant stream of pain noises and am trying not to squirm. He informs me we’re going to start with the speculum. This is not the tack I would take with such an exam; those of you who have played with vaginas know that it’s better to start with something small and work your way up, rather than the opposite. I accept my fate with a sigh.

This is when things start going downhill fast. He parts my labia and immediately pushes the speculum against my urethra.

As you can see, that’s like aiming for Manhattan and ending up in Staten Island. They’re connected, but not the same thing. Because I am in a fair amount of pain already, I just flinch away and try to close my legs. He takes this as skittishness and tries to relax me. I am somewhat non-verbal, which is exacerbating the issue. He attempts again, and this time I feel him trying to open the speculum as it is resting painfully on top of my urethra.

I react again, and this time he decides that this isn’t working so he’s going to skip to the manual exam. He says his objective is to palpate my ovaries. I tell him that many GYNs have tried to palpate me in this matter and have been unsuccessful. (My ovaries happen to be hiding in an area of my body with a lot of fat tissue.) He asks me to give it/him a try, so I sigh and nod.

Unshockingly, he takes two fingers and presses them against my urethra. At this point, I say something like, “That’s my urethra you’re trying to penetrate.” He apologizes, withdraws his hand, and then returns to push painfully against my…clitoris. That’s right, this newly minted MD thinks the vaginal opening is above the urethra rather than below it.

Let’s just skip ahead. He fails to palpate my ovariesm (not for lack of trying!), and by the time he’s done I think he knows he’s fucked up. He leaves without saying anything to me, which was good since I was crying. Both nurses who were there were shaking and holding their tongues until he left. It was validating to see and hear that the nurses were as concerned and frustrated as I was. One nurse in particular, who was my assigned nurse, went to great lengths both immediately after, and for the rest of her shift, to comfort me. We sat and talked about our lives, she brought me super secret nurse treats, and she let Rave and I go for a walk for half an hour.

Later that evening, the attending (Dr. Laing’s bosses’ boss) and the resident (Dr. Laing’s boss) came in to hear my story. I stressed that this was not a “OMG gyno exams are hurty” complaint, but a “he really should have known the difference between an urethra and a vaginal vestibule” sort of complaint. It turns out that Dr. Laing assured his attending that he had done several pelvics before; the attending wanted Dr. Laing to have another doctor assist him, but Dr. Laing went rove and did it on his own. The attending assured me that I would not see Laing again, ever, and that the attending would take a special interest in my case.

He also gave me the lowdown on what’s been going on. As I’ve written before, it seems like possible diagnoses are spaghetti strands and I’m the fucking fridge. I might or might not have had or currently have:

  • a kidney infection, otherwise known as pyleonephritis
  • one or more kidney stones
  • an abscess on my kidney
  • a third reoccurance of an abdominal abscess
  • a peritoneal infection
  • an STI or other reproductive issue
  • ovarian cysts
  • any two of these in combination

The attending assured me that we were only looking in two directions now: we can actually see the kidney stone, but it’s resting on the bottom of my kidney where it should hurt the least. However, I’m not acting like a kidney stone patient. Second, there have been a ton of white blood cells in my urine, which screams “INFECTION”; the current thought was that I had an infection of the bladder.

This meant that right after I had come to peace with the pelvic-from-hell, I had to let yet another stranger muck about in my cuntal region (or is that “cuntle”?) and do something painful. I tried to advocate doing it the next morning, but the doctor really wanted the results tout suite. (heh.)

Anyway, back to the conversation with the attending about Dr. Laing. We agreed I would never have to see Dr. Laing or deal with him in the future, and I further pushed that if I saw him again, I would scream and shout. This ultimatum, in addition to a bevy of other complaints, served me well. I haggled over pain meds in my negotiation about the exam for my bladder and won. I decided to push my luck one final time, and asked him for a standing order for a little extra pain meds when I was particularly hurty. (Otherwise, the process is kinda long: I have to complain to a nurse, who then has to call the on-call service doc and explain the situation, and sometimes that doc has to call my actual doc to verify that whatever I’m asking for won’t mess anything up. This can take up to several hours.)

So a few hours later, three very kind but nervous nurses came in to do the straight catheter. See, when you pee in a cup, sometimes you leave behind skin, hair, or other contaminants in there too. Getting a urine sample straight from the source eliminates a lot of that cross contamination. I know I have friends who get cathed for fun, but I am not one of them. Maybe my urethra is too narrow, or I just don’t enjoy penetration in that way. I was shaking the whole time, but my awesomesauce nurse held my hand and told me funny stories fro her life to distract me.

So that was yesterday. Today’s song is in a different key, a different time signature, a different genre.

From what I understand, we have definitively identified the following diagnoses as being accurate and applicable:

  • one kidney stone, resting in the bottom of my kidney
  • an infection, somewhere in my abdomen
  • severe dehydration, and even IV fluids aren’t doing much to fix that
  • severe pain in my right flank, that is very sensitive to touch?

However, I have symptoms that are not explained by any of that. So now comes the oddball testing, starting with an echocardiogram this afternoon. I’ve been assured there were be no more pelvics, though.

I’m trying very hard to ignore the fact that three different phlebotomists have tried to take enough blood for a blood culture and failed. One couldn’t find any veins, so he walked away without playing Bingo! first. The second got a good vein, but it was pushing very slowly and meekly, so they only got enough for the little-bottle tests, not the catheter test (knowing the name would likely help).

I keep trying to explain to my doctors that my medical situation, whether it be short term or permanent (anything in between is more likely), is never black-and-white. Now he can order those wacky tests the hospital wants to try out. My nurse keeps telling me I’m scheduled for an echo (which I’m pretty sure is a heart test) this afternoon.

There has been some upsides: The nurse I had yesterday when all this went down, she and I bonded a lot. We sat and talked about my separation, and my relationship with Rave, and teaching adults about sexuality; she talked about some of her past struggles and what it’s like serving the homeless population in East Baltimore.

Um. There has to be more upsides. I have my own room? (in the dingey, “historic” building) Well, I do like my ID doc – who is actually the boss of the ID doc I am seeing at their clinic. I like the resident and attending of Dr. Laing, who are caring and considerate when touching me. I am pleased that they’re taking my pain seriously, and not dismissing it outright when their theories on what’s causing it don’t pan out.

People have been asking how long I’m going to be here. The only clue I’ve been given is that the attending would be happy if I wasn’t here when he gets back on Sunday. However, some of the tests they are doing today take two to three days to finish, so something tells me I will still be here Sunday. How much longer after that, I have no idea.

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You’ve got to be kidney me!

August 21, 2013 at 11:10 am (Uncategorized)

Hey, I’m allowed a painful pun, as I am hopped up on the goofballs.

What I mean by that is, I am currently in Johns Hopkins emergency department, waiting for a bed to open up so I can be admitted.

This starts about eight days ago. I started peeing a lot – like 10-15 times an hour – and then the nausea hit. I was getting very little sleep, like 3 or less hours a night. Then my kidneys started to hurt, and I decided it was time to get thee to an ER.

Long story short, they debated admitting me then, due to my history with infections, but decided against it. They gave me a new-to-me antibiotic and antiemetic and turfed me. I mean, I am not a fan of being a patient, but it did muddy the waters some.

I was scheduled to make a work-related trip, 10 hours by car from home. If the docs told me it was no big deal, I could go without worry. If they admitted me, there was little I could do about it. But telling me that the infection *usually* merits a stay, and then setting me free, made things tough. I felt pretty crappy, but this trip was extremely important for both professional and personal reasons. Even so, I was totally looking for some external source to give me permission to cancel. I asked for and received three forms of divination, hoping to be told I could stay home.

In the end, I decided to pray. As the trip was partially in service to two of my most important gods (Loki and Hel), I prayed to them. Send me a sign, a nudge, a way to know what you want. If you want me to go, give me the spoons and energy to get packed and be ready for the trip by the time we need to leave.

The first thing that happened was, I felt an overwhelming urge to shave my head. I had been growing it out for some time and it was actually getting pretty long. But if it were up to Loki, I would be bald all the time. At first, I thought this was him taking advantage of my weakened state, but as the hair started to come off, I realized for the first time how much I felt literally weighed down by my hair. It was stringy and frequently damp from my night sweats. And I wasn’t particularly happy with it.

I also realized right away that my God phone was in much better working order. This helped me understand Hel’s point of view on the matter – that sometimes, you have to choose the riskier path to make life worth living. frequently, I make choices that rock my boat the least.

So even though I had no idea what would happen, I got my shit together and made it to MA in one piece, more or less.

While I was there, I was keenly aware of not feeling well, but had much bigger shit to think about. My wonderful boyfriend and devoted girl did everything within their power to help me get through it.

We knew there was a price to be paid as soon as we set sail for home. My symptoms went haywire. BY Monday, I was puking up my meds again. So after some discussion with some of my doctors – who, by the way, were pretty damn pissed I didn’t get admitted the first time – I limped back to John Hopkins ER.

after a grueling 6 hour wait, I was brought back and immediately shit got real. They’re sure I have a kidney infection but it’s obviously worse than first thought. now they’re doing additional tests, because some of my symptoms aren’t quite what they expected, and now they’re hunting to see if I haven’t developed an abscess on or around my kidney. yeah, that’s what I said.

So here I am, alone in JH ER waiting for a bed to open up so I can be admitted. The plan is, at the least, high test IV antibiotics (since I can’t keep my meds down) and aggressive abscess hunting. The hard part is that I’m alone. Rave spent all available time off to go to MA,and then stayed awake all night with me here. I’m waiting for a friend to come help me – I get confused and distracted in hospitals.

I do. Not. Regret my choice to go. I just, as Winter put it, can’t catch a fucking break.

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