Brain Pong Psych Out

 

First order of bi’ness; I dragged myself into urgent care this morning against my hearts greatest desire to remain sandwiched between the softest, fuzziest blankets in the world.  My wbc’s were retarded high, and lactate was a little elevated.  Electrolytes were all out of whack, so they gave me a banana bag, plus two additional liters of fluid, some bicarb, calcium, and other shit.  The doc started the inpatient transfer process before I could say “what the fuck”, so between manchild and me, we decided to nix it and fill out an AMA discharge.  Blood, urine, and fecal cultures were taken, and if there’s a problem they’ll recall me to the ER.  Those three liters of fluids should keep me going for the next day, at least.  And by going, I mean…well, you know what I mean.  I’m a super pooper.

The rest of this is inconsequential, but may give you a better understanding of why I’m inclined to hate my brain.  Read it, or don’t.  That’s your prerogative (holy shit, I’ve been spelling that word incorrectly FOREVER – there are two R’s!).  Godspeed, gentle-person, should you continue reading this drivel.

giphy

I drafted a piece of garbage about cachexia, which I may or may not actually publish because I don’t show my underoos off to just anyone.  I suppose this means I have some skills of reasoning left.  I was looking for my last DEXA scan report that was done in the deep south, the one before the last one that told me my bones are weak-sauce.  At 84.4#, and 9.3% body fat, I was in the 1st percentile for my age and height.  That means that out of all of the females who were 31 years old, and 66 inches tall, only one percent of them had less body fat than me.  I was a total boner.  Sick.

In order to find my DEXA scan reports, I had to dig through aaaaall of my paper files, which is quite the undertaking.  Papercuts galore!  Instead of zeroing in on what I was looking for, I started reading all of the old doctor’s notes I have.  They had no idea what the hell was wrong with me for a while (I’m pretty sure they still don’t), but one thing popped out consistently (and I suspect any of my current doctors will notice this too – and then proceed to treat me like shit).  “We don’t know what the fuck is wrong with her, but we strongly suspect it isn’t physical. (slightly embellished for impact)”  Hmmm, like, it’s all psychological?

Then I popped in the disc of ALL of my records from 2012-2014, and it was the same story, “still strongly suspect Crohn’s ileitis, consider evaluation for eating disorder in light of profound weight loss.” -GI

“She vehemently denies having an ED, though has admitted to food aversion and appetite loss as a result of symptoms.  Offered Remeron to help increase appetite, but she declined.  Dr. J and I have entertained the idea of an eating disorder or other psychological factor being the cause of her illness.  Recommended admission to ED treatment facility in ATL, but given patient’s recent weight gain, we agreed to give it a few months.” -PCM

Fuck-ers.  All of them.

Then I reminisced about last year, when I was all by my lonesome dealing with my stupid fucking malfunctioning body.  At every admission I was tested for diuretic use, laxative use, and even accused of overdosing on potassium supplements.  I was poked in the brain by psychiatrists, and started to believe that maybe I really am crazy.  They sure as hell seemed to think so.

At this point last night, I hadn’t slept for more that a half a dozen hours over the past 4 days, my brain had been shat out, and I found myself in a very strange mental space.  The one where I start to make connections that may or may not actually exist.

Let’s forget for a moment that I have lab/imaging confirmed disease processes, and focus on the patterns.

I was all out of sorts, with the delirium of sleeplessness, the gastro fuckeree, and a fantastically awful headache and stiff neck.  Manchild came into my lair to say goodnight, and we had a little chat.  I discussed wondering if my problem isn’t completely psychological.  How I had read through doctor’s notes and found that all of them suspected mental illness, and every doctor who reads the old notes henceforth will only see this, because it’s the one thing that was mentioned ad nauseum.  It means I’m fucked.  It means every doctor who sees me will automatically operate under the belief that “she’s a crazy person”.

The second pattern is when my illnesses tend to be at their worst.  This one isn’t documented by healthcare peeps.  This is all from my twisted brain.  I weigh nothing, pcm gives me zofran for nausea.  Weight gain is minimal.  Pcm gives me ultracet for abdominal pain, weight gain takes off (cue the awful fucking refeeding syndrome that will lead to my eventual nephropathy dx).  I took ultracet for MONTHS before we moved.  I could eat, and since I was able to eat, I had more energy.

The thing about tramadol, is even though it’s a synthetic opioid analog, it acts much like an SSNRI.  It effects serotonin, dopamine, and norepinephrine.  All of that aids in its ability to combat pain – particularly that which is chronic in nature.  Because of its effects on the neurotransmitters, it has the ability to treat dysthymia (fancy term for sub-clinical depression).  I stopped ultracet because it made me complacent.  We were getting ready to move, and I needed to be able to make decisions without clouded judgment, because Manchild was most certainly in the middle of a mental breakdown.  One of us needed to have a level head.

The stress got to me quickly, and I was on the verge of jumping in front of a bus.  I asked my social worker if she could recommend a psychiatrist, because I needed SOMETHING to get me through the move.  I really, truly, honestly wanted to die.  Not by my own design, but the thought of getting snuffed out by a natural disaster or unfortunate accident was something I constantly fantasized about.

I went to the psychotropic pill-peddler, and got myself some duloxetine/cymbalta.  This drug is actually very similar to tramadol, minus the opioid component.  It did help quite a bit – not on the pain – but in keeping my mood in a normal range so I didn’t explode and kill a bitch.  Getting insurance authorization for this drug was impossibly difficult, so I was given a 30 day supply before I moved, and that was it.  They didn’t allow me to refill at day 20, because tricare would only payout on exactly day 31, when the previous supply had been exhausted.  Stupid, stupid, STUPID!

Now, this moving thing was fucking terri-bibble.  I was already sick to begin with, and carrying furniture, driving back and forth between DC and SC, all while dealing with my in-laws was not the least bit enjoyable.  My MIL actually told me to go lay down several times because my skin had turned a nasty greenish/yellow color.  I like to think that happened because I’m allergic to her.  I had approximately 5 days of cymbalta left when my husband left for SK, but I was so fucking exhausted, I let it run out and didn’t make it to the pharmacy to get it refilled.  My advice – don’t ever take cymbalta.  The withdrawal is horrid.  Shortly after, I went to the ER because I had been ‘going’ 25-30 times a day and wasn’t able to keep much down.  I had my first CT in the new medico-land that showed some substantial ileitis, thus began my second evaluation for Crohn’s.  The initial diagnosis was under dispute, because “she’s crazy.”

Last year?  So sick.  I was hospitalized 14 times.  Then I started tramadol again for the neuropathy.  It was 4 whole months until I needed to be admitted again.  I’ve been taking it since, save for the stupid occasions when I decide I should stop taking it.  My emergency hospitalizations were nearly halved.  I sloooooowly tapered off tramadol over the past few weeks, and now I’m “dying” again.  Withdrawal?  Insanity?  Is any of what’s happening to me real?  Am I really sick, or just out of my mind?  Both?

By the time the brain-pong stopped, I was totally convinced that it’s my mind doing all of this stuff.  I’m not actually physically sick.  Then I submitted to hopelessness and told manchild he needs to take me out to a field and shoot me like he did Gidget after her noggin tumah made her go nutzoid.

Being the wonderful, amazing, supportive, understanding man that he is – he looked at me all concerned-like and told me to not let my brain get ahead of me.  Then he did something amazing – he used rationality.  Why hadn’t I thought of that?

“Your brain didn’t cause the ulcers in your intestines, or the malabsorption that lead to nerve damage.  Your brain didn’t make your kidneys fail.  Your brain didn’t fill half of your vital organs with cysts.  Your brain didn’t cause your back to degenerate.  Your brain didn’t cause you to nearly bleed to death.  What your brain does, is move too fast.”

Maybe I am (probably) sick in the head, but I guess my body is pretty sick too.  Never have those words been so oddly comforting as they were last night.

 

 

 

 

 

 

19 thoughts on “Brain Pong Psych Out

  1. I’ve read about patients who wait years, even decades, for the correct diagnosis. And this is modern medicine? It only took about a year for me to get a diagnosis, but that was because I found a smart and caring dentist who worked with me to figure out what was wrong. Of course, once I had a diagnosis, the dentist referred me to a specialist (dumped me). There was nothing else he could do.

    I don’t know how many of my doctors thought my pain was all in my head, but I’m sure there was more than one. Of course I’ve questioned whether some of my pain is due to a mental condition, but over the years, I haven’t seen any evidence of it. Although on more than one occasion, I’ve wished that it was true — at least there’s hope in treating and managing a mental condition. I’m sure there are plenty of people who believe that a mental condition isn’t as serious (real) or as debilitating as a physical condition, but that’s not true. All this shame attached to things that can be wrong with our brains — it’s stupid, silly, and childlike.

    And then there were the doctors who thought my pain was all about drug seeking. Yeah, I proved them wrong, too. Assholes. 🙂

    Liked by 2 people

    • I’ve been saying this all along, “I don’t have a unifying diagnosis because I AM a disease.” Karaitis 🙂

      I have a history of MDD and extreme anxiety, but for the most part I’ve been alright since I left home at age 17. I think a lot of it is situational, and bodily illness does fuck up the brain chemically (plus all of the medications to treat illness a to z) to the point that it becomes pathologically significant. For me, it’s sort of the chicken vs. the egg scenario. Mental illness is no joke, I know this. I’d rather be barfing my guts out than feeling suicidal (sometimes the two coincide).

      I think the two are intrinsically linked, but thanks to the stigma surrounding mental illness, a person’s treatment is very different when a DSM diagnosis is thrown into the mix. I’d like to have all of my medical records thrown into a bonfire in an attempt to reset the attitude some of my doctors have.

      Liked by 2 people

  2. MC has got a point. And, somewhere along the line, our society decided that brain was not an organ like the rest of our bits and then constructed alternative narratives for any problems associated with the brain – crazy not sick, mental not broken. If the cymbalta and tramadol help, I wonder if they both reduce the body pain enough to relieve the allostatic load on your system (reduce the body crap to the point where your mind can rest), and help with brain chemicals.

    There seems to be so much evidence coming through that mind-body is not a dichotomy but fully integrated system, but the prejudice against this remains. Sometimes you need to play the ‘yes I’m mental’ game to get the right drugs to help your body. Play the game like your admirable use of emergency departments (thanks for the bag, I’m out of here until the real doctors finish their weekend golf games).

    Best of luck.

    Liked by 2 people

    • Ah, yes. The brain is the boss. Without it, nothing would function (or dysfunction). In the wise words of the great Dr. Laura, “crazy people get sick too!”

      You’re either sick one way or the other, but both at the same time? Haaaaa, get outta hea’.

      Another interesting thing I noticed, is my crp/ESR is substantially higher when I’m not taking anything for pain, even though they don’t contain any actual anti-inflammatories. As with everything else, it’s just speculation.

      Liked by 2 people

      • Interesting about observed crp/esr correlation with pain management. And I’m getting ‘crazy people get sick too’ tattooed on the inside of my right elbow with arrow to best vein. Also on my butt as a reminder to staff during colonscopies.

        Liked by 1 person

        • LOL, or “please drive through”. I’ve been meaning to do that (with a sharpie), but I don’t think of it ’til after the fact. Oh well. The future promises many more opportunities.

          Liked by 2 people

    • Thanks Lisa, I’m working on it. One day it’ll happen, I hope. He’s a life-saver! I feel so sorry for him when I get like this. Fortunately, my actual meltdowns are relatively rare. Mini-meltdowns and PMS don’t count. 😉

      I am currently avoiding gluten, and I have found that it helps somewhat, even though I hate to admit it. If I happen to ingest some gluteny deliciousness, I definitely notice unpleasant stuff happening during the following few days. It’s rough, making all of that tasty food for the man beast and resisting the urge to chow down (waffles especially). I even went as far as to test out a completely grain free/low carb diet. By and far, that had the most positive impact. I had to back off pre-dialysis because my kidney doc was concerned about my phosphate and bun levels. I don’t think I could do it again. So. Much. Fat. Makes my stomach tumble just thinking about it! 😵

      What I really really want is a big fat bowl of steamed collards and chickpeas. I miss healthy food. This whole garbage disposal routine I’ve got going makes my inner dietitian weep. 😢

      Liked by 2 people

  3. Assholes those doctors are!! I’ve had the opposite happen… something about crohn’s and weight loss and that clearly that wasn’t my issue. I made a pretty unhappy face and the doctor muttered about muscle mass and fitness… OK sir. I think doctors forget that physical illness can have such an effect on the brain. Even with depression and/or anxiety type issues before hand the struggle of being in pain and constantly worrying about your health can do all sorts of nasty. Even if your doctors are ass hat’s it sounds like MC had some good words of wisdom there (rare for his gender I know). Take care of yourself and don’t give up on sanity quite yet, it has it’s uses.

    Liked by 1 person

    • Ha! You know what? I’ve read on Crohn’s forums about people who were normal or overweight who didn’t receive a prompt diagnosis (hell, I don’t think anyone does unless it lands them in the hospital BEFORE they see a GI doc). Whereas, I had lost TOO much weight for it to be Crohn’s. There seems to be some sort of magical algorithm for Crohn’s related weight loss that I don’t know about. And the fact that I had/have food aversion issues due to the symptoms is completely normal.

      If your scopes are abnormal, definitely push them to do an IBD serology. It’s not bullet-proof, but it will possibly help them distinguish between crohn’s and Lupus enteritis if the biopsies are non-specific (which they are in about 50% of IBD cases). Good luck with that shit…heh heh. And don’t let my woeful tales discourage you too much. 😉

      Liked by 1 person

      • Oh trust me your woeful tales of digestive disaster are much more help than they are harm. While I wouldn’t wish any of it on even my worst enemy it is slightly comforting to know there are others out there that understand now difficult dealing with illness, doctors and constantly changing symptoms, tests and complications. Put together we’re all proof there is no one size fits all. There’s no way we’re ALL just completely bonkers with no physical ailment…. or if we are, at least we’re in good company!

        Liked by 1 person

  4. I am always howling at how unfair it is that a man can walk in and they start jumping through hoops, but a woman walks in with the same symptoms and we get told it’s all in our head. (Can you tell a) I’ve done this too? and b)I’m an only child? 😉 )
    All jokes aside, I do worry about you, and I’m glad MC gets you and fights for you.

    Liked by 1 person

    • Yup, it’s a giant steaming load of bullshit. If I’m depressed, it’s likely because they’re telling me I am, and then I start thinking something is wrong with me. I become what they believe I am, and they win. I don’t like this game.

      I need to switch to the Johns Hopkins plan, but that means giving up my most excellent PCM and the convenience of having a clinic within spitting distance. At this point, I’m not even sure I wouldn’t go through the same thing all over again there even though they are likely far superior to NCR hospitals in every other possible way.

      Like

      • Hopkins is pretty good (the hospital, not the plan….although the plan is probably pretty good too). Fortunately I just have my pcm on base and all my referrals out in town. Is there a way for you to do that? Or because you have an mtf hospital up there you’re stuck with them?

        Liked by 1 person

        • It’s either Bethesda, Malcolm grow, Ft Belvoir, or JHH. About the only off-base referrals they do is behavioral health, and I had my sleep study done in Waldorf (I keep wanting to call it waldork). It depends on if the referred specialty has manning/space to treat AD dependents in addition to the AD load.

          Like

          • Hmmmmm. Okie. Can you request a specific provider? Pax River uses relayhealth to message between the clinic and patients so we can request referrals, etc. But we’re out in the boonies (even though my referrals are in Prince Frederick,Waldorf, or DC. )

            Liked by 1 person

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