Day 8: “Let’s talk about you”

I had a post-clusterfuck follow-up with my dear primary care doc.  This should have been a simple visit.  I want him to be on the lookout for referral requests in the future because I don’t know that my current referrals won’t expire by the time I have the opportunity to commit to a scheduled appointment.  Also, I need medication renewals put in despite having just picked up refills today.  They need to be there so the scripts can be transferred to a different pharmacy depending on where we end up at the end of next month (we’re still unsure if the military will keep him or kick him out).  Ooookay, so there’s a little background for you.

I assumed I’d only take up 5 minutes of his time, which left a whole 15 minutes that he could talk to manchild, as we both share the same pcm now.  I’ll be damned if Dr. Awesome didn’t scan over all of my records, test results, etc, and start digging into things that aren’t really current concerns.  Just weird lab values that have yet to be explained.  He wants to get it all figured out, and he’s going to lose his mind in the process.

I did bring up MC’s stuff because dude, pending heart explosion!  The exchange between the two of them lasted all of 120 seconds, and then I was back in the hot seat.  “This is your appointment, so let’s talk about you.”  Damn.  I don’t waaaaaaanna!

This doctor…he’s wonderful.  He’s the only one I feel I can actually talk to and be heard.  I’m calm around him because I don’t feel the necessity to be on defense.  The downside is that he has made it his mission to get to the “bottom” (current theory is my bowel issues started this whole mess) of what’s going on with me because I have multiple systems that seem to be failing.  What this means is lots of tests, which requires a willing patient.  I’m way past the point of caring about the ‘why’ and have moved into damage control mode.

I’m not doing well with any of my follow-ups because from where I sit, there’s not much of a point to any of it.  Outside of drugs, the only thing they (the evil collective of specialists) manage to do is piss me off.  I hate drugs.  Well, except for the ones that I don’t hate and bless those little white/round pills.  I don’t have the energy for pointless appointments and right now, I certainly don’t have the fucking time to deal with all of that nonsense.

Harpy is in hiding and FIL’s rear end is leaking toxic gas, so I’m chilling in my darkened space away from the open windows that are sucking in pollen and circulating the gas.  I wish I would have asked for a tranquilizer today.  In case of emergency, take one, close eyes, drift away to never-neverland.  The worst of it isn’t even here yet.

 

Ennui

 

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Denali NP, 2007

I could complain about pain and say that’s why I’m not sleeping, which may be a portion of it, but the real issue here is the anxiety.  I’m wound up tighter than a drum.  My mind has been in a very strange place for most of the month.  It almost feels as though I’m dissociating.  It’s likely given that’s how I tend to deal with periods of high stress.  It’s better if it’s happening to “someone else” rather than to me.  I don’t know if this is an advantageous survival skill, or if it’ll come back to bite me at some point.

It’s still hotter than hell during the day, but the humidity levels are dipping.  My phone and computer apply the blue filter around 7:00pm instead of after 8:00pm.  Night time temperatures are dropping down in the lower 60’s, which means the A/C isn’t running constantly anymore.  All signs that summer is coming to a close (YES YES YES!!!!).

More than the obvious signs, it’s a feeling I get in the pit of my stomach.  A cross between excitement and sadness.

I can’t stand the heat, the sun gives me migraines, but I also don’t like the darkness of winter.  I do enjoy the freezing cold because almost every issue I have from A to Z tends to improve.  I gain a ton of weight because it’s what fluffy city critters do.  We hole up in our little caves and eat way too many potatoes, drink way too much wine, and enjoy every damn minute of it.  Everything goes into hibernation, including my sometimes obnoxious optimism.  Winter makes me emo, and by the end of winter when spring pops up, I find myself brow-deep in some sort of swampy philosophical major depressive crisis that coincides with one of my conditions waking up from its slumber, followed by an overwhelming desire to choke to death on an avocado.  I eat so many avocados, I assume one will be involved in my death somehow.  Such a duplicitous fruit!

At least shit is predictable, even if it ain’t easy.

I need to turn this cycle on its head.  The words “quit” and “give up” need to be tossed out of my vocabulary.  I have one job, to take care of myself, and I’m failing.  I just don’t care anymore.  This needs to be remedied.  If not for me, then for the people I love.  I may feel my life is finished and I may feel comfortable letting go (I think this is a good thing, but I’ve also admitted to my head being in a fucked up place), but there are others who aren’t ready to see me go yet.  I owe it to them to give them several more years of me being a pain in their asses.

 

We’ll call it a work in progress, and as long as there’s still progress, my work isn’t done.

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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.

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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.

 

 

 

 

 

 

Proof of Life

1) Big fuzzy blanket, because one minute she’s dripping with sweat, then the next she’s freezing her proverbial balls off.

2) The most pale legs you’ll ever see.

3) Her body has a difficult enough time making the hair on her head grow, so her leg hair grows in rare patches, much like a Chinese Crested…hamster.  She wishes her damn armpits would start going bald.

4) Mug of vegetable stock because today was all kinds of vomitous, biled-butthole awful.  The salt will postpone death so she can live to fight another day.

5) Mismatched socks.  Who the fuck has the energy to find a matching pair?  It doesn’t matter if you’re black or white.

6) Cropped lightweight sweatpants, her second skin.  While in these, she considers herself dressed.  Well dressed, even.

A rare creature, shown here in her natural habitat

7) She would like a reprieve.