F*ck you very much, too

I requested prescription renewals the Friday before Christmas.  I knew nothing would happen until the following Monday but sent the renewal request anyhow, thinking it’d be the first one checked Monday morning.  My doctor was on vacation and wasn’t due back until the 29th.  Okay, so the nurse can push the request to his email and he’ll see it when he gets in.  

Now I’m back in Maryland, which makes the refill process EASY.  They don’t have to worry about calling it in some place else.  Three days later, I hadn’t heard anything, so I called.  One of the medications, she didn’t have any record of.  After calling me back twice, that was enough for her.  On the third call when she said “I’ll call you back”, she apparently didn’t want to deal with me anymore.  I think she left her phone off of the hook today because I haven’t been able to get through.  

I sent yet another renewal request, this time using the pre-filled form wherein I put check marks next to the expired meds that need to be refilled, even though they’re written wrong.  It’s better than nothing and I can get it all sorted at my appointment at the end of the month.

Is it unreasonable to expect a request to fill turnaround in less than 5 days?  It’s not supposed to take two fucking weeks.  I’m out of everything, with the exception of what was prescribed at the Cleveland Clinic.  At least I’ve got enough HC and florinef, but I’m out of migraine shit, shit for anti-shitting, shit for crohn’s, allergy shit, liver shit, shit for GERD that I don’t actually have, and that tramadol shit.  It takes a bunch of shit to manage my symptoms, but I’m glad that they are somewhat managed WHEN I CAN GET MY MEDS REFILLED!  Shit, shit, shit.

I’m stuck with a steroid and a pain medication that turns me into a raging spitfire.  Perfecto!

I wanted to crack open a bottle of wine tonight because that’s good medicine, but I was reminded that I sleep in the same room as MC now and wine keeps me awake and riles me up.  I don’t need any more riling.  My name is Riley.

Keeping Score

We have certain expectations when we visit a doctor.  We expect them to be cordial, empathetic, thorough, helpful, infallible, perfect.  Wow, that’s a lot of pressure on your poor doc whose brain and body is probably fried from being overworked and overextended.  That’s not to say I haven’t had unreasonable expectations when it comes to my medical team, but consider me schooled – doctors are humans too.

I complained frequently that none of my doctors have actually read any of my history.  Rattling off the same thing every time I have an appointment is goddamn annoying and exhausting.  My brain only has so much juice.  The only one to do so was a psychiatrist who had a consult with me last year.  He said I owe him money for carpal tunnel surgery.  Ha!  Most of them look back to their previous notes, but that only tells them a sliver of the story.  There is a bunch of important stuff hidden in that vast abyss of notes, records, and results.  I’ve even mentioned that I was perturbed that they hadn’t taken a few minutes to skim through my stuff.  Unlike me, they don’t have the luxury of almost infinite free time, so that was me being a jerk again.

Here’s the thing; I haven’t thoroughly read them all either.  I could have saved myself some embarrassment had I spent just a little more time absorbing all of the information.

I recall a particularly uncomfortable hospital admission last year which was right around the time my neurological symptoms were at their absolute worse.  I could barely walk, couldn’t feel my face, choked on food and drink constantly, and was all around miserable.  I was admitted earlier in the same month for partial paralysis that turned out to be thiamine deficiency, but even after three days of thiamine infusions, it was clear something was still seriously wrong.  I got planted back in that shit-hole for neuro stuff a second time.  I had labs drawn during the first neuro admission that showed that my copper level was low, and it was postulated to be the cause of some of my symptoms.

I saw about 10 people from neurology during that stay.  Residents, Fellows, and Attendings.  During the second evening, I was given eye drops that felt like ghost peppers had been dropped into my peepers.  I asked what they were for before they were used, and the nurse said she didn’t  know – the doctor had ordered them.  Okay, which doctor was the sadist?  So I asked every single doctor I saw from then until discharge, and they didn’t have a clue what the hell I was talking about.  Now, I know I was all kinds of fucked up, but I didn’t imagine having fiery chili hot sauce being squirted into my eyes.  I even raised my voice (straight up yelled) at my follow-up appointment with my dickface neurologist about this because he too had no clue what the fuck I was referring to.  I’m sure that was one of the numerous times he told me that my anxiety was likely the major cause of my neuro symptoms (this was before my conduction studies and biopsies).  Yeah, fuck you buddy.

Currently, we’re still working under the assumption that my neuropathy is primarily a result of long-standing copper deficiency.  My copper level is more or less normal now, but the damage is likely permanent.  Who knew something with such a small requirement, and something we don’t even think of as an essential nutrient, could cause such major problems?

I was going through some old cell phone pictures that I had dumped on my computer
(you wouldn’t believe how many pictures of my legs and feet there are, lawdy), and found some of my discharge summary from my last neuro admission, hence me writing this completely pointless post.  The actual summary was stolen by my gastroenterologist at the time, and I assume it has been destroyed by now since they don’t keep paper files.  It was probably scanned, and is now currently kicking around in a storage server somewhere in the United States.

img_20150320_091046

I snapped pictures and cropped them to point out the stuff that was pissing me off, because I was ranting to my husband on the other side of the world through my phone about how much was wrong with this hospital.  I had elevated liver enzymes which they called transaminitis.  That term literally means ‘inflammation of the transaminases/hepatic enzymes’.  The enzymes themselves can’t be inflamed, so it’s a dumb word.  I guess it’s easier than typing ‘elevated ALT and AST’.  That was my first issue, even if it wasn’t a valid one.  I was still pissed off that they weren’t telling me shit, so I started nitpicking.

Secondly, they blamed the elevated enzymes and that particular AKI on an amino acid supplement I was taking that tasted like Tang, not factoring in that both Crohn’s and gastroparesis were also pretty fucking bad at the time.  It was nothing but branched chain amino acids with orange flavoring.  It’s essentially the same profile as what they put into the rotten tit juice known as peptamen, but WORLDS tastier.  “But it’s not approved by the FDA”.  So true.  If it were, I wouldn’t be able to afford it.  That pissed me off even more, because if you know me well enough, you know how much I hate the FDA.  In hindsight, that was probably the first clue that I had auto-immune hepatitis.  Though my levels at discharge showed improvement, they appeared that way because I was given so many fluids that my blood was diluted.  They bounced right back up to “transaminitis” after I pissed out three gallons of water and was retested a week later.  I managed to stay out of the hospital for a month until I got admitted again for another two weeks.  Last year sucked.  Continuing on…

IMG_20150320_091002

Second to last order of business, Omeprazole was listed under active medications that I should continue taking.  I hadn’t taken Prilosec in two years.  I was switched to Pantoprazole/Protonix, and the Prilosec had never been prescribed to me by an MTF.  Where did Prilosec come from?  They gave me Pantoprazole with my inpatient meds, so it’s not like they decided to switch them out on me and got confused because of that.  Again, this is probably me nitpicking because they’re in the same drug class, being PPI’s and all.  One would think that accurately documenting medications is pretty damn important, though.

It took me this long to notice the drug listed between the iron supplements (that I couldn’t take because they made me harf – I told them as much, and they recommended taking more.  Where’s the fucking logic in that?) and Imodium.  What is Apraclonidine?

From Wikipedia, the free encyclopedia
Apraclonidine
ApraclonidineStructure.png
Systematic (IUPAC) name
2,6-dichloro-N– (4,5-dihydro-1H-imidazol-2-yl) benzene-1,4-diamine
Clinical data
Trade names Iopidine
AHFS/Drugs.com Monograph
MedlinePlus a608005
Routes of
administration
Ophthalmic solution
Legal status
Legal status
  • UK:POM (Prescription only)
  • ℞ (Prescription only)
Pharmacokinetic data
Protein binding 98.7%
Biological half-life 8 hours
Identifiers
CAS Number 66711-21-5 Yes
ATC code S01EA03 (WHO)
PubChem CID 2216
IUPHAR/BPS 7117
DrugBank DB00964 Yes
ChemSpider 2130 Yes
UNII 843CEN85DI Yes
KEGG D07461 Yes
ChEBI CHEBI:2788 Yes
ChEMBL CHEMBL647 Yes
Chemical data
Formula C9H10Cl2N4
Molar mass 245.108 g/mol
(verify)

Apraclonidine (INN), also known as Iopidine, is a sympathomimetic used in glaucoma therapy. It is an α2-adrenergicagonist and a weak alpha-1 adrenergic receptor agonist.

 

Eye drops!  There it is!  I had my answer all along.  Last time I checked, I don’t have glaucoma.  Idiots.  Oh, but wait, keep reading, you snarky gremlin.

Apraclonidine may be useful in the diagnosis of Horner’s syndrome. In Horner’s syndrome, the sympathetic innervation to the pupillary dilator muscle is lost. The affected pupil is thus miotic and the pupillary dilator responds to denervation by increasing alpha-1 receptors. Apraclonidine is useful in this case due to its weak alpha-1 adrenergic properties. When applied to the denervated (and thus hyper-sensitive) pupillary dilator muscle, a super-normal dilatory response is generated in which the pupil dilates to a degree greater than that which would be seen in a non-denervated muscle. This causes the reversal of anisocoria that is characteristic of Horner’s.

Ah ha!  Thanks, Wikipedia!  It was being used to rule out potential diagnoses, because I had/have anisocoria (one pupil is larger than the other).  They were normal in my previous admission, but there’s no apparent pathological cause after a normal brain MRI, so they considered it physiological (normal variant).  I also have horizontal nystagmus that developed in 2013, along with more frequent and severe migraines that sent me into the MRI tube for the first time.  I learned that I’m not as claustrophobic as I thought I was.  Horizontal nystagmus is rapid horizontal eye movements, and since it didn’t resolve upon fixation/focusing on a static object, my doctor assumed it was pathological but my brain was peachy then too.  I suppose my eyes are just crazy, which makes sense given who owns them.

D7A_1885

They look pretty fixated beer…I mean here.

Had I actually read this in detail last year, I wouldn’t have picked a fight with my neurologist, and he might not hate me as much as he does currently.  It wouldn’t have fixed telling him I’m allergic to bullshit and assholes, but I have to make that clear to everyone.  Of all of my allergies, those are the most annoying. 😉

Lesson learned.  Read those records, and then read them again.  It might save you from making yourself look like an ass, and that means you’ve got 1-up on your completely disinterested doctors.  Keeping score is also a good idea, because who doesn’t enjoy a little friendly competition?

Win some, lose some

I’ve been skirting around the health thing for a while.  I haven’t felt like talking about it, mostly because it’s depressing.  I can enthusiastically talk about things that piss me off, and things that entertain me.  The sad stuff?  I’m looking for a blankie and a dark hole to crawl into.

I was in the hospital for a couple of weeks with a crazy infection that started out as a simple UTI.  In it’s endgame, it shanghaied my appendix, abscessed my right kidney, and went on to make both of them fail.  Infection, surgery, and the antibiotics did a number on me.  I’ve been in the hospital plenty of times, but usually I’m in and out within a few days.  I have chronic kidney disease so obviously my kidney function hasn’t been stellar for a while, but when we look at the numbers, my GFR (the estimation of filtering capacity) has never been in the single digits before.  Single digits are bad.

I had a conversation with my Dad about mortality and in the end the idea of death isn’t frightening to me.  I’m not a person of faith, so I’m not worried about going straight to hell.  When I’m dead, I won’t care either way.   That doesn’t mean I’m ready to die.  I don’t think I’m done living yet.  I haven’t annoyed enough people.

I had appointments yesterday.  Both were walk-ins, which means I’m seen between other patients and there’s a lot of sitting around and waiting.  Yayfun.  I’m in the habit of being as forthcoming about my health with them as I have been here recently.  I’m completely burned out.

“Hi Kara!  How are you?”

“Fat, sassy, and fabulous.”

“Orly?  According to your bloodwork, you’re fucked.”

It’s sort of like that.  I may have gotten a little creative with the wording, but that’s the  gist.  GI was the usual pain in the ass (hah), though I did get some good news.  My liver enzymes are down to just two times the upper normal limit, which for my purposes basically means normal.  It means the Imuran is doing its job.  Win!  Inflammation markers are still way up and my last CT showed lots of bowel thickening so I’m going back up to a 400mg dose of Cimzia a month, but split into two separate doses every 2 weeks.  He also mentioned that I’ve lost 13 pounds since the last time he saw me.  Well, duh.  I wasn’t able to eat for a week and my appetite is shit.  My weight is irrelevant when it changes daily.  He talked about doing a colonoscopy, because my colon is beautiful this time of year, but decided we should wait for a few months to gauge how well this particular biologic is working or if something different needs to be considered.  Mild Crohn’s, my ass.

This brings me to doctor #2, the kidney whisperer.  No bacteria in my urine, even if it was full of other gunk.  A quick ultrasound revealed that I’m still abscess free.  That’s the good news.  The bad news is the waste building up in my blood.  Stuff like phosphate, uric acid, and against all odds; potassium.  I may poop a dozen times a day, but it doesn’t seem to make a difference.  It’s all wrong, or maybe the tests are all wrong.  None of it is dangerously high, but it’s enough to make me feel like ass.  There’s fluid accumulating around my joints which makes ’em hurt twice as much as usual, I’m itchy everywhere, and my head feels like it’s full of sand.  There’s also the ever present fatigue, but that’s nothing new.  Thanks to the Crohn’s, I rarely get the typical edema associated with CKD because water finds a different exit.  I probably smell like a spicy italian pizza, but all I can smell is methane.

Her order is to get the AV fistula AND a tunneled catheter put in at the same time for use until the fistula matures.  No bueno.  Dialysis once a week to start, and a possibility that the need for dialysis is only temporary, or that I’ll need to go more often.  I’m supposed to limit the potassium rich foods and dairy products in my diet.  What’s a person who subsists on potatoes, avocados, and yogurt to do?  Manchild came home with 4 pints of ice cream today.  Fucking hell.  She wants me in there first thing Monday morning to get all of that done.  The other nephrologist must’ve given her hell.  Awesome.

But, not really awesome.  Being chained to a machine for 4+ hours isn’t my idea of a good time.  This wasn’t supposed to happen for another 20 years, if at all.  And to think I’m a glass is half full kind of girl most of the time.  Attitude doesn’t appear to improve the prognosis, and reality is a cunt. I’d like to be done with this bullshit, ya know? I still have to see the neurologist, cardiologist, and the doctor I want to have puppies with.  For now, it’s time to bury my head in the sand and pray my ass doesn’t get struck by lightning.