Behold The Power of the Brown Eyes

I don’t quite understand how doing just a little bit is the same level of suck as doing way too much.  If I don’t feel any different, I may as well say fuck it and do what I need to do rather than trying to go easy on myself.

Four days after I requested my renewals, I FINALLY got an email from my doctor’s nurse.  Great, that means I can cancel my appointment that I don’t really need and go straight to the pharmacy.  Oh, but wait.  “Blah blah blah was filled and ready for pick-up, for your Ultram refill, please discuss issues with this medication at your appointment in clinic this afternoon.”


Jumping to conclusions, I assumed my doctor was mildly pissed off at me for doing very little of what he asks of me because I’m a shitty patient.  I claim I’m trying to preserve blood.  Now is as good of a time as any to not have access to pain relief, right?  I’m already on a one-way street to the whack shack.  Let’s give this bitch some rockets to expedite the process.  I did what any grown woman would do – I brought my mommy with me to my appointment.  Ha!  Actually, she wanted to meet this doctor guy whom I speak so highly of, considering I call the rest of my doctors idiots, douche bags, or assholes.  There must be something special about this one.

It turned out there wasn’t an issue at all or he didn’t feel like cluing me in to what the issue was.  He just asked me if it’s still working for my PN pain and I said ‘ish’.  Would I like to have no pain at all?  Uh huh.  Still, this is way better than nothing at all.  He’s quite satisfied that I haven’t had to switch to anything stronger or up my dosage for it to continue to work.  My other theory is that he gets pissed off at all of my e-requests and tries to rope me in for an intervention/lecture about how I need to stay on top of labs and shit (shit being referrals – he’s trying to get me hooked up with specialists who aren’t idiots/douche bags/assholes), but then he sees my face.  Those big, dark saucers on either side of my nose.  He forgets why he wanted to lecture me, he tells my Mom I’m his favorite patient, then three hours later I bounce out of the pharmacy with two bags of drugs.

Getting my other stuff transferred isn’t going to happen unless I feel like enjoying a three hour drive each way for appointments, with the exception of dialysis, which can be done at any hospital that’s in network without a referral or prior authorization.  This means the rest will have to wait until 2017 unless an emergency comes up beforehand.  With the holidays on the horizon, I’ll be shocked if Crohn’s fucks off for that long.  We (me+beantard) were also supposed to be paying attention to the alleged suspicious mass on my left kidney, but gourd-like MC aorta took center stage.  Always trying to outdo me, that friggin’ guy.


I’m a rotten, non-compliant patient.  With the exception of my crohn’s/AIH, and anticonvulsant drugs, everything else I take sporadically if the mood strikes me.  I’ve been fighting with GI for about a year over the ppi and cholestyramine I’m supposed to be taking.  I stopped cholestyramine because I couldn’t choke it down any more, and the protonix…well, I have some harebrained ideas about it exacerbating my gastroparesis so I quit that too.  I can tell when I need it.  The burning of gastritis is unmistakable.  That’s not my problem right now.  Reflux is.

“Well, hey ding dong, it’s made for reflux.”

Gosh, quit it with the name calling already, internal antagonist.  I should mention that the reflux improved some when I quit taking it, thus confirming my suspicion that a sluggish stomach needs all of the acid it can get to pulverize the tasty bits floating around in my food bag, rather than propelling it up into my mouth.  All results are subject to my bias.  Maybe I should be taking it, but good luck convincing me of that.

GI doctor of the week is not only pissed off that I’m not taking my medication as prescribed, it also makes him believe something is wrong with my head.  I must be depressed.  Or crazy.  I mean, why else wouldn’t I want to swallow 40 pills plus three glasses of orange flavored horse shit every day?  I’m just exceptionally good at rationalizing faulty logic.  It’s good for my creative spark.

June is shaping up to be a fun month. Read with sarcasm.  The past couple of months have been a real joy as well.  The weekend ended with an overnight stay in the medical doghouse because I had another frickin obstruction.  It was just cheese enchiladas (and beans. D’oh.), for the love of Gouda.  I got many much fluids, and a tube shoved down my snozzle to drain the kara juice and gas.  Feels awful and awesome at the same time.  They released me after I filled a hat with southbound waste.  Hey look, beans!  I’m having another endo balloon dilation next week, since the other one was a smashing success.  I think I had a four month stretch in which I could eat actual food without a resulting intestinal traffic jam.  The caveat being, they want me to spend prep day/night in the hospital to keep the fluids going in an attempt to spare my kidneys.  Moviprep is a violent undertaking in ideal circumstances.  I’m bringing my own tp, for sure.

My husband’s idea is to try to fix me with my bucket of assorted pills in the interim.  He tried to put me on a schedule.  Take drugs A through 103, then repeat.  All stuff I only take periodically.  He must think I need a nap and a fatal arrhythmia.  Or that pain and being allergic to planet earth is causing inflammation to tie my guts into knots.  He means well.  I told him to stick to bones since it’s what he knows.

“But the bottle says to take every 4,6,8 hours, or twice a day.  Why don’t you take them as prescribed?”

1) I don’t trust the drugs, and 2) I don’t trust the doctors, for the most part.  I also had to explain the potential for drug interactions and the fact that most are as needed.  Not just because it’s fun to take them on a schedule.

I’ve got trust issues.  I could even joke that I believe they’re trying to kill me, but am I really joking?  Hmmmm.  What good is the medical system without medicine?  Eh, what good is the medical system WITH medicine?

Just kidding.  Sort of.


My swallowed pride is stuck in my nose

Having a bunch of diseases is a juggling act.  Luckily, I’ve only got 3 balls to juggle; Crohn’s (and a long list of other GI disorders), Kidney Disease, and Neuropathy.  While juggling, one ball is always up in the air.  Sometimes two balls, and rarely all three.  I’d drop them, or throw them at someone, but let’s just assume I’d turn into a blob of anti-matter and the universe as we know it will cease to exist, all because I lost my balls.

I was starting to think that no balls were in the air, as my little disease pals have been relatively quiet.  Things are getting better, right?  It has been a couple of months since I had to sleep in a hospital.  I’m thinking to myself, “well, isn’t this nice.”

One of my balls is up in the air, and it may even be a new/different ball.  In July I was scheduled for an esophageal manometry test, which basically shows what happens with the muscles in my esophagus when I swallow.  At the time, food and liquids would frequently get stuck in my throat and I’d choke, then spew it all over.  I spent most of the summer with my parents while my broken ankle healed, so I never did get that test completed.  The problem seemed to go away on its own, and I don’t know anyone who would volunteer to have a tube shoved down their nose just for the fun of it.

It’s probably time to get that test reordered, because now when I swallow, food, and sometimes pills, goes up my nose instead of down into my foodbag.  So, what happens when your nasal cavity fills up with donuts, tofu, and calcium tablets?  Sinus infection!  My fabulous doctor took one look up my nose today and said “Ewwww!”.  That’s comforting.  I’m supposed to take amox for 10 days, flush my sinuses with saline twice a week as long as I’m insufflating my food and beverages, and he sent me to the lab for the basics (I totally dragged my feet on that one).  He told me to see my neurologist, because the whole nasal regurgitation thing is likely a neural issue (aka nothing they can do about it so why even bother?).

I suck at juggling.