Wanted: Healthy Guts

I came home to quite a mess Friday evening.  Raise your hand if you’re surprised.  Anybody?  No?  It was so thoughtful of MC to save almost two weeks of dirty dishes for me but, being the snarky swamp creature that I am, I rejected his gift and made him scrub those pans and load the dishwasher himself.  Also, it took all of my remaining strength, a loan from Thor and fifteen human sacrifices to make it up the stairs.

I made a half-assed attempt to fill my pill planner and instead of filling the four slots for one day to figure out what goes where, I opened all 28 holes and stared at them.  Then I stared some more.  Then I realized I didn’t have everything I needed in the bedroom anyhow, so I chucked it in the fucket bucket and decided it would be a better Saturday task.  The only problem with this plan is that it’s now Saturday night, technically Sunday morning, and I’m still too derpy to focus.  I’m taking them straight from the bottles like some kind of disorganized animal.

I did manage to get my pain medication divided out in a second planner so I don’t accidentally overdose.  I’ve done it (overdosed by accident) before and I didn’t mind at all but the goal here is to manage pain, not to get as high as the ISS.  For shame.

I had another laparotomy two weeks ago and said goodbye to another 70i’sh centimeters of colon/small intestine lost to the ghastly bowel munching disease.  It turned out the reason I was so sick and hurt so bad was that I had more perforations.  Bizarre.  I don’t eat actual food anymore – nutritional slop is it.  Those steroids we were so sure would fix everything?  They turned my guts into wet paper towels that tear for no apparent reason while Crohn’s kept noshing away.  So, they fixed that again.  All of the holey places and the places that looked beyond saving were removed.  The end-of-surgery-game decision was made that most of my ileum and colon should be bypassed until I heal from surgery and find a treatment that actually works for me.

I am now the reluctant owner of a loop ileostomy.  It’s gnarly and I’m not even close to being okay with it.  I know a few ostomates and I’ve even seen stomas.  They don’t bother me at all, but to actually have one without having any idea that’s what would happen when I went into surgery?  It’s different and a little bit of a shock.  I’ll adjust to it, likely after it stops hurting so freakin’ much.  I might even name it.  For now, it’s Asshole #2.

The post op pain of this surgery was/is much worse than the one before it.  The first few days were awful and only within the past five days or so, it’s finally to a level that I can tolerate if conditions are perfect (i.e. I’m sitting completely still).  I dread having to change hardware and empty the bag because that whole area is unbelievably sore.  I just have to grit my teeth, make plenty of weird sound effects and get it over with.  I’m also quite sure I’m allergic to the adhesive so I’m going to have to do some research to find something that’s suitable for wimpy skin. 

The long ride home was a character building experience.  I’m not entirely sure how I’ll manage my normal schedule now with as difficult as it is to move around.  I suppose I’ll find out.

I started some new drugs, to hopefully give my circulatory system a little boost, and I’ll be tapering off of steroids completely, minus low dose hydrocortisone which I’ll remain on indefinitely.  In about four weeks, I will be starting a drug called Entyvio, which requires IV infusions every two weeks during the loading period, and then every other month after that.  That’ll be the easy part.  As far as Crohn’s poisons go, every 8 weeks is nothing.  The difficult part will be sitting in the infusion clinic every single week for a MVI, iron, and B12 shots in addition to dialysis and follow-up appointments.  If my health is my job, consider this overtime.

Do you think B.B. Crohn would have named this disease after himself if he knew how many people hate Crohn’s?  It’s something I’ve often wondered.  If I discover a brand new disease, I’m going to call it Harpy.  That makes much more sense.

 

 

 

This drug has zero side effects

Said no doctor, ever – until today.

I have this insane combo of orthostatic hypotension that operates independently, although occasionally at the same damn time as postural orthostatic tachycardia (POTS).  The hypotension is thanks to my vacationing adrenals that fail to keep my sodium levels where they should be.  Orthostatic tachycardia can be a compensatory mechanism in dehyration and other reasons for low blood pressure (adrenal insufficiency and yes, sometimes dehydration or severe anemia, in my case).

To make things super confusing to the point that I don’t even fucking understand it, my POTS is its own beast.  I was tested for OH/OI almost five years ago after a syncopal episode (passing out) and was diagnosed with POTS.  Of course, I wasn’t aware of this diagnosis until a year ago.  THEN I was diagnosed with OI.

POTS is a giant stinky turd.  I’ve tried all manner of drugs to treat the symptoms.  First line of defense is beta blockers, that in higher doses, treat HYPERTENSION.  POTS is not a fainting disorder.  If orthostatic hypotension is present during tachycardia, it’s not POTS, it’s OI.  Or it’s both caused by different mechanisms.  Most people with POTS have normal or even high BP while standing.

So, uh, why was I diagnosed with both?  Because once the OI was sufficiently treated with steroids and more steroids (hydrocortisone and florinef), my exaggerated response to sitting or standing continued and I didn’t have OH/OI when I was diagnosed with POTS.

It still doesn’t make any sense.

It looks like this: early in the morning, the web building spiders exit my brain for the day, my heart rate is 58-65.  It’s a very reasonable resting heart rate.  When I get up to visit my best friend, señor toilet, I have to hold onto things as I make my way to him, because my heart rate is now about 170bpm +/-15bpm.  That’s from standing up and walking less than ten feet.  My target heart rate for cardio exercise is 148-154bpm.  It’s like when I got up in the morning to go for a run, only now the only thing running is my butthole.  Rather, it was until someone decided it would be best for me to crap in a bag adhered to my abdomen instead.  Details don’t matter so much here.

So, every moment of every day when I’m not laying down, it’s like I’m sprinting.  My legs get heavy and numb, my hearing fades, my stomach does somersaults, my vision is flecked with stars, and if I’m standing long enough, the daylong headache sets in – it feels pretty terrible.  But I don’t pass out.  Passing out is caused by something else.

When I was put on beta blockers to slow down my heart rate, it got worse because of my coexisting swooning disorder (spending too much time on Jason Momoa’s Instagram, are we?).

And theeeen, oh this one really puts the fucking cherry on top, I was diagnosed with some stupid form of heart failure because I have 5,000 things going on at any given time that are trying to kill me.  It’s lovely.  I have this actual structural heart disease along with all of my weird cardiovascular shit that is untreatable because of those.  Fantastic!  Putting me on alpha and beta blockers finds me in circulatory shock (yeah, that happened a couple of times), which meant that I had to take something that’s like TNT for the heart that increases cardiac output without being a vasodilator.  That’s all well and good, because I honestly felt much better while on it, but it also increased my heart rate and the frequency of nasty arrhythmias I was experiencing.

Then they said, “Okay, how about you don’t do anything at all – don’t even MOVE – so you don’t die.”

Cardiologist #6 says, “let’s try a potentially dangerous drug combo that might be the solution you’re looking for – or shit, it might kill you.  Only one way to find out.”

Doctor dialogue is often doctored and translated into Kara-speak, thanks to my creative license, unless otherwise specified.

Now it’s metoprolol to slow down my heart and midodrine to raise my blood pressure.  Metoprolol is a beta adrenergic antagonist and midodrine is an alpha-1 adrenergic agonist.  In my head, these two cancel each other out and do nothing.  Of course, alpha and beta adrenergic receptors have different functions, so maybe not.  Drugs are complicated.  Complicated poisons.

This brings me to my point – I question any doctor who tells me a pharmaceutical chemical is completely without side effects.  The Google pharmacopoedia is at my fingertips and I’d be a terrible self-advocate if I decided to skip researching the poisons that have been prescribed to me.

Side effects of midodrine:

General

The most common adverse reactions were paresthesia (includes hyperesthesia and scalp paresthesia), piloerection, dysuria (includes dysuria, increased urinary frequency, impaired urination, urinary retention, and urinary urgency), pruritus (includes scalp pruritus), and supine hypertension.

Cardiovascular

Common (1% to 10%): Supine hypertension, flushing
Uncommon (0.1% to 1%): Reflex bradycardia
Rare (less than 0.1%): Tachycardia, palpitations
Frequency not reported: Vasodilation/flushing face

Nervous system

Very common (10% or more): Paresthesia (18.3%)
Common (1% to 10%): Headache
Frequency not reported: Feeling of pressure/fullness in the head, dizziness, somnolence

Dermatologic

Very common (10% or more): Piloerection (13.4%), pruritus (12.2%)
Common (1% to 10%): Rash
Frequency not reported: Skin hyperesthesia, erythema multiforme, dry skin

Genitourinary

Very common (10% or more): Dysuria (13.4%)
Frequency not reported: Impaired urination

Gastrointestinal

Common (1% to 10%): Nausea, dyspepsia, stomatitis
Frequency not reported: Dry mouth, canker sore, pyrosis, gastrointestinal distress, flatulence, abdominal pain, vomiting, diarrhea

Other

Common (1% to 10%): Chills, pain
Frequency not reported: Asthenia

Psychiatric

Uncommon (0.1% to 1%): Sleep disorders, insomnia, restlessness, excitability, irritability
Frequency not reported: Confusion/thinking abnormality, nervousness/anxiety

Hepatic

Rare (less than 0.1%): Abnormal hepatic function, raised liver enzymes

Musculoskeletal

Frequency not reported: Backache, leg cramps

Ocular

Frequency not reported: Visual field defect

 

Well then.  I guess she figured since 99% of these are side effects of me being alive, they weren’t worth mentioning.  Piloerection is a fun word.

Maybe Later

The price of decent coffee is unfair.  To me, Starbucks tastes like civet ass.  Let’s just assume I’ve had the pleasure of experiencing such a thing.  It’s overpriced garbage, but I’ll still drink it if there’s nothing else.  Caffeine is caffeine.  Knowing I’m never going to get better is also unfair, though it doesn’t tend to ruin my day the same way starting a morning with a shitty cup of coffee does.  I don’t know how we, me and the civet in my pocket, determine what’s fair and what isn’t.  We tell me most of what happens is unfair.

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You sure are cute, but I don’t wanna drink your excrement.

I watched my husband nearly die, go through major surgery, then 6 weeks later he could outpace me in speed and endurance by an embarrassing amount.  He had his chest cracked open.  What in the hell was my excuse for dragging ass?

At 8 weeks, he’s back to work and running around evenings and weekends like nothing happened.  Even his blood count went back to normal after two months.  How is that fair?  I’m not saying I wish he had been doomed to live a life as a useless fuck much like his wife, but I am quite jealous.  Not too long from now, he’ll forget what it’s like to be so exhausted even showering twice a week can be considered a major feat of strength – something I wish I too could forget.

Is it fair that the past seven years of my life are documented in clinical terms like I’m a lump of meat?  I doubt that I’m even human anymore.  There are plenty of things about myself I’d rather not know, and I should have known better than to give out the names of my home providers/specialists during my short hospitalization because all of my records from Cleveland were faxed to them.  I did sign a release form so that they could request them in the future.  I suppose continuity of care is important, especially since without it I could turn into a penguin or something.  I wasn’t even back home when the calls to schedule follow-ups with my Gastroenterologist and Nephrologist started coming in.  I ignored, then ignored some more.  After the third call, they stop calling.  Can you tell I’ve made a habit of this?  To think I spent so much time stressing over people not calling me back when I actually needed them to…

I called the appointment line last week and appointments were booked for the next week.  This week.  I don’t think I’ve ever gotten in without a three-week wait.

I’m being referred to JHH after 100% of GI doctors I’ve seen in the past four months agree that I need surgery to remove the most diseased portion of my small bowel.  It’ll be a while before it happens, but getting set up with the appropriate butchers, getting my h&h back to appropriate levels, jumping through their hoops and getting an actual date is a battle.  

After what happened with MC, I’m happy to go elsewhere for surgery.  I still hesitate to agree to this because it really won’t fix anything.  I may be able to have a more varied diet and not have to worry so much about obstructions, not to mention a body does need proper nutrition to heal itself, but I’m still left with a stomach that doesn’t function properly and spotty disease from my upper small intestine all the way down to my transverse colon.  If Crohn’s only affected this one section of my gut, this surgery could put me into “remission”, but nothin’ is that simple for me.  I’ll likely decline, unless there’s a better option.  One that doesn’t require such a traumatic assault on my body.

I also had a renal ultrasound before my appointment with the nephrologist as I was instructed to have the suspicious spot on my kidney demystified as early as possible.  This was in August, if I remember correctly.  I put it off.  The lesion – cyst sounded way less threatening, but now she’s calling it a lesion.  Fantastic.  Mass, tumor, lesion, whatever – in my left kidney has grown in the past five months and my nephrologist is scheduling an MRI, then a biopsy.  Percutaneous organ biopsies are not fun.  They keep me awake for them.  I prefer to sleep through things like that.  Sedation with anxiolytics doesn’t work all that well and though the anticipated level of pain is always worse than the actual pain during such procedures, it still really sucks and I don’t want to deal with it.

Either it’s cancerous and I lose the kidney, or it’s benign but continues to grow and chokes out the blood supply and I lose the kidney, or it’s benign, doesn’t grow, but magically turns into carcinoma and I lose the kidney.  If obtaining the biopsy gets fucked up, I could lose the kidney. She told me sometimes it’s difficult to distinguish between what’s benign and what isn’t, so they treat it as if it’s malignant, “it’s better to err on the side of caution”.  I don’t see any scenario in which I don’t lose a kidney.  My very brief hiatus from dialysis would come to a permanent end if I lose one.  I’m probably jumping to conclusions and expecting the worst because that’s my life.  I’d rather wait until it’s too late to do anything about it, keep the damn kidney and die with it.

I remember when my doctor wouldn’t even use the “c” word because she was afraid I’d lose my shit.  I haven’t lost my shit over it, but I am feeling extremely indignant.

procrastinator-award

source (Hyperbole and a Half, visit this site NOW!)

It’s better to ignore these things and say, “maybe later.”

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.