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.




Imagined alternative

Imagination is a great thing.  I can do anything and be anything I want.  I can make plans to travel on a whim, to visit friends, to climb a mountain, to sample beer and food at a Brewfest.  I can even imagine how cool it would be to fill my entire house with soap suds.  I can imagine I’ll wake up tomorrow to find that I have the energy to not only shower but to also take a walk with MC and manage to get the dishes done before they’re piled up to the ceiling and feeding mama gnat along with her entire extended family.

The not so great part of imagination?  When the line separating it from reality begins to blur.

I was warned that Harpy, my mother-in-law, will be flying in for an MC inspection in May.  After daily phone calls for five months, she can’t stand to be away from him any longer.  I feel compelled to tell her how much her nightly interrogations annoy him (and me) but that’s not my place.  About five years ago they had a falling out.  She didn’t speak to him for three months because he purchased a motorcycle even knowing how much she hates the things because they’re death with wheels.  Eventually, he met with his parents to set some rules.  She needed to stop treating him like a child and attempting to control his life.  His job was to let her know when she’s overstepping her boundaries.

That didn’t last long.  Inch by inch, she regained complete control and put his balls back in the jar on her nightstand (or wherever the fuck she keeps them, I could never find them).  I regularly remind MC that he needs to set limits with her because she’s completely incapable of regulating her own behavior.  She has gotten away with entirely too much simply because no one wants to deal with her tantrums.

Harpy will be here for eleven days.  MC suggested I catch a ride to Ohio so I don’t have to be here when she is.  Sure, if he wants to leave me alone at my parents’ house.  They’re gone for the next three months.  Before she purchased her plane tickets, I asked him if it wouldn’t be easier on everyone if he takes a long weekend and drives back to spend time with his bitch mother.  “Yeah, probably.”  As usual, he piddled around and didn’t commit to anything, and then it was too late.  First warning, she’d be here for six days.  Then she called this week to tell MC she changed her outgoing flight to stay an extra five days.

I can’t hide that long.  That’s too long.  I’m thinking about all of my options and decide it’s best if I fly to Florida to stay with John, his happy (girlfriend) and their three pups.  That sounds like a fantastic plan.  I’ll ask him if I can invite myself over for a couple of weeks.  “Sure! You can see the new house.”  Great.  All I need to do is find a plane ticket that’s only $18 since that’s all that MC left in the checking account after going on a compulsive shopping spree (I will not kill him, I will not kill him, I will not kill him).

In my mind, the only problem is the money.  Nevermind that I have four follow-up appointments every other week, dialysis all of the fucking time, and I’m not supposed to leave the area without notifying my transplant team.  Also, have I mentioned that I’m not sure why I haven’t been euthanized yet?  If I were an animal, no one would question it.  I’d be ashes in a tin on someone’s mantle.

Oh yeah, that reality thing.  I forgot that I’m not actually a normal person who can leave whenever she wants.  Shit.

She’ll be here, I’ll be here.  MC will be working normal hours and will only have to tolerate her presence in the evenings.  That lucky bastard (I will not kill him, I will not kill him, I will not kill him).  I’ll do what I always do.  Play nice, bite my tongue until it bleeds as I watch the days pass at an impossibly slow rate until the day she finally leaves.  If she leaves.  There’s no guarantee she won’t extend her stay if she happens to experience one of MC’s “bad” days.

While I’m mentally preparing myself and getting all of the anger out of my system, I’m still imagining that I’ll be flying out right before she flies in.  That I’ll be spending eleven days with people who don’t suck and mutts piled on top of me.  To be anywhere other than here, not only because of her but because of myself and the things that keep me tethered to this place.


The off switch

I envy men and their ability to not think about anything at all.  Just sit and stare at a wall with a brain completely devoid of anything besides tits and bacon, which are likely bouncing or sizzling in there somewhere.  I want this (minus the tits and bacon).

The future is very much uncertain, as it tends to be for the majority of human-types.  We can set goals and make plans, then adapt as necessary.  This usually works, unless your life turns into one giant fucking dumpster fire.  The only thing left is to decide what to do after you survive the next ten minutes.

Four weeks of living ten minutes at a time.  I shouldn’t be bothered with things as trivial as what’s going to happen next year.  What can I say, I’m easily affected.  

First, I’m considering separating from MC because being with someone who inadvertently reminds me that I’m not good enough for him on a regular basis hurts.  What if we’re both going through a phase that has nothing to do with our opinion of the other person?  What if this is just another in a series of obstacles we have to crash into, then eventually crawl over?  Despite all of his very unfavorable attributes, he’s still the person I chose to marry and, against all odds, love.

If I stay, well, shame on me.  But, if I do, the scene doesn’t look much better than if I were to fuck off and fend for myself.  He has his own decisions to make about his life, because for some reason, he still doesn’t see it as “us”.  That the choices he makes have an impact on me as well.  His separation date is rapidly approaching.  He can reenlist if he wants and there’s a good likelihood they’d retain him for the four years even after his medical review.  This would allow us to pay down debt and give us plenty of time to get organized for the life after this one.  He doesn’t want any of that.  He’s done.  He thinks he’s prepared to live in poverty.  He has no idea what that means.  He has never had to choose between food or antibiotics.  He hasn’t lived in his car for a month.  Given that we’re both varying levels of sick, that’s not a good scenario to be in.

Oh, that’s right.  He’ll be 100% covered through the VA.  Kara can figure something else out, which brings me back to my first point.

The truly mind-scrambling part is what I’d do in the event that I were no longer with him.  If I were even sort of healthy, the world would be my nasty bottom feeding mollusk.  I’d couch surf until the day I die.  Living alone even sounds wonderful.  None of what I want to do can happen.  Not if I make my own safety a requirement.  The only thing I can see happening is becoming someone else’s problem because “she shouldn’t be left alone.”
It’s only natural to think ahead, but sometimes I wish I had a damn off switch.

A Tall Order

If you’ve been around since the inception of my documentation of disaster, then you probably notice how often I come up with creative pet names for some of my doctors who were unfortunate enough to be tasked with my care.  You would also be lead to believe I hate doctors, because doctors suck.  Most doctors suck, and some I strongly dislike, but hate is reserved for only the douchiest of the douchstors.  There has only been one of those, and he’s fired.  Soon.

When you’re a chronic illness noob, it takes a while to figure out that going to the doctor doesn’t mean you’ll get better.  That’s how it’s supposed to work, but it isn’t chronic illness without chronicity.  It’s like getting a case of the flu that never fucking ends.  So, not only is your affliction incurable, but sometimes even amid regular follow-ups and good intentions, you get worse.  Now whose fucking fault is that?  You have to blame someone, right?  Doctors did it!  Evil doctors!  It seems logical enough when everything about your predicament defies logic.  You spend years bawling your eyes out after appointments because of the insensitive things emotionally stunted healthcare professionals have said to you.  You begin to resent them.  The anger and frustration builds, until like a tea kettle, you blow your fucking lid and lose your shit in front of the very person you were trying to prove your psychological fitness to.

Just think of all of the pain and suffering I could have avoided had I been cognizant of all of the bullshit one with a chronic disease endures.  I would have said, “Eh, it happens to everyone.  It’s not me, it’s them.  Whatever.”  It’s true.  It’s not me, and it is them, but the fault falls on the system and the training the doctors go through.  They are just doing what they were taught, which is to treat acute illness.  One of my Residents, Squeaky, told me a few of her collegues refuse to treat patients with chronic illness because we can’t be fixed.  There’s very little gratification.  We show up month after month, and complain of whatever the hell happens to be bugging us at the time.  And there’s also the assumption that we’re all insane.  I can say with confidence that at least 80% of my situational depression and anxiety was caused by those very same doctors.

It’s a really rough road to go down alone while constantly fighting with those who are supposed to be seeing to your wellbeing.  My advice is to find a doctor who is fascinated by the complexities of your illness, not irritated by them.  This doctor should be willing to bulldog for you when needed.  When a doctor is willing to take 5 minutes to make a phone call to tell another doctor to quit being a fuckface, it’ll save you two weeks of getting the run around and spare you the very real possibility of going postal.  He will also compliment your Jimi Hendrix t-shirt and note your excellent taste in music.  Who’s in charge of your healthcare team?  You are.  You’re Jean-Luc Picard, and awesome-doc is #1.  Did I just go Star Trek?  I did.  Yuuuup.


Different era, same old Khan.

The point here is twofold.  I don’t hate doctors.  I’m immensely frustrated by them at times, as I’m sure they are by me.  Second; don’t hate the player.  Hate the game.  The medical model needs some serious work.  Like, burn the house down, bulldoze the foundation, nuke the land it once stood on, fill it in with marshmallows, chocolate, and graham crackers, and then begin again from scratch while enjoying some radioactive s’mores.  The need to treat illness BEFORE it becomes disease is paramount.  I’m not talking about overmedicating the walking sick with pharmaceuticals.  I mean the illnesses should be treated naturally with whole ingredients that work synergistically with the immune system and body.  This will lead to a huge reduction in overall medical costs, happier healthcare providers, and healthier patients.  How can this be accomplished?  Talk to any doctor who practices functional and integrative medicine.  They can tell you, because I haven’t the foggiest, beyond taking the power away from big pharma.  Minds need to be pried open with the jaws of life.

What do you think?  What changes would you like to see?