Tuesday, March 26, 2013

Post #100: In which Crohn's steals my ball (again)

EVERY TIME. 
In the picture above, I am Charlie Brown. 

The football is lack of pain; hope; happiness; normalcy. 

Lucy is Crohn's. 

Fucking Lucy. 

Day after day, I keep kicking the ball, thinking that TODAY WILL BE THE DAY that I connect, and every day I fall flat on my ass, and am stupidly surprised when the wind gets knocked from my lungs. 

Why should pain surprise me at this point? Why should it surprise me that it's in a different place this time? Why should it surprise me that sorbet and sprinkles (apparently, sprinkles are like nature's little thumbtacks once they hit the colon) would throw my carefully calibrated diet completely off its access? 

And yet: every time it happens, every time the ball gets yanked away at the last minute, I feel it as keenly as if it's happening for the first time. I guess it's a survival mechanism, to disregard the probable and willfully ignore the potential for pain and fear and discomfort. It's a choice I make every morning. How else to live out the day? 

Suspension of disbelief-it's my morning coffee. 

Today was a bad day. Tomorrow? I'll kick that ball again like it's the first time, and hope for better things. 

Tuesday, March 19, 2013

Post #99: I got 99 problems and my AAC is most (but not all!) of them

I am grumpy cat. I have embraced it. 
GIANT DRAMATIC SIGH. 

Do you know exactly what I needed this week?! A NEW medical problem. I was thinking, you know, my schedule looks pretty clear, let's add A NEW PROBLEM TO THE MEDICAL PILE. I don't see enough doctors on a weekly basis! I don't take enough weird medications! I don't get enough bills in the mail! I AM CLEARLY SLACKING OFF IN THE WEIRD MEDICAL PROBLEM DEPARTMENT. 

Ahem. 

A week or two ago I noticed some painful bumps on my head. I assumed, what with the night sweats and Prednisone (they don't mention that your entire body will produce more oil, your skin will freak out, and you will break out like a 12 year old. Fun!) that I just had a little head acne. Gross, but not alarming. Then.....the bumps colonized. First, there was an outpost on the back of my head, at the bottom of my hairline. Just one side. Then both. Then both temples, and finally....everywhere. 

I decided to cut my hair super, super short (seriously, super short-I keep wanting to bust out "I dreamed a dream" and clutch my shorn locks), thinking this would help. No dice. 

I finally went to see my dermatologist, who is a million years old and kind of hilarious, in that I always end up passing out because he discusses my gross skin problems in detail as he pokes at them, despite the nurse and I telling him to STOP IT because he's just genuinely fascinated by the details of his trade. Last time, I told him to pick a more neutral topic, and he talked about duck hunting as he removed something. It kind of helped. 

He took one look at my weird scalp and said, hmmmm......and put on gloves. Never a promising start. Apparently, I might have a staph infection. Of the scalp. I DIDN'T KNOW THAT COULD HAPPEN. Right now, in a lab somewhere, little samples of my weird rash are growing in a petri dish so that we'll know exactly what we're dealing with. He also swabbed my nose (realllllly thoroughly-the kind of nose swabbing where it feels like they touch your brain a little) and depending on what the tests reveal, I'll probably have to go on some antibiotic that will fuck with my AAC and generally make my life more miserable. 

All of this is a disgusting prelude to the fact that more than anything else-the Prednisone (tapering off it-last week! whoooo!), the whole partial obstruction bullshit, the MRE, the liquids, the pain, the bowel stuff-THIS is the medical problem that is making me sad. 

I feel dirty and gross. My head itches and I have to use this shampoo that makes me smell like an aged lumberjack (smoky and pine-y) and I am afraid of infecting someone (not that I generally rub heads with strangers, or acquaintances, really). Maybe this is so demoralizing because the problem is visible-I mean, I guess it just looks like I have some acne around my hair line so I should decrease the drama by about 65%-but still. 

I spent all day moping around and wearing a hoodie so my gross head didn't come into contact with anything. 

It's just one more thing on top of everything else, and maybe it was the one thing that caused the whole pile to tumble down. Whatever the case, I am feeling overwhelmed. I didn't need any new projects. I had enough medical problems that were occupying my time, thankyouverymuch. 

Sigh. 

Grumpy cat over and out. 

Thursday, March 7, 2013

Post #98: Well played, colon, well played

I chugged these like a boss. 
Oh AAC, you tricky little minx. In an attempt to figure out why my colon was causing me so much pain, and why the various hardcore medications I am currently ingesting/injecting aren't allowing me to eat normal foods/drastically improving my symptoms, I went in for my MRE fully expecting to get some clear answers. I should know better by now. 

Confidential to the picture above: "berry smoothie" my ass. Funny story, I was running super late to my appointment (random traffic caused a 20 minute trip to take over an hour), so when I got there I was ushered right back and handed two ice cold jugs of barium-y goodness. As my nurse was shaking up jug #1, another nurse walked by and said, "5 minutes, ok?" Thinking she was talking to me, and kind of frazzled from being late, I burst out with "I can't drink these in 5 minutes! I'm not a frat boy! THIS IS NOT SPRING BREAK!" which caused both of the nurses to stop in their tracks and look at me like I was insane. 

After they finished laughing at me, one nurse explained that indeed I did not have to drink the two jugs o' fun in 5 minutes, and that I should in fact "sip them leisurely." The other nurse leaned in and said, "Confidentially? Those frat boy types really do try to pound these-it's like they just open their gullets and pour it down!" AMPs for the win. 

Fast forward to my doctor's appointment this week, and guess what? The MRE didn't provide any answers. To be clear: 

No new or worsening problems: AWESOME
No explanation for pain/continuing symptoms? less awesome

The doctor still thinks there is a partial obstruction of some kind, or some scar tissue, or some inflammation that is causing this. Solution? ANOTHER f-ing colonoscopy, with the intention of inflating a balloon in my AAC (dilation! like a cervix! but with less baby!) to widen the narrow part. I couldn't make this shit up. 

I was telling a friend about the procedure, which definitely qualifies as WEIRD and insane and something you don't think they could possibly do to a human body until they are telling you they are about to do it to yours, and she replied, "I would think that would be really uncomfortable when you wake up." It took me a second to realize she thought they were going to leave the balloon in there, like I would permanently have a "Congrats on the promotion!" balloon wedged up my ass. I laughed in my head for a long time about that one. 

So that is happening at the end of the month, which means I'm back to my favorite activity: waiting. Waiting! And trying not to obstruct. 

Before the appointment, I was sweating with anxiety, thinking about all of the things the MRE could show and all of the interventions I might need; after, with some of those same interventions hanging over my head, I only feel relief and......I'm not sure what else. Maybe because nothing is clear, maybe because there are still so many more questions than answers, I am hesitant to actually invest emotions until I know what course of action I will be taking. I think I am in a phase of managed expectations, which is where you end up when you get your hopes up too many times, and then lose hope too many times, and generally exhaust yourself with the up-and-down nature of chronic illness. 

I know how to do this part. I will wait, and worry, and distract myself until the next test/procedure/step, and then I'll manage my expectations all over again.

Friday, March 1, 2013

Post #97: I'll be the girl in the tube

Pinned Image
Said no nurse to me, ever. 


Haha, nurse wood. 

So: mission MRE, completed. The hospital where I had the procedure just completed a fancy schmancy upgrade of their Radiology unit, which means the MRI suite was pretty posh. Soothing, back-lit pictures of verdant fields on the ceiling. Shiny new MRI machine. Slick wood floors, un-scuffed walls, that new car smell (well not really, but no antiseptic hospital smell either). Not that it mattered, really, as I was inside a loud whirring tube for the better part of an hour, but the upgrade increased the hospital's capacity by a lot (more machines! whooooo) so there was less waiting around after I finished my barium juice. 

Getting an MRI and a CT scan are two very different animals (I had a lot of time to think in the tube). When I get a CT, I feel like the blood in my body swirls and sweeps and rushes up and down in a current, like a half empty bottle of soda that has been forgotten under the driver's seat and rolls back and forth while you drive (just me?). An MRI feels like the cells in your body are being excited, like pasta just as the water starts to boil. For whatever reason, it feels a little like being simmered. You can feel your body heating up. 

It's not painful, or even unpleasant, but like so many medical procedures it can just be followed under WEIRD. It's a weird and unnatural feeling. When they inject the contrast, and your mouth fills with the taste of what the nurse has accurately described as a combination of paint thinner/nail polish? WEIRD. The fact that they have to strap what looks like a teenage mutant ninja turtle shell onto your stomach to get a better picture of your intestines? WEIRD. The fact that you are being shuttled in and out of a giant magnetic machine, easy listening being piped into your headphones, while a nurse gives you breathing instructions (STOP BREATHING NOW)? WEIRD. The whole thing is just weird. Amazing, and weird. 

As I was being slid into the tube, I had a momentary freak out, which I think is natural when they strap down your arms, cover you with a weird turtle shell thing, tell you not to move, and shoe-horn you into a loud, enclosed plastic cylinder. The give you a panic button (which the nurse let me squeeze-it sounded like an old-timey car horn, like on Chitty Chitty Bang Bang), but after a few seconds I realized that for the next 45 minutes or so, someone else was taking over my Crohn's. All I had to do was lay there and breathe. My bowels were coated; they injected something to slow them down; my IV was in (good job veiny!); I didn't have to worry or wait or think about it in any way. So I took the break, and it was nice. 

Then I came home, the bowel-slowing-down drug wore off, and I had explosive diarrhea all afternoon. But it was nice while it lasted. 

I meet with my doctor next week to discuss next steps. I am full of drugs (so many drugs!) and side effects and anxiety, but mainly I just want a plan. As I said before, I am worn down with waiting. It's not even a questions of losing patience; that isn't a concept that really applies here. I am worn down to the point where I  am afraid to have expectations. 

Whatever happens next week, I hope that I at least find some momentum. And, you know, a better solution for this whole Crohn's problem. And maybe a puppy. FYI: I would totally settle for the first two.