Well, Hello Sailor!

So I says to Mabel, I says.....

 

 

So in case anyone still reads this blog, you might have noticed I took a tiny break, just a few days off to relax, kick back, eat some Milano's, watch a little Lifetime....oh right. I TOOK OFF A FUCKING YEAR. I avoided this blog for a year, and now I'm back and swear-ier than ever!

 

Sorry about that.

 

The absence, and to a lesser degree, the swearing.

 

Things were good, things were bad. I was happy, I was sad. I met a cad, his name was Vlad. I could go on like this for days (don't be mad).

 

As is so often the case with my colon, I had good months and less good months; during the good months, I promptly forgot about the previous months and went about the daily business of living, and when things got worse I would actually be a little surprised, as though I hadn't experienced the exact same delightfully life-inhibiting symptoms 4 or 6 or 8 weeks before.

 

I'm sure this is some complex coping mechanism, or simply self-sanctioned colonic amnesia. Either way, each time things take a turn for the worse, it's like a little betrayal, instead of something that I should definitely be expecting four years (!!!!) after my diagnosis.

 

After failing two different blood tests AND a super fun stool test (and by failing, I mean overachieving in the inflammatory markers department), I'm going to change my meds around this week in hopes of turning down the drama in my AAC. I would say "with the goal of re-inducing remission," but remission is a word that I'm not really comfortable using with my Crohn's. Remission seems to indicate a cessation of symptoms, a return to normalcy, a complete reversal of disease. I know that's a very black and white way of looking at it, but since I was diagnosed I've never had that kind of clear cut difference between disease and.....not disease. I just seem to have varying degrees of disease activity.

 

It's like a pot simmering on the stove. Sometimes the heat gets turned up and the pot boils over, and sometimes it just simmers away in the background, but no one ever turns off the stove.

 

I was at the eye doctor the other day, dealing with some fun inflammatory eye problems (thanks Crohn's!) and I was asking him if the increase in medication might help with the inflammation in my eyeball. His response:

 

"I think it might. You know, some people are just really susceptible to inflammation. Inflammation from your Crohn's, inflammation in your eyes, it's all just inflammation. You just have a lot of inflammation going on, so lots of things get irritated. You just have a lot of inflammation going on. Inflammation inflammation inflammation inflammation inflammation inflammation inflammation."

 

Just kidding about the last part, he didn't really say it, it's just that after the first part I kind of tuned him out and he sounded like that teacher in Peanuts. Also, thanks for the pep talk Doc! This is why I don't feel guilty for stealing eye drop samples from your exam room.

 

I had a really good two months before April (and now May). Even a few good days will lull you into a false sense of security, so imagine what two months will do. All of the work you do in those good months, all the progress you make and the positive steps you take in your life, grinds to a halt. I was beating myself up the other day for not pushing through this kind of inertia that takes hold when I'm not feeling well, and I realized that along with the symptoms comes exhaustion, a kind of exhaustion I just settle into now. I just hole up in my bed with my cell phone, good magazines to take with me to the bathroom, six different layers of blankets (for the night sweats, when I get too hot and then when I freeze because I'm covered in sweat and have kicked half of the blankets off the bed), and an easy sense of resignation.

 

That's what I'm working on now. That's what I've been working on for the past year, when I haven't been blogging. How do you plan a life around an unknown quantity of good days, and how do you push through the inertia, the resignation, the self-defeat that so easily invades the bad days?

 

I haven't figured it out yet, but I'm trying.



Post #93: Slow poke

WHY DOES THE CHAIR NOT RECLINE?!

Yesterday my nurse ordered some blood work, and for some reason I had a strong compulsion to actually go out and get the damn labs drawn. I could have waited until the next day; I wasn't having weird new symptoms; I certainly wasn't in a hurry to get poked (ha); but for some reason, in the back of my tired, spacey, drugged up mind, I thought, "best attend to this now." Fine, sick brain, I'll get right on it.

Even though I was nauseous and a little dizzy, I pulled up my yoga pants and drove to the neighborhood clinic where I usually get my blood drawn. I had a rockin' a capella CD in the car, a full bottle of Gatorade, and the desire to actually accomplish something with my day. I expected to be in and out in 15 minutes. This was only a two-tube visit.

Remember how a few posts ago, I mentioned that a nurse told me my one good vein was developing some scar tissue? Wishing to preserve the functionality of the aforementioned vein, I suggested that the we perhaps try to fill the vials from a new source during this particular visit. Surely, between both arms, hands, legs, whatever, I had another viable option, no?

Actually, no.

I used to have a desperate fear of getting blood drawn, but a few dozen blood lettings have take the edge off that particular phobia. As long as I don't watch it happen or discuss it while it's happening, I'm usually pretty good to go. I'll make small talk as you tighten up that tourniquet; I'll make jokes with you as I pump my fist; I'll even hold the damn cotton ball in place while you root around for a band aid. But unless you want to unpeel me from the floor, that's as close as you'll let me get to the action.

Yesterday, the cheerful nurse scoured my arms, diligently pulling my flesh taut to check for good contenders, poking and prodding beneath my skin with a practiced touch. Vein #1 seemed like a sound choice; a heating pack was deployed to bring it closer to the skin; and: poke!

You can tell when shit is going down incorrectly. Here are some things you do not want to hear during a blood draw:

I think it's in (that's what she said....sorry)
God, your vein is so squirmy! It's squirming all around
I had it a second ago
Hmmm
Yeah, this one's done

When you're about to pass out, there is a clarity of thought that occurs. You would think it would be the opposite; as the blood rushes from your head and extremities, (protect the organs! protect the organs!) it would only make sense for the brain to compensate by thinking pleasant nonsensical thoughts like unicornfluffycloudjustinbeibericecreamcake before you hit the deck. Not so-my brain snapped to attention like an angry, angry drill Sargent:

OK BODY! You are about to pass out! That is why it sounds like you are under water! CAN YOU MAKE IT TO THE BATHROOM!? There is a bathroom 2.5 feet ahead, can you make it? I SAID CAN YOU MAKE IT MAGGOT!? You WILL NOT PASS OUT IN THIS CHAIR do you hear me?? We pass out on floors, not chairs. We have prepared for this. We have trained for this. DROP TO YOUR KNEES SOLIDER!

As I was deciding whether I was going to puke or lose consciousness first, I made the rational decision to do either on the floor instead of the stupid blood letting chair THAT DIDN'T RECLINE. After informing the nurse that I "just didn't feel well right now hold on" about 10 times (not that she was coming after me with another needle or anything), I told her that maybe it would be nice to "just sit down on the floor for a while." She directed me to the nearest wall and told me to lean against it and slide down to the floor (done!). I was sweating profusely and holding on to my Gatorade with a death grip. My wet hands connected with the lab floor. I believe the whole situation could be described as "ick." I was flopped onto the linoleum like a flaccid tuna.

The nurse awkwardly propped my legs up against a cabinet (the space was not designed for this purpose), and with a few sips of Gatorade and some nostril breathing, I calmed down. The whir of the centrifuge was soothing. I consoled myself with the fact that the floor looked pretty clean, all things considered. The nurse hovered, brought in her supervisor who called me honey and told me "it happens all the time," and then another colleague. The whole time, I apologized and told her I have tricky veins and a lot of other people have had problems and it's ok! The three nurses crouched beside me on the floor, and once again felt up my arms, pushing and poking and pulling, six hands trying to find a better vein. Another was selected; I asked to stay on the floor; and supplies were spread out on my lap like a vampire picnic, needle and tubes and alcohol  wipes, oh my!

Again: poke!

Though painful, this one had purchase. I could tell it was in a vein, and I could feel the nurse pushing it farther up and up to make sure it stayed there. I felt her attach a tube, and I breathed a sigh of relief until I realized no one was talking.

Me: Um, is it in?
Nurses: (Silent)
Me: Well, I can feel that it's in. Is it working?
Nurse 2 hands a new tube to Nurse 1: Well, I had a good first flush and now nothing is coming out.
Me: (slightly hysterical): What do you mean nothing is coming out?!
Nurse 1: Well, a few drops. It's just going really slowly.
Me (starting to get nauseous): Do you want me to pump or something? HOW MUCH BLOOD DO YOU REALLY NEED!?

The nurses conference-well, maybe half a tube only for this test, a little more for that one......

I finally call time out-obviously this isn't working. The nurses agree, the needle comes out. Nurse 3 comes forward and assures me she's "really good with hands." I'm still on the floor, and I make an executive decision: I have one more poke left in me. Perhaps it's time to go with the sure thing, the one good vein, scar tissue be damned.

Nurse 1 has given up at this point; Nurse 3 is elected to do the final draw. After combing over both hands, she gives up and readies old faithful.

"I'm a really slow poke!" I look at her with wide eyes. Seriously!? The ringer is a slow poke? AWESOME.

Seeing my raised eyebrow, she laughs. "No, no, it just takes me forever to set up! Ha! I get it, slow poke. A guy last week made fun of me for that too! Don't worry, just a little poke!"

Ol' bluey fills up the two vials like a champ. I want to tell Nurse 1 not to feel bad but I don't want to seem like a jerk. I get my band aid(s) and slowly rise from the floor. They tell me to wait, but I want to go outside where it's cold and away from this little lab alcove. Because I have been seated in a "V" shape for more than 20 minutes (back against the wall, legs up against the cabinet) the entire right side of my body, from ass cheek to foot, is numb. I kind of limp off, and I can feel the nurses staring, but I high tail it out of there and wish everyone a good day, or at least a better day then I am having.

On the way home, I buy myself some soup and some bread. That night I eat toast for the first time in two weeks. I accomplish something after all.