Adventures in Crohn's Land: Part 924

Guess what I had yesterday......

A small sampling of exchanges from yesterday's colonoscopy, presented without comment:

Trying to explain the art of anesthetization: 

Anesthesiologist: It's like tequila. After a few shots, you're pretty comfortable and happy, but after 10 shots we could amputate a limb.
Me: That's kind of a grim example.
Anesthesiologist, looking shifty: That's how we used to do it in the old days. (he was maybe 5 years older than I am).

Two anesthesiology nurses were wheeling me to the procedure room-they went down the wrong hallway first, so I naturally did a pageant wave to the random people in the offices there. When they wheeled me into the right room I was facing the wrong way, and they had to spin me 90 degrees, which is difficult when the room is filled with large equipment and monitors and wires. Another nurse was helping them. 

Nurse #1: Wheee! It's like a ride at Disneyland!
Me: With better drugs!
Nurse #2, under his breath: Probably cheaper, too.

One of the anesthesiology nurses was wearing a pair of clear goggles pushed up her head. 

Me, noticing: Um, I can't help but notice you are prepared with goggles. WHAT DO YOU THINK IS GOING TO HAPPEN IN THERE??
Nurse: Oh! I always wear these! Nothing to worry about!
Me: Squinting, unconvinced.
Nurse: You're funny.

Consolation prizes

 

waterwaterwaterwarter every day I'm hydrating

 

I've had a pretty rough few weeks. More specifically, a spectacularly awful week followed by a few weeks with patchy awfulness. I'm not sure if my medication isn't working anymore, or what's going on-and the only way to find out is to strap on a miner's helmet and travel deep into the recesses of my angry, angry colon. I thought I could get through 2015 without a colonoscopy, but the JOKE'S ON ME.

 

At the end of the awful week, I had a doctor's appointment, and my doctor wasn't impressed when I mentioned that I had broken my non-colonoscopy prep record for number of bowel movements in a day. That was not a good day, although I think I managed to watch at least 1/2 a season of OITNB in between bathroom sprints. During the appointment, I was crying nonstop, not in an emotional way, more as a weird side effect of being dehydrated. I don't know if this is a thing in general, but when I'm really dehydrated, my eyes kind of leak (ironic, no?). It must look really weird, to not having a crying face, or a crying voice, but just randomly crying eyes-I think my doctor was kind of wigged out. We talked about different treatment options, and at the end, I informed him that he needed to hydrate me. I believe my exact words were, "either you do it or I will find someone who will," which was kind of an empty threat because there aren't really neighborhood hydration pushers, although if there were I would totally hit that.

 

Maybe it was the calm, creepy crying, or just my general air of resignation, but he agreed. I totally got pity hydrated, and I will take that all day every day. That is one of the things I like about my doctor-I think he genuinely feels badly when things aren't going well for me. I also think he wanted to give me something, or do something, to make me feel better. Which it did.

 

You know what's fun? Trying to stick really small veins when a person's dehydrated. The office wasn't really set up for IVs, and so there was some general scrambling for an IV pole and supplies. The nurse who came in seemed vaguely concerned about the whole thing, which is never a good sign. She talked incessantly about the process of inserting an IV, and poured over my arms and hands looking for a good candidate: "don't mind me, I'm just going shopping!" Here's another fun fact: though I am in fact built like a cart horse, my veins are Shetland pony small.

 

Now here's where I get a little judgmental: as she was running her hands across own, I noticed she had a small tremor. I'm hard to stick in the best of circumstances, but I was tired, dehydrated, and praying the immodium would hold, and all I could think was fuckmefuckmefuckme. I showed her my one reliable vein, turned my head, and braced for the worst. She narrated the whole process, and I mean the whole process: "Ok, a little poke. I think I'm in, hold on, let me feel.....so far so good.....let me just check.....I'm going to push it in a little farther....wait.....I think I went through....yeah I can't get it in...." and on and on and on. When it was obvious that one didn't take, she went through the whole process again, looking over my arms (front and back), hands, elbows.....and then she tried again.

 

This one hurt worse than that last one-I've never had someone really shove a needle into a vein that forcefully (excuse me while I pass out even writing this). She kept up the narration this time, push, talk, push harder, until I finally told her, it's ok if you don't tell me what's going on! Which she ignored, and finally she gave up on that vein as well.

 

At this point, I was debating how badly I wanted the hydration. Like a lot of choices involved with this disease, it was a case of, do I want to feel crappy now, or feel crappy with additional crap in hopes that I might feel better in the future? Thankfully, the awesome PA had been observing this whole procedure and finally stepped in to bring in the ringer. Every medical facility has one-the chosen one, the vein whisperer. This PA wears funky glasses and calls everyone honey and sweetheart and gets away with it. She expertly managed the situation, calling in the ringer and gracefully excusing the current nurse without ruffling any feathers. The nurse seemed relieved to be let off the hook, and praised me for being a really excellent patient (by passively laying back and not moving? gold star!).

 

The ringer stepped in, and I could tell from the moment she stepped into the exam room that she was a bad ass. She was from another department, but you could tell she was used to this situation, even relished it. She had spiky silver hair and ice blue eyes, and moved with quiet confidence and grace. I told her that she was welcome to try any vein she wanted, but I wanted some lidocaine first-and that's when she pulled out two tiny syringes full of that shizz, with a gleam in her eye. I almost proposed to her on the spot. She selected a vein, and when I told her the previous nurse dismissed it as a poor candidate, she looked me straight in the eye and said, "well, she's not me" in a gravelly voice.

 

I'm not really attracted to the lady folk, and this could have been the dehydration talking, but I kind of wanted to make out with her a little at that point. Now, do you think she got it in? She fucking got it in, of course she did. It did take quite a while, as she went at a glacial pace, and apparently got blood all over the floor and my arm. But she left with a big smile on her face and put a big one on mine. Rowr.

 

When I get rehydrated, there's a point where I can feel everything unclenching, relaxing. My headache disappears, I feel calmer. Sometimes a girl just needs a little pity hydration to perk her up.

 

I'll have the colonoscopy next month, and I hope Gatorade and good old H2O can control everything until then, but if not-I know just who to call.



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. 

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.

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.

Post #89: Calm, rational, appropriate

mmmm, fluids.

At 1:30, you wake on the inhale; the pain is so sharp, so sudden, it has literally taken your breath away. In the hazy early morning border between awake and asleep, you consider for a moment the possibility that you are having a very disturbing, realistic dream.

Until you try to move your body.

Unthinking, you tried to flip over and glance at the clock, but the pain in your abdomen is so intense, so deep, that any movement feels like ripping. You are frozen, stuck-your breath is shallow, your body quakes. Your hands shake and your body sweats.

This is a pain you have never felt before. You whimper and consider the objects at hand that you might bang against the wall to attract the attention of your housemate. You are afraid.

In your old car, the one with the leather seats, sometimes during the summer you would forget to put down a towel, and your thighs would stick to the warm hide. This is what it feels like, except with your intestines-pulling and ripping away from something hot and painful, sometimes sticking, pulling and stretching and tearing again with each inhalation. You force yourself to breathe, and unfurl, even as your body wants to curl into itself in agony.

Eventually, slowly, you turn onto your back. And then your side, and then you sit up. Glance at the clock. Realize this is not a dream. Force yourself onto unsteady legs, feeling nauseous and hot and shaky. Go to find help.

The tears come, because in the quiet dawn it is all too much. You call the nurse hot line and the doctor on call. They ask you a barrage of  standard questions. You are asked to rate your pain: 10 when you woke up, 6 now. The fact that you are even calling the nurse hot line at this point is a testament to the lessening of your pain. A half hour ago, you would have had to call 911, because you couldn't have made it down the stairs.

They tell you to "come in." You get dressed, your housemate gets dressed, and you drive into the city in silence. It is dark and the freeway is nearly empty.

You make it to the emergency room and your housemate cruises into the ambulance bay, backs up, parks in police only parking, backs up, and finally parks directly in front of the sliding glass doors, the nose of the car nearly touching the glass. At each turn, the security guards half rise from their seats, ready to enforce parking rules in an empty lot. Up and down, like traffic puppets. You walk in and check yourself in to the ER.

As you wait, a young man harasses the intake nurse, badgering her for information about his girlfriend, who he insists "IS FAMILY" and apparently has a head wound. The same security guards warily circle and observe his behavior and as the nurse calls your name, they have moved in tandem to confront the man. You hear raised voices as they take your vitals in a small vestibule that smells like takeout Thai food.

They take you to a large room and measure your vitals again. You explain your symptoms, again. You've never been in the ER of a large, urban hospital (for yourself, anyway) and it occurs to you, as you shiver on a gurney amidst cabinets of scary looking equipment (gauze, suction hoses and buckets, intubation tubes, something called a cut down kit) that this is where people come when they are shot. You and your aching abdomen feel like ER impostors.

You are prodded and a nurse comes in to insert your IV. You offer up your one good vein, and as she tightens the rubber tourniquet and slaps your skin, you worry about the size of the needle. You already feel like throwing up and your last IV insertion was painful. The nurse sticks you, and you feel the needle thread up your vein....until it stops. The room spins a little. "Come on, come on" the nurse whispers, and keeps pushing. The room spins a little more. You feel a trickle of blood drip down your arm, and the course gauze against your skin and the nurse wipes it away. Wipe wipe wipe. Finally, she's in-you can feel her relax. She tries to take blood, and tightens the rubber band on your arm; it digs into your flesh. She flushes the line and secures it to your skin. You both exhale.

She cheerfully explains that because this is the vein they always use for blood draws, there is some scar tissue she had to "push through." You smile even as the room starts to tilt again, because all of this talk about blood and veins is making you sick.

They offer you some Zofran, which you take, because you don't want to vomit into one of the large teal basins they keep stacked in the cabinet. Another line, crossed-you remember that when your family member was dying, they would give him Zofran after the chemo. Throughout all of your IBS/IBD adventures, you refused to take the "cancer drug"-but your family member is dead, and it's 3 in the morning, and you don't care. The medicine works quickly.

You put a gown on over your yoga pants and are thankful you remembered to wear a sports bra, so you're not waving your boobs all around the ER. You pee in a cup, and wait. You wait for blood results, and you wait. You wait for a pregnancy test so they can send you to CT. All of this waiting makes you feel less guilty for peeing on the floor a little when you filled your cup in the bathroom down the hall, pulling the IV behind you and trying not to pee on your gown. It is an ER after all, and you're sure the floor will see much worse fluids before the shift is over.

The nurses, and doctors, are unfailingly kind. They bring warm blankets and offer you pain meds, which you stupidly decline. Somewhere in the back of your mind, you're afraid that if they offer you the meds, and you take them, then your pain will go away and they will never believe you had it in the first place. You enjoy  not wanting to hurl and absent-mindedly rub small circles over the tender spot on your side.

They tell you there is blood in your urine. Kidney stones?

Finally, they wheel you into CT. The nurse who fetches you is almost courtly in his demeanor; there is something old fashioned and respectful about him. He straightens your blankets and makes sure you are comfortable. As you pass through the corridors, you joke about getting the one gurney with the squeaky wheel, like the one grocery cart with the squeaky wheel, and his laugh is quiet and musical. He offers you a purple gloved hand to help you raise yourself up and leads you to the machine, carefully depositing you and securing your legs against a bolster. He and the tech make small talk.

Someone injects you with dye, and sends you in and out of the giant whirring donut machine as they take detailed pictures of your abdomen. The dye courses through your veins, igniting them, making your lips tingle, making you taste pennies in your mouth. The dye makes you hot, like your entire body is blushing. Your hands, above your head, drip with sweat. When it is over, the tech flushes your IV because the dye is "sticky" and she doesn't want it clogging the line. You think of the dye floating through your body, coating your organs like a sticky BBQ sauce. You wish she could flush it out of your whole body, not just your IV.

You wait for the results. Feeling guilty that you dragged your housemate to the ER, you try to make jokes, but she passes out asleep against the case containing a day's worth of discarded needles. You have a lady nurse, and then a male nurse with old-timey mutton chops. Another male nurse with tattoos on his arms tells you about his service in the military, and how he travelled the world, ticking off the various countries on his finger tips. He is from another state, and says when he is sick he wants his mom more than anyone else. You smile, and he says, "Dudes need their moms more than anyone! In the military, everyone is so hard. You just want your mom. It's like, you're soft, you're my mom, you'll take care of me." Even though you are probably roughly the same age, you immediately want to mother the muscular ex-military nurse and make him a lasagna.

You wait, and feel thankful for the kindness of the nurses and the fact that you have medical insurance. You wonder how much this trip is going to cost you.


There is a shift change, and nurses and doctors flood the hallway outside your room, talking animatedly about dates and patients and motorcycles. Out of the corner of your eye, you see a young woman walk by with a giant bandage on her head, telling the nurse to discharge her to her waiting boyfriend, who you assume is the guy who tangled with security hours before. It feels like a completed ER vignette. She stalks by in high heeled galoshes, even though it is not raining.

You wait.

Five hours after you have first been admitted, a new doctor comes in to tell you the results of all of your testing are unremarkable. Seeing your face, he tries to make you feel better by telling you that 3/4 of cases involving abdominal pain go unresolved. Again, you feel like you have failed ER 101. You are still in pain and there is no reason. There are also no more chances for painkillers. You are discharged, less nauseous but still in pain, with no explanation for your sudden, scary pain.

The sun is up now; you decide to walk over to your gastro's office in the adjoining building and see if you can talk to his nurse. She sees you and says the doctor may want more testing. She describes all the ways Crohn's can make your guts feel like yours feel. On her computer, she scrolls through your test results from the ER, when you see this description:

 

31 yr old female presenting with UQR pain. Calm, rational, appropriate demeanor. Seems mildly distressed.

You rub your side, again. The pain is still there, present with the slightest touch. Calm, rational, and appropriate: the title for your  new memoir. Unfortunately, you feel anything but.

Post #88: Taking care of business

Yup. Still pissed about this.

Get it?! Stall? Like a BATHROOM!? Oh CCFA, you're so clever. (sarcasm!)

I am feeling super tired and gross today (partially my fault, partially my colon's fault); it's been a busy week of crossing stuff off my to-do list, and it's like I'm in an end of the week energy slump. Some stuff I did:

1.) Got through the first appointment with my doctor without crying.
This is big. I met him pretty much a year ago, and have always done the ugly cry in his office. Perhaps it was getting over the hump (ha, hump) of having him meet my AAC in person (goodbye, last vestiges of dignity!) but I felt like this was the first time I was able to have a calm, rational discussion about my situation without being emotional or reactionary.

Since it was my one year anniversary, I really wanted to ask him if he was SURE, really sure, that this was Crohn's. As I didn't want to seem like a complete moron, I may have phrased it like, "Are you sure you didn't find a magical tape worm up there? This is definitely Crohn's?" but the answer would have been the same: yes. It may seem odd that I'm still questioning this, but (and this is difficult for me to believe) Crohn's has only been on my radar for a year. I have only had this diagnosis for a year. It's not like a pregnancy test-you don't pee on a stick and have a little blue colon pop up, like, congratulations! It's IBD! So, after two colonoscopies, as assload of testing, a few flares, and a couple dozen handfuls of steroids later, I guess my stick finally turned blue.

2.) Got scanned
Since I am steroid free (woooo) I finally got a DEXA scan. Basically, they scan your spine and hip to make sure your bones aren't disintegrating due to prolonged steroid use or lack of calcium absorbsion. Sexy! This was the least invasive procedure I've had this month. (see #3)

3.) Got probed
And then learned this bit of intel: did you know that if you have an autoimmune disorder, you need yearly PAP smears? I mean, if you're a lady. I DID NOT KNOW THIS.

4.) Exercised, and felt ambivalent about it
I am so tired of being tired. Every time I work out-something I convince myself is in my best interest-I need a 2-3 hour nap. After a tough work out, I used to like the feeling of sore muscles-a little reminder of all the ass you kicked at the gym. Now, as my butt muscles protest when I climb the stairs, it just makes me cranky. Like, great, I'm exhausted and now I'm sore too. DAMN YOU TOTAL BODY CONDITIONING! It just makes me question the point of working out at all, right now-I started this because I thought it might give me more energy, or some kind of mental boost, or calm my AAC, but it just makes my ass tired (and not lifted). Sigh.

5.) Donated blood (to the lab)
A quick AMP story: for whatever reason, the phlebotomists at the hospital are uniformly hilarious. After my appointment, I went to get blood work done, and as the guy was cinching my upper arm with rubber tubing I peeked at the number of vials (4) he was about to fill. He was a pretty quiet guy, and when he saw me looking at the tubes he kind of smiled and handed me the packet with the needle in it. "Did you want to draw the blood? Go for it." I laughed and said I was just seeing how much blood he was going to take. Without missing a beat, he replied, "Just the 4 the doctor ordered. And then of course the extra 2. For Craigslist." He was so matter of fact about it, my eyes got big and I kind of looked at him in horrified confusion before it registered as a joke. We both started laughing and then we talked about how weird it is that some doctors are squeamish about their own blood. Good times.

That's all I've got for now. Over and out.

Post #86: A day in the life (of an AAC)

After an exhaustive search, it was determined that I have no candy up my butt.

Oh, colonoscopies. First thing's first-everything is pretty much the same, which is still not normal, but (pending the biopsy results) also not worse. Hooray!? Now, let's make a pro/con list of this most recent procedure:

Pro: The morning of, a friend sent me the following encouragement:

"For tomorrow, because I have no idea what to say before someone goes in for a roto-rooting: [pounds fist against chest then raises it in salute]."

AWESOME.

Con: Prep. Even though the pill prep was less vomit inducing than drinking the "jug of fun" (as a pharmacist called it the other day), it still required swallowing 32 giant salty horse pills and then, you know, cleaning house. And by house I mean colon. And by cleaning....well, you get the picture.  

Pro: It's over!

Con: For whatever reason, they wheeled me into the treatment room 45 minutes early and left me there, giving me ample time to stare at the apparatus that would soon be introduced to my AAC. It is really, really long, and the controls look like a video game joystick. Also, I couldn't really explore the room (extra blankets and emesis basins and extra lube, oh my!) because my "tether" (whatever you call the tube connecting me to the IV) was too short. Not that I tried....

Pro: The nurses there are SO FREAKING NICE. The nurse in the procedure room was joking that I had really come in for a day at the spa, and when I left I would have a spray tan. My doctor joined in: "let me go get the cucumber slices!" I'm not sure what prompted this, or why everyone thought it was funny at the time, but I appreciated the attempt to bust out a little humor pre-butt scope.

AMPs for the win!

Con: This is kind of a big one. For a number of reasons, I wasn't able to be fully sedated for the procedure. I was high, sure, but also aware that there was a pokey foreign object in my colon. I kind of floated in and out, but I remember being uncomfortable and kind of panicked about being awake, but also too drugged to really panic, if that makes sense.
In a last ditch effort, they gave me some benadryl, but the problem wasn't a mosquito bite, but more a giant flexible hose in my AAC. At one point, I must have closed my eyes, and I heard my doctor say, "Oh good, she's finally asleep" to which I replied, "NO ACTUALLY I'M STILL HERE."

Good times!

Pro: Even with the SURPRISE! discussed above, I am still not scared of having a colonoscopy. Nothing truly terrible happened, and I won't be developing a complex over this. The benefits far outweigh the downsides, and awake or not, I'll still have another when I need one.

So-colonoscopy? Check. Follow up appointment scheduled? Check. Back to eating delicious solid foods? Checkcheckcheck. Decision on whether to start the new scary medication? TBD.  

I feel like this was a hurdle (a hurdle I asked for, to be fair) that I had to clear to start off 2013. One way or another, that happened, so now it's on to the next.

Post #59: Baaaaaaa

Yup, that's about right. Except my undercarriage is cleaner.

So, I'm feeling a little SHEEPISH today. Get it? The title? Get it?? Whatever.
 
I couldn't do it.
 
It doesn't have anything to do with the needle part, or the injection part-it has to do with the what's inside the needle part. I'm just not ready.
 
I think that cumulatively, I cried (and snotted!) enough to fill that yellow bucket yesterday. It was hysterical crying central up in here. I made my decision, made a new plan, and I'm guessing the new med will keep in the fridge for a while.
 
I don't feel relief-I think this drug may still be in my future-but if/when I take it, I need to be in a different place than I am now.
 
If all of this sounds kind of vague and confusing, then I'm adequately conveying the intense back and forth, emotional whiplash involved in trying to make the right choices about my health.
 
I don't have anything to add, really, except to say that I could write many an AMP post about my nurse/doctor team. When I was called the nurse this morning, I almost started crying again because she was so incredibly understanding.
 
When you have a disease like Crohn's, in my experience, there are a lot of voices telling you what you should do. Everyone has an opinion-the internist, the specialist, the nurses, the naturopath, the support group members, the nutritionist, your friends, your family, random strangers on the internet....it's a cacophony (SAT word!) of jumbled voices, each shouting to be heard above the fray. It's hard to think when your ears are assaulted with all of this noise.

To be told, by my nurse, that I have to be comfortable with my treatment options because it's my body, was really affirming. I sometimes forget that I can have a voice too.

So it's baaaaaaaack (sorry) to the drawing board. I don't know what my future holds-it may still hold the pre-loaded syringes triple wrapped in my fridge (plastic bag, paper box, paper bag-safety first!). They're locked and loaded, ready to go-but I'm not. I'm just not ready to commit.

Maybe someday, but not today.

Post #49.6: I love me an AMP

I love to count vials of blood! 1,2,3,4,5,6,7! 7 Vials of blood! Ah ah ah.

I feel like refried bear ass.
I swear this blog isn't anti-bear!
Also, I'm sick of talking about it.
 
 
SO!
 
 
Here's a new kind of entry: one in which I discuss the Awesome Medical Personnel (AMPs) who have made all of the crappy procedures and testing and waiting around and uncertainty and fear that much more bearable (and in some cases, that much more amusing). Seriously, it helps, and I'm super appreciative. Not all of the doctors and nurses and techs and assistants are hilarious and outgoing; not all of them crack inappropriate jokes when I burst into tears of frustration or go out of their way to brighten otherwise crappy situations. But as a whole (and I'm having a really hard time thinking of any real assholes) they have all been patient and kind. Whenever I'm feeling pissed off about my AAC, or feeling kind of miserable and frustrated with life (this whole week!) an AMP really stands out, and I am grateful for the unexpected dose of levity and compassion.
 
Yesterday I went in for more blood work, after getting a bunch of blood work done at Urgent Care (so, over the 2 days, 7 vials. see visual above). I didn't know that the lab had different hours than the clinic, and so I rolled up at 11:45 and noticed the sign that said "closed between 11:30 and 1pm." I checked in with the receptionist and fully expected to have to slowwwwwwwwly peruse Whole Foods for an hour while I waited, but she said she would check with the nurse and maybe she could squeeze me in.
 
The door opened and I saw a familiar face: this particular nurse checks my vitals before every appointment. The first time we met she told me some random Gallagher joke (the watermelon smashing guy) and I knew I liked her. She ushered me back to the lab area, and while I thanked her for seeing me she shrugged it off and said she just wanted to make sure my specimens went out with the noon collection.

I have one dependable vein, and I told her they had taken blood the other day, and asked if she could still use it. She narrowed her eyes in concentration and poked at it, and then poked at my other arm, and then declared that she could just move farther up and it would probably be fine. I told her to go to town.
 
I turned my head; I felt the cool swipe of alcohol and then the slight prick of the needle and she burst out with, "BOOM SHAKA LAKA BOOM SHAKA LAKA I'm IN!" and I turned to look at her as she did a kind of victory wiggle as she filled the vials. I laughed, and was so startled by her outburst that I turned to face her. I normally don't like to see the blood as it's drawn, but I was so distracted I saw (and heard and felt) the whole operation and I didn't feel the least bit queasy. We chatted away, comparing local emergency rooms and various maladies and before I knew it I was holding a piece of cotton over my twice poked vein and she was labeling the vials to send to the lab.

She taped me up and I thanked her again and she told me to feel better and I left the clinic smiling, which was no small thing.