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.



Nothing to crow about

DRAMATIC DATELINE STYLE REENACTMENT

There's a big magnolia tree outside my window, with a robin's nest nestled in the crook of one of the larger branches. It was empty last year, but a few days ago I woke up to the whoosh whoosh whoosh of bird wings. A mama bird was flying around the yard collecting moss and hopping around the outside of the nest, plugging holes and freshening up the mud and twigs for the arrival of the next generation.

This pleased me, as I saw it as a generally hopeful sign of spring, a time of new beginnings and possibilities and other Hallmark whatnot.

This morning, I heard the mother robin going batshit insane, pacing along the gutters of the roof opposite her nest, screaming towards it. Putting on my glasses, I saw a fat black crow hovered over the nest, shards of baby blue egg and yolk stuck to its gaping maw of a beak. He (not sure why I thought of it as an asshole male bird) looked, if you'll excuse my anthorpomorphization (I know that's not spelled right, DEAL WITH IT) of the animal, pleased with himself, his large glossy body looking especially menacing in comparison to the small nest he was pillaging. To add insult to injury, he took his time with his breakfast, lingering long after the last egg was consumed, the mama bird increasingly, and impotently, furious.

It was a dispiriting way to start the day (more so for the mother robin, I imagine). The mother bird hasn't returned, and the once tidy nest is in disarray, as though tossed in a burglary. I keep the blinds closed so I don't have to look at it.

I'm not going to try to draw some deep and meaningful connection between this little vignette and the current state of my health, both because that is some serious Freshman Lit 101 shit and also because I'm too tired to attempt that manner of pop-psychology gymnastics. But things are not good right now, and it's hard to remain even-keeled and dry-eyed about the whole thing.

Today was one of those days where I wish I had a giant dog bed I could park between the toilet and the tub, so that I could curl up and doze between bouts of angry colonic activity. It was one of those days when I had to practice, in my head, the polite excuses I could use if the furnace repairman tried to ask me a question or hand me a bill when I was about to run to the bathroom.

"If you'll just hold on a minute, I have to run upstairs."
"I have the stomach flu, so if you could just leave the bill on the table that would be great."
"I left my checkbook upstairs, hold on while I grab it!" (10 minute interval and several toilet flushes follow. smooth!)
"Hold on, I'm expecting an important phone call from my doctor's office, I'll be right with you!"

And on and on and on. Luckily he kept himself occupied during the most active part of the morning, far away from the bathrooms.

I am so tired. I'm tired of having to think of excuses for my AAC, of canceling plans, or of actually forcing myself to follow through with plans and meet ups and feeling sick the whole time, or worried about getting stuck in traffic with what my foreign neighbor would call "a dodgy tummy."

I'm tired of waking up with what I call the goat sweats, wherein I'm pulled from sound slumber by a general feeling of dampness and then get a whiff of myself smelling, you guessed it, like a goat who's just gone to Zumba class.

I'm tired of forcing fluids when the last thing I want to do is drink anything because I'm so nauseous, when even the weight of water in my stomach feels like too much.

I'm tired of eating foods that are white, whitish, beige, brown, or taupe. Noodles, toast, plain applesauce, rice. I'm tired of simple foods like hummus tasting like a vacation for my tongue, when there is a great wide world of delicious food that I could be eating.

I'm tired of being tired, to an extent where putting together sentences and remembering specific words feels like work.

I'm so tired, in fact, that I actually called my doctor's office and requested steroids, which I hate, because I want to feel better.

I picked them up today. I'll start them tomorrow. I'm too tired to think about the side effects, or getting work done, or putting away my laundry, or doing anything beyond travelling between my bed and the kitchen and the bathroom and couch.

Tomorrow, I'll take the pills with a swig of Gatorade, hoping for an energy assist from the quick jolt of glucose to my system. I'll eat my toast and hope for better things, Hallmark sentiments and all.


It's all I can do.

Post #117: I could medal in this kind of running (or at least place)

Different kind of running.....
Confidential to the lady in the grey spandex-you might want to invest in some different pants because I CAN SEE YOUR REPRODUCTIVE ORGANS geeze. 

Hello again blog! Welcome to 2014! Happy New Year to everyone who reads this blog and their colons/various digestive apparatuses. 

I could go in a lot of different directions in this post; how it's my two year diagnosis anniversary; how it's been a full year on my scary injectible medicine; how various colon attacks ruined both Thanksgiving AND my birthday dinner. 

However, this is a blog post about how people don't know shit about Crohn's (see what I did there? eh? eh?). 

This week I volunteered to help cook a meal for an area non-profit, and I ran into a family friend who I hadn't seen in a decade or so. She and her family were a definite fixture of my childhood; her daughter and I got into all kinds of mischief at various holiday dinners, and amused each other while the adults were being boring by sneaking away to the basement and pretending we knew how to play pool (I still don't). 

I was more than happy to see her, and we shared cell phone pics of our family members while dressed in ugly borrowed aprons, surrounded by huge vats of boiling water. Then came the inevitable question: what have you been up to? 

I kind of came to the decision that I would not lie about my current situation with people close to me, and since this woman had known me since birth I didn't feel the need to rattle off the jobs/hobbies/volunteer work I was into two years ago, pre-Crohn's. I told her I had been diagnosed with Crohn's and I wasn't working that much. 

Family friend (FF): Crohn's? What's that? 
Me: Oh, it's a disease of the digestive system. (blank stare) An inflammatory bowel disease? 
FF: Oooooooh ok. So, you get the runs a lot? 

Let's pause. 

OH HOW I HATE THAT PHRASE. Having "the runs" sounds kind of comical; I picture a comedian with their knees fixed together, kind of crab walking heroically toward the bathroom. Subtext: they probably won't make it, and that's funny! It's funny to lose control of your bodily functions in public! There is a cinematic tradition of using poop as a comedy prop, whether someone gets turned upside down in a port-o-potty (see: Jackass, the movie), clogs the toilet of a potential date (see: Along Came Polly, a thousand others), or just completely loses control of their bowels all together (see: Bridesmaids). In the last two examples, the characters have "the runs" due to food poisoning. They're sick, but it's still funny when they humiliate themselves. I guess I never appreciated that distinction before I got to deal with an AAC on a full time basis; I certainly laughed along with everyone else in the movie theater, but now it seems like kind of a cheap laugh, and one that hits a littttttle to close to home. 

Beyond any comedic connotations, "the runs" is just a coarse phrase. It's one of those cases where the word that describes the act is equally as disgusting or off-putting. Maybe it's because I use the word so much (to my friends, family, physicians, mailman....) but the word diarrhea doesn't gross me out the way "the runs" or (even worse!) "the squirts" do. At least "diarrhea" is somewhat respectable, and compared to the other terms, it's downright dignified. And when it comes down to it, I think that's what pisses me off the most: giving what to me (and a lot of other people) is a painful, unpleasant, occasionally debilitating condition a nickname is not respectful. It makes light of a situation that may be funny in the movies, but isn't funny in my real life. 

Back to the conversation: 

Me: Yeah sometimes. That's a part of it. 
FF: Well, that's too bad. 
Me (not really wanting to continue the conversation): Yup. 

Argh. Part of me wanted to justify just how much more Crohn's is than just a bout of diarrhea now and then: but wait! Don't you want to hear about the daytime pain? The night time pain? The endless doctor's appointments? The invasive tests? The dehydration? The malnutrition? The side effects from the meds? The sore joints? The night sweats? The hair loss!? I CAN TELL YOU ALL THE WAYS THIS DISEASE SUCKS!

But it wasn't the time or place, and I'm not the official ambassador for IBD. It's just frustrating to have someone reduce your experience to a piece of slang that doesn't begin to encompass the day to day struggles of Crohn's. Today, for instance, I ate peas for the first time in like 6 months and worried about that and had a lot of bowel movements and now I have a pain in my right side and I'm tired. And this was a good day! I ate out at a restaurant and ran errands and went shopping, all while keeping in mind where the nearest bathroom might be located. 

The last time I ate out and went shopping, a week ago, I was in the middle of Crate and Barrel when I felt that special feeling (cold sweat, cramps, pain) and knew I had about 2.5 minutes to make it to a bathroom or poop on the showroom floor. I did indeed have "the runs" and I did have to actually run to a bathroom and no, it wasn't funny, even a little bit. 

I know there is no succinct way to express this reality to people. I get it. 

If nothing else, what I take from this conversation is the desire to be more open and receptive when other people try to tell me things about their lives. To not assume I know all the answers, and to try not to belittle or reduce their experiences in any way. I'll try not to be as ass about whatever they disclose, and I'll let them tell me what it's like. 

Which I would have done with this family friend, if I thought she really wanted to know. 

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 #39: Thirsty girl

Lady, I hope those are all filled with vodka, because that is the only excuse for that outfit. Also, I enjoy your fancy headband and "welcome to the gun show" pose.



One. more. day. One more day of steroids and then I am back to where I started. I'm not sure that I'm in remission anymore, but then again I'm not sure I'm not......I guess I'll find out the old fashioned way, which is to stop taking drugs and see what happens. This is not the fun kind of suspense, like waiting for college acceptance letters (although that wasn't fun either), or watching Law & Order and trying to guess who did it (although I always guess), or watching elimination night on American Idol (which I don't do, because I'm not 12). Hey guess what? I DON'T LIKE SUSPENSE, especially when it has to do with my health. Nothing good can come from having a surprising colon. I'm just saying. I feel like that should be a t-shirt, or a bumper sticker at the very least. In my head, I picture a colon hiding behind a tree and jumping out at unsuspecting tourists. Eventually, some poor guy from Kansas will have a heart attack, and then I can say, SEE? No one enjoys a surprising colon! Officer, arrest that organ.

Anyway.

In my vast experience with Crohn's (vast being two seconds worth of useless expertise), I've found that part of the disease is playing lab rat (calm down PETA, they're testing all of this shit on me). I've been on steroids for 5 months now (yikes), in varying doses, and random other medicines before that, and while I understand that there is trial and error involved in finding the right medication for the job, it seems like I spend and awful lot of time shoving random chemicals down my mouth and waiting to see what happens, or coming off those drugs and waiting to see what happens. The whole process feels less like a calculated scientific endeavor than a birthday party game where the doctors and naturopaths blindfold themselves and randomly roam through a pharmacy, picking pills at random (that would be a fun birthday! note to self, call Walgreen's). So I guess the waiting game begins anew.

The reason for the delightful picture above is that I think part of the reason this week was so crappy (yes, yes, I know, all of the slang for "bad" is related to poo: crappy, shitty....well, those are the only two I can think of right now) is that I was dehydrated. It's very hard to hydrate yourself when you're trying to stay away from Gatorade, which I am, because I could sooooooooooo jump back on that delicious, delicious lemonade flavored wagon. The other problem, as explained by my nice naturopath and the rakish doctor at urgent care who pumped me full of three litres of fluid (ha!) a few months ago, is that when you're having a lot of diarrhea, and your AAC is inflamed, it's hard for your body to absorb water anyway. You can drink water until the cows come home, but if you're body's not absorbing it, you're not really solving the problem.

I can usually tell when I'm dehydrated-I get leg cramps, get dizzy when I stand up too quickly, and get super emotional (because, you know, it's not like I need to keep the water IN MY BODY). Looking back, this week met all of those criteria, but with the help of some Imodium I got myself back on track. However, if I had gotten my ass in gear, I would have gone to get rehydrated. If you've never been rehydrated before, let me explain how it works. You go in (to your naturopath's office, in my case, or to urgent care or the ER or wherever) feeling sick, and sluggish, and depleted, and they pump delicious saline into your veins, and suddenly peace and calm and coolness and rainbows (and, um, water) flow through your body. Your brain, which was stuck in anxious panic mode, relaxes. Mental clarity returns.

Once, when I was teaching, I was having an awful symptom day, and I scheduled a last minute appointment with my nice naturopath to get some hydration. He has these mini bags that take a half hour to drain (the bigass ones at urgent care or the ER take longer, although it also depends on how dehydrated you are), which he usually uses to deliver vitamin cocktails, but I take mine, in his words, "straight with no chaser." I came in crying (I always cry at the nice naturopath's, always) and nauseous and tense, with a headache and a general weariness with life. A half hour later, and it was like someone had doused me with normal person healthy juice. My brain started working at a normal pace again, my headache was gone, I was hungry. I went to work and was able to teach class with actual focus.

In Las Vegas, they have this bus that roams around and rehydrates drunks. Observe:



Really, it's a thing. You get on, they hook you up with fluids/vitamins/probably some spiked redbull shit, and in an hour or two you're good to go. If they had this where I lived, I would totally go, although I might swish with some vodka first so I could fit in with the cool kids.

When I was in high school (probably after a cribs marathon), I was adamant that if I had a mansion someday I would put a Subway in the basement and keep it staffed 24 hours a day so that whenever I had a craving, I could EAT FRESH. To that ridiculous list, I would also like to add one of those exercise swimming pools with a current you have to swim against (I think they're fancy) and a rehydration bus. Or minivan, I'm not greedy. Who needs Gatorade when you have an asston of saline at the ready?!

Post #13: Playing the waiting game

If you want a clean colon, you could buy this hot sauce. Or, you know, get Crohn's.

Day whatever of the taper. Day whatever of "cutting out white stuff."

I realized today just how much of my life I spend waiting. First, I waited years to get this diagnosis, all the while worrying that something more serious than IBS was going on (and I was right! whoo hoo!). When I was nauseous all of the time, I would wait for it to pass so I could go to class or go out with friends. Sometimes it would, and sometimes it wouldn't. I wait to have bowel movements, I wait to pass gas. I wait to see how different medicines (so many medicines over the years-I have a prescription pill graveyard in my bathroom) react with my body, I wait for bad side effects to wear off, I wait for test results, I wait for doctor's appointments. I wait in waiting rooms, I wait to get my blood drawn, I wait in line at the pharmacy. When my feet cramp up from dehydration, I wiggle them and wait for my toes to straighten out. I wait for my bowel to empty before I go about my day. When it feels like my bowels are twisting themselves in knots, I wait for the pain to pass.

I wait until the last minute to cancel plans, because I hope I will feel better. I wait for my friends to call me, because I don't really want to call them. I always seem to have the same news to share. When I go out to a restaurant, I nervously wait for the waitress to take my order, because I know that I'm going to be "that girl" who asks for everything plain and on the side. I wait for things to get worse, or get better. I wait for the day when I don't have to think so much about food. I wait for the day when I don't need medication, although I'm not sure that day will ever come. I wait for a time when it doesn't matter if I'm near a bathroom.

When I tell people I have Crohn's, I wait for their reaction. Later, I wait for my reaction. I wait for my emotions to boil over or harden into cool, familiar anger.

Someone today asked me if I was bored, being home all day, and I said yes, but I think I'm really sick of waiting all of the fucking time. I used to feel, when I first started feeling sick, that I was "waiting for the other shoe to drop." I was waiting to hear the bad news. I've heard it now, and it doesn't bring relief, this knowing. I feel like there are now a thousand other shoes waiting to drop.

All of this, the tapering, the diet, the supplements (which I am still waiting to take-my specialty....) is a ploy to buy me some time to make my next treatment decision. I know that. I decided that I would let my symptoms dictate the next course of action, thereby taking the decision away from me. And now, everyday, I have to ask myself, was this day bad enough? Is it time?

I'm still waiting for an answer.