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 # 49.3: Hair today, gone tomorrow...

Web MD suggests this activity to decrease my Crohn's related stress. Running alone in the woods does not seem safe or calming because of bears and people who might jump out at me from behind a tree.

Here are three things that I am today:

1.) tired
2.) worried
3.) full of delicious, delicious bagels

Only one thing on that list is positive. I forced myself to go on an outing today, because I have not left the house in wayyyyy too long. I haven't been out in the sunlight. I may be growing moss and becoming (more) antisocial. The usual.

Going out takes preparation and, for lack of a better word, propulsion. To prepare, you must make sure you're hydrated from the latest colon explosion, and attempt to gauge if another is imminent. Imodium may need to be deployed, Gatorade consumed. Personal hygiene falls into this category, although at this point if I'm showered and wearing deodorant I'm pretty much in full on glamour mode.

Finally, propulsion: the single mindedness it takes to ignore your symptoms and physically propel yourself out the door. You can't let anything effect your momentum, of you may never leave: there are so many reasons to stay home and get back into bed. This morning, as I was combing through my hair with my fingers, I looked down to find my palms covered in hair: a delightful potential side effect of the new medication. Thinking I was overreacting, I shook my hands over the sink, and there was proof against the white porcelain: a lot of extra strands were visible. I could feel my momentum shrinking, as I combed through my hair for more and more strands (a few more came loose)-I wanted to count them, or document them, or call someone, or do SOMETHING. But I made myself wash them down the drain, and finished getting ready. You can't get sidetracked, even by something new and frightening, if you want to get out the door. There will always be something.

At the door: keys, Gatorade, crackers, cell phone. Gut check: Cramps? no. Gas? no. Bladder? empty. Dizzy? slightly. Safe to drive? yes.

Get in the car and go.

I did, and I came back. I used up so much energy on that brief task. It felt good to get out, to drive on the freeway and listen to the radio, to see people and buy bagels and act normal for an hour or two, but I came home and headed straight for the couch, and now I can barely keep my eyes open. I took a long nap, and now I'm going to bed early. I just feel like I have no reserves, and when that energy is gone for the day, it's gone.

That covers the bagels and the fatigue-now for the freak out. Some hair fell out today-I don't know if that is a new trend or just a random hair exodus. I up my dosage tomorrow. If I'm this tired now, how will I manage when I'm taking 4x the dose? Will I be more spaced out? More distracted? More nauseous?

I will use that same propulsion to force myself down the stairs tomorrow morning. I will go into the kitchen and pour myself some juice, and I will take those pills and see what happens. Thinking and worrying inhibit motion. There will be plenty of time to obsess once the pills are down the hatch.

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 #38: This post is brought to you by the letter "I" (imodium!)

Doesn't this look wholesome? Also, the only thing I can eat in this photograph is the tablecloth.

I was really emotional when I wrote the last post-I think it's because I'm sad that I only have four days of steroids left (sob). Yesterday, I was having cramps and a lot of diarrhea, and I had a haircut appointment. I have short hair, which actually means I need haircuts more often, or my hair gets shapeless and frizzy. A few weeks ago I encountered a really pissed off baby robin (it was in the middle of the street, so of course I had to get involved. I poked at it with a flip flop I found in my car, which it attacked, but eventually it kind of hopped/waddled into a ditch). The bird was at an in between feathers stage-out of his (her?) big boy bird feathers, these little downy feather strands were poking up at odd angles, which is kind of what my hair looks like between cuts. It's less defined and looks messy. There are women who get their nails done each week, who tint their eyelashes and wax their lady parts and shoot toxins into their laugh lines. To each her own-I like to get my hair cut every month, and if I don't, I get kind of twitchy and do dumb shit like try to cut it myself, or wear unfortunate hair clips.


I really wanted to go to that appointment.


So I took an Imodium, waited at my house as long as I could, grabbed a plastic garbage bag in case of emergency, and booked it to the salon. An unfortunate start to the morning, but at least I didn't have an accident (of either the vehicular or colonic variety). My AAC is so freaking unpredictable these days; I used to get a rest day between explosions, but it's been pretty much every day this week. Imodium is also kind of tricky-too much can slow things down to the point of painful constipation, and too little might mean you poop in the car. Imodium pills are also really small, so while you an cut it in half, anything smaller means you end up with minty green colored pill crumbs. Basically, I think I took too much yesterday, as I was in a hurry to shut off the faucet and get out the door, but I have a feeling I'll pay for it eventually.


In the next two days, I have more appointments, and while I specifically scheduled them for the early afternoon, there still might be a few stressful rounds of "can I or can't I leave the toilet?!" that I have to play. There are times-say, when you're in the dentist's chair, getting a cavity filled-that you just want your AAC to cooperate, and where you don't want to grab a garbage bag and a change of clothes and go merrily about your business.


The weirdest part about yesterday, as I grabbed my keys and headed out the door, was that I made the choice to venture out into the world in the midst of an AAC freak out. I decided that the thing I wanted (a haircut) was more important than the reality of the situation, which was complete unpredictability. It's not often that the scales tip that way.


Today I got a call from a work friend, and it reminded me that in September, I have classes to teach. I have what you could consider daily appointments with my students. It's one thing to roll the dice with a trip to a salon; another, to do the same and have to stand before a group of teenagers.


I know I'm not ready to go back to work yet. Hopefully, whatever intervention I choose next will give me more options in September than grabbing a hefty (ok, Costco brand) bag and hoping for the best.