Friday, September 28, 2012

Post #53: Truth in advertising

My colon is working again-time to buy flowers! It's a RULE.
 
So tonight, as usual, I was delaying taking my evening meds. I got a snack (can't take them on an empty stomach), did some laundry, and painted my nails a dark forest green. I mostly bought the polish because it had one of the most hilarious names I've ever seen-and you have to say this in a loud, angry German accent:

NEIN! NEIN! NIEN! OK, FINE!

Ahahaha. I don't know why that makes me laugh, but it's all I can do not to blurt it out at inappropriate times.

Me: I'd like a Sprite.
Waitress: Is Sierra Mist ok?
Me: NEIN! NEIN! NIEN! OK, FINE!

I would have to tip her really well.

I was admiring my nails as I shook out two pills from the bottle, and  for a second I just looked at them sitting in my palm, pale yellow against my skin, juxtaposed against the velvety green on my fingers, and I thought, this looks like a drug ad! It's so perfectly composed. Staged. Innocuous.

I should say that I freaking hate pharmaceutical commercials on TV. My hatred for all drug ads connected to raising old man peen are well documented, but what really gets me are the ones targeted to women. They usually start out with sad face lady-wah, I'm sick, I'm sad and alone in my house. Then they break out the 3 F's-food, flowers, and friends. Seriously, check it out next time.

As the voice over guy lists all of the horrible potential side effects, the lady-now happy and smiling-shops for flowers (why is it always flowers? Is that just what healthy people with vaginas do?), has lunch with the girls, maybe does some light painting. You know, lady stuff. Here's how it goes:

Voice over guy: potentially serious side effects include loss of sphincter control, intermittent dry heaving, and werewolf style hair growth. Other serious side effects include runny nose, fatty spleen, and increased bleeding from the ears. Though rare, there have been reports of finger loss and nostril enlargement. If you feel an increased appetite for cruciferous vegetables or notice a change in sexual appetite, contact your doctor immediately. Your doctor will discuss the risks and benefits of using this drug.

Happy drug taking lady: silently laughing in the background at a sidewalk cafe with her friends. Subtext: Oh Carol, you slay me! I'm so happy I took this drug and can hang out with the girls. I'm not bothered by the finger loss at all! Who wants another appletini?!

Ugh ugh ugh.

Here's how it should go:

Voice over guy: People, this drug is pretty toxic. I'm not going to lie, the first few weeks are not going to be cute. Do not take this medicine if you will not be near a bathroom at all times. Do not take this medicine if you are squeamish, sleep deprived, or malnourished, because SHIT IS GOING TO GO DOWN. People have reported all kinds of crazy side effects, but if I were you, I would be most worried about the finger loss and the sphincter control. Seriously people, we're talking about LOSING DIGITS and POOP. Are you really prepared for that? Your lady friends are probably not going to want to hang out with you and go flower shopping, I'm just saying. Talk to your doctor. Make sure you know what you're getting yourself into. Seriously.

Drug taking lady, probably not happy: silently clutching her stomach with one hand while trying to contain her bile with the other. Looking in the direction of the rest room. Dark circles under eyes. Trying to smile. Realistic subtext: Oh Carol, blargahhhhh (vomiting into her purse). Sorry about that! You're a funny gal! This is so fun!!! *plop* Oops! There goes my pinkie into your appletini, let me order you another. You know what? Hanging out with you girls has been fun, but I think I'm going to go home and watch Netflix. Don't want my spleen getting fatty again! I'll call you crazy kids in a month or two.

Obviously, I'm over dramatizing, but I would much prefer the truthful commercial. Granted, no one would ever take drugs, but then I wouldn't feel like such a whiner when I get concerned about taking yet another new one. The ads say: stop worrying! This will make you better! Everyone else is getting better, what's wrong with you?! DON'T YOU WANT TO GO FLOWER SHOPPING?! While my body is saying: I don't feel right. I feel like I have a fever, and my stomach hurts, and I'm dizzy. I just want to lay in bed until this stupid drug kicks in and I can carry on with my life, let alone go shopping for tulips and engage in some light painting.

I would feel better, and less alone, if the people in these ads were sick, or scared, or conflicted. If they looked and acted a little more like they had actual medical problems. If they treated the drugs like drugs, instead of glorified miracle Advil.

Instead, they are shiny and happy and carefree, and I worry that a lot of people will buy into the dream, and feel like a failure when they don't live up to the promise in the ad. I know that's what happens to me.

Monday, September 24, 2012

Post #52: Feeling Hot! Hot! Hot!

Small furry dog is not impressed with your socks OR YOUR EXCUSES.

Like the single serving size canine above, I am GIVING THE SIDE EYE to many things today: people who call during my napping hours (usually sometime between 1-4...assholes). An unpredictable bowel. My pill count creeping into the double digits. Also: NIGHT SWEATS.

There's a fun new symptom/side effect! I don't know which it is, but this morning I woke up freezing cold. Here's how my sleep brain worked:

Cold.
So cold.
Is the window open?
I think I'm damp.
Ewww, why would I be damp?
Whatever, I'll just get under a few blankets and warm right upzzzzzzzzzz
WHY AM I STILL COLD?  (cop a feel)
Hmm. I am damp.
(eyes still closed) So is the bed.
I don't think anything about this is good. I will ignore it and try to go back to sleepzzzzzzzzzzzz
FINE I WILL WAKE UP AND DEAL WITH THIS NEW AND UNCOMFORTABLE PROBLEM.

I fumbled around, found my glasses (why this suddenly makes my other senses work, I have no idea) and realized I was wet and cold. Good morning sunshine! I wasn't wringing out the sheets or anything, but I did have to change them/everything I was wearing because my clothing and the sheets were palpably.....damp. I couldn't warm up. I tried to go back to sleep, but it wasn't happening. I have no idea what caused this or if it will happen again, but I can say that it's disconcerting to wake up this way. Yeah uncertainty!

I'm waiting around, taking the old meds and trying to deal with the possibility that I will have to add the scarier meds in the near future. The steroids have started to work, so my culinary horizons have expanded, which is good. I am still tired all the fucking time.

I did engage in a little retail therapy, and I did run some errands, and I did go out to eat, and I socialized-but I had to force myself to do all of those things. I often hear, in one variation or another, the following sentiments:

"Getting out will be good for you!"
"You'll feel better once you're out and about." or, "Once you're there, it will be worth it."
"Going out will take your mind off things."
"You'll be glad you went."

Sometimes these sentiments turn out to be true, but mostly I am just in a different location with a different audience with the same problems, if that makes sense. I'm still tired. I'm still cautious about what I eat. I still feel nauseous and sore: the scenery is just different. This is not to say that I don't appreciate the people who care enough about my well being to drag me out of my lady cave (that would be my living room, not a genitalia reference)-I do. It's just that going out/socializing/showering (don't judge me) sometimes take more effort than they're worth. The end result of going out is the same as staying in: I'll probably feel sick, and take a nap.

I think people think there is a psychological payoff when you "push yourself" to do things when you don't feel well, like you should have a sense of accomplishment when you execute what would normally be easy everyday tasks. And yes, sometimes going to the grocery store feels like a win. But mostly, it just seems like more work to add to the pile, and it takes a lot to get me out of my yoga pants these days and into an outfit from the "real people clothes" section of the closet.

Sometimes you just want to hibernate and wait for things to get better. Sometimes you don't want to talk to people and have to listen to yourself explain all the shit that is wrong with your body. Sometimes you would rather just be sick at home than on the road. Sometimes, it's good to connect to pieces of your old life-and sometimes it just makes you sad.

I'm feeling a little flushed-I'm going to remake my bed, and cuddle up next to an ice pack.

Wednesday, September 19, 2012

Post #51: I'll take the punch to the gonads

Not even sexy carrot sex can cheer me up today
Hey there! This post is going to be depressing, better kick the kids out of the room.

So you know when you go to the doctor, and he tells you you're failing treatment, and your window for maximum treatment efficacy is closing, and he's worried that you're doing real damage to you digestive business, and he wants to test you for TB and get you started on an even scarier medication? No? Well then we don't have a lot in common today.

It's a lot to take in. I kind of expected a "Buck up sister friend! These symptoms will pass! Go patient go!" pep talk, but I got REALNESS instead. At one point during the waterworks show (every.fucking.time) I whispered, "I really hate having to make these decisions" and the doctor was basically like (in the nicest way possible!), well, you've actually been avoiding making these decisions, and you have to make them now. Now, would you prefer injections or infusions?

That's a tough one nice doctor. Why don't you toss around some statistics and talk about drug trials and safety while I decompress in the corner? Thanks.

It was like my brain shut off. I don't really remember the details, but a plan was made and (more) blood was drawn. Oh, and the steroids and the first scary medicine? I have to keep taking those too.

I've always been kind of weird about medication. I worry about side effects, and that the treatment will be worse than the problem itself. I'm not a particularly healthy person, but I don't like the idea of all of these chemicals and fillers and dyes flowing through my system. It doesn't necessarily make sense; I don't exist on a regimen of hot yoga and transcendental meditation and kale enemas, but I sometimes feel like I'm poisoning my body when I take these drugs. As I was driving home today, and trying not to cry for the 5th time, I suddenly had the thought that at this point my body is basically a Superfund site. I can't fix what's broken, and I keep polluting the well.

I had a lot of time to think in the car; I was stuck in traffic behind a big gold SUV with the license plate "URSOFLY." As I gear up for yet another new medication, while adding back the old medication that makes me feel like crap and continuing the steroids, I was wondering how I keep going forward. How do you orient yourself to this process of continually facing new and frightening realities? How do you keep ingesting (and apparently, soon, injecting) new medicines and making new plans and while postponing the old ones?

I think that at the end of the day, it's never occurred to me that I won't find my way back to good things. I keep going because there is no alternative, but also because I want better for myself. The potential side effects and the potential benefits grow thick together, like weeds, and it's hard to sort the one from the other.

I feel like I've made the decisions, but I'd hard to find peace when all of the choices are objectionable (would you like a black eye or a broken finger or punch to the gonads?). It's hard to pump yourself up yet again for a medicine that might make you feel worse than you do now.

And so I'll do what I always do: cry about it, engage in some retail therapy, read scary things online, lose sleep, and ultimately try something new. Try, and try again. Again and again and again.

Monday, September 17, 2012

Post #50: I'm always rock

Yeah this is pretty much how all of my conversations start

This weekend I went to a bbq, and ate boiled potatoes while everyone else ate juicy ribs shellacked in a spicy sauce, arranging the spent bones on their plates like desert rainbows. There was a bright, fresh salad with nasturtium blossoms, and plum cobbler for dessert. I sat in the smoky light of a citronella candle in a tin pot, drinking seltzer and clinking my glass with everyone as the wine caused the other guests to make increasingly off color toasts. By the end of the meal, everyone was kind of leaning against each other in the slight chill of darkness, resting foreheads on shoulders in the kind of easy camaraderie that comes from longtime friendship. It was pretty perfect, except for the nausea and the way the potatoes inexplicably coalesced into a painful knot in my stomach. The Crohn's holiday is over.
 
This is how Crohn's is, sometimes-the tear at the edge of an otherwise lovely photograph, the DVD that skips during the most important scene, the beautifully frosted cake where you forgot to add the baking soda, or added too much. Just a touch of wrong in an otherwise pretty scene.
 
At the end of the night, when we were all standing in the dark street, gossiping and laughing and delaying departure as much as possible, one of my friends gathered me into a bear hug, and invited me to come visit him and his wife at their vacation house, about an hour away from my own. "Just come." he whispered, while the others lingered and laughed at a picture on someones cell phone. "Just get in the car and do it. We'd love to see you." I leaned in, and looked up, and whispered back, "I'll come if I can. You know I want to see you guys too." "I know. I know."
 
He let go.
 
I felt old and sad then, the evening's magic departing. What I said wasn't exactly true; what he said wasn't exactly true, either. I could go, even though my AAC is unpredictable; the vacation house is on a country highway, so it's not like there is a shortage of 7-11s on the way. He said he knew that my intentions were good, but in the back of his mind, perhaps the excuses were growing thin. We tell lies to our friends sometimes, to preserve the relationship. What I really should have said was that I don't feel like going anywhere, that being sick all the time makes me bitchy and anxious and party-averse. What I think he wanted to say was that I should suck it up a little and demonstrate that the friendship was important by showing my face.
 
This is what I like to think of as friendship rock-paper-scissors. Friendship requires a delicate balance of give and take. You need support, and you want to give it. You pick up the check one week, your friend picks it up the next. You are required to listen to a 3 hr. discourse about your friend's ex, who she saw at Whole Foods; in turn, she will read and re-read the bitchy email your boss sent you (which you immediately forwarded to her) and pick apart the secret meanings behind the words. In the game of rock-paper-scissors, sometimes one person wins, but mostly you are both rock.
 
Sometimes, however, there is a disconnect in the relationship. There are situations that automatically win. A head cold beats movie night. A broken car beats happy hour. Sleeping in (after a 70 hour work week) always beats brunch. And lately, it seems like Crohn's beats everything. Weddings, birthday parties, trips to the vacation house-you can play rock-paper-scissors as much as you want, but it's just for show. You're the asshole who yells, "grenade!" and ruins the whole tradition (what, they didn't do that in your grade school?). You're taking yourself out of the equation, because you-your illness-trumps it all.
 
I want to be rock, I really do. I want to "take one for the team" sometimes, and I want to play fair. But it's hard to play fair when you are so preoccupied with the day to day realities of this disease. A good friend makes plans, and honors commitments, and goes to the fucking vacation house, and I am just not a good friend right now. I can't be.

Hopefully, someday, I can see the vacation house for what it is-an excuse to sit in the sun with my feet in the water, hanging out with people I enjoy. For now, it seems like an anxiety producing, stressful situation with too many unpredictable outcomes and the potential for pain, embarrassment, and discomfort. I hope my friends understand that it's really not about them. I hope they can be patient. And when I'm feeling better, I promise to be rock even when I know they'll be playing paper.

Friday, September 14, 2012

Post #49.9: I brake for fake crab

 
You win this round supermarket sushi....
Yesterday, I was paying bills and shopping and going to appointments and going to the bank and getting gas (for my car, I feel like I have to specify on this blog) and being social and returning phone calls and writing emails and giving advice and NOT napping and making plans and doing laundry and laughing and buying presents and EATING ALL OF THE THINGS.

I had a great three days on steroids, and I got a little cocky.

A lot of carbonated beverages, supermarket sushi, chocolate sorbet, deli salad, and almonds later, I paid for my hubris. You know that stupid saying "a moment on the lips, a lifetime on the hips?" I believe the Crohn's version of that ditty is "a moment on the lips, a lot of bathroom trips!" Or, more accurately, a lot of painful uncomfortable bathroom trips wondering WHY DID I NEED TO PUNISH MYSELF WITH  BY EATING _____________(insert offending food of choice here)!?

As I shuttled between bathrooms (variety is the spice of life) this morning, trying to take deep soothing breaths as my bowels twisted and snapped like virile rubber bands, I pondered this very question. On the haunted toilet* I lamented the fish stew I ate out at a restaurant. In the vindictive spider powder room** I bemoaned the waffles that seemed like such a good idea the morning before.

I was looking at my steroids, and the ensuing regularity, like a vacation from Crohn's. I deserved a break! And on vacation, who sticks to white bread and Gatorade?

I felt normal. I had energy (granted, a little too much energy, but who would compain about that!? I was getting shit done). I had the time and mental clarity to do the things I enjoy, and those things include eating. I remember thinking to myself, this is how it should be-this is what I am working towards. This is what I hope is possible again. I thought that this little interlude would give me the inspiration, the motivation, to stick with the new medication through all of the terrible side effects, in the hopes of getting to this place without steroids.

And this morning, it all came crashing down, in a most painful, explosive fashion, and I was left exhausted. Did I just ruin steroids for myself? I am such a moron. To explain how I got to this place, and how I may or may not have broken the steroid's magical ability to tame my AAC, let me try to explain how it feels when the steroids work.

Imagine that you've been sick for a month or two. You have no energy. You spend your days sleeping, eating things that are beige, and watching the new crop of daytime talk shows that are jostling to replace Oprah (I'm looking at you Marie, Ricki, and Katie, not to mention Anderson, Jeff Probst (??), and Nate. Side note: Katie Couric is a serial blinker. It's seriously exhausting and distracting to watch those eyelids fly. Someone get that chick some drops!). There is pain, nausea, and fatigue. There is considerable time spent in the bathroom. Early in the day, you are spent. Sometimes you're dizzy and your muscles quake, and you feel breathless. There is dehydration and heartburn and some super fun medication side effects that make you feel bloated and sweaty and wrong.

That's about right. Replace beer cans with pill bottles and add a sports bra.

THEN. Oh, then. You take a handful of the good stuff:

A spoonful of steroids make the Crohn's calm right down, oh, the Crohn's calm right down, the Crohn's calm right down....

And suddenly, it's like someone shoved a spark plug up your ass and you turn into this:

I can run on the beach! My quads have DEFINITION. I CAN EAT ALL THE THINGS!

If you've been miserable for long enough, your brain can be excused for wanting to jump on the GOOD HEALTH NOW, COME AND ENJOY IT! band wagon, even if a small part of you knows the medicine might be making false promises.

If you think that I'm overstating the change-from Homer to bouncy chick in a matter of days-that's really what it's like. It's overwhelmingly deceptive. Every part of you wants to believe that the preceding days (ok, months) were a bad dream, and you've finally been restored and rebooted. Every part of you wants to use these days, enjoy them, because steroids are a limited time only hall pass from the crap that is waiting for you back in real life.

So I guess the point of this post, if there is one, is that today was a bad day, and I both blame myself for making it that way and understand why I did.


*it makes haunted noises when you flush
**a medium sized spider has been doing gross spider laps around the edges of the ceiling but comes to stand over me when I need to do my business, thus making me fearful that he will drop directly on my head and causing awkward pants-half-mast crab walks to the haunted toilet (not to be confused with the passive aggressive spider who used to live in the mailbox)

Tuesday, September 11, 2012

Post #49.8: And now for something completely different....

I am thankful for indoor plumbing and that I don't have to poop in this haunted outhouse.
So, it seems kind of douche-y to write about my colon today.

I was watching the news, and there was one quick soundbite about 9/11-a brief montage of memorials at all of the different sites. The President held his wife's hand, and they bowed their heads in a moment of silence. Family members read the names of those killed in NYC. I was struck by the brevity of the coverage, and also by the fact that for the first time, politicians were not allowed to attend the memorial at the site of the attacks. It was, as the newscaster said over and over, becoming a day of private remembrance.

Later, I read a blog where a teacher discussed her feelings when her school held a moment of silence this morning-and she realized that none of her students were born when the towers fell. They had no real emotional connection to the event at all.

Every time there would be a news story about JFK, my mom would always say, "I remember exactly where I was that day." I used to make fun of her-you remember exactly where you were? What were you wearing? What were you doing? And now I know exactly how she felt. I don't feel disconnected from what happened. The pictures of that day, the towers falling, the dusty workers running away from the devastation, supporting each other, the paramedics and policeman and firefighters running towards it. The lines of people waiting to donate blood. The twisted metal beams set in irregular geometry at the site, like disjointed fingers pointing towards the sky. The horror-plain horror-of the newscaster's voice when the second plane hit. I do remember exactly where I was that day. I remember what I was doing, and who I was with. I remember how I felt, far from home and away from family.

It's a moment in time that still squeezes my heart.

So today, instead of talking about my AAC, I am going to make a brief list of things I am thankful for. A few of the Crohn's blogs I read do variations of the "Thankful Thursday" thing, but as useful an exercise as that would probably be for me, I can't bring myself to do it. But today, I think it's important that I try.

In no particular order, I am thankful for:
  • a solid group of people who support me, no matter what shape I'm in
  • patient friends
  • health insurance
  • the ability to pay for that health insurance
  • things that divert and amuse me (TV, the six million magazines I subscribe to, hilarious neighborhood animals, postcards and letters)
  • blogs, which make me feel less disconnected from the world
  • this week of respite, courtesy of my steroids
  • access to good doctors and nurses
  • AMP's
  • my living arrangements
  • having the luxury (and there's no other word) to focus on my health right now
That is a small start to what should be a long list. It's hard to remember when I feel like crap that I am simultaneously very fortunate to have the help, support, and resources I need. Maybe there's something to that "Thankful Thursday" crap after all.

Saturday, September 8, 2012

Post #49.7: Old dog, old tricks

I do not have ambivalent feelings about this drug.

I know that title kind of makes me sounds like an elderly prostitute, but I'm not talking dirty here-I'm talking STEROIDS.

There was a plan in place-a plan to wean me off of steroids and replace them with a medicine I could take long term. My AAC, however, had other ideas, and a definite preference for the little pink pills (not lady Viagra-that's what color my steroids are). I weaned, I flared, I bought the t-shirt, and now I'm back right where I started.

The current theory (and really, medical opinions are three steps up from a Crohn's magic 8 ball, if such a thing existed) is that the new med was "exacerbating" (great word!) my flare, and I need to go back into remission before I try it again.

Let me explain right now that it's hard to keep a single train of thought going here, because my brain is like a coked up hamster on a greased wheel (I just made that up! Spin wheel, spin!).I've been on the steroids for 4 days-96 hours-and I've felt better than I've felt in months. I didn't take a nap today. I am HUNGRY. My colon explosions are reduced. I want to go places and do things. All day I've been remembering things I've read and watched, seen or heard, throwing them into conversation like I might forget them all tomorrow. I'm making lists in my head, lists that don't seem daunting, but doable. I might go out to eat. I don't feel spacey or run down or exhausted. I can feel my mind start to make connections, everything snapping back into place and fitting together like Lego's.

It feels good.

You know what else feels good? Being off the new medication. My hair stopped falling out. My weird dreams are gone. My stomach doesn't hurt. I'm not nauseous all the time.

And yet this is a bittersweet interlude, because I know it is temporary. It's a cold realization, to know that 3 little pink pills can patch you up, but only for a short amount of time. I feel like I'm on vacation from my disease.

I'm supposed to call my doctor as soon as I feel like my symptoms are under control again, so I can start up the new med (again). But frankly? This is my brief, fleeting opportunity for a little normalcy, and I might take some time to make that call.

I have some business to take care of, and some living to do, before I head back to the grind.

Wednesday, September 5, 2012

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.

Monday, September 3, 2012

Post # 49.5: Adventures in Urgent Care

SUNSHINE AND PUPPIES, SUNSHINE AND PUPPIES!!!!

Obviously, today wasn't all sunshine and puppies.
 
While I've been dicking around with taking this new medication, and now waiting for it to kick in, I guess one could say I've been having a month long "flare". I don't know if that's the correct term, but when one has (many!) colon explosions everyday for a month, I guess it applies. I seem to recall my doctor saying there is only active and inactive disease, so whether this is a flare or "active disease" (which sounds so much less alarming), my digestive business is not in a good place.
 
Naturally, having this much activity in my AAC is not beneficial to the rest of my body, nor is a varied diet of white bread and Gatorade. I've felt rundown, exhausted, and wonky all month. I just feel sick. Today, I felt especially not right and was a little weepy, which in general means I'm dehydrated. Coupled with some other symptoms, I decided to go to Urgent Care to get some fluids (ha). I've done this before (3 times!) and I always feel better afterwards, so I figured it was a sound plan, and frankly after a month of feeling like someone sucked all of the energy out of my body with a giant straw I wanted some relief.
 
Urgent Care may sound all dramatic, but it's actually the easiest and most cost effective way I've found to deal with this particular problem. The wait is shorter, you get immediate lab results, and they hook you up to a bag of saline goodness in no time. I could go into a long digression about how specialists aren't equipped to deal with the day/day medical ramifications of this disease, but that's another story. To Urgent Care then, where there is less red tape and more action! Huzzah!
 
After a short wait in the waiting room (with possible Lyme disease guy, lady with infected toe that was thankfully in a shoe, and broken finger kid), I was back into a room. Let me say that I had been to this particular place three times, with the same symptoms, and always had the same results: delicious, delicious hydration. This doctor (PA? whatever) was more "thorough" and wanted to see my labs before he gave me the good stuff. He poked me, felt my tender AAC (ouch), and listened to it with a stethoscope (weird). Blood was taken, and I donated some florescent yellow pee to the cause.
 
Side note: I love how they call peeing in a cup "clean catch".....makes me think of grizzlies catching salmon in their mouths in a raging stream on the cover of National Geographic. Anyway.
 
 The good news? My labs were all fine (except for the ones they had to send out). Secretly, I was worried that this new med (and the month of flaring) had jacked up my system, so I was relieved. My pee was fine. I was not sufficiently dehydrated to warrant hydration (THWARTED).

So I'm back to where I started-stomach pain, super AAC, and feeling like roadkill. I still think some fluids would have helped me feel better, although he did send me home with some sort of prescription for the cramping/pain. boo.

Saturday, September 1, 2012

Post # 49.4: Sad panda

Silly pandas, you forgot explosive diarrhea! I still want to hug you though.

This might have to be a quick post, because I can feel my stomach gearing up for round 3 (4? who knows). I went WAY out on a limb and had white rice and chicken for dinner tonight instead of my usual white bread, and now it seems like I'll be paying the price for my culinary audacity.

Random quandary, is my pee neon yellow because of the new med, or because I'm drinking so much freaking Gatorade? Also, DIGESTIVE SYSTEM, what do you tolerate super creepy yellow #5 dye, but not ORGANIC CHICKEN AND RICE!? gah.

So, as the pandas are pondering above, I am pretty much down to those two activities: eating (bread and Gatorade) and sleeping. I sleep a sloth like amount. It's gotten to the point where I rotate sleeping spots, just to shake things up and prevent person-size indentations in all of the beds/sofas in the house. Normally, due to my AAC, I can get fatigued, but I try to limit my napping so I don't stay up at night, playing blackjack and re-reading old copies of O the Oprah magazine. Now, however, I don't even bother, because I could take three naps during the day and still fit in a robust 8 hours at night. What's the point? I'm like a geriatric cat that no one wants to poke because he's old, and crotchety, and doesn't want to play with you anyway, so why not let him sleep and have happy mouse dreams or whatever.

Sigh.

When your doctor consults you about new treatment options, he might bring up the term "risk/benefit analysis." This basically means that in making the decision to try a new medication, do the benefits outweigh the potential side effects? I haven't been on this medicine for very long, but I'm kind of  miserable. I sleep all the time, my stomach hurts, I'm nauseous and spacey and dizzy. It might take 2-3 MONTHS to kick in, so in the meantime I'm still dealing with a pissed off AAC. Why am I doing this again? It's hard to stick with the program when the program is kicking your ass and not solving your (colon related) problems.

ps: I follow the blog Ali on the Run (it's on my feed), and I think she's a badass in general (running! with colon explosions!) and especially with the Crohn's stuff. She's in the hospital getting a workup, and even though I totally don't know her, I am sending super happy "I hope they figure out how to deal with your AAC" thoughts her way.