Wednesday, October 31, 2012

Post #60: An AAC on Halloween

Luckily, I have an AAC. Thanks Crohn's!
Boo hiss.

My colon is angry today. I've had to cancel plans with two different people. I thought I could "tough it out" or "power through" or any one of the many different cliches for sucking it up and going through life despite having a wayward digestive tract.

I thought I could order a sprite at the restaurant and at least get some face time with a friend who I haven't seen for a while, ignoring the delicious smells and sights of real food all around me. I wrapped up her birthday present and bought her a funny card, in preparation.  Alas, my AAC had other plans, and I need to be near a bathroom.

I can feel my guts getting ready for round three, so I'll keep it short: THIS SUCKS. Lately, I've been doing my best to pretend that my Crohn's is not a problem. I decided to delay the scary new meds. I've been working out. I've been thinking about making plans, commitments.

And then a day like today: a day where I can't leave the bathroom, and then don't leave the couch. A day when it feels like I have a fever, even though I don't. A day when I want so badly to do things that make me feel normal: order food at a restaurant, spend some quality time on the treadmill-but just can't. A day when the realities of this disease wash over me, leaving me sad and spent.

It's been raining here, a strong, steady rain, like the kind they use on relaxation tapes. Sometimes I imagine myself standing outside and letting the rain wash the disease away from my body, like an impurity that can be cleansed and purged. Then my stomach gurgles and heaves, and I know it's not, and will never be, that simple.

Before this post becomes anymore depressing, I think it's time for adorable pictures of pets in Halloween costumes.

I'll get you my pretty! And your little dog too.....oh wait.

This is kind of genius.
Harry Potter cat is displeased. He will be shedding his costume in 5.....4......3......2....

Pugtato!
I just found my next Halloween costume!
Gah....so cute! It's probably a good idea to dress them up while they're too young to maul you.

Ok, I feel better. And, silver lining, thanks to my AAC this will probably be the first Halloween when I don't eat half of the candy from the bowl.....

Happy Halloween!

Friday, October 26, 2012

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.

Wednesday, October 24, 2012

Post #58: Poke poke

Aim for the sweet spot!
 
After scrolling through pictures of syringes and starting to hyperventilate a little, I give you headless injection girl (prepubescent boy?).

Ok, so I guess you know where this post is heading! After months of stalling, eating spelt, curling into the fetal position, steroids, immunosuppresents, and side effects, I have arrived at this place (or I will, come Friday). I will jab a pre-filled syringe into one of the targets illustrated above (or, as the nurse told me, a place where you have a lot of fat-so many choices!). I have resisted this place for so long that having several thousand dollars worth of the medicine chilling in the fridge and staring at me every time I reach for the soy butter is surreal. It's here, it's happening, and come Friday, it's going in my belly (fat).

I've known that this was the next course of action for about a month now, but I haven't fully reconciled myself with the reality of the situation. I've become very adept at blocking any and all thoughts of what I might experience. It's like there's is a very effective team of tiny footballer players in my brain that tackle any stray thoughts of what could happen, or how it will feel, or if I'll really be able to shoot up, or if I'll pass out in front of the doctor/nurse. But I've been giving those little thought-blockers a workout. They've been so busy, and I haven't been sharing my Gatorade/steroids, so worries are starting to slip through the cracks (see above). With increasing frequency, these little stray thoughts will pop up and I'll experience a cold slice of fear while, say, loading the dishwasher. It's disconcerting, but in general the strategy has helped me power through the last few weeks.

I don't want to say I'm in a place of acceptance about all of this, because part of me wants to bust out those very expensive syringes and run them over repeatedly with my car. It's hard to explain, but you know when you're in a doctor's office and about to have a procedure, and you kind of still your body and brace yourself for impact? There's a moment, when the doctor is wielding something pointy/sharp, that is beyond fear. It's a recognition that you are too far in to back out, and that it-whatever you have been dreading or fearing or waiting for-is going to happen. For someone who is constantly attempting to control her environment, there is a calmness about that space. It's going to happen.  

That's where I am. Not happy, still afraid, but trying to still myself for all the possibilities that might unfold.

With a few exceptions, I don't really know who reads this blog, whether you have Crohn's or just really enjoy hearing about the diversity of my bowel movements. If you do have Crohn's, and you've been where I'm about to go, please share your advice/experiences. If you don't have Crohn's, you can say nice things about my hair (I know you haven't seen it, but just assume it's pretty). Both contributions are appreciated.

Tuesday, October 23, 2012

Post #57: HULK SMASH

This friendly druggist looks hiiiiiiiiiiiiiiiiigh as a kite.
I haven't had a good old fashioned rant in a while, have I? No? Well then, let's get to it!

I don't hate my pharmacy. The people who work there, in general, have been helpful with problems both mundane (calling my doctor/insurance company a million times to process a new prescription) and sensitive (I have to put the Q-tip where?!). When dealing with any medical personnel, and I include pharmacists/pharmacy techs in this group, I try to observe a basic rule of etiquette:

DON'T BE AN ASSHOLE.

This goes for any human interaction, really, but is especially important in situations where people are performing services that are intended to help you. If you're at the pharmacy, at the counter, don't suddenly forget the hemorrhoid cream and run around looking for it, leaving 5 people waiting behind you. Don't talk loudly on your cell phone while you rifle through your massive purse for your credit card and hold up the line. Don't yell at the pharmacy tech if your doctor is the one who fucked up your prescription. Be patient, say thank you, TURN OFF YOUR CELL PHONE, and don't be an asshole.

All of this is to say: I try to be nice.

Cut to last week, when I went to pick up a prescription and was told the company had switched manufacturers for this particular generic. The thought filled me with dread. Yes, chemically, the drugs will be the same. But a pill is not made up of chemicals alone-there are also fillers. Seriously, check your bottle of Advil. It doesn't just say "Advil" on the list of ingredients; the pill itself, the coating, the color-these are all additives. So, technically, two generic pills might have the same chemical components, but different fillers.

Example time! Let's say Giant Drug Manufacturer A uses ground up mice penises as a filler, and Giant Drug Manufacturer B uses freeze dried bat turds. Your body may tolerate mice wangs better than guano. The chemical component of the drugs is the same, but the fillers might be different. I don't care how many pharmacists tell me this, but that means it is NOT THE SAME PILL. Unless both pills contain the exact same chemical ingredients AND the same fillers, they are.not.the.same. They are not pill twins-they are more like pill step brothers. End rant #1.

When I got the new drugs from the new manufacturer, I tried to keep an open mind. Sure, my body had adjusted to mice, but who's to say it couldn't embrace bats? I tried it out for about a week. My sleep got jacked up (who wants to wake up every 2-3 hours? Not this girl) and my hair started falling out (again). I was jittery and irritable and pissed off. Do you know why a company switches manufacturers? Because they get a cheaper deal with the new manufacturer. This makes hulk ANGRY.

So I called the pharmacy to see if they had some of the drug from the old manufacturer laying around. "No problem, we can just order it straight from them. From now on, just remind us to special order it from the old manufacturer." Let's break this down pharmacy (Hammer time!): to try to save money, you switched my drugs around and made me sick. Now, you will be forced to special order me the old medication, therefore costing you more money. HOW DOES THIS MAKE SENSE!?

I called my doctor to get a new prescription, and immediately stopped taking the new generic drug. Hey, guess what happened? Sleep returned, and my hair stopped falling out. Since I need to be on this drug, but didn't want to take the new craptastic generic, I called the pharmacy everyday to see when the old drug was in stock. This lasted a week. Finally, I had the following conversations:
 
ME: (see above-explained it to the tech)
Tech #1: Hmmm. Let me check on that.
Tech #2: Hello? How can I help you?
ME: Explained EVERYTHING all over again.
Tech #2: Hmmm, let me check on that.
Tech #1 again: Ok, I see you have enough of that medicine to last you another few weeks. What can we help you with?
ME: MEDICINE MAKE ME SICK. BLERGGGGGGGG. NEED OLD MEDICINE.
Tech #1: Ok, let me check on that.
 
(This was the moment when I stopped playing solitaire to focus on my rage.)
 
Pharmacist: Hello, how can I help you?
Me (actual words): ARE YOU SERIOUS? I AM GOING TO LOSE MY SHIT.
Pharmacist, after I had explained the whole thing again: Ok, I am going to need to get approval from your insurance company to refill this prescription. I"m not sure if they will approve it, they usually don't when people just prefer one generic over the other.
 
(this was the moment when shit was lost)
 
Me: Prefer?? PREFER?! This is not a question of preference, the new generic makes me SICK. I PREFER not to be sick.
Pharmacist: So the old generic didn't cause these symptoms?
Me: NO.
Pharmacist: Oh, well that's different.
 
(shit is lost into the stratosphere)
 
Um, more things were said, and it was a 15 minute "conversation" with at least 3 different pharmacy personnel. Look, it sucks being sick and needing a million different pills to keep your colon in check. What I don't need is attitude from a pharmacist who thinks I would waste my time making a fuss because my prescription is a different color. But I PREFER pink! It matches my decor! Riiiight. Nothing condescending or invalidating about that!
 
So thanks, pharmacist, for assuming I'm not the ultimate expert on how a medicine makes my body feel, and for doubting my judgement. One of my favorite past times is randomly calling pharmacies with complex medication issues and seeing how long I can keep various staff members on the line, working on my conundrum! Some people collect stamps, but I really feel like the maddening exchange with your staff is ultimately more satisfying.
 
End rant. Enter soy ice cream, spoon, stress eating, and angry muttering.

Sunday, October 14, 2012

Post #56: Where I make out with some broccoli

Hey stud.

Oh, couch. Oh, daytime TV. Oh, low residue foods.

Luckily, the weather here has turned fall-ish, which makes hibernation more palatable. There is something uniquely depressing about crawling under the covers in the afternoon of a gorgeously sunny day.

This month all of the magazines are packed with Thanksgiving recipes, and I don't kid myself that I'll be able to tolerate most of them-I scoff at you cornbread stuffing! I laugh in your face, pecan pie! Last Thanksgiving I stuck to turkey and (plain) mashed potatoes-it's unfortunate that one of the best eating holidays has become an anxiety-riddled exercise in restraint. I love Thanksgiving foods-buttery, salty stuffing, sweet potatoes with a pecan crumble topping, dinner rolls, gravy-and pie, oh, the pie. I am really good at making pies. I know how to make a crust that is buttery and flaky, but still crisp on the bottom. I how to coat the top of a double crust pie with apricot jam to make it look like it came from a fancy bakery, or a magazine photo shoot. I know how to make a chocolate Bourbon pecan pie that is kind of shocking in its excess.

But of all the recipes flaunted in these magazines and floating through my memory, one-a raw brussel sprout salad with red onions, oranges, and toasted nuts, makes me want to rip out the page and chew on the paper (can't though-too much fiber). I crave salads, but I don't crave the inevitable pain and discomfort they will cause. If you had told me a year ago that the food I most desire involves brussel sprouts (and raw brussel sprouts!) I would have laughed in your face, and then eaten another slice of pie.

I think what I really crave is textural difference. Most of the food I eat now is not crisp. It has no bite. Before all this, when I was feeling well, it's not like I always ate particularly healthfully, but I did go through phases where I "ate the rainbow" (and I mean produce, not skittles). I used to be the high fiber queen. I used to eat swiss chard and lentils and roasted butternut squash. I ate big salads and raw vegetables and spinach. I mean, I also ate chocolate and ice cream and feta, but we're focusing on healthy shit now.

I can't eat those things right now. Maybe, in the future, I'll get to a place where I can without fearing pain or a colon explosion. As I chill on the couch, and watch the food commercials, it's not the quarter pounders, french fries, chicken sandwiches, cupcakes or cookies that make me drool-it's the Mexican food, with beans (beans! I remember beans!) and cheese. When I flip through these magazines, I'm not interested in the turkey, particularly, but the veggie sides.

I still haven't been able to find a happy medium between what my head wants and what my stomach can tolerate. As a result, I tend to eat the same things over and over and over, because they are "safe" and easy. I don't think I'm doing a very good job of nourishing my body. My focus has shifted solely to symptom avoidance and away from nutrition.

Before Thanksgiving, this is something I need to work on, because on that day I am eating real food. Maybe if I look at incorporating some more nutritious foods into my diet as a kind of training regimen, it will seem less daunting. Some people train for 5k runs-I would like to train my colon to accept new and different food friends. It would also be nice to not feel the need to muzzle myself in the produce section.

Monday, October 8, 2012

Post #55: I do like Matlock....

Sexy retirees with sexy white hair having sexy cocktails on a sexy beach
A few days ago, I was having a conversation with a friend when she remarked, out of nowhere, "You are living the life of a 65 year old. You're like retired."

At first, I was offended. This lasted approximately 30 seconds until I realized that she was basically correct. She wasn't suggesting that I had taken, as it were, early retirement by choice, merely that I was living the life of a person who is typically several decades older.

And it's true-my day is basically my own. I'm not working right now. I have leisurely lunch dates (where I eat safe foods); I do light walking around the neighborhood with an older neighbor; I'm preoccupied with my bowel movements. When people call me, they ask about my health. When I'm out, people are constantly asking me if it's "too much" because I get tired easily. I worry about insurance and flu shots and whooping cough. I take afternoon naps. It sometimes feels like a chunck of my life has been scooped out and I've been deposited into middle age.

Granted, this detour is not something I planned, but it's disconcerting to attend, say, a baby shower and feel that you have more in common with the knitting grandmas than the pregnant lady who is 6 months your junior. I feel very disconnected from my peers. I feel like I haven't earned this life of "leisure." Granted, I'm dealing with a very AAC, blah blah blah, but I feel like I'm watching everyone else build their lives while I'm stuck in medical limbo.

What I am trying to convey (and failing to do so, I think) is that I don't feel like my time now is productive. I'm not accomplishing anything, or building foundations for the future, or even screwing up and having fun. I'm not doing anything. I'm waiting for things to happen to me. I would love to say that with the next new medicine, and there always seems to be a next new medicine, my health problems will be managed and I'll be able to return to my old life. But as I sit here and watch the world go by, I wonder what that new life will look like. My old life doesn't seem like enough. When your world shrinks, and you imagine your future, you want it to stretch and grow and become bigger than it was.

I'm finally following my doctor's orders. Hopefully, this next new drug will get me to a place of more stability. I guess I'm just not so sure anymore about what I want to do when I get there.

Tuesday, October 2, 2012

Post #54: In good company

Dear diary, today I pooped and ate some pumpkin bread and pooped and felt sick and took a nap and pooped again.
xoxo, AAC
Lately I've been keeping a "symptom diary" again, which makes me feel like an experiment in progress, which I guess I kind of am at this point. There's no accounting of my day-it's strictly a record of symptoms and side effects. This is not a food journal, or a feelings journal-it's a color coded data set. I can scroll through it and notice trends without reading the details. I realized after this latest round of doctor's visits that I needed concrete proof about the goings-on of my AAC so I could answer the myriad questions I am asked with specificity. When you have an, um, active bowel such as mine, the details tend to blur together. Now, however, I can tell you EXACTLY what went on in my colon on, say, September 19th in the afternoon. I was feeling fatigued and bloated, btw.
 
Having the raw data is depressing, but it answers a lot of lingering questions. Yes, I am still having side effects and symptoms. Yes, the nausea from the meds is better.....but No, these current medications aren't really controlling my Crohn's. Yes, I still spend a significant portion of my day feeling sick, tired, and uncomfortable.
 
You can't explain away or minimize your symptoms when you have so carefully and faithfully recorded them each day. They exist, despite any fancy metal acrobatics meant to obscure their existence or deny their impact. Maybe this data is what I need to move along to the next step. I don't always believe my doctors, but I can believe this. It's what happened to me, according to me. Incontrovertible proof.
 
I do have a tendency to minimize things, or deny how much of an effect they are having on my life, and I'll say or think just about anything to avoid making scary or difficult medical decisions, but then-I look at the "diary." I think that's the wrong word, for something so clinical-Bridget Jones keeps a diary. There is no Colin Firth up in this mother (bastards). This is more like covert colon surveillance. Whatever you call it, I can see how little energy I have, and how much time I spend in the bathroom or feeling nauseous or having cramps, and it's something I can't argue with.
 
When the doctor asks me questions, I think I'm answering honestly, but then I go back and take a look at the log (there we go) and realize I'm under reporting my symptoms.  
 
The waiting has been wearing on me lately. I'm waiting for next steps, for side effects to decrease, to taper medication, to take blood tests, for The Talk to come on (there's not a lot going on in AAC land, ok?!). I'm waiting until the last minute to take my meds. I'm waiting to eat in case I have to go somewhere/do something. I'm waiting to take a nap until I have to, because I'm just really tired.
 
Do you know what makes this so much more bearable? Surrogate grandparents leaving sunflowers in a watering can in front of my garage, because they know how much I love them. My neighbor insisting on walking with me a few times a week because it will make me feel better, with the promise that "we can make fun of other people's yards." Friends who call to check on me and drive me to do fun things and let me play with their dogs. Family members who let me break down a little, and still love me the next day.
 
While I wait, I am constantly humbled by these gestures. My diary/log/journal/data set may be bleak, but at least I have some good company during the down times.