Post #105: Dispatches from the land of wheat

This bread is sad, much like my colon. 

I spent over an hour wandering through the aisles of my local hippie mart, stocking up on bags of eight dollar gluten-free cereal and quinoa porridge, wheat free English muffins the weight of hockey pucks, and more produce than I have consumed in the last six months combined. 

I came prepared with double sided lists; I scrutinized each label for offensive additives, valuing purity of ingredients over taste and texture. I circled round and round the bins of dusty flours, spent far too much time choosing nut milks, and was so overwhelmed by the whole process that I didn't even think to head over to the cosmetics section for an impulse purchase (per usual). Exhausted, I loaded my purchases into the car and drove directly to the nearest pizza place. 

As I was somewhat guiltily eating my margarita pizza (sans cheese), I chose to ignore the shiny new wheat free foods banished to the dark corners of the trunk. As I sit here now, head pounding, body flushing, trying to keep said pizza down, three things are abundantly clear: 

1.) I am more afraid of this new diet experiment than I thought
2.) Emotional eating doesn't go away, no matter what your current relationship with food
3.) In some ways, I am more afraid of things changing (despite the possibility of improvement) than things staying the same

Isn't it interesting that when there is stress involved, the body overrides the mind's innate wariness about food and does a face plant into the nearest source of fat and carbs? In this case, food was both the cause of and (temporary, stupid) solution to the problem. Anxiety about changing my diet led me to eat a food with a high likelihood of making me feel like shit (mission accomplished!), all to avoid thinking about the other new foods I will be eating on Monday, which are healthier and probably less likely to make me ill. It's all very confusing. 

To put it another way: I am worried about eating almond butter when I have spent over a year ingesting/injecting a number of powerful immunosuppresents and other scary drugs with page long lists of potential side effects. 

It makes no sense. I know this. 

I could chalk this all up to nervousness about "rocking the boat," of taking any chance at altering the current, relatively stable (or at least predictable) condition of my bowels. I could say that I was worried about placing all of my hope in another plan, when other plans have failed so miserably. I could admit that I worry about making things worse, or messing up my body somehow, though the latter is unlikely. 

Those things are true, but I think the real reason I'm anxious is that this is the first proactive step I've taken beyond my doctor's guidance in quite some time, and as such is an acknowledgment that I want more, from my medicines, from my diet, from my life, from myself. 

It feels risky to not want to settle anymore. 

Especially when I know that more, in whatever form, might not be possible. 

And so tonight, as I try not to hurl, I am going to remind myself that any relative risk is worth any potential benefit. Just like I have to talk myself into trying a new pill, I will talk myself into this. At the very least, all of the new foods sitting benignly on my dining room table, sequestered from the rest of my pantry, are unlikely to give me nigh sweats, high blood pressure, joint pain, or tremors, and there is some comfort in that. 

Post #101: It's not me, it's you

It it's on candy, it must be true. CANDY DOESN'T LIE.

Dear tiny, tiny doctor: 

Last week, we had a frustrating meeting. You're frustrated, I'm frustrated, my AAC is frustrated. 

Frustration all around. 

I understand that you are human, and as such are entitled to an off day. I know you can't snap your fingers and fix all that is wrong with me; my only requirement is that you keep trying. 

I've encountered this behavior before, from previous doctors. I can recognize the signs: the impatience, the shortness, the annoyance that the treatments aren't working. The bland admonishment to "hang in there and give things a time to work out." 

Ordering test after test after invasive, pointless test. 

Trying to parse and farm out my ailments; telling me you can only treat my gastrointestinal symptoms. 

Telling me you "get it" and that "you're frustrated too."

I'm not so sure that you do get it anymore, and I can guarantee I'm ten times as frustrated by my lack of progress as you'll ever be. At the end of the day, you get to go home, take off your lab coat, and resume your life, free of the digestive complaints you spend your day hearing about. I don't get to clock out at the end of the day. 

I'm tried of "hanging in there."

Deep in my heart, I feel like this treatment is not working. We are running out of viable options. The more pills that don't work, the more tests that are inconclusive, the more side effects and strange symptoms I seem to accumulate, the more you seen to step away. This is not my first time at the rodeo: I know a doctor who is distancing himself when I see one. 

As much as I posture and pretend, I know I don't know it all. I am, however, the expert on my disease. 

When the Prednisone YOU prescribed gives me high blood pressure, don't tell me it could be caused by a preexisting condition. Listen to me when I tell you I've never had a problem with high blood pressure before. Feel free to scroll through my entire medical history to check. I'll give you a minute. 

When I complain about being tired, so fucking tired, don't you DARE tell me it's not related to my Crohn's. How can you possibly know with certainty that "there is no way" the disease is causing this amount of exhaustion?  

Don't tell me that changing my diet won't help. I'm not a moron: I know flax seeds and green smoothies won't cure my disease, but maybe dietary changes could help alleviate some of my symptoms (the dietitian YOU sent me to agrees, by the way). 

You don't know what's going on. I get it. But it's not my fault that my colon isn't being cooperative, and I won't let anyone EVER make me feel to blame me for a disease process that is so obviously out of my control. 

Don't get frustrated with me: take it up with my AAC. 

If all else fails, be honest. Tell me you're not sure what's happening. Tell me you're looking for answers, or consulting with colleagues. I don't require perfection, only compassion. 

You ordered another colonoscopy, my second THIS YEAR, as a last ditch effort to find some answers. As much as I don't want the procedure, I do want clarity. So look for clues in my colon; take some pretty pictures while you're there. 

I hope it can give us some direction. 

In the end, though, I need a doctor who will keep trying. I need a doctor who will stay positive. I need a doctor who will give me hope when I am feeling hopeless. 

If you can't do that anymore, I will find someone who can. 

I'm not giving up on you just yet: don't give up on me either. 

Sincerely,

AAC

Post #91: holla holla holla

Here, a brief update told in picture and song:
 

 
BNL was my JAM in college. That's right, I call them BNL. We're tight like that.
 
Do you know what's keeping my awake? Prednisone. I didn't sleep last night, and despite halving the dose, I am still wide awake and kind of jacked up, but not in a productive way. Sigh.
 

SOUP......SO MUCH SOUP
 


Also, I have become a soup vampire. My prey? That bowl of loveliness above. I add extra water and eat around the noodles (or sneak a few, if I'm feeling extra adventurous), leaving nothing but a sad pile of noodle carcasses and chicken (should I say "chicken") chunks in the bottom of the bowl. Gross AND unsatisfying! Wheeeeeeee I'm so tired.
 


Haha, me too! Just kidding.

Perhaps because I am so tired, these dog shaming memes are cracking me up. Like, seriously, I just snorted. I <3 dogs, especially hilarious, naughty dogs I don't have to clean up after.

Finally:

Mmmmm, expensive yuppie goodness

Odwalla, I salute you. Your grown up chocolate milk protein drink has been keeping me afloat for the last week.

That is all-I am going to get in bed and try to sleep.

Post #84: Brought to you by the letter B

Most. Depressing. Advertisement. Ever.

Can you imagine if Santa really did have Crohn's? He'd have to tow a port a potty behind the sleigh....although technically he would have access to all the bathrooms in the world. It seems especially cruel to leave milk and cookies for IBD Santa, when what he would really want is candy coated Imodium. If you're on the naughty list, maybe IBD Santa clogs your toilet! Or poops in your stocking! Ewww. Annnnnd, we're done.

Why is this post brought to you by the letter B, you ask? B stands for bloated, balding (one baldish spot up front, now covered by bangs but still freaking me out), bitterness, bitchiness, BIRTHDAYS, and bananas (bananas are easy on your stomach, FYI).

As you may have guessed, I'm steroid free, and my AAC is not loving it. Add to the mix a cold I picked up from some random lady who was hacking next to me during class at the gym, and a time of year that usually makes me introspective and moody, and whee! Welcome to the party.

It's pretty much my one year Crohn's anniversary (yeah! said no one). I'll have a colonoscopy early next month to see where things stand, but I pretty much know what my next step is going to be.

hahahahaha so true.

This year the prospect of planning a "fun" birthday is especially depressing. Last year, for my big milestone birthday, I was feeling like crap, and promised myself I'd plan mini-celebrations throughout the year to make up for the fact that I could barely drag myself out to lunch on the actual day. I thought I would be feeling better, and I looked forward to "getting back to normal." It's been a year now, and I still feel like crap (my stomach is very loudly agreeing with that last statement).

With the exception of a few good stretches brought about by my favorite little pink pills, I'm pretty much where I started. I've had more tests, I have more experience, but I don't have anything approaching a workable solution for the problem. This past year has been full of pain, frustration, fear, and uncertainty. It has also been filled with small wins, and some bigger ones, including the fact that I'm still standing despite all the shit that's been thrown my way in the past 12 months (I mean that metaphorically, there wasn't a roving band of monkeys throwing feces at me. Just to clarify). I'm here and I'm still hopeful. That in and of itself is something to celebrate with (dairy free, low fat) cake.

So I have a birthday coming up, and a colonoscopy, and the fresh slate of a new year (I wish it could be that easy-Crohn's was soooo 2012. Peace out IBD in 2013!). I don't know what's in store for tomorrow, let alone the next year, but I still find myself making plans, listing things I want to accomplish. I hope I will be able to cross some things off that list. I hope I will be able to have twice as many mini parties to make up for the past two years of shitty birthdays. I hope I will spend less time on the couch, bed, and toilet and more time out in the world. I hope-I guess that's the main thing. I still hope.

Post #70: I never call BS on ranting

I'm blogging 30 posts in 30 days for National Health Blog Post Month with @wegohealth.

Join me: http://info.wegohealth.com/nhbpm2012 #NHBPM

 

Won't you come join me? Pull up a chair, plenty of room.

 

Le Prompt: Call BS on something. What's something that is just ridiculous?

Well what do we have here? Another prompt that requires RANTING? OK!

 

 

I think this list requires a rating system; let's say 1-5 pooping cows. Obviously, the more pooping cows, the more bullshit. To the list!

 

5 Cows: Plug your nose holes

 

Doctors who say they can "fix" or "cure you

I was trying to figure out where my extreme distrust of gastroenterologists came from, and one of the reasons that I came up with is that pre-diagnosis, in the IBS days, 95% of the doctors I visited, be they gastros, internists, or even naturopaths, assured me they knew what was wrong and they knew exactly how to fix it. They had ideas, and plans, and a confident air of expertise. They all failed.

 

Maybe I wouldn't have raised my hopes so high if they hadn't been so sure of their ability to correctly diagnose and treat my problem, but every time I was left in a deeper and darker hole than when I started. One gastro, after prescribing 4-5 medications (bear bile, anyone?) finally looked away from the computer screen, propped his elbows on his knees, and said, "Well, I'm out of ideas." So what should I do next? "Maybe go see a different gastroenterologist." Thanks! And the saga continued.

 

Now, I don't think any of these doctors would have fed me the same lines if I had a Crohn's diagnosis-they're not quacks. But one of the reasons I like my current doctor is that he has never claimed to have all of the answers. He said in our first meeting that treating Crohn's is an ongoing process, and it would probably take some time to find the right medication combination that would give me the best symptom control. And that has always been the goal: symptom control, remission, quality of life: actual potential positive outcomes with this disease.

 

I'm still working hard to trust him, even though he has never tried to sell me a promise I know, deep down, to be false. It is, like the Crohn's, an ongoing process.

 

4 Cows: Grab a shovel!

 

Medication side effects that are worse than the actual disease

For serious. In the early days of taking one medication, I had this actual thought:

 

Untreated Crohn's is preferable to this drug.

 

Let that sink in. Crohn's is bad enough, but add in a laundry list of super fun side effects and the party JUST KEEPS ROCKING. Now, nausea and diarrhea (ironic, no?) are one thing, but then add in the really scary potential side effects: lymphoma, heart failure, fatal infections.....it's enough to make you want to crawl under a rock and suck your thumb. Beyond worrying about cancer or catching pneumonia, there is the great known/unknown conundrum. I know how crappy I feel with untreated (and, sometimes, treated) Crohn's-how exactly, and in what ways, will I suffer with new medications A, B, or C? It's never an easy decision to decide to cast your hopes on a medication that will potentially (and in my experience, frequently) make you feel worse than when you started, hurting you as it's "helping" your disease.

 

3 Cows: Fertilize those flower beds!

 

Colonoscopies

In the world of Crohn's, you'll hear this a lot: colonoscopies are the GOLD STANDARD of diagnosing and monitoring the disease. It's the best way to know what is going on up in your digestive business; sure, an MRI can show inflammation or strictures or obstructions, but nothing beats getting up close and personal with your mucosal lining with a camera attached to a giant hose. Here's the deal: WHY HASN'T ANYONE FIGURED OUT A BETTER WAY TO DO THIS?! Yes, there are those little pill cameras you can swallow, but it's not the same.

 

Dear science: first, focus on the cure for Crohn's thing, that's muy importante. And while you're doing that, I guess find better Crohn's treatments with fewer side effects and less toxicity. But if you have time, and want an extra credit project, can you work on creating a less invasive test to scope out my AAC? Maybe a "Magic School Bus" style shrinking ray for my doctor and a tiny colon submarine? Thanks.

 

2 Cows: Collect those Rocky Mountain oysters!

 

Insurance

Having to worry about getting and maintaining coverage if you have a pre-existing condition?  Let's work on that.

 

1 Cow: Mooooooooo

 

Fatigue.

I really, reallllllly have to call BS on Fatigue. I know it's a symptom of my disease, and actually of some of my meds, but I would like to get through the day without having to take a nap. I would like to, say, attend a yoga class (where I worry about colon explosions a lot of the time, btw) and know that I have enough energy to complete the class AND stay awake for more than an hour after it. It's frustrating to only have energy in fits and starts.

 

All of the things on this list are bullshit worthy. You know what is NOT bullshit worthy? The fact that this is my 70th post. Holy crap. Through flares, brief periods of remission, colon explosions, new meds, old meds, and now a month of daily blogging, my ass (and my AAC) has been writing post after post. Thanks for reading about the goings on in my colon, and I hope your own AACs aren't angry at all.

Post #62: Paging a doctor with an AAC....

I'm blogging 30 posts in 30 days for National Health Blog Post Month with @wegohealth.

Join me: http://info.wegohealth.com/nhbpm2012 #NHBPM

 

When I do research, I like to unbutton my sweater too. Data gets me all hot and bothered.

Today's super fun prompt: "I don't know about this, but I'd like to."

 

Hmmm. There is a lot I'd like to know about Crohn's, and a lot I don't understand. I try to keep myself updated on the latest published research, and I tend to spend a lot of time trolling various message boards to learn how other people are dealing with the symptoms/side effects I'm experiencing. But however much time I devote to these pursuits, I don't have a medical degree; I'm not a doctor, and I can only filter the information I find through a patient's mind.

 

What I would like to know is how a doctor with Crohn's deals with his/her disease.

 

If I had a fuller understanding of the human body and how it works, and a medically grounded viewpoint from which to view this disease, I wonder if I would be more or less likely to approach new and novel (and potentially fatal) treatments with apprehension. I know many doctors choose a field of study based on family history and experience; my own doctor has family members with IBD, and I like to think it gives him insight into the emotional and psychic toll this disease can take on a person. As far as I know, however, he doesn't have the disease himself. This is a crucial distinction. It's one thing to appreciate the effects of this disease, but another to experience them yourself.

 

I wonder how a doctor with Crohn's deals with the pain, fatigue, unpredictability, and uncertainty. I feel like doctors in general must view disease differently than the rest of us, as they see it so intimately on a day to day basis. Are the Crohn's doctors more proactive about their treatment? Are they doing things that would benefit the rest of us? Do they weigh the various studies and statistics differently because of professional insight?

 

Whenever my doctor talks to me about the risks/benefits associated with a particular course of treatment, it seems I'm usually focused on the risks and my doctor the benefits. Last year I went to a Crohn's symposium where a doctor graphically illustrated the cancer risk associated with a class of drugs. Thousands of little gray people (healthy) and a few red ones (cancer)-an acceptable trade off for the potential benefits. I was offended by this presentation, and it took me a while to figure out why: I felt like he was being cavalier about the little red people. The graphic was intended as a visual means of representing the "minuscule" risk associated with the drug, and the overall message was: calm down! Don't focus on the red people! It probably won't be you!

 

When I had time to think about it, I realized that the doctor wasn't looking at the chart from the mindset of a potential red person; he was all grey, all the way. It wasn't a risk for him. If the risk is not real, not personal, how can he allay my fears? It sure as hell is real to me.

 

My own doctor once said, after a lengthy conversation about the statistics, "You know, we want our patients to be healthy. If your Crohn's is better, but you develop cancer, that's not a win for us. We try to calculate the risks  of treatment and make the safest possible choices." I understand there are risks involved from every angle: taking a drug, not taking any drugs, having surgery, driving the car to the doctor's appointment.....I just wonder what choices a doctor with Crohn's makes, with the personal fear and the professional knowledge.

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.

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.

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.

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.

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)

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.

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.

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 #47: Pill poppin' (or poopin', probably both)

The one I'm really worried about is massive right breast swelling. Symmetry is important, yo. Also, the one involving clowns (shudder).


On Monday, I am going to start taking my new pills. I was cleaning out my bathroom last weekend, and I came across the pill graveyard that lives under my sink. I forget it's there, usually, and I'm always shocked by the size of the collection. I'm not sure how many thousands of dollars of medication I have under there, but it takes up a whole shelf. Every time I get a new medication from the pharmacy, I wonder if it will end up there, sequestered in its orange plastic prison with the other pharmaceutical rejects.

If I arranged these meds in chronological order, the liquids, suspensions, gel tabs, and tablets, in plastic, foil packs, bottles, and tubes, they could map out the course of my illness. The story they tell is one of educated medical guesses, trial and error. None of them worked. One had to be illegally ordered from England. Most of the bottles are still pretty full.

They are a rainbow hued record of failure.

I know the proper way to dispose of them (mix them with coffee grounds or cat litter! Don't flush them!) but I can't seem to let them go. It's like if I get rid of them, part of my history gets erased. It took years to amass this pile, each new med a promise, a beacon of hope, a snake oil cure. Even the ones with the scary side effects get to stay: the medicine that made me convinced I was going to die. The medicine that gave me stabbing stomach pain. The medicine that made me sob, uncontrollably, on the kitchen floor, impervious to reason and inconsolable. The medicine that made my legs feel like they were asleep all the time, even though I was constantly moving them. The medicine that gave me a rash. The many, many medicines that made me nauseous or dizzy or tired. I took them all. I hoped they would all work. None of them did. Keeping them helps me document this history: it happened. It happened to me. It could happen again.

When I take a new med, I read everything I can find about it online. I read the insert that comes with the med from the pharmacy, every freaking word. I try to take new pills during the week, in case I get weird side effects, preferably on a Monday, when all new things start (the week, diets, school). I get scared and dramatic and pace around the kitchen- eventually, I just swallow the motherfucker and hope for the best, because in the end, it's all a leap of faith.

This Monday I start a new med, with a new schedule that involves precise dosage instructions, many blood draws, and some potentially nasty side effects. I'm giving myself the whole day off. It might seem like I'm over thinking this, or blowing it out of proportion, or psyching myself out-all fair charges, to be sure, but after two dozen or so new med Mondays you start to develop patterns and rituals.

The anxiety about new meds never goes away-but strangely, neither does the hope that AT LAST you might find the one pill that will heal you, help you, and improve your quality of life. Much like doctor shopping, taking new meds is like going on a joyless series of blind dates, although I guess for the metaphor to work the blind dates would have to kick you in the kidneys a few times or slip you a laxative. Whatever. You keep trying, and searching, and trying and searching until you find your one true drug.

And when you find that drug, maybe you will finally be able to clean out your pill graveyard, that shrine to sickness and anchor to medical memories past.