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 #83: My brows need IRON

dun dun DUN....(cue soap opera big secret reveal music)

I was watching this episode of Will and Grace a few days ago, and for some reason I can't remember Jack lost an eyebrow, was wearing an eye patch, and then had Grace draw on this stunningly natural sharpie version. Haha, oh Jack.

In related news, I went a litttttle overboard on the plucking (again). It's not as pathetic as last time-one eyebrow isn't cocked significantly higher than the last one-but they still look pretty anemic. I am putting myself on a strict no-plucking diet for the rest of the month, which is a shame because tweezing is my happy place.

Someone was telling me that when they were overwhelmed, they piled on the eyeliner-my eyebrows themselves are my stress barometer. And I'm feeling stressed out. Everything (knock on wood a few times) is holding relatively steady-I have one more week of steroids left, and then I will be totally off them. I exercise 5 days a week. I eat out. I'm finally taking my freaking vitamins. And yet, like the understated, elegant beauty that is Jack, I am giving a huge SUPER THIN EYEBROW RAISE to the whole situation.

I just feel edgy and....concerned. Wary. There is so much riding on this last bit of tapering, and then my body's reaction to just being on the one other drug. I find myself craving late night cookie binges and bad TV. I pulled my quilt out of the dryer today and wrapped it around myself and just stood still, in the middle of the kitchen, because I felt so happy and warm and safe. I crave comfort, and sometimes old habits are the most comfortable of all. Cue eyebrow tweezing, stress eating, magazine reading, and Internet shopping. Wheeeeee!

What is especially ironic is that at a time when I am worrying about the hair on my head, I gladly removed a lot of the hair above my eyes. Everyday my hair looks a little more deflated (to my eyes, anyway). It still comes out in the shower and when I comb my hands through my hair after. I keep waiting for the tipping point, the point at which my scalp becomes visible beneath my hair, or I develop a bald spot, or whole clumps start falling out. Part of me just wants to shave it off and be done with it, but that's not right.

So, I keep going. I keep doing what I'm doing until I have my colonoscopy, so I can make more informed decisions. I'll keep sweating with the oldies, and try to resist the siren call of the sugary treats in the freezer. I'll just keep waiting. I'm pretty good at waiting. I've had a lot of practice.

Post #82: We don't know what we don't know

Savasana

I've been doing yoga lately-once a week-and I find myself looking forward to it. I don't particularly enjoy the crowded, stuffy room, or the sweat that runs into my eyes, or the way my arms and legs shiver and shake when I hold a challenging pose. I do like the fact that just for an hour, I am totally focused on the things my body can do, and not the ways in which it malfunctions. At the end, as a reward, you get to do Savasana, or "corpse pose" (shudder). This is my favorite part. You're exhausted and sweaty, and completely inhabiting your body, such that you feel the heaviness of your limbs as they connect to the floor, notice the rise and fall of your chest, feel the tightness in your lower back release like air from a balloon. It is surrender.

 

At the end of the pose, which always comes too soon, the yoga teacher reads a kind of daily affirmation, with a quote and a takeaway message. I don't always remember them, but it always seems like they are applicable to my experience in some way. This could be the happy exercise endorphins, or the fact that I'm probably more receptive to this kind of stuff when I'm too tired to be snarky. We were doing a stretch and the teacher said we were basically wringing ourselves out, like a sponge. That's exactly what yoga is: as I twist and bend my body, all of the fear and negativity and worry are squeezed from my body. I never want to punch anyone after yoga.

 

All of this is a lengthy preamble to this quote I'm going to post below; you can find it (and the awesome music) here. It should come as no surprise, if you read yesterday's post, that I ate all the cookies. So many cookies. I stress ate before the Crohn's, so why should now be any different? I mentioned that I was frustrated with myself for perpetuating this cycle, of doing the "normal" things I did before and expecting-hoping for-different results. I'm frustrated again tonight (and nauseous!), and then I found this quote. It's exactly what I needed. Yoga AND an Internet affirmation? Today was a good day.

I will never be a brain surgeon, and I will never play the piano like Glenn Gould.

 

But what keeps me up late at night, and constantly gives me reason to fret, is this: I don’t know what I don’t know. There are universes of things out there — ideas, philosophies, songs, subtleties, facts, emotions — that exist but of which I am totally and thoroughly unaware. This makes me very uncomfortable. I find that the only way to find out the fuller extent of what I don’t know is for someone to tell me, teach me or show me, and then open my eyes to this bit of information, knowledge, or life experience that I, sadly, never before considered.

 

Afterward, I find something odd happens. I find what I have just learned is suddenly everywhere: on billboards or in the newspaper or SMACK: Right in front of me, and I can’t help but shake my head and speculate how and why I never saw or knew this particular thing before. And I begin to wonder if I could be any different, smarter, or more interesting had I discovered it when everyone else in the world found out about this particular obvious thing. I have been thinking a lot about these first discoveries and also those chance encounters: those elusive happenstances that often lead to defining moments in our lives.

 

[…]

 

I once read that the definition of insanity is doing the same thing over and over and expecting different results. I fundamentally disagree with this idea. I think that doing the same thing over and over and expecting different results is the definition of hope. We might keep making mistakes but the struggle gives us a sense of empathy and connectivity that we would not experience otherwise. I believe this empathy improves our ability to see the unseen and better know the unknown.

 

Lives are shaped by chance encounters and by discovering things that we don’t know that we don’t know. The arc of a life is a circuitous one. … In the grand scheme of things, everything we do is an experiment, the outcome of which is unknown.

 

You never know when a typical life will be anything but, and you won’t know if you are rewriting history, or rewriting the future, until the writing is complete.

This, just this, I am comfortable not knowing.

 

-Debbie Millman (previously) in Look Both Ways: Illustrated Essays on the Intersection of Life and Design

Post #81: The cookie conundrum

But also Crohn's, Cramps, and Constipation!

 

Yeah, no more enforced blogging! I have to say, that really sucked the fun right out of writing a Crohn's blog, ha.
 
Before I forget, it was great to see too IBD related articles on one of my favorite websites: read them here and here.
 
I'm watching Sandra Lee's Taverns, Lounges, and Clubs (TLC-get it?! get it??), otherwise known as the Sandra Lee alcohol appreciation hour. This chick loves her booze. You have to appreciate someone who managed to make drinking her JOB.
 
Back in AAC land, the tapering off steroids continues, as does the increase in symptoms. Shocking, I know, but I keep putting all of my hope in being able to maintain steroid-free remission without having to take new and scarier drugs. It's like watching the same movie over and over again and hoping for a different ending. Complicating the issue is the fact that I continue to eat as though I'm on a full dose of steroids. Smart! As I approach my one year diagnosis anniversary (for my one year anniversary, I'll be registered with Charmin-just kidding, I still HATE THOSE ADS), you'd think that some of the lessons learned in the preceding months would stick: fatigue is unpredictable. Decrease in steroids=increase in colon explosions. DAIRY IS NOT YOUR FRIEND.
 
I guess I'm a bad Crohn's student, because I keep having to take, and fail, these tests again and again. The desire for normalcy, represented nowhere more powerfully than on the plate, is constantly testing my resolve. For every time I avoid plunging my face into red velvet cake (yesterday afternoon) I go out and think that suddenly I can magically eat lettuce (yesterday night). I forget about all of the cramps and bloating (this morning) and really want a cookie (right now). It's a continual cycle of frustration and remorse.
 
Welcome to the cookie conundrum: the reason that eating is so fraught with fear and suspicion. If I do eat the cookie now, I will probably be sick tomorrow morning, thus interfering with Yoga, which is my favorite fitness center class of them all. If I'm extra sick in the morning, and still do yoga, I will have even less energy tomorrow afternoon, which means a longer nap and a disrupted sleep schedule. Riddle me this: how can you possibly plan two moves ahead when your colon could decide at any moment to throw a wrench in your plans? You can't.

You can't control variables like fatigue, and even if you only eat "safe" foods you still might end up feeling sick. One of the many annoying truths about Crohn's: a cookie is never just a cookie-but sometimes it is. I can plan five steps out to accommodate eating one of my favorite "normal" foods when I'm out with friends, and still wind up spending my morning in the bathroom. Conversely, I can think, screw it, eat two cupcakes, and lift weights with the ladies at 9am. You never know.
 
Basically, even if you make (smarter) choices that lesson the likelihood of symptoms, there is no fail safe diet, or ritual, or exercise or pill, that will prevent them all together (or at least, any that I have found). I'm still trying to wrap my head around that reality. I'm used to having a more logical relationship with food: eat well, feel well. Eat fried chicken, feel like crap. Eat chocolate, may as well have taken a laxative. A year into this Crohn's business and it's still hard to accept that these rules don't necessarily apply anymore. Sure, the fried chicken thing is still true, but a cookie didn't use to have the power to make/break my daily plans.

Maybe that should be a motto contender for this year:

It all starts with one cookie.
 
or:
 
C is for cookies, BUT COOKIES AREN'T FOR ME.
 
or:
 
JUST EAT THE DAMN COOKIE-you'll probably have diarrhea anyway.

or:

Take a bite of that cookie-do you feel lucky? WELL DO YOU?

 
I'll have to tinker with those.