Post #88: Taking care of business

Yup. Still pissed about this.

Get it?! Stall? Like a BATHROOM!? Oh CCFA, you're so clever. (sarcasm!)

I am feeling super tired and gross today (partially my fault, partially my colon's fault); it's been a busy week of crossing stuff off my to-do list, and it's like I'm in an end of the week energy slump. Some stuff I did:

1.) Got through the first appointment with my doctor without crying.
This is big. I met him pretty much a year ago, and have always done the ugly cry in his office. Perhaps it was getting over the hump (ha, hump) of having him meet my AAC in person (goodbye, last vestiges of dignity!) but I felt like this was the first time I was able to have a calm, rational discussion about my situation without being emotional or reactionary.

Since it was my one year anniversary, I really wanted to ask him if he was SURE, really sure, that this was Crohn's. As I didn't want to seem like a complete moron, I may have phrased it like, "Are you sure you didn't find a magical tape worm up there? This is definitely Crohn's?" but the answer would have been the same: yes. It may seem odd that I'm still questioning this, but (and this is difficult for me to believe) Crohn's has only been on my radar for a year. I have only had this diagnosis for a year. It's not like a pregnancy test-you don't pee on a stick and have a little blue colon pop up, like, congratulations! It's IBD! So, after two colonoscopies, as assload of testing, a few flares, and a couple dozen handfuls of steroids later, I guess my stick finally turned blue.

2.) Got scanned
Since I am steroid free (woooo) I finally got a DEXA scan. Basically, they scan your spine and hip to make sure your bones aren't disintegrating due to prolonged steroid use or lack of calcium absorbsion. Sexy! This was the least invasive procedure I've had this month. (see #3)

3.) Got probed
And then learned this bit of intel: did you know that if you have an autoimmune disorder, you need yearly PAP smears? I mean, if you're a lady. I DID NOT KNOW THIS.

4.) Exercised, and felt ambivalent about it
I am so tired of being tired. Every time I work out-something I convince myself is in my best interest-I need a 2-3 hour nap. After a tough work out, I used to like the feeling of sore muscles-a little reminder of all the ass you kicked at the gym. Now, as my butt muscles protest when I climb the stairs, it just makes me cranky. Like, great, I'm exhausted and now I'm sore too. DAMN YOU TOTAL BODY CONDITIONING! It just makes me question the point of working out at all, right now-I started this because I thought it might give me more energy, or some kind of mental boost, or calm my AAC, but it just makes my ass tired (and not lifted). Sigh.

5.) Donated blood (to the lab)
A quick AMP story: for whatever reason, the phlebotomists at the hospital are uniformly hilarious. After my appointment, I went to get blood work done, and as the guy was cinching my upper arm with rubber tubing I peeked at the number of vials (4) he was about to fill. He was a pretty quiet guy, and when he saw me looking at the tubes he kind of smiled and handed me the packet with the needle in it. "Did you want to draw the blood? Go for it." I laughed and said I was just seeing how much blood he was going to take. Without missing a beat, he replied, "Just the 4 the doctor ordered. And then of course the extra 2. For Craigslist." He was so matter of fact about it, my eyes got big and I kind of looked at him in horrified confusion before it registered as a joke. We both started laughing and then we talked about how weird it is that some doctors are squeamish about their own blood. Good times.

That's all I've got for now. Over and out.

Post #87: #Escapethestupidity

So....I was doing my usual perusal of IBD blogs, when I came across the CCFA's (that's Crohn's and Colitis Foundation of America, to you people with functional colons) latest add campaign, winningly titled "Escape the Stall." Here are some of the images from the campaign:

 

Wow! Don't these images just scream DIGNITY and RESPECT?

No. They are actually horribly, horribly offensive and insensitive. Huzzah, CCFA! I can't wait for these ads to become PSAs, so more people can continue to NOT understand this disease!

Look, I read the article in the NYT; I understand the reasoning behind the ads. I think the push to spread awareness about IBD is great, but I cannot think of a more poorly executed campaign to accomplish this goal. When I first saw these ads, I honestly thought they were some sort of tasteless parody. Alas.

Despite what you may understand from the ads (or from this blog!), Crohn's is not just a poop disease. It's not all about spending time in the bathroom, although that is certainly a reality for people with IBD. It's about fatigue, pain, malabsorbtion, surgery, increased risk of cancer, inflammation, blood tests, doctor's appointments, scary drugs, missed work, missed life experiences....it's a multifaceted physical, mental, and emotional clusterfuck of symptoms and experiences. Take a look at these ads: do they convey any of the complexity of this disease?

Some of the ads contain a small, written post script that address some of these issues, but the visual impact of a person stuck in the bathroom-and the name of the campaign, "Escape the Stall"-overshadow these nuances. This is about poop. Embarrassing, embarrassing poop. Shameful poop. If the goal was to bring awareness to IBD, to take it "out of the shadows"-it has only succeeded in pushing the sufferers back into the stall from which they should, as the ad encourages, seek to escape.

If you knew nothing at all about Crohn's, these ads would lead you to believe it is a disease relegated to the bathroom, a dirty place for a dirty disease. Worse, these IBD sufferers are in public bathrooms, inflicting their dirty disease into a public space. To suggest through this imagery that Crohn's is a dirty, embarrassing, shameful thing is inexcusable. These images do not encourage hope; they perpetuate hopelessness.

I can appreciate that creating an ad campaign around IBD would be difficult. It's a complicated, ugly disease. But then again, so is breast cancer, diabetes, colon cancer, or the myriad other diseases that have a presence in drug commercials, public service announcements, or magazine ads. And yet-those diseases are treated with a respect that is entirely absent from the CCFA campaign.

The "Escape the Stall" images seem to be attempting a light-hearted tone, a kind of "reel them in with humor" approach. Hey asshole marketing team that developed these ads: there is NOTHING FUNNY ABOUT CROHN'S. You know what I think of when I see the bride stuck in the bathroom? That scene from "Bridesmaids" where the bride gets food poisoning and shits herself. Santa? I think that dude ate too many cookies. The girl in the high heels? I think she drank too much and is in the toilet to upchuck her cosmos. NONE OF THESE THINGS ARE RELATED TO IBD.

The CCFA is an advocacy group. It is their job to educate people about IBD. They have utterly failed and managed to insult their constituents in the process.

We deserve better.