Crohn's Chronicles: A blog about Crohn's Disease

Check out this super fancy word cloud for my last post of the month. It pretty much speaks for itself, I think. Although, I do think it's interesting that Crohn's is so tiny (it's up at the top). I essentially just plugged in my blog's URL and and let it come up with whatever. I'm wondering if this means I need to actually say Crohn's more often. It is in really big letters at the top of my page, though. So... who knows? Also, I clearly say "like" way too often. Good to know.

So, I noticed something today. I was in the grocery store stocking up on end-of-semester snack foods with my brother and I glanced at my hands. Specifically, the palms of my hands. Do you know what I found? Color. My palms were pink. This may not make sense to some of you. Let me explain. Because of Crohn's, I've been severely anemic for the last several years. One way to tell (without a blood test) if you're anemic is if your palms are pink. I learned this when I went to my current doctor for the first time and he asked to look at my (super pale) palms. He then told me, with impressive accuracy, what my hemoglobin count was. I've been feeling really great recently. Not perfect, of course. There are still rough days, but the good far outnumbers the bad. It's been nearly two years since that doctors visit, and my hands being pink again just seems like such a tangible demonstration of the progress that's taken place in that time. Pretty cool.

Today, I'm supposed to list five challenges and five victories having to do either with my health or my activism. Let's just dive right in. Challenges 1) ...  ...  ... Okay, I'm having a little trouble here. While I understand the value of identifying five challenges and five victories, I'm not sure I can. No, that's not true. I absolutely can. I just think that anything I say will be kind of arbitrary.

A tagline , huh? Well, I really enjoy the one I have up now: Because Sh*! Happens. It might be overused, but I like it. I think it sets pretty much the exact mood I look for in my blog. It's just a little profane. It's honest. It's funny. I was going to try and come up with another one, but I'm deciding as I'm writing this that I'm sticking with it. So there.

Alright, I'm very wary of this , but I'm going to give it my best. It was finally happening. After months of feeling awful, Maggie was finally going to the doctor. Or maybe it had been years. Who knew? She couldn't even identify what health felt like anymore, all she knew was that something had to change and this felt like the first step. She sat in the backseat of her aunt and uncle's car on the way to the hospital, (she couldn't even get herself together to make it to the appointment on her own) wondering what the doctor would be like. Her experience with gastroenterologists had not been great so far. "Clearly," she thought. "Just look at the mess I'm in." But as she walked in, she knew this guy was different. The office was comfortable and soothing. Copies of the New Yorker sat on an end table between two cushioned chairs. Maggie walked up to the counter where the nurse sat and said she was there for her 9am appointment. The nurse ha...

I'm going a little off script today. The official prompt is to name a mascot, and I think we all know that I would just spend another post talking about Myrtle. (Because she's pretty much my mascot already.) I've done that a lot recently, though, and what I have to say today is something new. So, strap in. After writing my Gloria Steinem post yesterday, I've been thinking even more about the importance of names. I've also been thinking about one specific name that we in the Crohn's community often use to describe ourselves.  Crohnie.

It's Health Activist Choice Day again. So, what do I want to say? Well, there's this post I've been trying to write for a while now, but can't really seem to get a grasp on what it actually is. So, what I'm going to do is just force myself to write about it, and hopefully I turn out something worth posting. Let's see what happens. If you follow me on twitter and/or facebook, you probably read at least one of my (many, many) posts about my getting to meet Gloria Steinem. It was a pretty amazing day. I got to attend both an informal Q&A and then a more formal lecture later in the day. I was lucky enough to ask her a question in each setting. In response to my first question she told me to believe in myself. I mean, it's not a big deal or anything. ...Okay, she was telling all of the young feminists in the room, but she was looking right at me when she said it. And let me tell you, when your idol looks you right in the face and tells you to believe i...

If I could write myself a reminder , it would be this: Maggie! Remember: You have something of value to contribute. This is one of the things that posting every day has brought up for me. There's this moment right as I'm about to launch each post out into the internet that I am absolutely certain it is not worth posting. Maybe I don't actually have any authority to be speaking on this subject. Maybe my writing actually sucks. I'm not sure why I have these fears, but there they are. So, recently I've been trying to just let them go. I've worked really hard to become a decent writer and I'm certainly an expert on my own experiences. My voice matters and I'm going to keep talking.

Hi folks! Today's a short post. I just want to talk about a couple of the really cool things happening around here. First, I'd like to formally announce the launch of the Crohn's Chronicles facebook page! I'll be posting updates for blog posts, cool things happening in the Crohn's community and anything else that strikes my fancy. So, head on over to the page and like it or hit the like button on the top of the column to your right. I look forward to seeing you over there! Second, I'm incredibly excited to share that I will be showing work at the upcoming Counter Balance III at Access Living ! It will be an awesome night of physically integrated dance. If you're in the area on May 18th, I really hope you'll come by and check it out. I'll definitely be performing my solo, Stop, Drop & Roll and showing my group piece, Overwhelming Nuance . I might also get to show my newest piece, I'll Pass , depending on timing. It should be really cool...

Introducing: Crohnicure! The amazing new cure for Crohn's Disease! ...Nope. I can't do it. I can't make up a cure for Crohn's. However I try to write the next sentence of this announcement, it always ends up way too snarky to be made public. The thing is, we aren't even sure what causes Crohn's. Sure, there's a lot of speculation out there, but nothing certain. I know I have a gene that caused mine, but the rate of disease in my family has increased dramatically and we have little clue as to why. We just don't know that much about the disease. And, honestly, I don't care to talk about finding a cure too much. I think I've said this before. There are a lot of people out there devoting time and resources to finding a cure and they're doing a lot better job than I ever could. I feel like my place is to talk about the bodily, emotional and cultural impact of Crohn's. I have something to contribute to that conversation.

When I first read today's prompt  to pick my five ideal dinner guests, my first thought was, "Easy. Tina Fey, Amy Poehler, Maya Rudolph, Kristen Wiig and Melissa McCarthy. Done." While this dinner would be pretty much the highlight of my life, however, my choice does not have a whole lot to do with Crohn's.  So, since this is a blog about Crohn's Disease, let's see if I can find five people that would be a little more relevant to my cause, eh?  I'm keeping Tina Fey, though. She's my number one. She doesn't have a chronic disease that I know of, but I know in my heart of hearts that she's a cool enough lady to be able to chat about poo without blushing. I mean, it's Tina-Freaking-Fey. If you need more explanation than that, you obviously haven't been paying attention and I urge you to read her book while watching a marathon of 30 Rock. Right now. I'll wait. My number two is Robert McRuer , the author of Crip Theory: Cultural...

I'm stepping away from the prompts today to share this video with you all. It was posted on Jezebel  yesterday afternoon. I was not particularly amused. Here it is: **Warning: it does contain language that's a little more coarse than what I normally use on this blog. So... probably NSFW. Just a heads up.** Yep. That just happened. Now, I understand that this young man is joking. I get it. He thinks he's being hilarious. But... the truth is that this is pretty insulting. Both as a woman and as a person with Crohn's. Seriously? Are we that uncomfortable with lady defecation that you have to set standards for how they (we) should act before, during and afterwards? Ridiculous.

A lesson I learned the hard way . I feel like I talk about those a lot on here. Pretty much all the time. Like, I  went back to look at  past posts to link to as examples of this, and almost all of them would work in some way. So, I'm going to choose the one that both took the longest to learn (I still don't think I'm there yet...) and has had the biggest impact on my life. Asking for help. I've written about how complicated this is before, and I was almost certain I'd explained the moment when I finally started to get that it's okay to just ask for help, but I can't seem to find it. So, I guess I'm going to tell you now.  In the summer of 2010, I pretty much bottomed out. It was the worst flare I've ever had. It had been coming on for a while, of course. A really long while. But I ignored all the signs and insisted I would be fine. That I just needed to keep moving forward and eventually I would pull myself together. Obviously, this is n...

We're just past the half-way point of HAWMC! Wow, this month is flying by. So, today I'm sharing a few pins from my Crohnie Stuff  board on Pinterest . Let's just get right to it. First, we've got an old comic from xkcd: Source: xkcd.com via Maggie on Pinterest A while back, the man behind this wonderful comic had a family member that was diagnosed with cancer. He wrote a couple of really fantastic comics about it. This is one of them. I've pinned another one to the same board. I encourage you to check it out. I also encourage you to head over to xkcd and check it out. It will be worth your time, I guarantee it.

Today, I'm talking about my writing process . How do my blog posts get from my head onto the internet? Well, most of the work comes before I actually sit down to write a post. I sometimes spend insane amounts of time thinking about a blog post before it actually ends up here for you all to read. The most recent example of this has been my Why I Named My Colon post. That one had been rolling around in my head since sometime in February. I'm not exactly sure why it took so long to actually write down. I think because it's such a funny thing to talk about, naming an organ, and yet it really had such a profound impact on my life. I wanted to make sure I was talking about it in a way that underscored the importance of this ultimately pretty silly thing that I did. Other times, the reason it takes me so long is because I want to make absolutely sure I'm coming at the subject in the right way. This was the case with my post about pep talks . That post could have so easily b...

I think I've exposed more of my nerd credentials in the past week than I have in the entire time I've had this blog. I think you're about to get a real grasp on exactly how nerdy I am, though. Get ready. If I got to construct  my dream day , I would be in Florence for a conference on disability in dance. Why in Florence? Because it's my favorite place in the world. Does it make sense? Not really, but dreams don't have to make sense. Just go with it. Anyway, I wake up early in a super comfy bed in a beautiful hotel room in Florence. I take a hot shower and get dressed in my favorite outfit, then head down to a little cafe and sit in a piazza as I sip espresso (because Myrtle's feeling well enough to handle the caffeine) and eat a croissant.

Missed another day... darn it. I'll definitely write at least one extra post one of these days. And I can't miss anymore! I've now used my two free days. But, anyway... back to this post. What are the ten things I can not live without? Let's find out. (Note: I'm not including obvious things like food, water, etc. I'm also sticking to "things." Friends and family would, of course, be at the top of my list. Also, my doctor would be on there somewhere.) 1) Humira   This one's pretty literal. I must have my Humira in order to keep living my life. The thing is, though, that in order to keep the medication at its proper temperature, I also need a refrigerator. I'm going to choose to ignore that fact, though, because I want my ten things to be more interesting than "refrigerator."  2) My Computer  I don't do very well without a computer. It's a little sad how dependent on it I am, actually. I'm very attached to my com...

Today, Myrtle gets a theme song . This is super fun for me, because I'm constantly narrating my life in song. It's a family thing. My family and I (especially my brother... The resemblance is uncanny) are pretty much like Marshall from How I Met Your Mother: So, a theme song for Myrtle. First we need a style, but there are so many options! A catchy pop tune? Something more angsty? Perhaps a polka or a jig? Nah, without a doubt, Myrtle gets a big musical number. The poor girl works hard, she deserves a chorus to back her up. I'm thinking it will start as an intense solo, Myrtle alone under the spotlight as a lone voice in the distance sings things like: Myrtle was a shy lass, Kept to herself. Digested food day in, day out Then pushed it out of Maggie's ass.* Suddenly, drama! That pesky immune system shows up and starts causing trouble for our heroine. Bum bum bum... Poor Myrtle fell victim To the immune system bully. It snuck up on he...

Dear 16 Year Old Maggie, Here's what I want to say to you... I know you think you've got it all figured out right now. You're going to go to college for Musical Theater. You're going to move to New York. You're going to be the next Bob Fosse . You've got  the biography and the bowler hat to guide you. You're ready. I know. You have everything figured out. You love having everything figured out. I get it. I love it too. The thing you don't realize yet is that things change. You change. And here's what you have to keep in mind: it really is okay not to have it all figured out. This is not an easy concept. I'm still having a really hard time with it, but it's true, okay? Trust me.

Today's prompt  is to make your own "Keep Calm" poster.  I thought for a while about what I wanted to put on mine. Honestly, I think it's pretty hard to do better than "Keep Calm and Carry On." Seriously. It's catchy and it's to the point. Perfect. I considered the raunchy options: Keep Calm and Keep Pooping, Keep Calm and Break Wind. I considered the needy: Keep Calm and Call Mom (I mostly really love that this one kind of rhymes.) Eventually, though I ended up with this : That pretty much sums it up. Just do your best. I think this is all any of us, chronic disease or not, can expect out of ourselves. It's something I'm trying really hard to keep in mind. Just do your best. That's it. Oh, and have you guessed what my favorite color is yet? What would your "Keep Calm" poster say? Make one! Share it in the comments! I would love to see it!

The best conversation I had this week, huh?  Well, that's pretty easy. On Monday I got to hang out with a former professor from my first school (Cottey College, what up?!). We spent a long time just catching up, but we also talked about Crohn's for a while. Well, I talked a lot. It wasn't until after I left that I realized I had rambled on for a really long time. Probably longer than absolutely necessary. Certainly longer than I usually do. Anyway, the interesting thing about this particular conversation was that we originally met not too long after I was diagnosed. She knew I had Crohn's, but we never really talked about it. Actually, we never talked about it at all. I think the most communicating I ever did was to send her an email or two when I was too sick to make it out of my dorm room. I never applied for disability with the school or anything. I was so uncomfortable with the whole idea of having a chronic disease back then... I pretty much refused to deal with ...

I've started to write this particular post several times in the last couple months, and today is health activist's choice for HAWMC, which means I get to write about whatever I want. So, I figure now's the time to get it out there. I've written several times about how I named my colon, but I never really specified why, and I think that's pretty important. The truth is that I didn't even know why I was doing it at first. I was going through a really rough flare and reading Are You My Guru: How Medicine, Medication & Madonna Saved My Life   by Wendy Shanker  (which you should totally pick up). I had read a review of the book on Feministing.com and it sounded really interesting, so I bought it on Amazon. At one point, Wendy visits some sort of non-western medicine practitioner (I can't remember the proper terminology, it was a while ago...) and is asked whether she's named her liver, the organ that was causing the most trouble for her at the time...

Okay, before we get down to it, I want you to know that I am not a poet, nor have I ever claimed to be a poet. Please don't expect too much. Here we go... Go about my day, all is well. *Grumble, grumble* Uh-oh... run like hell When I tell you I have Crohn's, please don't panic. Just listen to my tale. I may not appear sick, it's true. But my ailment's invisible, dude. There. I hope you enjoyed that, because you probably won't ever see me write a poem again. Have a great weekend, everyone!

I know, I missed yesterday. I'm sorry. But it does say in the rules that we have two free days and I had a good reason, I promise. Maybe one of these days I'll write two to make up for it. So, back to writing. I'm going to use yesterday's prompt because I kind of love it and I've got something to say about it. The question is: Why? Why do I feel the need to write my story? And my answer boils down to one simple answer. Because it's important for these stories to be told. It's important that there's some information out there about the day-to-day activity of living with illness. Often, when we talk about disease, we focus on research and cures and treatments. While I understand, support, and engage in these conversations, I'm far more interested in sharing experiences. I'm interested in the community that can form out of those shared experiences. I'm interested in the change that these communities and their stories can make within a large...

I have to admit, I was a little stumped after reading today's prompt over on the WEGO Health Blog. A super power? How am I supposed to come up with a super power that would be relevant to Crohn's Disease? So, I threw on this song... ...and got to thinking.  You know, I think crohnies develop a few "super powers" as a necessity of living with this disease. For instance, the ability to always know where the closest, cleanest, and/or nicest bathrooms are from wherever we happen to be. When I was in school, I could tell you exactly which bathroom was closest to me at all times, but I could also identify the nicest bathrooms on campus. So, if it was an emergency I had a plan, but if I had a little time, I could go to one of the nicer commodes. I would call that a super power. It was certainly useful. Also, the ability to keep a sense of humor in the midst of lots of pain. This is not a small thing.  But the question is if I could have my own super po...

I've been thinking about this a lot recently. How, in my life, there are a series of identifiable moments when someone said something and it opened up the world in an entirely new way. These are often called "aha moments" in the feminist community. I've had a lot of these moments. Not all of them have been these incredible moments of clarity that allow me to better identify and speak about the injustices of the world, many of them have been much more personal. Instead of these sweeping realizations, they are slight awakenings. This does not mean that they have had a smaller impact, however. In fact, I think these  moments, more than the grand moments, change the way I live my everyday life. I've had a few of these moments in relation to Crohn's, and I know I'm bending the prompt (to pick a quote and write about it) a little bit here, but I'm having a hard time choosing which of these moments was more important to developing my understanding of what...

This month, I'm participating in WEGO Health's Health Activist Writer's Month Challenge , which means that, if all goes as planned, I'll be posting every day for the month of April. WEGO provides prompts and I write. I'm pretty excited to see what happens and also to check out the other bloggers taking the challenge. If you're interested in reading other blogger's posts (and I encourage it!) there are a couple different ways to go about it. Either search #HAWMC on Twitter or check out their Facebook page for links to a whole bunch of wonderful health activists' blogs. I will also try to link to any posts I really love right here in my posts, and I will, of course, be facebooking / tweeting /google +ing (is that a thing? Is it just +ing? +1ing?) throughout the month. So, without further ado, here goes the Crohn's Chronicles HAWMC 2012! Enjoy! The prompt for today is to construct a time capsule that could eventually tell the story of my life with...