You gotta get with my fears.
Here are my top 10 theories on why I have Crohn's (are not mutually exclusive):
1. Genetics. My sister and I both have IBD, and it's my top risk on 23andme.*
2. I didn't regularly eat fruits or vegetables until I was 20, and by then I couldn't digest them
3. Bactine habit. The 1980s were defined for me by daily bathing of my hands in the mild topical antiseptic, while wearing a sparkly black jacket and watching "Billie Jean's Not My Lover" on MTV
4. My co-worker listening to all her voicemails on speakerphone, with office door open, then going to talk to multiple nearby co-workers about said voicemails
5. Refrigerator hypothesis. Not the popular scientific one, just the fact that most of the foods that make me feel crappy come from my refrigerator.
6. That time I ate an entire Keebler ready-made graham cracker pie crust in one sitting**
7. Those other dozen times I did that
*also have significantly increased odds of addiction to heroin, which will make sense when you read this post
But I'm trying not to dwell on the past. I do, however, often dwell on the future. I call this "planning." Some of my former doctors attempt to treat this planning as an illness along with my IBD.
I've had them giggle about me with their nurses, condescendingly pat my arm and say, "Let's take one thing at a time, OK?" I've had them roll their eyes at my questions, half-listening while they type up the required patient notes in the computer system.
Some of my questions:
What if I get sick while I'm abroad on a rural island with no hospitals?
Just go, and take lots of pictures! Maybe you'll get sicker and maybe you won't!
(I got sicker, and stayed sicker.)
I actually had another question.
(hand on doorknob, swinging head back breathily) Yeah?
What if I fail this medication -- what will we try next?
Well, let's just focus on this right now and we'll address that later (condescending smirk and arm pat).
What if my labs do come back with positive results for inflammation?
I like to address what we have on our plate now.
Well, I don't. And I hate myself a little for going into Good Little Patient Mode, agreeing and mildly scolding myself and laughing along at how kooky and out of hand I am for asking questions to prepare myself, and how I'm keeping them from squashing 3 appointments into 30 minutes.
I'm done with that. If you give your opinion on which drug to try, and I ask for alternative options, you'd better have some (because they obviously exist, whether you think they'll work or not). And if I want to prepare myself for the possibility of having to go on an experimental drug (which I have faced before), I'd like to know that before whatever Tuesday I happen to walk into your office one random day.
Sometimes it takes 10 doctors to find this. Sometimes you think you're with a great doctor, then the relationship sours and she stops returning your calls. Sometimes you're in a small town and there's actually no one else to see but them, or you're in a big city but you've been through every GI practice only to settle with a "meh" doctor. But don't give up on believing that it should be better than that, that you deserve better.
I was 80 percent done with this really cool and fun-to-write craft-project/engineering blog post, with tons of photos and step-by-step instructions. You came so close to seeing it in this space, instead of the post you're reading now. And then, something key to the idea didn't work, and the whole idea went to hell.
Trying to find some sort of something to post here, I looked in my files for half-completed abandoned posts that I didn't publish at an earlier time for whatever reason. But then I realized they're really more for the winter holidays. And I should save them, because I'm sure I'll need them then, too, because I always get sick around the holidays.
And then, before I knew it, I found myself Googling how to treat all the bacteria and fungi that are apparently causing Crohn's this whole time and we didn't know about it till the Internet shouted in our faces about it a week or so ago.
I'm trying to post things about cool tricks and inventions to get excited about if you have Crohn's. But in reality, I'm pretty discouraged. I know my Crohn's is flaring harder and harder by the day, and I'm going to have to switch to a newer and scarier medication(s) really soon. I'm about to fly across the country to get a second opinion about which one(s) to try first, and I'm realizing I'm scared about how high I've pinned my hopes onto this doctor I've never met, this doctor I heard interviewed on NPR and seemed so authoritative and reassuring.
That's nice that it's preliminary and may one day lead to possible treatments for Crohn's, but I may one day punch you in the face. Some of us need something today. So shut up till you've got it.
It makes me angry when I see these headlines about the "cause of Crohn's found," because I just know I'm gonna go to the doctor with a list of the antibiotics and antifungals that these microbes are sensitive to, and ask, "Can't we just throw the whole medicine cabinet at these f***ers all at once?" That's nice that the scientists are cautioning that this is only a preliminary indication that may one day lead to possible treatments for Crohn's, but I may one day punch you in the face. Some of us need something today. So shut up till you've got it.
If I'm being honest, I haven't even read the study, or even an entire article about it. Why am I writing about an article I have not fully read? It reminds me of Amy Schumer's excellent account (in her fantastic book, "The Girl with the Lower Back Tattoo") of her dad being afraid to hope that innovative stem cell therapy would help control or reverse his MS. About your cause or your cure -- I don't want to read it till it's done. I don't want to see the "CROHN'S WAR OVER!" headline until it's for real, if Crohn's actually just got elected president.
I don't want to see the "CROHN'S WAR OVER!" headline until it's for real, if Crohn's actually just got elected president.
And me having to shelve my cool post just hit me harder because it's reminiscent of all the other cool things I've had to shelve, because I'm sick -- going on overseas trips, running 5Ks, going on life-changing nature hikes, starting school, eating desserts, drinking beer, joining the Peace Corps, joining the military, pregnancy, home-buying, paying off credit cards, sailing in a regatta, becoming an astronaut. I'll admit, one or two of those things I actually don't care about doing and I just threw them in there to throw you off. I'll let you guess which ones (hint: I actually am really pissed about not getting to be an astronaut).
But what I also have to admit is that I'm not the only one who has it hard. I'm not alone, and things do usually get better. And even when they don't, I'm capable of still being happy -- really happy. Except for when I'm trying to shove a green blob into the back of a sedan (I'm keeping that story under wraps, because I know that, eventually, I will finish that really cool post I had planned for today).
No post for September; see you next month!
USA swimmer Kathleen Baker won a silver medal at the 2016 Rio Olympics, and she has Crohn’s! Baker is the latest but not the first athlete with IBD to achieve something huge, and she sweetly wants to lift others up in her celebration of it. I got swept up in happiness and excitement for her after she tweeted this:
“Crohn's disease is a big part of my life. I hope to inspire others to never let something limit their goals!” @KathleenBaker2
Yeah! … And then I started to think about my goals. Past and present.
Bear in mind Baker didn’t say don’t let Crohn’s make you give up on your goals. She said don’t even limit them – does that mean no pausing, scaling back, modifying? This is just a tweet, to be fair -- one quick little message -- and an excitement-fueled one, and I’m not saying she meant it this way at all or she should’ve thought before she tweeted. No, this was her moment and she was within her rights to hope to inspire this. But that doesn’t mean it makes others like me – people with IBD who haven’t ever able been able to get nearly so healthy – feel very victorious.
It’s not the first time I’ve become annoyed at someone with better Crohn’s-treatment luck, or more resources to handle their Crohn’s in a different way than I can. Recent college grads living off family wealth so they can sleep, go to the gym, and work on their true passion of oil-painting. Lucrative career-havers who can afford a personal chef, a trainer, and a fancy electric Japanese toilet. People with very mild Crohn’s who are off all medications, feel no symptoms, and are doing CrossFit every day. Just people who’ve found a med that works and get to eat biscuits sometimes. Awesome. That’s just awesome for you. Now can I go back to what I was doing? Because I was napping on my couch.
Awesome. That’s just awesome for you. Now can I go back to what I was doing? Because I was napping on my couch. ... Should I not be napping on my couch?
Should I not be napping on my couch? Maybe if I had her diet, her doctors, her exercise regimen, I could just be her – without the swimming talent, but with some of that health and vigor. Why didn’t that article say what drugs she’s taking and what she’s eating? Why do they never say what drugs these IBD superstar people are taking?!
I used to let nothing stand in the way of my goals, and boy did the world love it. No one wants to hear how you encubicle yourself every day because you never know when you’ll need an MRI or a major surgery. That will not win you any chronic-disease-survivor scholarships. Neither will stating how left to your own devices you would sleep 11 hours every night and never, ever accept social engagements on weeknights.
I ended up sicker than some of the people I came to help, showing that I should’ve followed airplane-safety-card rules and secured my oxygen mask before helping others.
I won a sizable and much-needed scholarship by describing how I went to a remote island with no health care or fresh food for an entire summer, soon after recovering from a major surgery, so I could tangentially maybe someday help the health of other people. (I ended up sicker than some of the people I came to help, showing that I should’ve followed airplane-safety-card rules and secured my oxygen mask before helping others.) In grad school, instead of resting on the weekends, or settling for a B or (gasp!) a C in biostatistics, I sometimes skipped sleep entirely just to maximize my success and prove to everyone and myself that my Crohn’s had NO effect on my goals whatsoever. I must join all the clubs. I must co-author all the papers. I must attend class every day and never request a delay on an assignment. Sleep is for people who earn it. My body is just a vessel for goals achievement, and I’ll ride it into the ground like a throwaway horse in an old Western if I have to.
My body is just a vessel for goals achievement, and I’ll ride it into the ground like a throwaway horse in an old Western if I have to.
One of my recommenders submitted a letter about how she had worked closely with me for a year but didn’t even know I had IBD until I requested this letter, because I had achieved so much without ever asking for special treatment. This was seen as a big plus – she doesn’t bother anyone with her petty little health issues, not so much as a sick day. What employer wants to be bothered with their employees’ humanity? Blech.
If you are truly taking care of yourself and still able to achieve difficult goals, then by all means, do so. And that seems like what Kathleen Baker is doing – and why wouldn’t she? She’s on a treatment plan that’s working for now, and hopefully it keeps working. But not everyone is that lucky, which means we may give up on personal goals, modify them, or push ourselves too hard at the expense of our health.
I’m not a sucker or slugabed or quitter because I sleep, and limit, and even quit sometimes. Is what I keep telling myself.
I actually am really happy for Kathleen Baker and everything she’s achieved, and even got a little verklempt about her medal-winning finish. It does fill me with hope and pride when I see an IBDer achieve something big and bring a little more prominence to the disease. Plus, I’m a sucker for the Olympics, and even the silly conventions of NBC’s broadcast of it.
But I’m jealous, and stubborn. I want to be Olympically healthy, while also not limiting my other big goals. But I’m not a sucker or slugabed or quitter because I sleep, and limit, and even quit sometimes ... is what I keep telling myself, feeling the punishing urge to pull on my sneakers and run till I’m too tired to think about my limited, paused or abandoned goals any more.