After a lot of thought, I’ve decided to put my column on hiatus for a while. There’s a lot going on for me right now health-wise and otherwise, and I’d like to take a break to catch up and explore other projects. I’m so grateful to the readers who have reached out and provided me with feedback over these three years, or just read silently without me knowing, which is probably what I'd have done.
It’s been a great experience, and I may come back to posting here at some point. Many thanks to CCF, especially Mary and Christine! And FYI, I’ll still be @katiefmclendon, re-tweeting late-breaking high-priority news on topics like Halloween in Japan and dogs falling between sofas.
In the meantime, don’t let anyone belittle your disease experience, including mocking your diet in lazy unfunny ways. It’s good to be able to laugh about your own illness sometimes, but only when YOU think it’s funny. Otherwise, it’s the joking equivalent of being told to “smile!”
Take care and be as well as you can be, while still being happy and not driving yourself crazy. Happiness/contentment/fulfillment and health are inter-related but NOT completely dependent on one another, thank god. You do not need the miracle cure, or need to listen when others evangelize about them, and also you don’t have to do everything other people do to prove that you’re “OK” or “never limiting your goals.”
That being said, you don't have to live a smaller life because you're sick. There are hacks and serendipity and virtual networks and just alternative ways for you to get a version of what you want, without you having to quit your day job and your health insurance. (You can also do it the hard way and just power through and sacrifice your health, which I did for years. I don't recommend it, but it is up to you. Hint: I instead recommend heavily utilizing the internet.)
And at that day job, when you're feeling up for it, you can fight to make things better for yourself. Fight for telework, alternative work schedules, or whatever you need at work, and recruit others to help fight with you--you are often secretly surrounded by sick people. And when you're truly too tired to fight, take a break, TAKE A SICK DAY, take a nap, take a Netflix.
Fight for a doctor who respects you and cares about you, who can stand to be questioned but also has the patience to professionally argue with you when she thinks she's right. And this isn't a necessity by any means, but it's never a bad sign if you ever burst into tears in front of your doctor and she (or he) gets visibly verklempt, too.
You do NOT have to sacrifice everything else in your life (including your social life, your energy, your paycheck) to be healthy, or to come off your IBD meds to finally prove to yourself that you're not "broken," that you can be "normal." But it's also reasonable to try to a point; everyone's IBD is different. You don’t owe anything to anyone (including yourself) besides doing what you think is right for your life.
You don't need to follow any of this advice on this blog, basically, or anyone else's, if it doesn't feel right to you. Take care!
It's extremely rare to get serious, deep December snow in Atlanta, and even rarer for the power to stay on (though many aren't as lucky as we are). Hope you're getting a chance to enjoy some snow, to comfortably enjoy the warm indoors, and feel comfortable telling relatives to back off of your holiday food choices. See you in 2018!
I’d wince as the home health nurse pinched my belly, before she even jabbed the needle into the skin, and before the real pain—the Cimzia medication being pushed in by the syringe plunger—began. Her Southern accent was soothing, but she would come up with distraction techniques I wasn’t the biggest fan of:
“You’re on a beach, sipping a strawberry daiquiri.”
I prefer pina coladas.
“You’re looking at the face of the best-lookin’ guy you’ve ever seen.”
Not sure how that’s supposed to be meditative. It did distract me, but in an irritating way that wasn’t within my control, and so I felt the pain just as strongly, plus a quiet rage.
But it was fine. She was the one doing the injection, and so I just had to get through it, cloying cocktails and all.
But then one day, metro Atlanta flooded. In a way people had never seen; people couldn’t get out of their neighborhoods. Others were navigating the Krog Street tunnel by kayak, which was the only part of this crazy flood that made me really jealous. For days, no one could go anywhere—including my home health nurse, when my injection was due.
I was flaring already, and so being a week late with my injection made me really anxious. I already had the syringes; all I had to do was … purposely injure my own body and mechanically shove a foreign liquid into it. NBD. The home health nurse said she’d even talk me through the steps over the phone, although I already knew them by heart, having watched her do it dozens of times. So I gathered my alcohol wipes, nitrile gloves, sharps container and courage together, and … chickened out. The nurse came three days later.
I started hating myself for my cowardice. I know I CAN do it, so why WON’T I? Later, when I was much sicker, I was put on a high dose of prednisone in addition to my Cimzia. Somehow, the prednisone gave me the most badass, f&*%-it attitude ever, which directly led to me being able to inject the medication myself like it was nothing. The same nurse came and trained me to do it myself. It hurt like a wasp attack, but it was fast and over and easy.
Then, I had a major surgery, to remove 10 centimeters of intestine. The surgery wrecked me emotionally. I had had to defer starting grad school for it, so I had nothing to do during my recovery but watch Roseanne reruns and weep in my pajamas, which I had also worn the day before. Suddenly, I was filled with injection anxiety again. I can’t do this; it’s too important! If I do it wrong, my medication won’t work, and the surgery will have been pointless! I need my nurse back!
The same nurse came back, concerned that I’d somehow regressed, hoping to re-teach some skill that might’ve fallen out of my head from the anesthesia. I insisted that things had changed and I just couldn’t do it any more.
Eventually, I got switched to Humira, and was forced onto the auto-injector pen, which comes with zero nurse assistance. I had to do it by myself. I had to admit it was very easy, but it was also extremely painful. Nothing could distract me from the pain of 10,000 wasps burrowing into my skin butt-first to lay their liquidy eggs under my flesh. All within about 6 seconds.
Then, I got a refill of the Humira, and forgot to remind them to give me the auto-injector pen, NOT the prefilled syringes. A cooler of 6 very expensive syringes shows up on my doorstep. My mind cannot find a way to justify not just doing it my own damn self.
It was a really big deal at first. I required a church-like reverence for the conditions I required in my home before I injected. Now, I could be sitting on a bed that someone is jumping up and down on, carrying on a conversation, and still inject it. How did I get here? My best tips:
Watch TV. Something fast-paced and dialogue-heavy and breezy, but interesting enough that you can get a little engrossed in it. I use Grey’s Anatomy. It’s very tempting to make the whole experience almost a dogmatic religious one—nothing else can be happening! The whole house needs to shut down so I can do this one thing! It’s as if there’s a home birth going on and we all need to pray and light candles. This is the opposite of what you want; you want distraction. You want it to feel casual and routine, and you have to fake it until you make it. Singing along to a song also works, but I prefer the passivity of TV-viewing. Just don't pick something that requires a lot of concentration.
YOU have to do it. This is hard to do once it’s already been a big deal, but that’s the mindset you have to have. It needs to be something casual that can be done while carrying on a conversation, while watching TV. You may think it’s better to not have control over it, but it really isn’t. It’s better if it’s something you’re doing to yourself, and will be better for all your relationships. Unless this is a parent doing this for a child, it's not really fair to cast your partner as the jerk who assaults you with a sharp object twice a month.
Slowly. Veeeeery slowly. It’s the speed of the med going in that is often the biggest pain-inducer. First, jab the needle in and leave it there (unless it’s an auto-injector. If you're on an auto-injector and you hate it, then switch to a regular syringe. Auto-injectors are painful no matter what, because they’re so fast. But TV can still help somewhat.). Once the needle is in place, veeeeery slowly start pushing down on the syringe plunger, one little step at a time. If you start to feel pain, back off for a minute till the pain goes away and watch TV for a few seconds, then right back to it, but very, very slowly. If you have control over it, and do it very slowly, this takes care of the vast majority of the intense pain.
Online videos: If you get overwhelmed when someone is trying to teach you something in real time (I’m a slow learner, likely due to the anxiety of worrying I’m learning a skill too slowly and thus embarrassing myself). But online demo videos take that pressure away.
Other tricks: I haven’t tried ice, but I’ve heard from others that they got mediocre results with this. Maybe pinching yourself in another part of your body would help. But honestly, this all sounds like ways to make a bigger deal out of it, which could backfire. But if it works for you, you should of course keep doing it. If envisioning strawberry daiquiris and attractive people works for you--or if drinking strawberry daiquiris works for you--who am I to say to stop?
It’s OK to backslide. It’s OK to be thrown by major life events and need to regain a schema for injecting. Just set a deadline for yourself for where you’ll try to do it yourself again. Hating yourself over it will only make you more anxious.
Halloween is my absolute favorite. But my absolute favorite things often cause Crohn's trouble, because I throw myself into doing them to the extreme, at the expense of sleep, eating well, and just general calm and self-care. I'm really trying not to do that this year, trying to actually follow the total of 12 tips I've come up with in past Octobers to having a healthier Halloween while haunted by Crohn's. May your IBD be a wispy spirit appearing faintly in the background and only in Polaroids, and not a mean-faced devil doll that won't stay in the garbage can no matter what you do.
Also, go see the movie IT. And if you haven't seen it before, please go rent and watch 1408. These are just general life tips.
5 tips for making a Halloween with IBD spooky, but not scary
7 tricks to making IBD less scary