I initially wrote this post last week, sitting on the couch with an alcohol swab in one hand and a syringe filled with Stelara in the other. I’d had a few tough days in a row — both with my health and in dealing with my doctor’s office — and was due for my first at-home injection of Stelara (my second dose overall).
Now, a week later, I’m doing OK. I haven’t seen consistent improvement with my health, which is tough, but I do have good hours and bad hours. For the most part, my days (and nights) are still full of discomfort and urgent bathroom runs. I’m still not living my life to the extent I want, but I tend to get a few good hours in the late afternoon some days, and I bask in those. They make me feel hopeful.
This flare has officially been going on for four months now. What I thought would be a little blip in my marathon training schedule turned into a full-blown, I-don’t-know-what-to-do-anymore kind of situation.
My doctor is hopeful the Stelara will help. Since it’s similar to the study drug I was on — and with which I found great, healthful success! — we anticipate it getting me into remission, or at least to a place where this flare isn’t quite so affecting.
My first infusion was six weeks ago, and the doctor said to give it 6–8 weeks to start working. So far, nothing super promising, but any day now! In the meantime, here are a few things on my mind…
I never really got into the holiday spirit. Every time I tried to go run errands or go shopping, I either had to come right back inside or I spent the entire shopping trip in the Target bathroom (which, ugh, is all the way in the back corner of the store — very far away from my favorite home decor section). Seeing Brian’s family and my family was wonderful, but the Crohn’s cloud was hanging over me the whole time.
I feel like a terrible dog mom. When I was feeling “normal,” Ellie and I walked at least three miles every day, and it was the best part of my day. I can’t do that now. So she either goes to daycare to get all her energy out, or I just try to throw the ball around inside and right outside the apartment as much as possible. I know she’s getting enough exercise, but I still feel guilty for not being good enough for her right now.
Working from home is both a blessing and a curse during Crohn’s flares. I’m so grateful to work from home most days because of the unpredictability of my stomach and my need to be near a bathroom at all times. That is a wonderful, lucky thing. But it also starts to feel incredibly isolating. Before the holidays, I found myself feeling lonely. I haven’t been partaking in any of my usual activities that get me out of the house — working out, going to events, seeing friends, generally being social — so it’s just me, all day, every day. Ellie is a phenomenal companion, and having her around does help, but this disease gets me feeling a little lonely.
Sometimes when I see healthy runners breeze past my window, I feel resentment. I know that’s not healthy, and I try not to feel that way. I know. But it’s hard sometimes. We of course don’t know every person’s story, but from the inside looking out at the world, every runner I see looks happy and healthy and carefree. None of them look like they’re possibly pooping their pants or coming out from behind a bush or about to bolt into the ferry terminal restroom. Is that the case for every runner? Probably not! But there are a few neighborhood runners I see out there every single day, and they just make it look like NBD.
Similarly, when I hear healthy runners complaining, I seethe. I’ve said this a million times, but unless you are a professional athlete, you don’t have to run today. You get to run today. Don’t complain about the weather. If it’s too cold, run on the treadmill. If you don’t have access to a treadmill, do something else! I know complaining is normal. I know oftentimes people are just venting or being silly. But as someone who has been mostly off the roads for the past four months, I would love to get to run today. And complaining about not being able to run because you over-trained and now you have a stress fracture? That’s not the same as being unable to run because you have a chronic illness. Injuries suck, absolutely, especially if it was out of your control. But if you had lingering pain and ran through it, or you refused to take days off and now you’re hurt? It’s hard for me to sympathize with that.
But YAY, I have run a few times lately! Part of the beauty of working from home is that when that good hour kicks in — usually around 2 PM — I can take advantage of it and attempt to get outside. It takes a lot to get me out the door, and it doesn’t always happen, but I try every single day. Sometimes “trying” means I only get as far as telling myself I *should* run. Other days, it means I get dressed but never get outside. Some days, I get outside but immediately have to come back in and am then too discouraged to try again. But then there are days — even if they’re rare — that I actually get outside and get as far as putting one foot in front of the other for a few minutes.
I’ve run the 3.1-mile loop to the track and back a few times in the past month, and even though the runs always include multiple bathroom stops and walk breaks — and even though sometimes I get super frustrated and discouraged by all that — it feels so good afterward, and I’m always glad I did my best. My best right now is slow and feels a little awkward, but that’s just where I’m at. And that’s OK.
Otherwise, most days I’m completely exhausted by 9 AM. I’m up a lot during the night using the bathroom. I’m not getting consistent, solid sleep, which adds up. Then, when I go through the very simple process of starting my day — showering, taking Ellie out, getting her breakfast, starting to get work done — I feel totally beat down. When I’m sick, little things require a bigger effort. It’s draining. (If you’ve never read the Spoon Theory, I highly recommend it. It’s so good, and I relate to it so much.)
I hate showering because that’s when my hair falls out. I usually love long, hot, karaoke-style showers. But during a flare, a lot of my hair tends to fall out, particularly when I shower — like handfuls of hair at a time. I used to have very thick, lovely hair, and now it’s just kind of stringy and sad.
I am so tired of being in the bathroom. I am so tired of over-thinking every single thing I do. I’m tired of leaving ridiculously early to get to things so I can allow for bathroom stops along the way, and I’m tired of constantly Googling things like “Target Edgewater NJ bathroom hours closed for cleaning.” It’s just exhausting.
I know I could try harder. I know I could do more. But sometimes I just don’t want to. I complain about not being able to run. Some days, that’s enough to motivate me to at least try. Other days, I just don’t have it in me to try. It’s hard to get out the door when you know you’re going to have to make bathroom breaks every few minutes. I could go to the gym and lift weights — I could even do planks and push-ups and stuff in the comfort of my own home! But for the most part, I don’t. (Though I did do a few glute bridges the other day and I’m still sore. Holy cow.) Some days the motivation comes easily, but other days it’s just not there.
Right now, I just want everything to feel easier. I don’t mean I want life to be easy. I don’t expect that. I like working hard! But I want everyday things to feel easier than they do right now. I want walking outside to be easy. I want going grocery shopping to be easy. I want walking 10 blocks in Manhattan to feel easy, so I don’t have to take a cab. I just want a little ease.
This all just came across as pretty negative, huh? Before the holidays, I was feeling pretty bummed. Now, in the midst of it all, I’m doing OK.
Some days, even if I don’t feel great, I maintain a pretty solid perspective with this whole ordeal. Last night, Ellie slept nuzzled up next to me the entire night, and I was so, so happy, even though my intestines felt like they were throbbing. This morning, I got up to go to the bathroom, and when I came back to bed, she scooted over and rested her little head on my heart and fell back asleep. It’s not all doom and gloom over here — pinky promise.
I’m feeling confident that this medicine will work, and that 2017 will bring good health my way.
Oh, and just like three years ago, I did eventually suck it up and give myself that shot of Stelara last week. (Still got it! I’m basically a doctor by now.) Just like three years ago, I started crying as soon as it was over — for no reason at all — and just like three years ago, I’m dreading having to do it again, even though it was relatively painless and simple.
The only difference? Hopefully, unlike three years ago, this medicine actually works.
And I won’t call it a comeback until I’m absolutely positively sure.
SOOOO WHAT’S NEW WITH YOU? Tell me something good!