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An Update on the Crohn's Situation + Things I'm Loving Right Now
(Remember The Situation? What’s he up to?)
Hello hello hello and Happy Tuesday!
That, my friends, is a touch of forced enthusiasm. The reality is, I’m having a bit of a tough time right now. This Crohn’s flare isn’t letting up even a little bit, and while, I know, that’s old news and I’ve done my fair share of complaining about how this disease roughs me up physically and emotionally, it’s kind of all I can think about right now.
Brian and I were in Rhode Island for a few hours this weekend. We drove up Friday for his cousin’s high school graduation ceremony, and there was so much traffic that we missed the ceremony entirely (fail!). Beyond the traffic, the ride was a struggle for me. I was so uncomfortable and so anxious about traveling, and definitely had to have Brian pull over so I could use various rest stops and a rogue porta-potty on the side of the road. Crohn’s disease is very glamorous!
So that’s where I’m at.
When this flare started two-ish months ago, it wasn’t the worst. It never is at first. I was in the bathroom a lot and was bleeding quite a bit, but I wasn’t in pain and wasn’t experiencing too many other side effects that can come with flares.
Now, I’m in the bathroom a lot more (though there’s less blood), and I’m in pain a lot of the time (stomach cramping and discomfort mostly). I’m also feeling the exhaustion and fatigue — the kind you can feel in every muscle of your body. I’m getting an OK amount of sleep, but am still tired all the time. (I sleep great on nights I take an Ambien, and sleep terribly — tossing and turning and bathrooming and generally being uncomfortable — on nights I don’t.)
My scalp psoriasis is flaring up, but I’m not experiencing many other side effects, which is nice. No fevers, no night sweats, no dramatic hair loss. It’s contained to needing a bathroom round-the-clock, so that’s an upside, even if it doesn’t always seem that way.
As always, it’s tough having no idea where I am with this flare. It might get worse, it might wind down soon — I have no clue, and I haaaate that.
This morning I was thinking about how my last run was one week ago — until I realized that was actually two weeks ago. Time flies when you’re in the bathroom all the time! I haven’t been doing much physical activity at all, and haven’t even tried to run in a while.
I’ve skipped out on two races I was registered for (the Mini 10K and the Harlem Mile), and while opting out of the races was the right move, it’s still frustrating when your body holds you back from things you’re otherwise motivated to be doing. I went to a spin class last week, but otherwise I’ve been physically inactive. On the one hand, yay rest! Rest will heal me! Maybe! On the other hand, I’m feeling a little stir crazy and could probably use some fresh air.
My outlook when it comes to exercise during a flare is that I do whatever will best serve me mentally. Yes, physically there are benefits to working out and being active, of course. But the bigger thing I take into consideration is the potential emotional gain or detriment: If I know I can get to a class or through a workout stress-free, I will go for it. But if it’s going to cause me anxiety or unease, I’ll opt out.
For example: About a month and a half ago, I convinced myself to go to Lyons Den for a morning yoga class. Mornings are not good for me, and I know that. My stomach is at its worst in the morning. But I had a jam-packed day (I was interviewing Natalie Morales later on!), so if I wanted to get a little sweaty, this was my only opportunity. I got myself out the door and onto the downtown ferry. And I will spare you the details, but I will say that it did not go well.
I haven’t been on the downtown ferry since then.
Similarly, after a tragic-to-me experience on the run two weeks ago, I haven’t tried running again. I know it’s probably more mental than physical in those cases, but I just don’t want to put myself back in those situations. They are, for lack of a less dramatic word, triggering for me. I see that downtown ferry now and I feel anxious and my stomach immediately goes into overdrive.
It’s always hard seeing other people do what I want to be doing or used to be doing. I miss waking up early and running as the sun rises. It sucks not being able to do that, and it’s hard watching my friends keep doing those things without me. But that’s life with a chronic illness. I’d love to say I’m cool with it, and that scrolling through social media no longer upsets me, but it does. Not in a resentful way, just in a bummed out kinda way.
Meanwhile, I am trying to figure out what to do about my diet. Cutting dairy has helped, but beyond that I am debating which lifestyle changes I can make that will be most effective in helping calm this flare (and in the long run). There are so many theories out there about which lifestyles work best for someone with Crohn’s disease — SCD! Low-FODMAP! Paleo! Grain free! Gluten free! Vegan! — and I’m open to anything.
Right now it feels like nothing digests well and everything goes right through me and makes my stomach hurt, so I need to do some playing around. (Things I love: definitive answers and solutions. Things I hate: experiments.)
One day at a time…
In the spirit of forcing a bit of positivity on myself — and the world! — here are a few things I’m loving right now.
Big Little Lies: I loved it. I know I mentioned this already, but I watched the series while I was in Las Vegas, and it was so good. I want to be Bonnie, but let’s be real, I skew much closer to Madeline. The music on the show was excellent, and I both do and do not want to live in Monterey. I am so sad there will be no Season 2, but I did like the ending.
Orange is the New Black: I finished the latest season pretty quickly (13 episodes is NBD when you’re sick and have plenty of time). I didn’t love the season as a whole and I thought the flashbacks were really weak all season. Usually the flashbacks feel so crucial to understanding the characters and how they got to Litchfield, but they all fell flat for me this time around. Taystee is awesome (get Danielle Brooks some awards, please!), and I sobbed at that very last scene during the finale episode. (Maritza saying, “I love you” to Flaca! All the women banding together and holding hands in the pool. Ugh. Plus, that song gets me every time. Including in Step Up Revolution.)
Spencer Pratt on Instagram. And you should, too.
To David Willey’s final “Moonshot Marathon” episode of the Runner’s World podcast. David just stepped down as editor in chief of Runner’s World after 14 years, and he’s spent the last few months training to run a Boston Qualifying time at the Bayshore Marathon. The whole podcast series was really well done, but the last episode was so good. Listen to it. Preferably on a run.
There are no new episodes of the Ali on the Run Show this week (something had to give), so catch up on ones you haven’t listened to yet and I’ll be back with new episodes next Tuesday and Thursday! If you haven’t listened to the show yet, might I recommend a few of my favorites?
- Episode 1 with Emily Halnon: You know her as “Sweaty Emily,” and catching up with her was SO FUN.
- Episode 2 with Brian Cristiano: Know someone with a chronic illness? You should listen to this.
- Episode 6 with Chris Heuisler: I’ve done 37 episodes of the podcast, and this one is still my favorite.
- Episode 13 with Chris Mosier: Chris is incredible, and this episode is important.
- Episode 19 with Michele Gonzalez: Michele is NYC Running Mama. You know her. You love her. Now get to know her better.
- Episode 31 with Dan Nevins: Dan is a veteran who lost both his legs while serving overseas. So yeah, let me complain about my Crohn’s disease…
- Episode 35 with Mia Michaels: If you love So You Think You Can Dance, you’ll love this episode. (The sound is only scratchy for the first 10 minutes, then it’s #flawless. Sorry about that!)
The Ali on the Run Facebook page! I finally created a Facebook page for all things Ali on the Run, so make sure you like it and follow along for blog updates (a rarity!), podcast updates, and [even more] pictures of Ellie.
NOW YOU DO IT! What are you loving lately? Gimme some good stuff.