Trying your best with a chronic illness

This hospital view still kicks ass

Reading Fredrik Backman’s new novel Anxious People made me feel just about every emotion one can possibly feel after reading. On its face and from the opening few pages, it seems like a book filled with one-dimensional jerks that you just want to scream obscenities at.

But by the close, it’s a novel filled with comedy, depth and love all wrapped into one beautifully told story. On the final page, though, one particular passage felt poignant to me.

The truth is that this was a story about many different things, but most of all about idiots. Because we’re doing the best we can, we really are.

This year sucks, that much is true for everyone who hasn’t profited off the pandemic. We’ve seen countless — and still rising deaths — and an economy jettisoned into record unemployment and recession. We’ve all been affected in some shape or form.

On top of the dumpster fire that is this year, I still have Crohn’s Disease. That isn’t going away anytime soon.

I’d already been hospitalized once in May for a random flare and was terrified of going into an emergency room with a fever during the age of Covid.

But after that blip, things got strangely good.

Let me qualify that. Strangely good for someone who still has a severe chronic illness, still needs regular checkups and is still going through physical therapy to both strengthen and loosen my pelvic floor.

Apart from that, things were good.

A summer colonoscopy came back clean and my c-reactive protein level was in normal range at 2. For reference, when I was battling a strong infection and flare last March, it was 248.

It felt like I was doing my best. I was seeing my doctors when I needed to. I was taking my medications and vitamins so my levels remained steady and within their proper limits. I was doing yoga on YouTube and biking regularly in my neighborhood. I was making most of “being healthy” and trying to socially distance.

Then, the last few weeks crept up on me out of nowhere. I noticed my lower back was progressively hurting again. I needed to sit on a heating pad more than I had in at least eight months. I was losing a lot of blood when I was going to the bathroom.

And then, it came to a head the Sunday before Thanksgiving. I woke up nauseous, my ileostomy output was significantly less than what it would normally be and my appetite was nonexistent. I tried going to bed early but was freezing with unshakable — and then too shaky — chills before incurring a low grade fever.

It didn’t go away on Monday and to the emergency room I went again. A few tests over the next day or so and it confirmed some new active inflammation in my ileum and a CRP of 134.

Just like that, six months after my last visit and relatively healthy stretch, I was in the midst of yet another flare.

I sat in my hospital bed at NYU simultaneously vindicated that the symptoms I was feeling wasn’t in my head but frustrated that we were back at square one.

I’d done what I could to try and remain as healthy as possible, but my best didn’t matter. I was hooked up to an IV with fluids wondering what I did wrong to get myself in this situation again. Was I being overzealous when I was planning things I could do in a post-pandemic world? Was it my fault because I had that frozen pizza last week? You can battle with the minutiae all you want but it doesn’t end up doing much good.

I liken having Crohn’s to a beach day, and no, not Michael Scott’s.

You can plan your day ahead with perfect weather and relax in the sun and breeze with no care in the world. Then a squall comes in, blows away your umbrella and snacks and you’re running for your life away from lightning bolts.

I was all mentally prepared for Thanksgiving and my body decided it wanted to fight me because it didn’t like my opinion of Trader Joe’s cranberry relish, maybe.

After a scope and MRI I had in one of the operating rooms, I spoke with one of the GIs on my hospital team and asked if there was something acute that maybe I could’ve caused to happen. There was no infection, this was just pure inflammation burning in my abdomen. She said unfortunately, no, there was no smoking gun that would provide us with a clear answer on what exactly triggered this flare.

In a way that’s irritating and cathartic. I could do everything in my power to avoid something like this and it would still happen. That’s the nature of this beast.

That’s when it dawned on me. I am trying my hardest to be proactive about my illness. I’m talking to my doctors, who know may more than I ever will about inflammatory disease. I’m remaining active in the IBD online community and trying to adhere to things that can be helpful. I’m going to take whatever medications or biologics to try and put my disease in full remission. I can do certain tangible things to help, even if they don’t pay dividends in the immediate future.

Luckily, I was discharged on Thanksgiving and I was feeling well enough to enjoy dinner, dessert and the leftovers the subsequent few days. (Major shoutout to my mom who picked up me from the hospital and then finished cooking our meal).

At times, there feels like there can be nothing to be thankful for in 2020, but this meal almost made me cry. It was a tasty diversion away from the world and hearing about my CRP levels.

In the near future, I’ll know what the gameplan is for the longer haul and what that might mean for my active disease. Right now, the steroids are helping in the interim and are holding me over for the next few weeks. After that, I’m hoping some stronger meds work to keep down the Crohn’s.

I hate to go all Sam Hinkie here, but I just am trusting the process. It’s about doing all I can to counter this disease. The stuff that’s in my control I’m going to do all I can to take charge of.

Because I’m doing the best I can, I really am.

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