There’s a lot about my personal life that I haven’t shared on this platform before, but I think it might be time to change that. I’m sorry, this is probably going to be long.
I’m not difficult to know, not at all. If you follow me on Facebook or Twitter you’ll see that my self-claimed title of “exuberant oversharer” is well-deserved. I don’t steer away from uncomfortable subjects, especially when it comes to myself. I’m a firm believer in normalizing difficult or awkward topics, so I am open and honest. That’s a tricky path to walk as a semi-public figure, let me tell you.
One thing I’ve been increasingly forthright about is my health and specifically, what it’s like for me to live with Crohn’s Disease. I specify “for me” because everyone’s experience varies, of course. I’ve mentioned that some of the events I’d planned to attend fell through for me, and I think I’ve also talked about how writing the current WIP has slowed down because of my Crohn’s as well. The truth is that I’ve been miserably sick, which I hate to admit because I despise feeling weak or unable to do the things I love. But it’s the truth, and I think it’s important to acknowledge it.
Forgive me if I tell you things that you already know here, but for those who don’t know about Crohn’s, here’s a rundown of what it’s about. It ain’t sexy by a long shot, but this is something that needs to be normalized talking about as well!
Crohn’s Disease is a type of Inflammatory Bowel Disease. What that means is that my immune system thinks that parts of my digestive tract are Bad Guys and goes after them like misguided little superheroes. That has led to a lifetime of undiagnosed pain and issues which finally got a name when it all unexpectedly went to hell about three years ago.
I had a sudden trip to the ER, a surprise surgery to put my busted guts back together, and a long recovery that included 11 days total in the hospital and an extended, unpleasant infection that I learned to take care of myself. GOOD TIMES, right?
It took about a year to get an official diagnosis and some treatment. That’s pretty normal, and terribly frustrating for the person waiting on that diagnosis. Medications for Crohn’s are in a couple of different classes, and approach treating the disease through different paths. I went on a two-medication approach that included a biologic. For a while, that made things better — not resolved, I didn’t go into remission — but it was tolerable, mostly.
Then I failed out of the meds I was using. What that means is that they were obviously not doing the job anymore, and my doctor and I could see that things were getting worse.
I should mention that these drugs are SO GODDAMN EXPENSIVE. If I didn’t have the coverage that I have [thanks Obama] I would be paying thousands of dollars for *each* treatment. The drug I’ve recently been moved to has an average retail price, without insurance/coupons/etc, of $4600 a dose. Why so much? There’s no generic for this one as of now. Guess who didn’t like that at all? My insurance. I had come off the previous prescriptions in order to get my body ready for the new meds, and then my insurance started dragging their feet. That went on for months, which allowed my Crohn’s to ramp back up in that unmedicated gap. I have an entire rant about insurance and pharmaceutical companies having so much power, but I’ll save that for another time.
The State of Me right now is that I started the new meds, and then about a week before my first self-administered shot, I started feeling weird. I quickly determined that I had a flare coming on, and it was going to be a doozy. A flare for me means lots of lower quadrant bowel pain – right around where I originally had my resection – fatigue, and uncomfortable bathroom issues. This time I also was having chills, and then an inability to eat much. I started dropping weight rapidly, and I was frantic trying to find things to consume that would keep me going and staying functional.
“Everyday I pray
내가 좀 더 나은 어른이 될 수 있게
that I can be a little better grownup
And everyday I stay
사람도 아픔도 언젠가는 죽기에
Because all humans and all the pains eventually die
무뎌지려면 바람을 맞아야 하잖아
We have to face the wind to become numb
꿈 속에서는 영원할 수가 없잖아
Nothing can last forever in the dream
힘내란 뿌연 말 대신
Instead of those vague words to cheer me up,
다 그렇다는 거짓말 대신
instead of those lies that this is how it is supposed to be,
그저 이 모든 바람 바람처럼 지나가길 I pray
I pray that it shall pass just like all these winds”
– RM/Kim Namjoon, “지나가 Everythinggoes”
What happened after that was a CT scan and then a five day hospital stay to get rid of and infection in that area. And now I have a plan to have a second resection, this time to hopefully eliminate the stricture and possible fistula that formed after surgery #1.
Most people who have Crohn’s and have a resection surgery will end up with another. In my case, it was an emergency resection thanks to a catastrophic situation, and that made everything more complicated. I’m honestly lucky to be alive.
All that said, it still is extremely frustrating to be hampered by my illness. I wrote ISYK and CASOD while I was in a good period of health, and they went pretty quickly. The current manuscript is in a holding pattern right now because I barely have enough energy and brains to get through a day while sitting on my couch and staring at the computer, much less trying to focus on a plotline and put the words to the screen. It’s also extremely depressing to be in this state, which does nothing for my creativity. But as Kim Namjoon sings, 지나가. It shall pass.
I’ll have my creativity back, and my energy. I’m a determined and focused person, I know I can do this. Hell, I can’t write a book right now, but I’m learning Korean! I can’t walk for extended distances, but I can freestyle in one spot in my kitchen. [No, I won’t post videos of that!] And I can try to keep in contact with all of you and let you know what happens in my life.
Everything, everything, everything goes.
ps – this is a song that’s given me immeasurable amounts of strength during the past days, so I wanted to share it with you.
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