“I mean, I’m no stranger to pain,” I told the note-taking physician’s assistant with the sympathetic eyes. “I used to run marathons.”
I used to run marathons.
When you don’t think before you speak, you say things like that.
And then, as you keep rambling about your symptoms aloud, the thoughts in the back of your mind quickly go to all the other things you used to do.
I used to run.
I used to go to the office every day to work hard at a job I loved — a job I spent my entire life working toward and that I was so proud of.
I used to write fun, happy blog posts!
I used to actually see my friends.
I used to be awesome at sending people cards not just on their birthdays, but on random days, too, because I wanted them to smile.
I used to have muscles.
I used to leave the apartment every day.
I used to tweeze my eyebrows before they took over my face, caterpillar-style.
I used to smile every single day.
I used to laugh a lot.
I used to tell jokes.
I used to Skype with my perfect little nephew all the time because I had lots of energy and enthusiasm.
I used to make plans for the future, never doubting whether or not I’d be able to follow through with them.
I used to be so happy and, with the exception of a few low points in 2012, I was pretty healthy, too. The two go hand-in-hand.
These days, I am not at all the person I used to be. Clearly. I don’t laugh, I don’t smile much and unless I’m going to the bathroom or the kitchen, I don’t get off the couch. I certainly don’t leave the apartment.
Yes, I’m back at my NYC apartment on my sad leather couch. I got to spend an amazing week in New Hampshire, letting my doting and very kind mother wait on me and cook me gluten- and dairy-free foods. She was amazing and the change of scenery was much-needed.
Unfortunately, though, I didn’t leave The Granite State feeling any better. I think my mom and I both assumed that getting away and “relaxing” would cure me, and while the trip was so nice and I’m so appreciative of everything my parents did for me, being “home” didn’t ultimately fix my various problems.
And, in what seems to be an almost comical move at this point, I managed to get worse this week!
I know, how is that possible? But it is!
I flew back to New York last Thursday night.
I thought I’d be able to go to work on Friday, but that was silly. I spent the day in the bathroom instead — my home within my home.
I was on the couch all day Saturday. I never left the apartment. I never breathed fresh air.
So I was determined to get out by Sunday.
Then, oddly, I woke up Sunday with really sore ankles. My wrists and ankles had been hurting while I was in New Hampshire but I was never concerned. Joint pain and inflammation are side effects of Crohn’s disease, and the pain wasn’t particularly debilitating, so I just went with it. Plus, the pain tended to loosen up throughout the day.
On Sunday, though, my right ankle really, really hurt. And as the day went on, the pain got worse.
By late afternoon, my ankle had blown up and I couldn’t put any weight on it.
Sunday night was one of the worst nights of my life.
It’s so dramatic, I know.
But really, it was so bad.
I have never experienced that type of joint pain. Plus, it’s not like my stomach decided to let up in the meantime. So every half hour I was literally rolling myself out of bed and crawling on my hands and knees to get to the bathroom, where things continued to be unbearably painful. I screamed and hysterically cried out in pain throughout the night, and I realize how pathetic this all sounds but holy hell, it was brutal.
By Monday I was completely immobile. There was no chance of going to work. I couldn’t walk at all or put any weight on my right foot.
I had gotten past the “Life’s not fair” phase of being sick, and I’d long since moved past the Saturday morning “everyone else is long running” sadness. But at this point, it honestly seemed like someone was just playing a sick joke on me.
The good news — yes! there is some good news! — is that I saw a new doctor on Monday and he’s going to be my new guy. He came highly recommended to me by several trusted people and despite the fact that I was an absolute mess throughout the appointment (my ankle was in so much pain that I cried the entire time), it went well.
The plan, for now, is to start taking the Humira weekly and hoping it will actually start helping (I’ve been taking it every other week for a total of eight weeks now and, clearly, haven’t seen any change, let alone improvement). I’m also on 6 MP, a drug that is known to work well in conjunction with the Humira. Unfortunately — yes! of course there’s an unfortunately! — this drug takes three to six months to take effect. No problem. I have all the time in the world.
The doctor put me on an antibiotic for the joint pain and swelling, and I’m happy-ish to report that after a few days the pain has begun to diminish. I’m still a hobble-master, but the pain isn’t scream-inducing like before.
Next week I’ll go in for a test that has a real name, but that I call “the Fancy Pill Camera Test.” The doctor wants to see my insides without doing a colonoscopy, so I will take this giant horse-sized pill that has a camera inside it, and as the pill digests, the camera takes wireless photos of my intestines.
Science, man, I swear. It’s amazing.
And yet this disease has no cure. So science still doesn’t impress me that much.
I’m still gluten-less and still dairy-less, and if I get one more email suggesting I try the SCD diet I’m going to punch someone. Yes, I know about the diet and the book and the “lifestyle.” People, I know you’re trying to help, but you’re killing me, here.
I’m also officially beginning disability/medical leave from my job.
This one breaks my heart and I don’t want to talk about it.
I never in my life thought this disease would come to this, and yet here I am.
I used to be able to live my life.
Enjoy every day that you have your health, friends. When you lose that, life really starts to suck.