What happened next was, at least at the time, life-changing. I walked to Central Park, staying on the busiest streets so my mind was occupied by people watching and I was at ease knowing I could run into any of the open restaurants or nail salons should I need an emergency bathroom stop.
I made it to the park stop-free, and as I rounded the corner and faced my long-lost love, Engineers’ Gate, I was admittedly overcome with emotions. I was so happy to have made it there and so eager to step foot into the park.
I miss you so much, E.Gate.
I knew there was someone who would be even more excited than I was, though: my mom. So I called her up as I began walking south on East Drive. She was positively giddy hearing that I’d left the apartment and was out for a walk, but as soon as I told her where I was, I started to cry.
As happy as I was to be out walking, I was also sad that I was surrounded by runners and cyclists who seemed so healthy, so at ease and so carefree. I don’t remember the last time I felt “carefree.”
I walked south for a little while before heading up to the Reservoir. I couldn’t believe how green the park was and how in bloom everything was. I walked a full loop of the Reservoir, and when I say “walked” I really mean strollllllled. There was no “power” to my walking. I truly am taking baby steps here.
Hey hey, Jackie O! Sup, girl?! How you been?!
At times I’d feel frustrated by how tired I felt. After I rounded the Reservoir, I took a seat with my old friend Bernie.
I love this bench. I like to wonder about Bernie. Who is he? Was he a runner? Did he like people watching? DID HE HAVE CROHN’S?
My legs were already sore, my shins a bit achy. I needed to sit and regroup, and while I did I reminded myself that being out was a great thing, even if just walking was ridiculously difficult and energy-sapping. I have to start somewhere, and that somewhere is not going to be with a six-mile run.
I people-watched for a while and then headed back to the apartment where I immediately threw myself onto the floor in a fit of happy exhaustion.
I had done it!
I had left the apartment. I had gone to Central Park. And I hadn’t needed any of the public restrooms along the way.
For the first time in my life, I had a major walker’s high.
Look at that view. Oh it’s stunning.
So the next day, despite feeling like I had just run a marathon, I wanted to go for a walk again. The fresh air had done wonders for my mental state and I needed more. So that’s what I did, and it was successful again. I didn’t walk around the Reservoir because my legs, especially my shins and hamstrings, were so sore, but it was nice to be out again. The weekend was a success.
OMG NO FILTER, YOU GUYS.
In spite of months of letdowns and discouragements, I went to bed Sunday night thinking maybe this was the start of my upswing.
Silly Ali. Naive Ali. Dumb Ali.
I didn’t leave the couch that next Monday, in part because it was pouring all day but also because I felt sick as ever. That walker’s high didn’t last long, unfortunately.
The sick girl loves rainy days.
Since then, things have failed to improve at all. People have asked, “Have you noticed any change?” and the answer is a sad, simple “no.” Here’s a little look at how the past few days have been:
Tuesday, June 11: I email my doctor’s P.A. because I need a refill of my 6MP. We’re doubling the dose to 100 mg/day so I need a lot more pills. Two minutes after hitting send, my phone rings. It’s Dr. Kate The P.A. They got my bloodwork results back from the week before and they were “really concerning,” she said. That’s awesome. “I can see why you say you’re feeling so awful!” she told me. (In case my hysterical tears in the office didn’t make it clear, the numbers attached to my blood speak volumes. Oh, doctors.) She asked if I could come in “as soon as possible” to get an IV of iron and another of Albumin (protein).
Evidently, my iron had reached a “dangerously low” level — a beautifully-anemic 8. When your iron dips below a 10, you’re in rough shape (this would explain why walking up that hill made me pant and cry just a few days before). When you get to a 7, Kate told me, that’s when we have to do a blood transfusion. So that’s something to look forward to. My Albumin levels were a 2.3, and apparently you should never be lower than a 3. Damnit. My levels suuuuck.
I took a shower, actually put on a bra (OK, a sports bra) and was off to the doctor’s office where they “loaded me up” with a scarily-dark iron IV (you can taste it in your mouth as it goes in — it tastes like metallic burnt caramel, which isn’t yummy at all) and the Albumin. The process was quick and easy and I did not feel any improvement in the days following. Nice try, Dr. Kate.
This is what the iron looks like going in. Sorry if you’re squeamish. DAD, ARE YOU OK? This photo probably just made him pass out. MOM, CAN YOU CALL DAD AND CHECK ON HIM?
Tuesday night, I got a special visit from the Dance Spirit staff. Remember when I used to work there and have a job and a paycheck? Those were the days…
The girls came bearing gifts!
If you have an incurable disease, people will bring you presents.
But my favorite part of the delivery was a card that the entire company had signed. It was very sweet, even if most of the messages happened to mention the fact that the office is “quieter” without my presence. There’s love in that sentiment, I know it.
We are editors. We own colorful pens.
Wednesday, June 12: Another day on the couch. But the highlight came at night, when the best thing ever happened. You know how I haven’t been able to work out or do any physical activity (besides my two big walks) since February? Well, my favorite SoulCycle instructor, Bethany (take her classes now, because once I’m back I’m booking all the bikes), happened to noticed my sweaty absence. And since I couldn’t go to Soul, she decided to “bring SoulCycle to me.”
You think YOU’RE the spin teacher’s pet? No I’M the spin teacher’s pet.
She came to my apartment that night with my Twitter-turned-real-life friend GB and my good friend Sara and they ambushed me with presents and surprises. Bethany made a playlist for me and set up my apartment with a SoulCycle candle, speakers and a sweet new outfit. It was the nicest, coolest thing ever and again I felt very loved (and a bit embarrassed, since I was back and forth to the bathroom the entire time they were over).
Thursday, June 13: Still sick. Still on the couch. No adventures. When I wake up, I notice my left ankle is swollen and very painful. Oh yay! The other ankle this time! It feels exactly the way my right ankle felt the day before I became immobile. I am pissed.
This is my view every day. Just me, my laptop, my friends on SoapNet and Cookie The Llama sitting on my suitcase.
Friday, June 14: My left ankle is, as predicted, a mess. I can barely walk on it. I email Dr. Kate The P.A. asking what I should do. She says she can put me on a high dose of prednisone (steroids) and I’m not at all interested in this. More drugs. I’m already on so many drugs. Do not want.
So that brings us to the weekend: A weekend I was able to spend outside NYC.
I am the world’s worst wedding date. Sorry, Brian.
My friend from back home — we’ve known each other since second grade — was getting married up in Stowe, VT. All week I had debated whether or not going was a good idea. I knew I’d probably feel like crap all weekend, but wouldn’t I also feel like crap here in NYC?
Brian and I rented a car and made the very loooong drive up to Stowe on Friday.
I survived the car ride without needing emergency pit stops, which was miraculous, and the entire weekend was mostly stomach-drama-free. I didn’t feel great, but I survived, and that’s pretty much the best I can do at this point.
Also miraculous: My left ankle healed itself. I never took the prednisone and eventually it just stopped hurting.
The wedding was beautiful, but the reception was hard. I was back and forth to the bathroom the entire time. I missed half of the bride and groom’s first dance, I didn’t get to take advantage of the open bar and I didn’t dance to even one song. I was tired, I was in pain and while I was so happy to see all the girls I grew up with, I was pissed I couldn’t be a better wedding guest.
With the beautiful bride.
Brian and I drove back to the city on Sunday and now here I am, in the apartment, desperately wanting to leave but feeling chained to the bathroom. Last night I was up every half hour. I wish that were an exaggeration. It was not a good night.
I’ve also got a few fun side effects currently plaguing my body, and while I consider us all to be best friends, these are things even I’m not willing to share with the entire internet.
Lucky Meggie, MD, gets ALL the Crohnsy details. Try to contain your envy.
I’m heading to the doctor this afternoon for another round of IV infusions.
I don’t know what happens next. I don’t know how long I keep doing the Humira + 6MP and hoping it will work. I know the 6MP takes a long time to become effective, but I’m running low on patience here.
I try to remind myself of this every day… It doesn’t always work.
Rachel Green said it best: “The nights are the hardest. But then the day comes…and that’s every bit as hard as the night. And then the night comes again.”
So this wasn’t quite the happy “I’m back in the land of the living” post I had hoped and planned for. Sorry.
Maybe next time.