The herbal pills are pretty and they smell good. Now I just need them to do something.

Change In Plans

Date: May 17, 2013 at 8:06 am- by Ali- Comment(s): 75

Two years ago, on a Friday night, I ate a piece of fish and a big bowl of corn.

The next morning, I woke up brutally early and made the trip out to Brooklyn to run the Brooklyn Half Marathon. It wasn’t a goal race for me, but I had just started training for my first marathon with Coach Cane so I wanted to do well and show him I was a decent runner who could negative split [insert applicable “LOL” here].

I hope Coach Cane never sees this photo and my "iPod arms." Silly young Ali, carrying her phone in her hand during a race.

I hope Coach Cane never sees this photo and my “iPod arms.” Silly young Ali, carrying her phone in her hand during a race.

The race did not, in fact, go well.

I had gone to the bathroom my usual 900 times at home, and when I got to the start area I hopped in one of the notoriously long porta-potty lines. I needed to…do stuff…before there was any way I was running 13.1 miles out to Coney Island. My stomach just felt off.

I got to the front of the line, bolted into the stall and, much to my dismay, found there was no toilet paper. Rather than hop back out and wait for a more suitable porta-potty, I just didn’t go. With a bubble in my stomach, I moved into my start corral hoping for the best.

What a terrible idea.

The race started and I went out fast — too fast for me, but I was loving the speed on the rolling hills in Prospect Park — all the while I knew something was off in my insides.

By the time I finished the second loop of Prospect Park, I was desperate for a porta-potty. I had never stopped to use a bathroom during a race before but knew my time had come.

I made my first urgent stop just outside the park, followed by several more. It was hot, I was sweating and I was panicking because my stomach was in such distress mid-race and I’d never had that happen before.

I finished the race in 1:52:14 — not bad considering the uh, issues — and swore I would never eat corn again (and I haven’t).

What I wouldn't give to sweat like that again...and not because I have a fever. Because I ran 13.1 miles.

What I wouldn’t give to sweat like that again…and not because I have a fever. Because I ran 13.1 miles.

I didn’t have time to celebrate my survival. I was immediately on a subway back to Manhattan where I showered and then got in a cab up to Van Cortlandt Park in the Bronx for a day of commercial shooting with the JackRabbit crew.

I was so tired, but shooting was fun. I loved being a part of Run for the Rabbit and getting to know everyone involved.

Three of the Rabbits with our oh-so-patient coach.

Three of the Rabbits with our oh-so-patient coach.

As the shoot wrapped and we all walked back to our cars, I started talking to the hot guy who was in charge.

It turned out, he lived in my neighborhood. We shared our favorite restaurants and bars and then we went our separate ways. Until a few hours later, when some semi-drunk Facebook message flirting got us on our first little date.

“He” was Brian. You know that already.

Earlier this winter, I signed up for the Brooklyn Half Marathon again. I was sick at the time, but I figured it would pass like it always did and I could get revenge on that Course to Coney Island. I never once thought I wouldn’t be able to run the race.

Plus, the timing was going to be great.

I’d have a good race this time, whether I could train for a PR or not, and then Brian and I had big plans: a trip to Hawaii.

Two of his friends are getting married in Hawaii, so we decided to make a vacation out of it. Plus, it would coincide with our two-year anniversary, and while neither of us are anniversary-celebrators, it was still sort of cool.

Well you probably know what happens now.

I’m not running the Brooklyn Half Marathon tomorrow.

I’m bummed, but I can get over it. It’s a race and there will be more races.

But on Monday at 10 AM, I’m supposed to board a 14-hour flight to Hawaii. I’m supposed to go to this magical place where we would hike and bike and do all sorts of fun, active, exciting things.

I bought new bathing suits, books for the plane ride, a pair of shorts with polka-dots on them and a sundress to wear out to dinner one night. I even got a new suitcase for my birthday to stuff full of Hawaii-appropriate shoes.

It's the most beautiful suitcase I've ever seen in my favorite obnoxiously-bright orange color. And yet...I haven't removed the tags.

It’s the most beautiful suitcase I’ve ever seen in my favorite obnoxiously-bright orange color. And yet…I haven’t removed the tags.

I don’t think that suitcase is going to get filled this weekend.

I’m in complete denial about this trip.

I can’t believe I’m probably not going to be able to go to Hawaii — a place I’ve wanted to go my whole life — because of Crohn’s disease. I’m in too much pain, and 14 hours is a long time to sit on a plane. Plus, even if I made it to the pretty islands, I wouldn’t be able to do much once I got there. That’s not the kind of trip I want.

I always bragged that I had this disease but it didn’t take over my life. I could still run! I could spin! I could go out with friends and I could mostly eat whatever I wanted! Except corn.

But now, Crohn’s disease is my life.

It’s keeping me confined to the couch and the bathroom, and there’s a 90% chance I’m not going to Hawaii on Monday.

I’ve tried to do everything right. The doctor said, “The Humira doesn’t seem to be working, so let’s get a second opinion,” and I called for the second opinion. Unsurprisingly, it’s impossible to get an appointment and I’m jumping through all the hoops I can find to make it happen.

I’ve been back to the acupuncturist and I’ve started on the Chinese herbs she concocted for me.

The herbal pills are pretty and they smell good. Now I just need them to do something.

The herbal pills are pretty and they smell good. Now I just need them to do something.

I take 15 pills a day, on top of the Tylenol I take for the unpredictable fevers (still happening) and the sleeping pills I take so I can get a few minutes of sleep between the night sweats (definitely still happening, and last night was disgusting).

This is how I sleep. On towels. It's fancy and smart.

This is how I sleep. On towels. It’s fancy and smart.

I haven’t wanted to write much lately because I’m not in a good place to be sharing how I feel with the world. I’m usually all about opening up, and I’m happy to tell you about my symptoms. We can be as graphic as you’d like.

Mentally, though, I’m struggling. And I fear how much worse that could get when Brian gets on a plane to Hawaii by himself on Monday and I stay here, alone, on the Worst Couch Ever.

I used to love planning fun things, and now I can’t plan my afternoon, let alone a tropical vacation. It’s a different lifestyle than I’m used to and it’s not one I want to become used to.

Some days I think I’ll wake up and this will have all been a dream. I still hope for that.

They say, “What doesn’t kill you makes you stronger.” I don’t believe that right now. I’ve never felt weaker.

And I’ve never been more desperate for an escape to somewhere wonderful.

Comments (75)
 
Brian brought home my favorite Molly's Cupcakes for my birthday. One bite, one trip to the bathroom...repeat, repeat, repeat.

No.

Date: May 13, 2013 at 7:37 am- by Ali- Comment(s): 63

No. I’m not better. Everyone keeps asking, “Do you feel any better?” Nope. Not really. I had fleeting moments this weekend on the couch where I’d think, “Hey hey hey now, I think I’m OK! I think I can go […]

 
Sara comes equipped with a puppy, but that's NOT the only reason we are friends.

My Birthday Wishes

Date: May 6, 2013 at 7:33 am- by Ali- Comment(s): 90

I’ve never really been on board with the whole “adult birthday” concept. It’s always felt weird to me to celebrate being, say, 28. I’m too old for my mom to bring cupcakes into my office, so what’s the point? This […]

Posted in Crohn's disease and tagged , -
 
Park Avenue tulips. I went for a teeny tiny walk on Saturday and got to see the flowers everyone has been Instagramming and #nofiltering. I'm not even on Instagram, but I know these things happen. I know everything.

I Still Believe In The Rabbits

Date: May 3, 2013 at 7:24 am- by Ali- Comment(s): 47

Wednesday was “Rabbit, Rabbit, Rabbit” day. I have woken up on the first day of every month since kindergarten and, while still laying in bed, I have whispered, “Rabbit, Rabbit, Rabbit.” It’s supposed to bring you good luck for the […]

 
A puppy (his name is Bokchoy), some flowers and painkillers. Thanks, LBC, for providing two of these crucial things.

Short-Lived Happy Tears

Date: April 28, 2013 at 2:32 pm- by Ali- Comment(s): 73

Last week — like so many of the ones that came before it — was something of a disaster for me. But between the rage-filled phone calls with angry nurses, the sleepless nights and the increasingly-high fevers, there were a […]

 
Lincoln Center, usually my happy place. I was supposed to go to two galas there last week for work. I made it to the first one...and lasted an hour before I spiked a fever, had to run for the bathroom mid-performance and eventually took a panic-ridden cab ride home to comfort.

I Didn't Want To Write About Boston

Date: April 22, 2013 at 7:39 am- by Ali- Comment(s): 99

It felt strange not to acknowledge what happened on the day of the Boston Marathon here. I kept feeling like, “I blog about running…I should have an opinion. I should have feelings. And I should share them…right?” But every time […]

 
All of the above, please. Just kidding. 10 OF EACH OF THE ABOVE, PLEASE.

Thankful Things Thursday: Day 10

Date: April 11, 2013 at 6:45 am- by Ali- Comment(s): 46

The food’ll come out…tomorrow!!! Thank goodness. Yes, I made it to Day 10 of the juice cleanse. On that note alone, I think we can jump right into the recently-neglected Thankful Things Thursday. I’m thankful I get to chew food […]

 
I stood by the Papa Gino's at a rest stop and smelled the pizza. It made me happy for about two seconds...until the guy behind the counter asked if he could take my order and I had to run away from him.

An Update On The Great Juice Cleanse Of 2013

Date: April 8, 2013 at 7:52 am- by Ali- Comment(s): 44

I hate juice. I hate fruit juice. I hate vegetable juice. I hate freshly-made juice and I hate Cooler Cleanse juice. So yeah, The Great Juice Cleanse of 2013 is going supremely well! Clearly. To refresh your potentially short-term memory: […]

 
If you can't eat it, juice it!

“This Is An Opportunity, Not A Punishment”

Date: April 4, 2013 at 7:16 am- by Ali- Comment(s): 85

Hi. I’m alive. And I’m doing OK. The Remicade, as suspected, never worked. The hospital visit was worth it for the fluid IV alone — my fever has been down since Monday and I’m not as deathly exhausted as I […]

 
My happiest place...

Desperately Seeking Optimism

Date: April 1, 2013 at 7:08 am- by Ali- Comment(s): 72

Let’s get the cheesy stuff out of the way first… From the very bottom of my diseased little heart, thank you all so much for your kind comments, your sweet thoughts and your nice Tweets. Being ill sucks, but every […]