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 rest of the month.

Clearly it’s not a foolproof method for success, but I stick with it every 30–31 days.

When I woke up Wednesday, though, I had a hard time summoning those little woodland creatures. Wishing for “luck” in the midst of the shitstorm of my life seemed more hopeless than ever.

I still did it. Old habits die hard, and this one has stuck with me since 1990. Damn you, Mrs. Forgiel, you kindergarten-teaching wizard.

It’s impossible at this point to think I can count on luck to help me feel better.

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.

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.

It’s been one week now since I got my first four Humira shots and so far…nothing.

Not only am I not back out running, spinning and frolicking in my sports bras, I’m not even sleeping through the night (or in the same bed as Brian — I take the couch to avoid soaking through the sheets and waking him up every 15 minutes) or enjoying a solitary moment without pain. I am apparently not one of the very lucky people for whom Humira kicks in “right away.”

And yet I somehow survived my third flare-up-ed cross-country flight this week for a work trip.

I wasn't really on picture-taking duty while in Tempe. So here's a nice picture of a fence and some flowers and a palm tree or two.

I wasn’t really on picture-taking duty while in Tempe. So here’s a nice picture of a fence and some flowers and a palm tree or two.

It wasn’t a smart decision on my part. I know I shouldn’t have gone on the trip. Humira is a strong immunosuppressant, so being on a plane with loads of coughers, sneezers and germ-carriers isn’t ideal for my squashed immune system. Plus, Arizona isn’t exactly right around the corner.

But we know that I’m stubborn, and despite my dad’s insistence that if I go “I need to wear a face mask on the plane,” I boarded U.S. Airways Monday morning bound for Phoenix, sans face cover. I haven’t had much of a presence in the office lately (it had been weeks since I actually went to work) and this trip was for a photo shoot I was excited about and was proud to have pulled together. I wanted to be there to see it through. And so I went.

A scene from our May/June cover shoot...the one that got me so stressed and sick that my Crohn's-Colitis went from a 4 to an 8. Worth it? I'm still not sure.

A scene from our May/June cover shoot…the one that got me so stressed and sick that my Crohn’s-Colitis went from a 4 to an 8. Worth it? I’m still not sure. Let me know if you can find me in the crowd. Hint: I’m not the one in the red jacket.

The flight out to Phoenix wasn’t too terrible. I hadn’t slept at all the night before, so I managed to pass out for the first few hours of the flight. My coworker and I got to our hotel in Tempe by 12:30 PM and were sitting outside in the 100-degree heat by 1:00.

The trick to making your feet look small is buying the baggiest pants you can find.

The trick to making your feet look small is buying the baggiest pants you can find.

By 4 PM we were exhaustedly tucked into our beds with a movie and room service. I popped a sleeping pill and a pain pill (both seemingly useless, but I keep trying) and got a decent night’s sleep, only waking up three times for bathroom needs — all of which my coworker claims to have slept through. (I should also note that our hotel room didn’t have real bathroom doors and instead had “trendy” “barn-style” doors that didn’t even close all the way. You know what’s a fun surprise for a girl with hyper-active Crohn’s who’s traveling with her colleague? A non-closing, non-soundproof bathroom door made for cows.)

Based on my successful “only waking up three times” sleep, I was hopeful for the next day: photo shoot day.

I swear, we never plan for this and yet whenever we travel for photo shoots, puppies ALWAYS end up on set. This little guy was a stray and I loved him forever.

I swear, we never plan for this and yet whenever we travel for photo shoots, puppies ALWAYS end up on set. This little guy was a stray and I loved him forever.

Instead, I woke up Tuesday and was back to Square Suck Ass. I was fevering, every joint in my body ached and my stomach felt like it was hosting a team of Boy Scouts all out to earn their knot-tying badges with my intestines. Ouch. And also gross.

Despite a rough start to the day, I made it through the shoot and we got plenty of gorgeous shots for our next issue. This is exciting for me and probably not for you. I’ll send you a copy so you can share my joy. What’s your address?

After the shoot, my body shut down, as it tends to do every few hours.

I went back to the hotel, crawled into bed, ordered food that I couldn’t eat (sorry, company budget, for wasting you) and watched “Full House” until I fell asleep. Thank goodness for my coworker, who did everything for me, including putting my food on my lap where I could reach it, unwrapping my silverware for me and removing the smelly dishes when I couldn’t handle them anymore. Rachel, you are a goddess. If it were Thursday, I’d be thankful for you. But I’m a day late, so I’m just glad we work together I guess.

This is from last year. Rachel is the one on the far right. I'm the one on the far left with the amazing posture and air-dried hair.

This is from last year. Rachel is the one on the far right. I’m the one on the far left with the amazing posture and air-dried hair.

I was supposed to see a show the night of the shoot, but instead I was bedridden with a 102.3 degree fever. Employee of the Year: Ali Feller!

The flight home Wednesday wasn’t too pretty either, but I got through it barring any major disasters. I sat perfectly still in my seat the entire time. I didn’t eat or drink so as not to disturb my stupidly sensitive insides, and even the slightest movements, like crossing my legs, had me doubling over and breaking the “fasten seatbelt sign” rule so I could make a sneak attack run for the bathroom. I PRd in airplane bathrooming on this one, that’s for sure. I also had to try not to cry a few times. It’s fine.

When the flight landed, I realized how bad-off I was beyond the stomach stuff and the back pain and the fever and the other various miseries I’ve been complaining about: I couldn’t get my bag down from the overhead bin. I did it myself, because of the stubbornness, but it just about knocked me over, and the bag wasn’t even full. It was half-empty. Sense my pessimism with that statement.

As I attempted to haul my wheely bag up the jetbridge (jetway? causeway? ramp? red carpet?), I realized just how weak I was. I don’t have an ounce of muscle left on my body. Every part of me is fatigued. Woe is my triceps. R.I.P. my calves.

UNRELATED TYLER PHOTO! Just because it's been a while since you guys have all seen each other. This is his pet puppy.

UNRELATED TYLER PHOTO! Just because it’s been a while since you guys have all seen each other. This is his pet puppy.

After bolting out of the cab line to run back into the airport bathroom, I eventually made my way into a little yellow car and got home around midnight. And then I let out all the tears I’d been hiding from my coworker and saving for lucky Brian. He was soooooo happy I was home!

Thursday was a big day: I went back to work. I kind of had to. How do I explain to my boss that I was able to make it across the country for a photo shoot but couldn’t salvage my way to midtown for a few hours to sit at a desk?

Central Park from my perch on Bernie's Bench this weekend. I long to be back there soon...

Central Park from my perch on Bernie’s Bench this weekend. I long to be back there soon…and not just passing by in a cab on my way to work. I would also like not to have to take cabs to work because that’s an expense I’m not up for anymore.

All day at work people kept coming by my desk and saying, “Hey stranger!” I think some of them genuinely forgot my name.

And then I did something new and scary: I went to an acupuncturist. I’ve been wanting to do this for a long time but I’ve canceled on the poor woman four times because I was always in too much pain to sit still and get needled.

Thumbs up for being willing to try anything at this point! Put needles in my head, sure!

Thumbs up for being willing to try anything at this point! Put needles in my head, sure!

This perhaps warrants a separate post, but the gist is that whether or not the acupuncture works and heals my inner parts, my first 90-minute appointment worked wonders for my brain. The acupuncturist (she’s also an herbalist and she’s going to dish out some Chinese herbs after we’ve let the Humira run a bit of its course) asked so many questions, not just about my disease but also about my mental state, my anxiety and my feelings.

I cried for her like a pro. She had a tissue ready for me before the first drop even flew down my cheek. She was amazing and so comforting. She said she could tell I’m “normally an optimist” but that “this disease has taken that from me.”

Spot on, new best friend.

I expected a stuffy doctor's office, but this place was much more spa-like and nice.

I expected a stuffy doctor’s office, but this place was much more spa-like and cushy.

As for the actual acupuncture: It was new and a little weird. I couldn’t even feel most of the needles going in (she put them in my lower legs, where she said I had lots of fluid build-up and inflammation — shocking — my chest and my scalp), but there was one in my leg that really hurt. I made a little “ow” noise that was actually more of a “meow” noise, and she asked if that one hurt. I said “meow” again and she said, “Interesting, that’s the one for your intestines.”

It all comes together.

Stay tuned.

I came back from my trip and found this creation in the mailbox. A handmade get-well card from my best friend. What's better than that?

I came back from my trip and found this creation in the mailbox. A handmade get-well card from my best friend. What’s better than that?

I still feel awful! I still mostly want to curl up and sleep forever and have this all be the worst dream ever!

I don’t have much “think positive” power left in me. I don’t have much fight to fall back on.

But I am still trying to believe in rabbits. So here’s hoping three little lucky ones come out to play this month.

Comments (47)
 
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): 42

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 […]

 
Never too sick for self portraits. MUST DOCUMENT ILLNESS.

White Flag

Date: March 27, 2013 at 11:39 pm- by Ali- Comment(s): 97

Things are not so good around here. Things are, unfortunately, getting progressively worse around here. It’s been a really bad past week or so. I was optimistic before I left for L.A. Even though the trip was going to involve […]

Posted in Crohn's disease and tagged -
 
I always think this hat is "really cute" even though everyone always tells me it's not. No one likes this hat, but I insist on wearing it. And then I see photos and I kind of get what they were all saying...it's not the best.

I Want My Life Back

Date: March 19, 2013 at 8:13 am- by Ali- Comment(s): 68

Well if that’s not the whiniest little post title of all time… One thing people tend to tell me when I’m Crohn’s flaring is that I “manage to stay so positive and optimistic.” Maybe online it seems that way. It’s […]

Posted in Crohn's disease and tagged -
 
Pet stores make me cry. I almost bought both these little guys because I don't want them to live on shredded scraps of paper in a storefront window. But then I remembered Brian's allergies. Stupid Brian. FIX YOUR PROBLEMS.

Thankful Things Thursday: I'm Doing My Best

Date: March 14, 2013 at 6:49 am- by Ali- Comment(s): 91

Ohh I am not feeling thankful today. Sucks, right? Instead I am feeling pretty awful. Minus the “pretty” part. Physically I’m deteriorating. Mentally I’m not far behind. The other day, when I first started feeling really sick, I remember thinking […]