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.
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.
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.
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.
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.
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.
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.
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?
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.
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.
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 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.
47 Responses
I’m so sad for you and what you’re going through! Thinking good thoughts and sending good vibes! Rabbit, rabbit!
I actually almost cried reading this. I feel terribe for you. Im so sorry !
Have never heard of rabbit day before – I like it! Hope you get better really soon.
I saw a rabbit today…well actually my cat spotted him first and took off after him. Long story short, the rabbit made it out on top, I’m sure it’s a sign you’re going to do the same. Rooting for you.
Try nutibulet.com it is so great I can eat seeds skins leafy greens fruitsand their skins its amazing it has changed me and my Charon’s it liquidate everything and drink it I haven’t had a flareup in 2 mints since iv been on it
Charon’s?
I’m so glad you have an acupuncturist- it’s really great to have a different perspective- and she can help you with food stuff too. I know you don’t want to, but consider some sort of topical treatment- it really was what turned the corner for me when ALL else failed… take care- thinking of you and sending hugs from CA.
I will be interested to see how the acupuncture works out for you.
Rabbits Rabbits Rabbits
I know exactly where you are at and I wish you all the luck in the world chick.
I have been reading for a while but have never posted. Tonight (nighttime in Australia) I just wanted to say something.
I’m not really being helpful am I? Sorry about that.
But yeah, I get it. I need new intestines too. Mine are totally broken. If they were a car, they would have been broken up for scrap metal about 5 years ago.
Big big big positive vibes right now. X
I’m so sorry, friend. I hope things turn around soon and if there’s ANYTHING I can do, I’ve got your back. <3
rabbit, rabbit, rabbit for ya!
This migh sound really weird/insensitive, but I’m really happy you’re trying acupuncture. My roommate has crohn’s as well and has acupuncture once a week and says it totally has made a difference in her good days and pain management. I know each person is different, but I really hope this is successful for you. You deserve good health!
Dear Ali’s intestines,
Get your shit together, like for real…
Get it together… Ditch the water and form some wonder shits… The normalist of normal.
Sincerely,
The Canadian.
I am happy you updated. I hope to hear good news soon
Hi Ali! I just started reading your blogs in the last month or so. I was diagnosed with Crohn’s maybe around 10 yrs ago or so. I’ve been flaring since October!!!! The last 10 years I didn’t pay much attention to my Crohn’s and actually didnt even say the word Crohn’s let alone tell people I had it! But this flare has changed me and has definitely been the worst, burning crampy pain with diarrhea on and off, fatigue, depression, weight loss( which is good for me actually!) But this flare makes me mad since pretty much the beginning of it I decided I wanted to make sure and do the right thing and go to the doctor and take care of me. See I usually flare every 2-3 years for 3-4 months and guess what I never really took my medicine as prescribed which was Colazal and the flare would eventually go away on it’s own. Hmmmmm, makes me wonder now about all the medicines that a lot of Crohn’s people say don’t work for them either. But had my 2nd ever colonoscopy in January was told I was moderate to severe and she wanted me to start remicaid. Well I ended up switching docs due to the doc barely giving me to 2 seconds after telling me I was mod-severe. Freaked me out! So went to new doctor, he decided to start me on 6mp an azulfidine combo, checked my blood work after 2 wks and liver enzymes shot way up. He thought we could lower the dose and try that but I was feeling like total crap on it so I said no… I started on Humira 8 wks ago plus 20 mg prednisone. The pain is definitely way better but still having on and off bloody diarrhea. Prednisone probably helps too, but just foud iut im anemic now 🙁 I have read a lot that it can take Humira up to 3 months to work. So that’s what I hoping and praying for or just to go away on it’s own and give me a break! I’m married with 3 kids and thank goodness for their awesome support! I’m also a nurse and so thankful for the abundance of toilets everywhere at work lol! But it is ruining my social life and tonight hubby (Bryan) wanted to go to dinner, my first thought which restaurant sounds good closest to home! I really hope things start turning around for you! I just thought I’d let you know there is someone here in Oklahoma feeling close to the same as you! My husband and I actually went to NYC for the first time in December and I was flaring so I was popping immodium and still running into some of the same toilets probably as you! I would love to visit again when lm not flaring so I didn’t have to worry about toilets! And I did NOT get to enjoy all the food, pissed me off lol! Well I’m crossing my fingers and praying for the Humira to start working for both of us! Please Lord!!! Hope you have a good weekend and that you and your Brian can do something outside of your apartment! Lori
I saw a cute little rabbit on my bike ride today. He must have been for you! Whenever you post I read it immediately hoping for good news. So hoping for the rabbits to do the trick.
1) Hugs from Chicago. I hope the needles do wonders! (also, I spelled that “niddles” at first. I need to get out of this cubicle and home to my couch.)
2) I thought of the rabbits on Wednesday too… and think of them every month now. Thanks a lot.
3) “#nofiltering” hahahhahaha
I haven’t really been commenting, because, of course, there’s nothing to say. But, I feel compelled to blurt out that I have been and am so hoping for some good changes for you soon.
Ali, I am so sorry you are still in such a sucky place. Every time I see a new post from you I hope it’s the one that says you’re feeling marginally better. I can’t imagine what it’s like to feel so out of control of your own body.
But I am SO glad you tried acupuncture. My mom is an acupuncturist. She decided to go back to school for it when I was about 9, so I grew up in that environment and it has truly helped change my perspective of my own disease. The one piece of advice I have is to give it time. Some people give up too early, expecting an immediate fix, so just go as much as you can and see what it does for you over the next few weeks. I’m crossing my fingers it helps you in some way!
Sending you lots of virtual hugs.
Ali, you truly are an amazing woman! With everything you’re going through, you seem to be doing the impossible. You have the courage to fly across the country, to keep working, to actively try to get better, to blog through the worst, and you still somehow seem to find the bright side and humor in the world. Most people can’t seem to do this on the best of days. You are an inspiration to me and to all!
Ali, you don’t know me, but I’ve been reading your blog for awhile now. It just makes my heart hurt to hear that you’re still not feeling better. I can only imagine how hard it is for you to be your usual positive self right now. So the rest of us will just have to be positive for you! I’ll be thinking healing thoughts for you!
I’m rooting for the rabbits too! Feel better, Ali! I know this will get better soon.
Sending lots of rabbits your way! And hoping the acupuncture works!
I also like shirts with extra long sleeves and thumb holes. *thumbs up*
Hope the acupuncture works!
White Rabbit, White Rabbit, White Rabbit! Ages ago at summer camp my counselor told me that adding white to ‘rabbit rabbit rabbit’ would bring EXTRA luck to the month… here’s hoping it works for you!
I tried acupuncture and while I’ll never know if it worked, I do know that it worked wonders for my relaxation. Best naps ever with those needles in me! I hope this works for you!.
I was just thinking about you this morning and am so glad you updated. HUGE kudos to you for braving that work trip! They should give you a raise just for that. I am so sorry you’re still not feeling better. I will keep praying and hoping.
Good luck with Maya!!! I’m glad to hear that the first session went well! Here is hopes to many more sessions like the first!
Stay strong Ali!
So sorry to hear you’re still struggling. Wow, what a trouper though that you are still finding bits of joy and rabbits. 🙂
Thanks for sharing the info about acupuncture – that really is fascinating that the most problematic point was the one that’s, well, most problematic.
Wishing you more & more wellness each day,
K:)
I’m so glad that you liked MAYA!!!! FYI – the Chinese Herbs have changed my life and I am fairly positive they are the only reason I’m okay right now. The herbs are like crack cocaine but in the form of “witch’s brew”. At one point, I was debating moving to China and becoming a herbist so I could brew my own <— true story. ask meggie. I was looking at plane tickets to China.
Even though I can't relate to Crohn's, and I'm really sorry for what you are going through, I am seriously thinking of you a lot. Also, let me know if you need anything!!!
You are simply amazing! I’m constantly impressed with your honesty and willingness to share the not so pretty things this disease has to share. I so hope the acupuncture brings you some much needed and deserved relief!
Ali, I am so sorry. So sorry. Hang in there. You are fantastic and you do not deserve this level of sickness. Sending lots of healing thoughts.
Yucky! What a long, horrible flare. I am so sorry! I tried acupuncture once while in the midst of a huge flare. I didn’t feel anything but I think I need to try someone else. I got an. . .iffy feeling about the dude with the needles. I think my mind set was off from the get go. It doesn’t bode well when you get the creeps from someone about to put giant needles in your skin. Anyway, I am glad you were able to get back to work but sad that it was shear will and not an improvement in health.
Keep trying stuff. I think that helps. I did cranio-sacral therapy for a while. I don’t know that it did anything but make me feel like I was trying something. And sometimes that is all I need.
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I hope that May is the month things turn around for you! I appreciate your honesty through this time of frustration, you are bringing awareness to those of us that struggling with gut issues!
And puppies always help. Always.
Hope things start working pronto, Ali! You are amazing – I never would have been able to fly cross-country during my last flare-up. Here’s hoping LOTS of lucky rabbits make their appearance for you this month… and maybe a few more puppies!
This is some bullshit indeed. I’m glad you are seeking out alternative treatments. I know people first hand that swear by acupuncturists! I’m hoping that you’ll end up on that list.
Also: your work ethic is respectable. Seriously!
I never believed in acupuncture (seemed too good to be true!) until I was in a car accident last winter and had some crazytown bad whiplash. THAT CRAP WORKS! I truly hope it works for you and that you are feeling better soon. And maybe those rabbits are just hiding from the snow in May (we have snow in Kansas today. On freaking May 3rd)? Don’t worry, they’ll be back!
Sending you good thoughts! And, in happy news: whoa, Tyler! Crawling and sending out love notes? Are the girls lining up yet?
Ali … really, really sending you the best thoughts possible that things will get better. You have no idea who I am, but I have been following your journey since the beginning and it is so heartbreaking to hear of the challenges you have been facing recently. I think of you when I wear my I <3 SWEAT shirts and hope you will be donning one soon on a Central Park run. <3
I admire your honesty and I hope that the new meds start to help ASAP. Hang in there and head to the puppy store, the cuties really seem to help!
It’s amazing that you’re staying so positive through this. I really admire that! I hope this acupuncture works wonders!
If there was some way to send positive energy, I’d be all over that. Are you near a David’s Tea? Their “le digestif” tea is my “magic tea” when my stomach is a…um…mess. I think it’s the catnip.
I’d also be interested in hearing more about your acupuncture experience.
I REALLY hope you feel better soon — you’ve definitely put in your time on this round.
I want to say something crazy uplifting and happy and “make you laugh-ish” but I think back to times I have been where you are and that kind of stuff just cheesed me off.
I pray you get a decent amount of uninterrupted sleep soon. Maybe you need a stuffed giraffe as a couch mate?!
Acupuncture is fantastic. It has gotten me through some crazy depression and running related injuries. Hope there is progress for you! Puppies are awesome.
Still grim. This doesn’t seem to be improving within my timescale for you. Tulips are nice though.
this is some bullshit ali i am lodging an official complaint