I’m not better.
Everyone keeps asking, “Do you feel any better?”
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 for a walk! I should unpack from Arizona! Let me check the SoulCycle schedule for this afternoon!”
And then I was back in the bathroom, writhing and screaming (so glad Brian wasn’t around for this) and producing things that are terrifying for the average human.
People have told me to appreciate the little improvements or any signs of progress.
Well, I haven’t really seen any, except for the fact that yesterday was the first day in months that I didn’t cry. And I don’t think it’s for any reason other than my tears having run out and dried up. I’m all out.
People keep telling me to “stay positive,” but what they don’t realize is you can’t “stay” something you’re not already feeling. I’m incredibly un-positive. Or I guess the word is…negative.
I’ve mentioned before that I’m simply not myself anymore — not when I’m like this. I’m like a shadow of myself, just waking up each day, dreading witnessing the happy sunlight hours from my couch, and then equally dreading the nighttime, which inevitably means discomfort, night sweats and a dozen trips to the bathroom.
Really, a dozen.
I kept track of my bathroom visits for a 48-hour period last week. That list was longer than any To-Do list I’ve made in years.
People also keep telling me to “keep fighting,” and saying things about being a “fighter.”
The truth: I’m not fighting. Not at all. I sit on my couch all day feeling sorry for myself. I do work, and I miraculously haven’t fallen behind with office work, but I’m not exactly doing tricep dips and push-ups in between bathroom runs. I’m not out getting fresh air or cutting out gluten, dairy and whatever the cavemen didn’t eat.
Finally, people are constantly, constantly asking, “Have you talked to your doctor? What does your doctor say?” as if he’s withholding some secret cure or medicine that I could have been on this entire time.
Yes, I’ve talked to my doctor. No, he isn’t helpful beyond “the Humira will take some time to kick in.”
I spend a lot of time breaking into hysterics about how much I hate my couch and how much I resent my living room, which feels like a prison. I also spend a lot of time feeling extreme anxiety over the medical bills that arrive every day and make no sense to me, and then more time desperately trying to figure out how to get a human on the phone instead of an automated recording insisting that I need to “please listen carefully because our menu options have changed.” No they haven’t! I always press 2! Nothing has changed!
My birthday came and went. It wasn’t a good day and my wishes didn’t come true. I also made the mistake of watching a few minutes of My Sister’s Keeper on TV while Brian cooked dinner (my favorite pre-marathon meal, filled with deliciousness and nostalgia), and that brought on a full-on, need-to-breathe-into-a-paper-bag meltdown. Bad idea, Fragile Ali. And then I continued to cry about how I really, really miss my old roommate. Conroy, can you move back to NYC now? Watching Step Brothers alone sucks.
I have also randomly been spiking fevers all week, which is pissing me off. Last night I didn’t sleep at all because my fever wouldn’t break, so I stayed up watching “Parks & Recreation,” covered in cool, wet washcloths.
There is hope moving forward: I gave myself my second dose of Humira on Friday morning, which was oddly exciting. I gave myself two shots in my stomach as I was laying in bed, and they were mostly pain-free and uneventful. Now I just need them to actually work. And I have my second appointment with the acupuncturist today, so maybe that will bring some mental relief if nothing else.
As much as I hate life and all the healthy people in the world who don’t seem to appreciate their health and good fortune (Oh you had a bad run because you were tired and sore? Wah! Shut up. You’re able to run. And generally leave your apartment.), I truly do appreciate all the love I’ve received lately. I’ve been showered with nice emails, comments and flowers, and I haven’t responded to any of those nice gestures because I’ve pretty much morphed into a bad, thankless person. But if I’m ever back up and running, expect a sweetly bedazzled thank you note from yours truly!
Oh and I think I’ve finally accepted that I won’t be running the Brooklyn Half Marathon this Saturday. I don’t think four months of complete inactivity makes for optimal training, but I don’t know. I hear rest days are crucial.
Hey Ali, newcomer to this blog and i love it! You’re really honest about all this and i wish doctors would read some of your posts to know what it’s really like to live with Crohns. I’m sorry you’re going through all this though. I’m in my third year of a Crohn’s flare-up and I did try Humira. it took maybe a month/month and a half to start really having an effect but by god it worked when it got going! I really hope it’s the right drug for you, its such a pain(on top of all our own pain) to try new medications and have to wait for effects to kick in!
All the best,
Ali, you are my favorite blogger and just reading about your struggles makes me tear up. However, your relentless positivity and hopefulness is amazing, don’t lose that. As a nurse, I know that is what will help this awful disease, as someone with a digestive disease I know how hard it is for you and unrelatable for others. I also comprehend how hard it is to have others tell you that they understand. Hold onto your hope and feel as you want to, you deserve it.
My heart breaks for you, Ali! So I won’t try to sugarcoat it and say that everything will be okay soon. You’re allowed to be angry and upset, but you should know we all still admire your strength — even if you don’t feel the least bit strong right now. I’m looking forward to seeing your smile and running shoes return to this blog. But until that sweet moment, rest up and take care of yourself. We’re all rooting for you. xoxo
Here’s something I’m sure you haven’t tried. I think you should ask your doctor about it.
Boo! Yuck! No! I am so so sorry to read that you are not feeling better. I did love the honesty in this post, however. When I was in the midst of my longest, most intensive and bed-riddenest (I just made that word up but I think it is real as of now) flare (23 months plus 10 for meds to kick in. . .) I tried to find some group or blog or some support online. I felt incredibly bitter toward all the people in similar circumstances who would write things like “I am just so grateful for my life as it is. . .” or “I know it could be a lot worse” or “I am still positive!!!!!!” I wanted to shoot them. Seriously. I was not grateful for my life or my body and I was resentful toward anyone who tried to understand my pain at all. I was completely consumed. I was an emotional skeleton. I was totally owned by my pain. I in no way glad that you understand this. I am only glad that you are honest enough to admit that you do. I sincerely hope you find relief SOON. I hope you find yourself on the worst run of your life crying tears of joy that your legs are moving. I pray you can leave your prison living room and wear yourself out sweating for a good reason!
Have you seen this study:
Not sure if this is a viable option for you, but I just read this article and thought of you: http://blog.sfgate.com/smellthetruth/2013/05/14/smoking-marijuana-cured-crohns-disease-with-no-side-effects-new-study-shows/.
It’s not fair and you deserve to be angry and tired and sad and frustrated. FWIW you are very inspiring. Last week during the night as I lay on the couch with a fever and feeling like someone was french braiding my intestines, I thought “Ali goes through this all the time, it’s not the end of the world, this too shall pass.”
Sad to hear your medication hasn’t started working. Really hope that your second injection starts making an impact.
Well this just blows. I keep hoping with every post, it’s going to be good news. You might be feeling negative (and rightly so…see aforementioned this just blows comment), but I’m still hoping your next post is the one where you rebound. Thinking of you.
I found your blog when I was doing some fitness research. The IBD dx is what grabbed me. My son is 9, he was dx’d at age 4 with Crohn’s. I am excited to read about your journey. But I am super heart-sick that you are feeling awful right now. I wish you the best.
Hey Ali, I just wanted to say I’m really sorry you are going through all of this and I hope something starts to work for you very soon. I also wanted to thank you for sharing your story. As a medical student who is graduating in the next month, hearing your struggles with medical professionals has definitely inspired me to try and be better for my patients. I’m sorry there is nothing I can say to make you feel better, but I just wanted to say thank you!
I’m hoping that you miraculously get all better and ready to run 13.1 miles by Saturday, so that you can come out to the Brooklyn Half. Get well soon, even if it isn’t soon enough to run the Brooklyn Half.
… so sorry Ali. I really hope the Humira works quickly!!!!
A VERY understanding employer… and it was a new diagnosis, so it was the two year dance of 5ASA, prednisone, 6MP, immuran, etc., etc. – you know what I’m talking about 🙂
I think hope kept me going! None of those medications worked, but I still had some hope there (possible proof I’m nuts). If you haven’t discovered it already, I find humira syringes less painful, and getting an over-the-counter EMLA patch also totally works.
You can do this. Four months is a LOT… but I have faith that you’re going to get to a medication that works .. that said, hopefully it’s Humira so it will come quickly 🙂 And always keep a mood-med in mind… it’s abnormal for anyone to deal with that amount of pain and isolation. I don’t think a reasonable human being is built to cope with that.
I agree with your suggestion of a mood-med. I regret not doing that for myself years ago when I was at my worst.
I haven’t read your blog before today… but I know what you are going through! I was there 3-5 years ago (yes, for TWO years!) There are no silver linings here, I get it. BUT… 3 years ago I DID start humira as well. I really, really hope it works for you like it has worked for me…. 3 years of remission – a full, clean scope REMISSION. There is the occasional bad day here and there, and sometimes its a few days, but on the whole I can work and get outside and play and generally just get back to being myself.
Good luck, crohn’s-y sister!
Two years…? Oh my god. I can’t do this for two years 🙁 How the hell did you survive? Honestly. How?
Even if you don’t run Brooklyn, I’m hoping, praying, wishing, sending truckloads of “luck” etc that you’ll at least get out there and spectate or just outta the apartment.
I hate the whole ‘stay positive’ and ‘be a fighter’ thing, because you can’t do anything other than what you have to do. You’re doing it. I’m sorry it’s terrible. I hope it gets better.
(and, also, I think they just say our menu options have changed so that you’ll actually listen, because i’m pretty sure no one does)
So… your flare makes my flare seem like a walk in the park. I need to be more grateful.
I just read your article from a few years ago in The Frisky and I got really excited when I read the part about your first Remicade infusion at Dartmouth because that’s where my doctor is/where I get my Remicade infusions! I don’t know why that’s cool, it just is.
Yay Dartmouth! That’s where I was diagnosed! It was the closest (an hour away…) decent hospital to me when I was growing up in New Hampshire. Hope they’re taking good care of you there! (After my appointments, my dad always used to take me to the cafeteria to get a brownie. I loved them.)
I’m so sorry.
PS: I still admire you.
I am so sorry this bleepin disease is kicking your butt. I finally achieved remission a few weeks ago (ironically, with Humira and Prednisone) but I’ve been there!! (Almost three straight years of flaring.) The worst is the Dr telling you to “wait”. What?! Wait for what?!
You are in my thoughts and prayers quite often. Hopefully, soon you can run a few miles as a big “EFF YOU, CROHN’S!!” (Those seem to be my fastest miles!)
Exactly! “Let the Humira do its thing.” Dude…the Humira is clearly on vacation right now. WHAT THE F ELSE CAN YOU GIVE ME? They’re idiots, I swear.
This sucks! Continue to let yourself be angry and frustrated and know that what you are going through is the worst! I am so sorry that anyone has to go through such agonizing pain. On top of all of that there is the emotional frustration and sadness that comes with a disease that has no cure! Never feel bad for being negative. Never. This disease is terrible. I will keep praying for you that it gets better. I have thought about you a lot, hoping that something gives and you start to feel better. Fingers, toes, legs and everything is crossed hoping for some relief. In the meantime I wish mildly bad weather on NY and great tv marathons.
Oh Ali, my heart is absolutely breaking for you!
I know that does exactly nothing to help your situation, but I’m sending prayers your way.
I am hoping round two will be much better.
So sorry to read this.
I totally respect your honesty about how things really are and know how frustrating it is to be in that place, not feeling positive and the world just going on around you. I truly appreciate your putting it all out there and many of us can relate and prefer the reality when things suck, instead of the sugar coating.
Hang in there! I’m impressed that you’re still able to work! I think I’d be on the first train home to get pampered by my mom and get away from everything. 🙁
Oh I had a MAJOR “I need my mom” meltdown the other day. Like begging her to get on a plane…and crying like a little brat. So yeah…that’s happening.
Continuing to send positive thoughts and healing vibes your way. I can’t imagine your pain right now, and can only hope for your recovery and relief.
Love from a stranger – another one!
My offer still stands for puppy cuddles 😉 This is awful and I pray a change happens for you soon. Go go gadget humira!
I feel for you, especially since you’re stuck watching so much crappy television, lol. I wish for you some cooler diversions while the meds kick in and the suck-o-rama marches its @ss out!
Just sending (((hugs))) and “I hear ya”‘s.
Everytime I pass by those frozen Pepridge Farm cakes now I think of you. This weekend I stopped and looked at those silly cakes and thought about how I really hoped you were out enjoying your weekend. I don’t even know you, but I really hope your new meds kick in very soon. You deserve it. Keep taking it day by day, hour by hour. What doesn’t kill you makes you stronger…. or so they say.
I finally got one and, go figure, I was NOT impressed. It wasn’t the amazing cake I remembered from my childhood. Clearly my taste buds are just SO sophisticated now 😉
With every blog you post, happy topics or not, I’m always so impressed by your talent for writing and always enjoy reading what you have to say.
I can’t help but roll my eyes slightly when reading your recap of people asking “are you okay? Just think positive!” etc. Rolling my eyes because I’ve recently been the recipient of similar statements. My mom passed away unexpectedly at the beginning of April, and while I know everyone has the best intentions when they’re talking to me, the fact is no, I don’t want to hear about your mother’s father’s sister’s cat’s mother’s passing.
Although I totally wish someone would send me a flower puppy! 😉
In the meantime, you could take up my recent hobby of stalking buzzfeed for all the latest cute animal posts! http://www.buzzfeed.com/pedros11/undeniable-proof-samoyeds-are-irresistible-ag52
Oh gosh Cynthia, I’m so sorry about your mom. I can’t even imagine… And you’re right: People mean well, I know they do, but sometimes it’s just so…unhelpful and misdirected. Thinking of you and sending gentle virtual hugs.
Thank you. I really try not to bring up my mom in blog comments, but it seems to just keep feeling relevant! I really like the term ‘gentle virtual hugs’ too.
I did think of you the other day when I saw something online about the marijuana/Crohn’s link 😉
Praying for you…
I’ve been checking your site daily hoping for a miraculous “I’m all better!” post. I know it’s coming at some point but am sorry today is not the day.
Your comment about healthy people having a bad run really hit home. I did have one of those “poor me, sore legs” runs this weekend. I am taking your words to heart, to appreciate my ability to run and to STFU about small problems.
Fingers crossed for the Humira to kick in super soon!
Not sure you will really appreciate it ( there’s running involved) but be sure that every time I go for a run I think about you hoping you will get better soon.
I appreciate it 🙂 Keep enjoying every run you can go on!
I’m a scientist. I’m working desperately on a body-switching system for you to deploy. I’m sure plenty of us would willingly trade places with you for a day or two. Judging by the number of friends, family, and blog-friends you have, I suspect you could get AT LEAST half a year out of us. Perhaps by then the Humira would have kicked in. [And you might need to take your own body back for the stomach injections…those might be hard to sell someone else on. ;-)]
So hang tight – I’m working on it. 😉 In the meantime, enjoy a few cupcakes, and some photos of Tyler, and feel free to whine/mope/complain.
PS We have a stuffed elephant named Ellie, and rhinoceros named Rhino, and a polar bear name P. Bear. If we had a llama, it would probably be Double L, at best. If you’re bored, perhaps you could help us with a more inventive naming scheme??
Haha thanks, Holly. I support your science experiment fully! And you made me smile with your super creative animal names. “Double L” is my favorite. Haha.
you still have your humor and your sarcasm! thank god this disease hasn’t taken that away. I have a feeling the BKLYN half is going to be a Sh-t show (pun intended and i hope you took it as funny or else i’ll feel like an idiot) as far as NYRR events go. Seems like they have expanded the field a whole lot and they have 2 waves. Maybe i should carry a picture of your face on a stick with me so i can hold you up and MarathonFoto can get a great pic of you crossing the finish line=)
Seriously though. I really don’t know what to say. I totally know how hard it must be to hear the “stay strong and be a fighter” bs. I will pray that dose #2 of the Humira kicks in and gives you nothing short of a miracle. You DESERVE to feel good and this disease is being a jerk to you.
Just keep looking at Tyler pics…..
Ali, sending you lots of Hugs, Healing and Hope to your way. You soon Will be feeling better, don’t let this bring you down. Here to listen to you. xoxo
I am a generally healthy person who is allergic to pollen. Normally this means I have a scratchy throat and a runny nose for a few days. This year has kicked my butt. My airways have been constricted for THREE WEEKS. I have to “sleep” sitting totally upright (because I can’t breathe laying down) away from my boyfriend (because I keep him up with my hacking cough that I sleep through now!), I had a fun full-body rash that steroids eventually cleared up, and I haven’t been able to go for a run in three weeks. I’m wheezing and coughing after walking up a staircase. And then I’m just generally feeling the effects of three weeks straight of inadequate sleep. I went to see my doctor for MORE drugs, and she said there’s nothing more they can do, I just need to wait WEEKS for it to leave my system. I cried when she told me. And all I’ve been thinking is “how do they do it?”. They being people with chronic illnesses. I have ALLERGIES and I’m a miserable, mopey mess. I’m having a hard time staying positive and I know this is so so so very minor! I think of people battling cancer, my friend with CF, you with your disease, and I have to say: you people amaze and inspire me. Being positive and happy when you’re not at full health is the hardest thing in the world. The fact that you’re trying is enough. You are amazing. I can’t wait for you to come out the other side of this.
Oh Ali, I’m so sorry. I wish there was something that would make it better immediately and forever. I’m keeping my fingers crossed for you.
I am so sorry.
I feel for you. I spent a similar amount of time on my couch in 2007, watching everyone else run and play and go outside and live. I wanted to be a human, but I was a blob. It sucks, and there’s nothing that can make it better except getting better, which, out of reach as it is, means that nothing can make it better.
If there is any truth to a collective consciousness, I hope that all of your friends/family/fans/readers band the heck together out there in the ether and kick that Humira into gear.
we’re rooting for you.
I have a stuffed elephant named cookie and I put my niece’s premie diaper on him. I’ll send you a picture!
I feel you Ali, I do! It sucks and I’m so sorry you’re going through this. I have this awesome pic that says something like “Auto-immune disease: because the only thing tough enough to kick my ass is me.”
Like Jen said, hopefully your immune system will wave the white flag and stop fighting. I think sometimes the most active and healthy people have the hardest flares. Good luck! Rooting for you!
I don’t have much to add other than to let you know that I am thinking about you and hoping so much that you feel better soon.
Two years ago at this very same time, I was in your exact same spot. I cried … a lot. To my parents. To my GI. To everyone. And I was too weak to work or do anything aside from walking from the bed to the couch and back to the bed. I remember my doctor telling me that it sucks when things are bad, but they will eventually get better. And they did for a while until I ended up in the hospital three more times. But eventually my body waved the white flag and eventually gave in to the meds and I started feeling human again. I wish I had some words of encouragement aside from saying that things will get better, and this period of time will seem like a cruel joke someone played on you. I hope the Humira kicks in for you soon and things get back on track for you! 🙂
Thanks, Jen. I’m so glad you eventually started feeling better. Here’s hoping my body’s white flag gets up in the air ASAP…
I’m so glad you have Brian through all of this. A sign of a good partner is definitely one who can see us at our best yet love us equally when we’re at our weakest or most vulnerable.
Ugh…this just sucks. I’m sorry you have to deal with this bullsh*t.
Ali. So sorry to be reading this. Your blog had this infectious excitement when you were training for your marathon and going on 6am runs. I hope you get to resume that life soon!
I hope so, too!