The 26.2 Million Dollar Question

Date: October 28, 2016 at 8:29 am- by Ali- Comment(s): 58

Am I running the New York City Marathon on November 6?

I’m getting that question an awful lot lately! And in short, I don’t know. I hope so. I really want the answer to be yes, and in my mind, yes, I am still running the marathon. That’s always been the plan, and I haven’t abandoned it, in spite of how the last few weeks have gone.

Before I go on, I’m going to be totally honest here: I don’t care what people think of my decision. I may not end up running the race, but if I do, that’s my choice. I know a lot of people won’t agree with it. People will tell me I should give myself a break, that I’m not properly trained, that I’m stupid. And that’s fine.

JK. NOTHING TO SCRUTINIZE HERE! #flawless

JK. NOTHING TO SCRUTINIZE HERE! #flawless

But if that’s where your head is at, I implore you to consider my position.

I live for the days I get to run — the days when I feel healthy, and when I feel like “normal” people get to feel every single day. If November 6 is one of those days, then hell yes, I will be lining up at the start of my favorite race. If it’s not one of those days, then I won’t.

I’m not a dumb girl. I’m really smart, actually, in lots of different ways! So if I do run the marathon, yes, I have considered loads of factors. I’ve considered the fact that beating my body into the ground for a few hours won’t be easy. I’ve considered the possibility that I may run the race and feel fine, only to regress afterward. I’m aware that I’m undertrained. I should’ve done more 20-mile runs and regular weekly sessions over the last month. Trust me, I wish that were the case, for so many reasons. I’ve considered that even if I do make it to the start line, I may have to then spend the race hopping from one porta-potty to the next — or that I may not even finish. Being able to run the marathon could signal a successful turning point in where my health is headed, or it could lead to a setback. I know. I guarantee anything you might be thinking, I’ve already thought it — a lot.

This is me, DEFINITELY caring what people think about my decisions. JK JK. I only care about my dog.

This is me, DEFINITELY caring what people think about my decisions. JK JK. I only care about my dog.

But I also know what being out on that course could do for me mentally — and I really need that right now. Will I PR? No. Will I even try to do that? LOL no. Will I take walk and bathroom breaks as needed? You bet. Getting to the start line alone would feel like a victory to me; getting to enjoy the race and make my way to the finish would be the icing on the cake, the chocolate chip in the pancake, and the extra cheese on the pizza.

So before you play doctor or consider that you know my body better than I do, keep in mind that unless you have been in my exact position, you may not understand where I’m coming from. You may not get why I so badly want to be able to run, and you may not get why I’m not content to just sit around and wait for my body to get better. I don’t expect that to make sense or seem rational to most people.

I don’t intend for this to come across as defensive, but when you talk about your health, you get a lot of opinions — some of them justified, some of them actually pretty helpful, and some of them wildly condescending. That’s just what happens, and that’s OK. As always, I appreciate all the love and support I get here and beyond. With that, here’s where I’m at right now…

PHOTO SHOOT! (It was, actually, as part of the Women's Running/Project Start campaign. I don't usually pose in the middle of the track.)

PHOTO SHOOT! (It was, actually, as part of the Women’s Running/Project Start campaign. I don’t usually pose in the middle of the track.)

I went to the doctor last week — yay!

The appointment went well. I was so happy to see my favorite doctor — I heard his voice in the hallway and my eyes welled up with tears — and he gave me a big hug when he walked in the room. (There’s a long and complicated backstory about why it took so long to get an appointment with him. It involves health insurance mayhem and all kinds of BS beyond my control. Fun!)

He asked what’s going on, so I explained how I’ve been feeling and then said, “So I have two things to address…”

“First,” I said, “I’m supposed to run the marathon November 6…”

“And you will,” he said, so matter-of-factly. Like, Yeah, duh, you’ll run it, we’ll get you there. We’ve done it before. NBD. You’re my favorite patient. (May have ad-libbed some of that. I can’t recall.)

YAY running!

YAY running!

So our plan is twofold — not unlike our plan a few years ago when I was in a somewhat similar situation.

Step one was to start on some stuff that should help me get comfortable enough to survive the race in nine days. Step two is the long-term plan that’ll keep me healthy for life. Or at least for good chunks of life.

The plan for the long-term is pretty simple (hopefully). My doctor has wanted me on Stelara for years, but it was never FDA approved specifically for Crohn’s disease, which meant that our years of trying to get special approval for it failed. (Seriously, my doctor wrote letters to the insurance company saying I needed this drug, and they repeatedly denied it. An insurance company said no to a doctor, therefore withholding a drug that could’ve vastly improved my quality of life. Unbelievable.) But it was approved for Crohn’s last month (on our wedding anniversary, awww), so it’s finally an option for me!

I had bloodwork done at my appointment and got to go through the lovely process of collecting stool samples. Once they have all those results, they can submit them to the Stelara people or however that works, and then I should be able to start on a regular Stelara routine. (Stelara is very similar to the study drug I was on, so my doctor thinks it’ll be my best bet. I agree.) That will take a little while, though. Of course it will.

Look how scary we are!

Look how scary we are!

In the shorter term?

My doctor prescribed me two variations of Uceris, which is a steroid that specifically targets the colon (where much of my Crohn’s lives in a very angry, inflamed state). It’s administered orally and, uh, rectally. (Yeah, I know. I haven’t felt cute in a very long time.)

Of course it couldn’t be so simple — my new insurance company mistyped my birthdate when they enrolled me, so the pharmacy couldn’t process the prescription and then they said I needed “prior authorization,” and just all this junk that made something easy more difficult. But it all worked out eventually. I have my medicine now!

Clearly VERY excited about the new meds...

Clearly VERY excited about the new meds…

Is it working? It’s hard to tell. Last week was a great week. I was able to run, my happenings in the bathroom were improving, and all signs pointed to a comeback. All those improvements actually came before I started the medicine. (Magic!)

This week, though? Well, it’s like I took five steps forward and eight steps back. After Sunday’s run, I was absolutely certain I’d be able to get to the start line of the marathon. Today? Who knows. That’s life with Crohn’s. Should I not have run? Is the medicine not working? Are all these supplements and probiotics a waste of time (and money)? I wish I had more answers, but I’m just taking it all one day at a time, and I’m giving my body extra love and rest this week.

I generally feel crappy in the morning, but I feel better as the day goes on. That bodes well for a 10-something start time, should I make it to Staten Island!

I'd rather be running, but this isn't a bad place to be.

I’d rather be running, but this isn’t a bad place to be.

So that’s where I’m at with my health. We have a plan, now we just need things to fall into place so it can all take effect. I will never not be frustrated with all the bullshit that goes into actually getting treated. Nothing ever feels easy when I’m sick, but hugging my doctor sure did perk me up and fill me with hope that it’ll all be OK soon.

Yes, I care about the marathon. The New York City Marathon is really special to me. If it were any other race, I wouldn’t even consider running. But this is the best race in the world, and I want to be a part of it.

I’m a big believer in the “life is short” way of living. That’s why I do a lot of the stuff I choose to do. I don’t want to wait to pursue things I’m passionate about. (Read this.)

And right now, I want to run the New York City Marathon on November 6. So if I wake up two Sundays from today and I’m up for it, I’ll be on the bus to Staten Island with a few thousand of my friends. If I don’t get to run it, well, I’ve heard marathons happen every year, every month, every weekend. Sitting it out will be hard and sad, but I’ve gotten through this before, right?

LOOK AT THAT MANE. #flawless

LOOK AT THAT MANE. #flawless

One day at a time.

ANY QUESTIONS?

58 Responses to "The 26.2 Million Dollar Question"

If you do decide to run look for Front Runners at the mile 24 water station. I promise we’ll be there with a big cheer for you!

Elizabeth says: October 28, 2016 at 8:47 am

You do you, Ali! Good luck! I hope it works out for you.

If you decide to run and you want to come to my house I will happily drive you to the start. I live in Staten Island. You can use my bathroom until the last minute and it’s 20 min to get u there (with plenty of public bathrooms along the way). I could afford you the luxury of getting there much later in the morning so you don’t have to wait around as long. I’m sorry bout all the med insurance shenanigans. That really is the worst. I am spectating this year but every time I see the commercial for the race on tv I get sad.

NYCM is such a giant party, I hope you get to be part of it, however that ends up looking! All any of us can do is take life a day at a time, remember to smell the flowers, pet the dogs and be grateful when we are able to get outside and run! I sure hope you are out there, I may be down there cheering for some friends and will watch for you…and if for some reason it does not work out on Nov 6 you should come run Philly with me on Nov 20!!!

Jillian J says: October 28, 2016 at 8:54 am

STANDING UP AND CHEERING FOR YOU!!!
You have been through so much and you know you best. So do what you need to do and don’t apologize for it!

I hope so badly you get to run!! I love your attitude towards this whole mess – you’re an inspiration!

Fingers crossed for the best on November 6!

Hoping you feel wonderful this coming week and that your dreams of a 2016 NYC Marathon finish all come true next Sunday. <3

That doctor does sound great, I’m so glad you found one supportive of running! Feel better and hope you are running NYC!

So first it feels weird to become someone who comments on someone else’s blog. But yay new meds and good luck with getting the Stelara approved! Also yay getting into your doctor! I had a crummy doctor then I got an awesome one and she is hands down one of my favorite people in the world- so I get the tears of happiness at hearing your docs voice. I hope you get to run the marathon and if your guts say no then I hope you treat yo self to something you enjoy nearly as much. In short here is to feeling better soon and loving every run (no matter the length) you get to do! And as always thank you for your honesty and being so authentically you when you talk about your Crohn’s and running. This blog helped me so much during my own flare. You have a way of finding the good in the bad times that helped me change my own mindset.

You know your body better than anyone, and no judgement here. Enjoy every step of the marathon. Cheering you on from DC!

As a gastroenterologist, I say “you go girl!” Every patient is different and do you! And thank you for expressing these frustrations. Healthcare both on the receiving and giving side has been frustrating for all. In the midst of this, I want to express that I often refer to your blog with my patients because your voice is powerful and hope that you offer a sense of community for them. I can only empathize with them as a physician and often as a runner, but you can as an individual dealing with the “crap” both literally and figuratively.
I wish you only the best on November 6th, whether it be at the starting line, running through the Burroughs, or sitting on your couch!

thinking of you. can’t wait to cheer for you (or with you) as the day takes you!

I approve with sending stool samples to the insurance jerks who deny you 😛

approve OF*

Love this idea!!

Won’t be any judgement coming from me! The Ellie lion is just adorable btw.

The fact you even have to write this post makes me sad. Do what is right for you, Ali and f**k anyone who thinks it’s not the right thing to do.

Don’t ever apologize for doing what you know your body is capable of only YOU truly know your body.
I ran back to back marathons while flaring Chicago was in every bathroom and NYC I actually fared better (bc NYCM is magic).
If you’re out there, I will be on the lookout cheering!

I really really hope you get to run the marathon, Ali! And more than that, I hope this flare will end ASAP and that your health will be restored. I’m so glad you’re getting to start Stelara and hope it’s the key to many flare-free years.

Also, Uceris helped me get out of a UC flare last year, but I didn’t see improvement until after 2 weeks or so.

And also, stool samples are the worst. It’s crazy there’s not a better way!

ugh, insurance companies knowing better than the Doctor….SO ANNOYING!

Have a great run in NY if you get there!

I once went to bed the night before a marathon, having no idea if I would be running it the next morning (IT band injury). And I did run it! Was it a good idea? Who knows?! Would I have regretted it if I hadn’t? Who knows about that also! And when you have a cute puppy to snuggle with either way, you kind of can’t lose.

Ali – I truly hope you get to run. You deserve every happy minute of running you get. People on the internet want to criticize everything and haven’t learned yet that you can judge silently in your head without burdening the judgee with your mean thoughts.

Not quite the same, but I’ve been struggling a lot lately with oscillating between wanting stability and doing what I really love. My mom has early-onset dementia and she’s 63 (diagnosed at 58) — she worked her whole life 24/7 as a police officer and the year she retired, she was diagnosed with dementia. I don’t want to wait to have fun, to do things I love (though I think she was doing what she loved – she just never did anything *else*), and I think I needed the reminder of the “Stop Waiting” post. So thank you. I’m a writer, have wanted to be a career writer since I was a child, but I forego writing for practicality (I work in tech) and I need to stop. I hate it and I wait for the days to end every day. So — definitely not the same as a miserable, awful, debilitating Crohn’s flare, but I (in a long, roundabout way, apparently) just wanted to tell you that I love your outlook on life and that you inspire me to be better. Thank you!

And if (WHEN HOPEFULLY) you run NYC Marathon, you’ll have at least one person out here in LA cheering you on loudly.

Good luck. I hope you do run.
I would be very interested in a post on your experience with health insurance over the years. I know it’s a polarizing topic, frustrations are high for both those giving and receiving health care, but hearing your experience is very impactful and compelling for change.

F all the haters. Sending you so much love and marathon-running thoughts!

http://www.medscape.com/viewarticle/869259
This article states that Stelara has been approved by the FDA for Crohn’s as of 9/26/16

Yup, it was approved for Crohn’s disease, so now we’re just waiting for my insurance company to approve it!

I SO hope you are able to run! As a fellow crohnie and runner, I know how much this would mean to you. Thank you for being such an inspiration!

You do you, gf. I don’t have Crohn’s, but I have a chronic illness (related to my hemoglobin/blood count levels) and can 100% understand what you said about people having an opinion on your health. I was told for years I would never/should never/could never run or do any endurance sports, or a lot of other things for that matter, and I’ve learned to ignore it all (I mean, not to do things that are insane and endanger myself, but you know what I mean). You know your body, and your situation, and that’s all that matters…. not what some invisible person behind a computer screen or social media account things. Sorry for the ramble, I feel strongly about this stuff. Cheering for you over here in Cali. 🙂

Wishing you the very best with your health and running! You are an amazing young woman and I admire your fortitude and positivity.

I also had the 26.2 million dollar question this year. I flared up suddenly in May (I thought the pain was from cramps). I ran a 10km race one day (with “cramps”) and the next day I ended up in emergency with a massive infection and doubled over in excruciating pain! After my hospital stay, surgery was still looming, my 26.2 million dollar question still on my mind. I met the surgeon who said I didn’t need it and said it was okay for me to run again. I decided to run my marathon this year, and yes, I did have many people think that I really shouldn’t have. It wasn’t a PB, and I wasn’t going for that. I just wanted to finish. We know our own bodies best and you will make the best decision for YOU. I hope you make it to the start line on November 6th but if you don’t that’s okay too. I’m sending you happy positive vibes your way! Hugs! Cheering for you in Canada! xoxo

Hi Ali,
I’ve never commented before but felt like ide just in to throw in my support for your ability to run the marathon if you feel up to it! Crohn’s sucks especially when your an athlete (yes I know I have it too) and I personally feel like when you have the chance to do what you love you should jump at because you aren’t always able too. Besides, Im a triathlete and many of the people in my sport doing ironmans never run anything over 15 miles before taking on the 26.2 leg of the race. So by that standard you are super well trained 👍 Just think of last months forced rest as the a really strong taper! Best of luck with whatever you decide!!

This post gave me all the feelings. I have a couple of chronic illnesses and wow, can I relate to your frustration with unsolicited advice/opinions. I know my friends mean well but it’s just exhausting telling them “yes, I tried that drug/alternative treatment/diet/etc and it didn’t work.”
I completely understand why you want to keep running. When our bodies feel like the enemy most of the time, running reminds us what we CAN do and that feeling of freedom & joy is priceless.
I hope the new treatments help you!

I am wishing the best for you 🙂

But most of all, that picture of Ellie is the greatest thing I have seen on the internet in years. However did you snag such a perfect photo??

Hi Ali- I am a physician assistant in dermatology, where we also use Stelara, but for psoriasis! I read your blog a lot and even have one of your I heart sweat shirts from many moons ago. Anyway, I just wanted to commend you on your courageous spirit, transparency and great attitude. I hope you can run the marathon and kick its a$$!!! I’ll keep you in my prayers on race day- You are a true inspiration! Never give up!

I ran a marathon during a UC flare a few weeks ago – no regrets at all. I wasn’t sure until the morning that I would run, but at that last minute decided to go for it and had a blast (toilet stops and all!) I felt dreadful for a few days afterwards physically, but emotionally but was exactly what I needed. Fingers crossed this works out for you. xxx

p.s. I love how many IDB runners there are in these comments!

Firstly, your dog is awesome. Secondly – I really hope you get to run the marathon! I have been reading along with your training all the way and rooting for you to get better. The atmosphere of these races is so amazing that it doesn’t matter if you can’t run fast, if you have to take walk breaks and toilet stops. As long as you’re well enough to actually enjoy it that’s the most important thing! And finally – I’m from the UK and reading about your doctor / insurance struggles has made me so SO proud of our NHS. The system seems really messed up when you can’t get the help you need when you need it and when an insurance company can stop you having something your doctor says you need. I really hope the new drug does its job for you!

You do you! You are the only one who knows what feels best for your body on any given day and keeping my fingers crossed that you make it to the start line next week.

ANY QUESTIONS? –> please tell me that’s a David Pumpkins SNL reference.

I’M DAVID S. PUMPKINS!

I sure hope you are there! I’ve been reading your blog a long time and just last week I took care of a young Crohn’s patient in the ICU AND I’m going to be in NYC running the marathon. The whole week I’ve been watching your blog and wishing you would feel good enough to run. Me and my girlfriend got in by lottery and if you do decide to run it and I happen to see you….well…Jazz hands! Whatever you decided will be great for you!

Ali, I’m rooting for you. Whatever choice you make. Hugs from Maria, a fellow Crohnie.

I’m sorry you feel you have to justify your decisions on the interwebs. Cheering you on, whether you stay in bed or run a marathon, from rainy California.

You are amazing! I am running NYC as my first marathon and hope to share the course with you, but at the end of the day its not about this race its about a life full of races and you are the only person who knows if this is is worth it for u! feel good 🙂

I love that your Dr is so positive about getting you to a place where you can do the things that are important to you, rather than writing them off. And to the people who think they know better than you do, the saying is all about a mile in in someone else’s shoes before you judge, so think on that before you assume someone is making a dumb choice- Best wishes and crossed fingers from London for Sunday.

Christine says: October 31, 2016 at 1:52 pm

you are awesome! that’s all

Do what you gotta do – nobody knows what’s right for you except you.

By the way, I love your dog and her mane. I have a bulldog named Grump who has the exact same toothy smile (minus the gap) and I think if we were neighbours they’d be friends.

Amen, sister. Getting sidelined SUCKS and I applaud and understand making a layered plan to do your thing to the extent that you can, whenever you can. If my recent experience* is any indicator, for every condescending person thinking You Should Not Run, there are five other people who are totally inspired by your determination and outlook.
*(I don’t have to deal with Crohn’s, but people had Opinions about how long I rowed while pregnant.)

I wish you the best of luck!! I think you should go for it and just see how it goes! I absolutely LOVE Ellie in her lion costume! Makes me smile! Have a great race!!

I hope to see you out there running – I’ll be cheering at 93rd and 1st, runner’s left! You do what’s best for you and your body and what your body can handle on race day. (But glad the doc okayed it too, ha.)

Hooray for finally getting a drug that may help! Healthcare is a mess here, as I’m sure you know a little more well than the rest of us. 🙂

I seriously can’t believe people exist who feel they need to “direct” you how to handle your health. Either I am so evil that no one would dare or I just don’t have enough people around me (a possibility since I work completely alone) but I have never had someone yap at me about this topic. I want to smack the living sh*t out of whoever has the gall to do this to you. So angry on your behalf right now.

End Rant

I really hope you can run the race. I know you’ve been working for it and even if the last weeks haven’t been ideal what with your Crohn’s flare up, I think you will make the decision that is RIGHT for you.

I will be sending positive vibes for a happy, healthy race day.

#DoYou and also Ellie’s costume is amazing! Roar! Sending you good vibes!

Sending good vibes!

Teresa Webb says: November 6, 2016 at 3:43 pm

I just read through this and can totally relate. Any start line that you can make it to is a huge blessing and brings so much happens. I understand the wavering of being unable to fully commit. I am starting the Stelara trial for UC. So fingers crossed it works. I am sorry you had to go through so much insurance trouble. GRRR! Love seeing you smiling and happy. Xoxo

Hi Ali! I saw you got to run yesterday & couldn’t be happier! What a fantastic day to be in the city!! I hope you had an amazing incredible day! ❤️