Where I'm At Right Now

Date: October 11, 2016 at 11:29 am- by Ali- Comment(s): 41

I’m not great.

Part of me feels like — OK, knows — I should stop complaining. Other than my health, I have plenty of things for which I am very grateful. I have wonderful friends and the best family, I have a good job that affords me the luxury of working from home (or the bathroom) as needed, and I have a cute puppy who loves me unconditionally. Plus, aside from said puppy, I’m only taking care of myself here. I don’t have to worry about kids or dependents. (People who have children, WTF do you do when you get sick?)

But then there’s my health.

And as often as I try to force a smile and see a rainbow through the clouds, I’m just not feeling all that right now.

This weekend was pretty tough — physically, sure, but more so mentally, which is where this disease can really sneak in and beat you down. (More on that here.) This weekend, according to my pre-made plans, was going to be awesome. On Saturday, Ellie and I were going to run her very first race together. Then, we were going to head to Rhode Island, where I’d run the Newport Half Marathon on Sunday with tons of friends. It was going to be great. One for the books!

Instead, I spent the weekend on the couch at home. I came home from work Friday night (I have a new client which means working in an office a few times per week!), changed into pajamas, and didn’t change out of them until Sunday.

This wasn't comfortable at all. But the company was top notch.

This wasn’t comfortable at all. But the company was top notch.

I actually set my alarm for Race Time on Saturday. You know, just in case. Just in case I woke up and thought that, miraculously, I could get through three miles of running. So I got up, spent a few hours going back and forth to the bathroom, and finally accepted my reality. I wasn’t going to racing. Sorry, Ellie. (I felt terribly guilty, even though she obviously had no idea that she was supposed to run a race that morning.)

Then I thought maybe I could go to a yoga class.

Well, I couldn’t get myself together in time for the 9:15 class.

Then the 11:00 class came and went, too, and I was still stuck in pain and in the bathroom.

Back to bed...not a TERRIBLE place to be, actually.

Back to bed…not a TERRIBLE place to be, actually.

I told myself to stay offline, since I knew perusing my social feeds and seeing everyone out running and racing and pumpkin picking would make me sad. But of course, when you can’t leave the house and TV doesn’t offer much entertainment and you can’t even walk your puppy around the block, you eventually turn to Instagram. And Snapchat. And Twitter. And Facebook. I’m on Level 723 of Two Dots, which is equal parts impressive and depressing.

So Saturday was tough. I cried. A lot. I felt sorry for myself. A lot. I cursed all the healthy people out running — the people who have missed runs because they were hungover or tired or didn’t feel like it, but never because their body physically wouldn’t let them run. The lucky, happy, healthy people who don’t realize how lucky, happy, and healthy they are… (I know, I know. I sound like an asshole.)

Hyperbole and a Half, speaking my language.

Hyperbole and a Half, speaking my language.

I may have told myself I’d stay positive Saturday morning, but by Saturday afternoon, those feelings and ambitions were long gone. Brian took Ellie for walks and out to play while I sat on the couch and moped, or sat in the bathroom and, well, played more Two Dots. Brian tried to get me to join them, because “getting outside might make you feel better.” But I didn’t even want to try. I’ve tried and failed enough in the past few weeks that trying isn’t really fun anymore. It’s just an anxiety-filled disaster waiting to happen.

Finally, around 8:30 PM, I decided to take an Ambien and put the day behind me. I was over it.

That was Saturday, though.

On Sunday, I was signed up for a SoulCycle class and damnit, I was going to go to that class. (Mostly because if you don’t cancel before 5 PM the previous day, you lose your $35 class.) So I woke up extra extra early and, unsurprisingly, I felt horrible.

PRECISELY.

PRECISELY. (via Hyperbole and a Half)

I left the apartment twice to go to the ferry, and had to run back to the apartment both times to use the bathroom just one more time. Finally, though, I made it to the ferry (where I had to use the bathroom again, and made it out just before they stopped letting people board the boat). And then I made it to Manhattan. And then, even though normally I’d walk from the boat to the studio, I took a cab (also because it was raining) and I made it to SoulCycle.

And I survived the 60-minute spin class. I’m such a hero, I know.

I felt terrible during class. It’s amazing how quickly you lose fitness, and how quickly your muscles fatigue when you stop using them. I barely put resistance on my bike, and I struggled to lift the 3-lb. weights. (Wasn’t I just flying around the track and running 16 miles in Vermont? How the mighty-ish have fallen…)

When I walked out of class, a friend asked me how marathon training was going, and I just smiled and said “good,” lest I launch into my little sob story. He didn’t need to know all the not-good details. And when I picked up my phone and saw all the Chicago Marathon tracking alerts, I had the good sense to put my phone away, at least for a little while.

I’d love to say I spent the rest of Sunday feeling inspired and empowered and going to Whole Foods. But I didn’t. I came home, took a shower, and retreated back to the couch and my pajamas. I was sad and lonely — anyone will tell you that Crohn’s can be incredibly isolating — but I also didn’t want to see or talk to people. (Aren’t I a peach?!)

Ellie isn't supposed to jump up like that, but she was helping me open the mail, so it's OK.

Ellie isn’t supposed to jump up like that, but she was helping me open the mail, so it’s OK.

I’d also love to say I’m feeling positive today, since it’s a new week, and that I’m absolutely certain I can fight this flare and still run the New York City Marathon in a few weeks.

But that’s the thing: The marathon is in a few weeks now.

My last long run was a long time ago. It’s been weeks since I’ve run a mile, and even longer since I ran a mile without making a bathroom stop. The pain and discomfort are constant, and I don’t even look at my training plan anymore. I used to try to run and sometimes I’d fail, but now I’m not even up for trying.

And, because of insurance issues (ugh), I’m not seeing my doctor until October 19. That feels like a lifetime away right now, and even once I see him, there’s no plan in place yet. So we have to figure out next steps. I know he’ll do whatever he can to help me get back on my feet, whether it’s in time for the race or not, but I also know how this goes sometimes. I know that sometimes it takes a while. I’ve come back from flares overnight before — seriously — but I’ve also spent years at a time in this icky little place. TBD. So much TBD.

Because when insurance suck and doctor's offices suck and everyone sucks, there's a great company that will come to your home and give you a fluid IV, no questions asked. (And no insurance necessary! BRILLIANT.)

Because when insurance suck and doctor’s offices suck and everyone sucks, there’s a great company that will come to your home and give you a fluid IV, no questions asked. (And no insurance necessary! BRILLIANT.)

I know to take one day at a time. I know it helps to maintain a positive attitude. I know sometimes you have to fake it until you make it. I know I’m lucky not to have all the side effects and symptoms right now, like the fevers and the night sweats. I know that, expensive as this disease is, I had the good sense to saving money starting at a young age (thanks for the pro tip, Dad!) for times just like these.

know all that. But it doesn’t make it any easier.

An upside to wrap this all up? There are little victories sprinkled throughout my days, and for those, I am very grateful. Last night — after writing most of this post — I managed to pick Ellie up from school and walk her home without any emergency stops. We even stopped and played with her friend Peanut in the dog park for a while. The temperature was perfect, the sunset was gorgeous, and the air felt crisp. (I realize it’s been fall for a little while now, but I barely get outside, so this was news to me.) I made sure to breathe really deeply, and in those fleeting moments, I felt happy and grateful.

SAY I'M A BIRD.

SAY I’M A BIRD.

And all the while, my pants were unbuttoned to avoid putting pressure on my stomach.

So that’s where I’m at.

HOW ARE YOU?

Posted in Crohn's disease and tagged -

41 Responses to "Where I'm At Right Now"

Oh Ali, I’m so sorry. I don’t know you but I’ve been following your blog for so long and so I feel like I do. 🙂 It’s so isolating to be so sick (I have UC, so I get it). I love that you are trying to fight against the hopelessness, but I also know that knowing that things could be worse just doesn’t help sometimes. I hope you can get some help from your doctor when you see him, and I hope that this flare gets the heck out of here ASAP.

Kelly in Texas says: October 11, 2016 at 12:09 pm

I’m with you, girl. I’m not sick right now, but I always say that “Crohn’s is a lonely man’s disease”…

You are NOT an asshole. You are reminding us all to not take our health for granted! To get out and enjoy what our body is capable of while we still can. Thanks for that.

I wish nothing but the best for you, and think of you often Ali. I hope you are able to get out with Ellie more often this week 🙂

Complaning is OK. You have every right to. You are human and are entitled to have feelings whether they are positive or negative. I totally get it. I’m rooting for you and sending you a big HUG.

<3 Sending you lots of love, Ali! I hope you feel better soon.

Hey Ali, I;m so sorry you are going through this big flare – sending you fast healing vibes.
I’m having a (minor compared to yours) colitis flare too – so can definitely understand how tough it is for you:-(

ugh im sorry al.

Ali, I am so thankful you continue to update us and wish that we each had fairy dust we could sprinkle to make your days return to running and smiles. Here’s hoping that there are brighter and more run-filled days in your future. I’m so thankful that you have two bright spots in your life in that sweet husband and adorable pup.

You have given me the gift of laughter over and over for 4 years now (yep I found your blog right around the time of hurricane sandy). I don’t think anything can be better than your wisdom tooth extraction drugged up video. I so wish there was something as powerful to give in return. Hang in there. and if you want company I’d be there in a second. I freelance remotely. My laptop and my dog in tow.

I’m so sorry for you that you’re going through this hell. I’m a long time reader, but first time I’ve ever left a comment. I’m currently in the worst flare I’ve ever had and completely understand all the feelings you described. I won’t pretend to know how you feel, because it’s different for everyone, but I hope your appointment on the 19th brings you a plan to get back to feeling awesome. Thanks for all the sharing you do, while I don’t wish it on anyone, it’s nice to not feel so alone in the world.

Man, I’m sorry. Hope you feel better soon.

I get the whole “fake it til you make it” mantra but sometimes you really need to just say “you know what? I feel like garbage right now and I’m going to sit here and wallow in it.” I’m sorry. It stinks when youre hanging all your hopes (?) on a dr visit that seems way too far away. the week passes by quickly and you get sweet long lasting relief from the dr.

You speak my language and I feel your pain! I just got an email that the tennis courts were back open post-hurricane and first thing I did was pick up the phone to make a reservation this afternoon. Oops, I forgot I am currently couch bound with my pup. I can’t thank you enough for your posts.

All the healthy people. Running carefree not always appreciating the amazing gift they have. I’m in that place. I’ve been in that place for about 5 years and it hurts a lot. Like you, I’m trying to stay grateful for good days. Thanks for REAL posts. Really hoping things head in the right direction for you.

Sorry but why would you sign up for a Soul Cycle Class if you were feeling so poorly? Secondly, why would you pay $35 for a cycling class? Sorry, can’t feel sorry for you in either scenario….

Lots of “sorries” for not feeling sorry! But to answer your questions: I had signed up earlier in the week, hoping I would feel better by Sunday morning. I am willing to pay $35 for a cycling class because it’s something I enjoy (and that’s why I work hard at my job — so I *can* take the occasional $35 spin class if it’ll make me happy on an otherwise shitty day). And I’m certainly not asking or expecting anyone to feel sorry for me in any scenario. I’m just sharing my thoughts and feelings — no sorries needed.

Oh my gosh, I don’t think I’ve ever commented but I had to say – this is such a polite and kind response to a needlessly rude comment. To have the restraint and poise to respond that way in any state, and especially when you are so sick and downtrodden, is very impressive.

Thank you for writing about how you are feeling as you go through this, and definitely don’t feel like you need to stop complaining or put on a happy face. My husband has UC, and even though I have seen how sick he gets, he is a typical guy and doesn’t talk much about the emotional side of it. This is probably creepy coming from an internet stranger, but I really appreciate you being real and vulnerable when talking about your disease.

First time commenter too!–love the name^ and you said exactly what I was thinking! As someone who has Crohn’s and an obsession with spinning…I understand. Something about those classes that even in the worst possible flare can help and you cannot put a price on that. Spin class, hot shower and a nap- sounds like a good day to me! I have yet to make it to a SoulCycle class (none in Pittsburgh) but on a recent trip to Texas for a wedding was able to make a trip to Flywheel…..obsessed…it’s so fancy. Hope you feel better soon!

Sending healthy gut vibes your way (well…as much as a Crohnie can…). Do tell us about the IV at home. There are only a few thing worse than having to sit hours in the ER to get re-hydrated after being sick.

Fucking fuck. I’m so amazed you can put on that bright smile right now. One moment at a time.

I’m rooting for you, Ali. Keep your chin up. November 6th is that light at the end of the tunnel!

I’m sorry. While I can’t relate totally, I suffer from anxiety and OCD, which is also totally isolating and shitty when it ‘flares’.

I don’t think you felt so fatigued during SoulCycle because you’ve necessarily lost that much fitness. I think the dehydration/losing blood is a bigger culprit, if it’s any weird consolation.

I hate crohns but love Ellie:) Does she ever wipe out when she gets excited running around the apartment on the slippery hardwood floors?!!! My dogs do … just sending you happy, healthy, peaceful thoughts!

So sorry you are still feeling rough. Praying for you and hoping someone relief comes soon. I’m in week 6 of my remicade cycle and get my infusion Friday, so symptoms are creeping in again and I totally relate. Not a full on flare, but annoying for sure. I’m with you on the unbuttoned pants…I barely ever have mine buttoned…it’s amazing that the pressure really makes a difference. I think I’m about to invest in an entire wardrobe of leggings and tunic tops.

I have UC, started a new job in September and of *course* I’ve been flaring since then. I’d signed up for a marathon last Sunday which I’d barely been able to train for but, when I felt OK-ish on the morning, I decided to go for it and pull out around mile 6 if I had to. But I made it. Yes, I felt like I was likely to worsen my flare by doing it and yes, I made ports potty stops x100. But, I spent so much time alone in a stinky bathroom these days I’ll grab a good time when I can. I *totally* get why you went to soul cycle, and I *totally* get why you won’t give up on NYC. I kind of feel that the day I give up everything I love to protect my health, then the disease has truly won.

I think you’re a hero, and your blog brings me lots of smiles. Thanks for writing so honestly about IBD. xx

I read this article a few years ago – I don’t remember everything, but the gist of it was POSITIVE THINKING SUCKS. So what, you’re sick and sad and angry and then you should ALSO feel guilty for not being more grateful about life? Well, poo the positive thinkers (literally)! I admire you for keeping your sense of humour through this difficult time, you are amazingly brave. xxx Sarah from Switzerland

So far I´ve dreaded my long run in preparation for the NY marathon this weekend….but your have inspired me to never take for granted that I can run and I´ll be grateful for the pain I´ll be in from km 25 upwards. Ali, I wish you could run with me, and I´ll be running the entire length for you. I hope you´ll get better soon! Love from Germany, Eva

Hi Ali,
My name is Danielle and I’ve been diagnoised with crohns for about 9 months now. A friend recommended your blog to me and it’s really helped me.
I’m writing you currently curled up in my bed with a flare that my results aren’t confirming are a flare. I feel so depressed and so achy, mornings are always the worst for me. It’s starting to put a strain on work and family. Reading your past posts gives me hope that there will be a light coming, at least for a little bit. Thank you for sharing your story, and I hope you feel better soon.

Hi, Ali,

I have read your blog for several years and for some reason I’ve never commented on it. At the beginning of your training cycle for the New York Marathon, I kind of stopped reading. See, I, too, was supposed to be training for a fall marathon and everything seemed so great until I got injured and the doctors and physical therapists couldn’t give me an answer to as why my knee hurt so bad that I couldn’t run or walk or sleep. I got a bit jealous of all you running and went off to pout somewhere offline. I came to your blog today and see that you are sick again. I am so so sorry. I can’t say that I understand what it’s like to have Crohns but I can relate to wanting to punch every person you see out there running. I live in Chicago and had to LEAVE the city for the weekend during the marathon. The pain of not running hurt so much. Hang in there, Ali, and no that out there random strangers are supporting you and feeling the same things, just in different way.

Fuck Crohn’s. But high fives for unbuttoned pants… no longer just Janet Jackson’s Rolling Stone cover look, but preventer of poopmergencies.

Wow, Katie. you’re an a-hole!

Elisabeth Adkins says: October 12, 2016 at 4:34 pm

I’m so sorry life sucks so much right now. I’ve been there with my own health struggles (another autoimmune disease nightmare), I know how lonely and dark and isolating is. I hope you can get things straightened out with the doctors office quick and find a treatment plan that can help.

I found your blog awhile ago and have been enjoying it immensely. Keep it up! <3

Not intending to shit on you when things are already shitty (ugh sorry pun unintended), but I did just want to point something out. Hyperbole and a Half sufferer(/suffers) from clinical depression. You are absolutely (and totally understandably!) experiencing situational depression right now due to an outside circumstance. To me (as a sufferer of clinical depression), there’s a huge difference. For you, and situational depression in general, you know when your depression will end–when your flare is done and you can live a normal life again! (Or in your case, you might not know when it will end, but you know at least that it eventually will and that will be the fix you need.) With clinical depression, it’s not given that it will eventually go away (even with the help of drugs), and the problem is literally a chemical imbalance in my brain.

Not saying you can’t use those cartoons, but just trying to explain the context. Seeing you be like–‘ugh, depression right, I feel you Hyperbole and a Half’–doesn’t quite sit right with me though. Probably like how you feel when someone is like ‘oh I totally get upset stomachs too when I run!’ and you are (probably) just like OMG NOT THE SAME THING AT ALL STFU.

Thank you so much for this comment! I don’t take it as you “shitting on me” at all — I actually really appreciate the explanation and clarification between clinical and situational depression. The Hyperbole and a Half posts do resonate with me and have helped me and comforted me through all of this, so I’m in no way trying to make light of it in an “ugh, depression right” kind of way. My apologies if it comes across as me making light of depression — that’s definitely not the case at all. It’s more me being aware of my situation and finding comfort there. But yes, I recognize the difference and hope it doesn’t seem like I’m making light of clinical depression. I would never do that or feel that way. So again, THANK YOU for commenting. I’m glad you did!

I just read this and your past post about mental health with Crohn’s, and wanted to say: You are awesome and loved by many people including internet strangers like myself. Best wishes to you, Ellie and Brian!!

I’m sorry you’re having such a rough time. I would love to give you some words of wisdom or inspiration, but I’m sure you’ve heard it all – so I’ll settle for sending some positive vibes your way. I hope your flare eases up soon.

Ali, thank you for continuing to write REAL posts about how much a chronic illness impacts your life! Honestly, sometimes I get really sick of the “sally sunshine” posts — I love that you can just be real and raw and honest. Thank you for making me feel grateful for what my body can do, and for continually making me laugh – you have such a way with words. Here’s hoping that the 19th comes quickly and you find a path to feeling better really really REALLY soon! *cheers* (with champagne, of course)

This post really resonated with me (as well as “A Letter to My Body” and “What Crohn’s Feels Like”). I was diagnosed with Crohn’s this last May at 33 years old after what turned out to be an almost two month flare-up (which led to me going septic and a week in the hospital). During a good chunk of that time, and during the month after the diagnosis while starting Remicade, I was in a really dark place and found it hard to believe anything would ever get better. I found your blog during that month, and I can not tell you how much comfort it gave me during that hard time (and continues to give me). I am so sorry that things are so rough for you right now — I am sure I can speak for all of us following your story that we are rooting for you and hope things are better for you soon. Thank for sharing with us.