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 to myself, “I’m handling this remarkably well. Work is beyond insane — the craziest, busiest and most stressful it’s ever been in the duration of my little career — and I have so much on my plate, but I’ve got this. I’m doing OK.”

Fancy shoes all lined up for a fancy photo shoot on Sunday. The Louboutins down on the end had their own "handler" for the day making sure nothing happened to them. (Good thing, since I was not about to cover the cost for damages on those babies.)

Fancy shoes all lined up for a fancy photo shoot on Sunday. The Louboutins down on the end had their own “handler” for the day making sure nothing happened to them. (Good thing, since I was not about to cover the cost for damages on those babies.)

I know myself well enough that as soon as I thought those positive thoughts, I had to pause.

“This is the calm before the emotional storm. Enjoy this feeling, because a breakdown feels just around the imaginary corner.”

Today, on Thankful Things Thursday, I’m here to do my best to take a detour that will hopefully keep me away from that corner for a little while longer.

If I’m on board, will you join me?

I’m thankful for puppies. We’re starting strong today, folks. Puppies right from the get-go. Bringing in the big guns. The big…pups?

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.

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.

I’m thankful for Skype. I used to go to the gym after work. I’d hit up a spin class or lift some weights. If I felt particularly ambitious — or exceptionally tight — I’d even attempt a yoga class. But these days, that’s simply not happening. I’m far away from the spin bikes, the dumbbells and the mats and it sucks.

You know what’s just as good as a hefty dose of cardio and some time in Downward Dog?

Talking it up with this guy:

Someone's teething! He gets really excited when his parents give him his cold toys to suck on. It's pretty cute...even though he's probably in a ton of pain.

Someone’s teething! He gets really excited when his parents give him his cold toys to suck on. It’s pretty cute…even though he’s probably in a ton of pain.

Nightly chats with Tyler — he has a lot to say these days, like “dadadadadada” and “schwermel blah” — improve my shoddy mood significantly. He makes me laugh and sometimes cry, when he does amazing things like walk to me from across the room. Technology really is a beautiful thing.

I taught Tyler the "thigh dancing" sequence from Physique 57. I think he's mastered it. Such impeccable form!

I taught Tyler the “thigh dancing” sequence from Physique 57. I think he’s mastered it. Such impeccable form!

I’m thankful Dr. Pretty Face was able to see me yesterday. Mostly thankful.

So the health situation. Let’s talk about that.

I escaped right as Dr. Nice walked into the room because I wanted to see the big papal reveal (sounds dirty — you know it's not) on the TV in the waiting room. Dr. Gentleman said, "It's OK. I'll be here." Then I came back and tried to tell him all about how the new pope is from Argentina and he was like, "Let's talk about your disease." Less fun.

I escaped right as Dr. Nice walked into the room because I wanted to see the big papal reveal (sounds dirty — you know it’s not) on the TV in the waiting room. Dr. Gentleman said, “It’s OK. I’ll be here.” Then I came back and tried to tell him all about how the new pope is from Argentina and he was like, “Let’s talk about your disease.” Less fun.

I know. You’re tired of hearing about this and I’m sure even seeing the word “Crohn’s” on your screen makes you click away.

Still there?

If you are, trust me — trust me — I’m tired of it, too. So, so tired of it.

And not just tired of it. I’m over it. I’m exhausted from it.

YOU ASKED FOR IT. You people were like, "Bring back the bathroom selfies so we can see your work outfits!" Well here you go. I have worn yoga pants or straight-up sweatpants to the office all week. This is simply the best I can do. Our CEO saw me in the bathroom yesterday (lovely) and said, "Well don't you look cozy!" I smiled politely, and on the inside I scream-responded, "I'M DYING ON THE INSIDE! THERE'S NOTHING COZY ABOUT THIS!" And then I prayed for her to exit the restroom ASAP.

YOU ASKED FOR IT. You people were like, “Bring back the bathroom selfies so we can see your work outfits!” Well here you go. I have worn yoga pants or straight-up sweatpants to the office all week. This is simply the best I can do. Our CEO saw me in the bathroom yesterday (lovely) and said, “Well don’t you look cozy!” I smiled politely, and on the inside I scream-responded, “I’M DYING ON THE INSIDE! THERE’S NOTHING COZY ABOUT THIS!” And then I prayed for her to exit the restroom ASAP.

I will never forget how I felt when I was in the hospital last fall and Dr. Shah came in with the results from my latest MRI and colonoscopy. He told me my case of Crohn’s disease was “mild to moderate.” Mild to moderate? That’s it? It felt like such a slap in the face.

Am I that weak that I don’t even classify as having a legitimate case of this disease? Or are people who have it really badly just so much more miserable than I could ever imagine?

Both, maybe.

He said the disease appeared severe in my sigmoid colon and actually, technically, diagnosed me with Crohn’s-colitis. Look at that: overachieving as often as possible. Why have one Inflammatory Bowel Disease when I can have both of them?!

You may remember that I began having symptoms of a flare-up a little over a month ago, right before I went to Colorado for a ski trip.

Faking a smile in the car because I was miserable. Four-hour roadtrips mid-flare aren't fun at all.

Faking a smile in the car because I was miserable. Four-hour roadtrips mid-flare aren’t fun at all.

Things never got too terrible to bear. I had the bathroom stuff happening which is of course unpleasant, but I never had the fevers, the aches or the life and energy sucked out of me. I was in pain, but I was mostly fine.

As soon as I returned from the trip, I got my every-8-week infusion of Remicade. It didn’t help right away as it typically does, but after a few days things started to improve slightly.

They never fully got better, but I was OK enough to do a little bit of running again and feel mostly decent. Life was good. Or at least it was good enough.

Then things got crazy.

Work got crazy.

READ THIS WHILE YOU'RE IN HAIR AND MAKEUP, PEOPLE. Study. And enjoy.

READ THIS WHILE YOU’RE IN HAIR AND MAKEUP, PEOPLE. Study. And enjoy.

Work has just been…a lot. Everything is fun, but it’s intense and one day in a few weeks I’ll be able to tell you all about what we’ve been working on. Because I know you’ll lose sleep until then.

We all know that I love working hard. But my body doesn’t seem to love it, and right now my body isn’t keeping up.

After an early call time and a stressful work day Sunday (yes, Sunday — WTF?), I came home, relaxed for a bit and then decided I wanted to enjoy the sun and go for a little run.

That run was my sign.

It was terrible. I didn’t make it far before I returned home, hobbling from one public restroom to the next, knowing things were getting bad.

That night, I had my first fever: 101.2 degrees.

By Monday night, it climbed to 101.9, Tuesday it hit 102 and each evening since Sunday the night sweats have been out in full-force. I’m not sleeping well despite being exhausted and I’ve got another big trip right around the corner (L.A. next week for a pretty intense 4-day conference — think long days and longer bathroom lines).

Because my doctor is “excitingly busy” but wonderful, he was able to squeeze me in for an appointment yesterday, and I’m so appreciative.

I always arrive prepared and with very wise, well-researched questions.

I always arrive prepared and with very wise, well-researched questions.

Except that the appointment was frustrating as hell.

When there’s no real cure for a disease and you’ve tried so many of the drugs out there and they’ve stopped working, you eventually just sort of hang your head.

He’s putting me on steroids, which I started yesterday. A short but hefty dose, which he hopes will at least calm the symptoms enough for my trip next week. I also have someone coming to my apartment on Monday morning (yeah, that was weird to me, too) to run a blood test that will determine the Remicade levels in my body right now (“Your disease could be sopping up the drug too fast,” Dr. Good Times said), and then we’ll decide if I should be getting a higher dose of the drug or upping the frequency of my infusions. The doctor tested me for celiac disease, just because “the test is easy, so why not?”

He’s checking to make sure I don’t have the C-DIF virus (the test for that one is fun, let me tell ya) and he took my blood to measure my inflammatory markers and white blood cell counts.

As always we talked about my diet, and his theory is, “If it makes you feel good, eat it. If it doesn’t make you feel good, don’t eat it.” Vegetables, salads and most healthy things are out. I’m on the all-carb diet. I’m literally carb-loading for nothing.

Brian made this massive feast for dinner the other night. Potatoes? Good. Chicken? Good. Green "roughage?" Nooooot good.

Brian made this massive feast for dinner the other night. Potatoes? Good. Chicken? Good. Green “roughage?” Nooooot good.

Finally I just asked my doctor, “What the hell am I doing wrong? Why does this keep happening?” And then I shut up really fast so I wouldn’t cry or seem too pathetic. (Too late.)

Dr. Trying To Be Nice But Making Me Feel Badly said that in the cases he sees, among other things, stress can definitely play a factor with triggering flare-ups. “You need to balance the stress in your life,” he advised. “The voluntary stress is actually OK — if training for a marathon is stressful but you enjoy it, that’s different from the involuntary stress caused by things happening at work that you can’t just eliminate or control.”

In other words, I’m fairly certain my doctor just told me to quit my job, take up recreational marathon running and say goodbye to Crohn’s.

Right?

That’s how you understood it, too, yeah?

By the time I left the doctor’s office, I felt no sense of relief. No “Cool, we’ve got this figured out this time.” Hopefully the steroids will work and in the meantime I’ll just keep playing the patient game and getting annoyed by all the constantly-healthy people in this world.

Yes, I’m bitter.

Go brag about your awesome morning runs on Twitter. Go tell the world about that delicious salad you ate and how great you felt afterward.

I’ll be here at work, wearing pajamas…and sweating through them.

Done with the negativity for now. Moving on!

Tyler photo!

Standing up like a real man! Except that real men have jobs. So work on that next, Tyler.

Standing up like a real man! Except that real men have jobs. So work on that next, Tyler.

I’m thankful knowing I will be healthy again. I have no idea when, but that’s just how I’ve learned to look at this whole thing over the past two years. I get sick and it’s the worst, and then I get better and it’s amazing. I’ll deal with the bad times because I know the good ones are coming.

And hey, thanks for sticking around in the meantime.

BE THANKFUL FOR EVERYTHING BECAUSE IT’S GOOD FOR YOU: What are you into today? Please don’t shove your amazing workouts in my face. Instead tell me about your rest days and the carton of ice cream you had for dinner. Or, you know, tell me about how you, too, have an inconveniently annoying disease and how you’re thankful because you know exactly how to handle the emotional side of it. You could also tell me which Netflix options you’re thankful for, since I’m spending a lot of time plowing through my those when I can’t sleep at night. Thanks!

91 Responses to "Thankful Things Thursday: I'm Doing My Best"

My name is Sky Curtis and my son was very ill with Crohn’s Disease for years. Fecal transplants saved his life! After much trial and error, I developed a successful protocol for using fecal transplants to treat Crohn’s/Colitis at home. After years of suffering, my son was finally free of all his terrible symptoms! I have written a guidebook that shows sufferers how to do fecal transplants at home which is available for purchase at http://www.fecalinfusions.com and I am always available to answer your questions. I have now helped hundreds of people become well. There is hope!

Oh I am really really sorry about your week! Crohn’s sounds suck-tastic. I do also have an inconveniently annoying disease – Hashimoto’s thyroiditis, aka an autoimmune attack on my endocrine system, triggered by gluten! Good news – not eating gluten keeps it at bay. Bad news – uh, never eating girl scout cookies or mac n cheese again! :( Also bad is accidentally ingesting gluten…let’s just say I know how it is to not be able to stand up. Stupid stomach. Anyways…this wasn’t supposed to be whiny. I basically wanted to say pleasepleaseplease enjoy those carbs and eat all the delicious things for me. Like bread. And pasta. Ohgawd, real pasta. I miss it so much. And I will eat more stupid veggies and do it for you! And I will try to enjoy it like you would, and you can do the same for me :) As for mentally dealing with it, I just try to remember that I am lucky…lucky to have a disease that remains under control for hte most part, that isn’t life threatening, that has food I can eat. And then I dream about real pizza crust. ;)

Ashley,

I found this recipe a while back for a home made gluten free version of a tagalong!!!! they may not be from the girl scouts, but it might help satify a craving!

http://chocolatecoveredkatie.com/2013/03/04/healthy-girl-scout-cookies-tagalongs/

Ashley – check out elanaspantry.com too – she recently posted “paleo” thin mints that I made and they came out fantastic!!

Ali – I’m sorry you feel so crumby. I feel ya – colitis here, Ive been fighting the same stubborn flare for over a year now. Remicade isn’t working that well, I’m on the highest dose (10mg) every 6-8 weeks and it hardly does anything. It’s extremely frustrating and it sucks to have your life run by your colon. Thankfully I’ve gotten myself into a pretty strict bathroom routine that allows me to run and workout within a very small window of time everyday.

Just keep your head up, its the best you can do and know that you’re not the only one stuggling with this illness even though it seems like everyone else in the world poops like a normal person.

Have you ever tried pysillum husk caps? It may seem counter-intuititve, but they help me tremendously. They pull things together, if you catch my drift. I don’t know that it would help the urgency or cramping, but it might help with the frequency! Just something to consider. I REALLY hope you feel better soon and please know that you are SUCH an inspiration. I love, love, love reading your blog. Keep it up and thank you!!

Well, for one, I’m thankful that you posted a picture of puppies right at the beginning of this post. I’m serious. I needed that.

I’m also thankful that my grad school graduation is only two months away. The thought of being done with this degree makes me so happy, I could explode.

I’m sorry you feel so awful, Ali. Hopefully things will be looking up sooner rather than later. It seems like you and your doc are doing all you can.

I am thankful that even though it might be raining, I am healthy enough to compete in my first half marathon this weekend, despite acute aches/pains from training. And I am thankful I can run it in honor of people like you and some of my friends with cancer or loved ones who passed too soon, who are fighting something that I cannot begin to understand the emotional and physical pain of.

I am also thankful that tomorrow is Friday:) Keep your head up!

I know it is probably not very helpful, but know that you are really an inspiration. I don’t have a chronic disease (my mom has colitis, does that count by association?), but often times I’m sick or stressed or busy. I think, “hey, if Ali from the blogs can run through her illness, I can certainly tackle this run today.” As a self-proclaimed negative Nancy, your positive outlook despite your current circumstance is pretty inspiring too. Glad I stumbled upon you blog. Keep your chin up.

I’m also thankful for puppy pictures, because who doesn’t love puppies. I’m also thankful for my health, because reading stories like your’s Ali reminds me that outside of some terrible cramps once a month (yay being a girl), I really don’t have much to complain about. I hope you start to feel better soon, or at least better enough to get through your trip next week.

You handle this disease with more grace than you realize.
Shameless on show time is hilarious and not at all depressing, which is what I always thought. Felicity is a good go-to and the 30 days series by Morgan Spurlock.

I dipped Thin Mints into chocolate ice cream last night while watching Korean Dramas on hulu plus. How’s that?

Crohn’s Sucks! there, I said it. it just does. Currently I don’t think there is anything else anyone can say about it to make me feel better about the fact that, I too, cannot eat vegetables and all the whole grains and healthy food I have stocked my cupboards with. It was fun at first getting to eat white bread and white pasta all the time, but now I am sick of it. I feel your pain, Literally. But as you said, it is temporary. You will feel good again, and so will I. From what I read in your posts, you are an incredibly strong woman and thankfully it seems like you have a great man and a wonderful family to help you when you are low. Lean on them. I lean on mine. We will be ok. and remember you are not alone! I feel Thankful that I can read your blog and know that I am not alone. I also love your sarcastic sense of humor and the fact that you are blunt and bold. Ali You Rock! and puppies are the best.

Samantha says: March 14, 2013 at 8:49 am

I am thankful for you, because even on days when Crohn’s is being a heartless bitch to you, you can make me smile and laugh-out-loud at my desk. Stay strong, Ali!

Similar to your puppies, I am also thankful for this live steam of kittens that I can watch from my sad, grey cubicle when I am feeling down – http://new.livestream.com/FosterKittenCam/TheCosmoFosters.

Just saying thanks for your blog. I stop in sporadically and am super thankful you are letting so many people know about crhons. My husband has it and so does our daughter. She is almost 10 and was diagnosed a year ago. Your blog gives me some insight on what some of our days could look like. (thankfully both hubby and daughter aren’t overachievers and both had mild cases ;) )

Oh friend! I wish there was something I could do to help you (I will be working at the same hospital as Dr. Good Times soon, though!). You know you can get through this one just like the others, just take care of yourself!

I am thankful that I may be able to get a puppy sometime in the near future and you can visit as often as you like :)

I just have to say that you really do handle this with a lot of strength. What you project here and your attitude, amazing. You are so real and open – I so hope for some sort of solution or relief for you soon. Hang in there, I can’t even imagine how difficult it is dealing with your disease on a daily basis.
If it makes you feel any better I have rekindled my love for cereal and already gone through 2 boxes, on my own, this week. I can’t run enough miles to justify that and just don’t care.

I LOVE House of Cards. Maybe I’m behind the times and you’ve probably already seen it but if not…you have 13 hours of excellent entertainment coming your way!

Oh, the C-DIF test. I know it well, and the M-15 bus I had to carry it on knows it well too. I’m really sorry you’re sick right now. The best Netflix recommendation I can give you is Better Off Ted.

I am so sorry you’re going through all of this Ali!! I too have been dealing with health issues. Between a stress fracture in my left foot that couched me for 6 weeks, a brief hospital stay this January, and now a stress reaction healing in my right foot, running has kinda taken a back seat. I get so angry when people are constantly talking about the amazing runs they are having (we get it. I can’t run. This shit sucks!) but I try to remind myself that what I’m going through is temporary. It sounds like your doctor is doing everything he can to help which is so much better than what you had before. This flare up will pass and you’ll get back to rockin’ out those runs like you usually do. Try to remember that it’s temporary. And also – I’m thankful for 2 for $6 Ben & Jerry pints. Can’t make it through injuries without it. :)

Feel better soon! I’m not running right not either (boo groin injury!), and I feel like I’m slowly losing my mind! So I’m definitely thankful for marathon sessions of Downton Abbey on Netflix! And ice, thankful for lots and lots of ice.

I am thankful for the four Cadbury Carmel eggs that I ate in my car on the way home from work in under five minutes. They were so good.

I am sorry you are sick.

Every time you post, Ali, I feel like I could have typed the words (minus Tyler… I don’t have one of those, unfortunately!). I appreciate your frankness because it makes me realize I’m not alone in a very similar situation.

Ali,
I am thankful for goldfish crackers and the show “The Killing” on Netflix. It is like a little bit twin peaks meets law and order. Dark and scary! I got hooked. You should try it.
I am ever-thankful for puppies, and always thankful for your blog. I hope your steroids kick in soon.

Ali, I’m so sorry. I know I don’t know you, but I feel like I do a little (in a non-creepy way), and if I did know you, I’d give you a hug and tell you it’s going to be ok. That’s all I can offer. Feel better please.

As for Netflix, I’m rewatching all the West Wing episodes, and it’s addictive. Hope that helps!

I’m thankful for Sherlock (the BBC version) and The West Wing and Alias (old, but SHE’S A SECRET AGENT!), all on Netflix.

I’m thankful–and this one might make me sound selfish?–for knowing that every runner has times when running sucks and when the last thing she wants to do is hear about other people’s awesome tempo runs or their marathon goal pace, or whatever, because HOO BOY am I in that situation right now. (So, um, thanks for sharing. And being honest.)

I’m also thankful for crepes for breakfast.

I’m thankful that today is Friday for me because I decided to take tomorrow off! Mental health days for the win.
Watch the 7-up series on Netflix! I’ve only made it through half of 21 (the third installment) so far but it’s really interesting.
Here’s hoping those steroids kick in soon!

Keep your head up young gun and remember, it’s not what happens to you, but how you handle it. It’s not easy, but it’s true.

<3

New commenter, but I’ve been reading for awhile. I love how you always find something to be thankful for and try to stay positive even when you’re not feeling well. Here’s hoping you feel better soon!

I am so where you are right now. Well not exactly. I don’t have Crohn’s but I do have a chronic injury in my leg and at the last treatment (i get trigger point injections to tell my nerves to shut the heck up) they nicked the nerve so now instead of pain in my calf its lightning all the way down into my foot. I haven’t really been able to walk without pain for about a month now which is fantastic and they told me it could be up to four more months until this nerve calms down but to run as much as possible. So I totally get wanting to hang your head.

But recently I’ve decided to just calm down about it. I’m pissed as hell obviously but I let my anger get really high and then just try and let it go. Ultimately thats not going to get me better nothing is but time.

And so I’m thankful too that one day I will be healthy again and not in pain (or at least not as much :) )

Also I’m thankful for all the crazy tv right now and sun in CA :)

Friday night lights!

I don’t know exactly what you’re going through, but I’ve been suffering with (from?) symptoms similar to Crohn’s, IBS, and/or Celiac. When I first saw my doctor, she just told me to cut out dairy because she figured it was lactose intolerance. That was torture because I pretty much love all things dairy. Thankfully, lactose wasn’t the cause of my problems.

Now I’m cutting out gluten because I know if I go see another doctor, that’s what they’ll tell me to do before they do any sort of tests (I really hate that about doctors). So far, not seeing much improvement.

While I can’t pinpoint what’s wrong, or exactly what seems to be the cause(s), I do know that when I’m stressed, worried, or anxious, that makes it a lot worse. As a full-time editorial assistant and full-time graduate student, I haven’t quite figured out how to manage my stress. So I can’t offer you any tips there, but I know how frustrating that is.

I hope you start feeling better before your trip!

I’m so sorry that you’re having to experience this. All I can say is that you are doing so with so much strength. Pretty sure I would just quit my job and lie on the couch feeling sorry for myself all day.

And I couldn’t run yesterday because of pink eye (nearly-swollen-shut left eye makes for bad running I’m thinking) and a cold. So I ate most of a container of gold fish instead. I think that’s how you cure pink eye?

Aww, I’m sorry that this flare is 1) happening, and 2) sucking so much. I am definitely thankful for puppies as well. I pretty much can’t wait to get home and snuggle my dog every single day. You can get various breeds mixed with poodles that Brian might be able to handle! Some shows that you might want to Netflix: Once Upon a Time (super cheesy and about fairytales, but I love it), and Walking Dead (zombies). Also, I’m thankful for egg rolls, pork dumplings, and moo shu pork.

Ah ali. I’m so sorry crohn’s isn’t behaving its nasty little self. I just had a follow up Monday & am also mild to moderate but luckily apriso is working for me– aside from I think it makes me a bit drowsy. Do you feel that way at all? Or is just me haha? Best of luck!!!! :)

So sorry you’re feeling bad! I am thankful that I skipped my work out last night to go out with a friend for her birthday. We shared hummus with feta, baked brie and bacon dip, roasted duck and red pepper sandwiches, the best french fries ever, and lots of BEER. Then we came home and had cupcakes and played with my dogs.
I don’t have an inconvenient disease, but I have dislocated my right knee four times, so “click” when I run, from the scarred cartilage. Surprisingly, minimalist shoes have helped a lot, but ice cream helps more. Get better!

Melissa C. says: March 14, 2013 at 11:11 am

So sorry to hear about everything you’re going through Crohns wise. I, too, hate when there are no answers. I’ve been semi-Crohnsy lately…. meaning it can’t decide if it wants to full on flare or be nice to me. I figure if I feed it massive amounts of animal crackers and other delish carbs it’ll shut up right?! Keep your head up; I know it’s so impossibly hard sometimes though.

Oh Ali, your post broke my heart. I really hope you can keep up your positive spirit and get through this! Keep loving on puppies and you’re bound to feel better (at least momentarily).

HI Ali

you are in my thoughts. I really felt awful for you regarding the CEO’s comment. I think its such an important reminder to all of us that we just never know what someone is going through. I read this article today and it inspired me: http://espn.go.com/espnw/athletes-life/8921160/espnw-teri-griege-let-cancer-hold-back, I hope you like it. Take care.

I’m sorry you’re not feeling well and hope that the various tests will bring some answers.

This week I’m thankful that I got some long-awaited good news and for validation that hard work and sacrifice can pay off.

I am so sorry you are not feeling well. I totally understand. I have Crohns it really sucks!! i just got out of the hospital and have a pic line and have to be on tpn for the next month or so. I hope you start to feel better. I also can’t eat anything health. As we speak I am eat doritos!! and all the carbs i can get! hang in there!

I feel your pain! I too have been having a Crohn’s flare since about mid-January. I am also an avid runner and let me tell you, Crohn’s and running don’t play nice together at times!! Hang in there and keep your chin up! I know it’s hard, but each day is a new day.

I’m thankful for your doctor. That’s the first time I have seen a distinction between voluntary stress an involuntary stress.
You just shook my entire world view with a new re-frame. Seriously, thank you.

You’re sexy & pretty & hot no matter how much you sweat through your sweatpants. Tyler is awesome and you are awesome too. And that is all.

Thankful for these Netflix time sucks: House of Cards (holy cow those characters got problems), Drop Dead Diva (silly at times, but entertaining), United States of Tara (terrifying, but couldn’t stop watching).

…and last night’s ridiculous eats: https://twitter.com/kaprian/status/312229682093363201

Have you seen First Position (since you have Dance in the name of your employer, I’m guessing yes, but just in case….). I saw it the other night (old school Netflix, on a disc ’cause I’m old) and it was amazing.

Please go friend “Ray Charles The Golden Retriever” on facebook this second. He is a Blind. Golden Retriever. PUPPY. He will make you very, very happy. “Oscar The Happy: Chained to Cherished” is a close second.

Hang in there and I hope your flare turns the corner soon!

Thank you for writing this. I know from experience how frustrating disease can be and it’s nice to feel not so alone. Your 20s are especially hard because you just want to live a life like your peers: career, relationships, exercise, social events, etc. And it’s hard to step back from any of those. It’s especially hard when you look healthy on the outside, making it impossible for people to understand that you’re sick and, at times, unable to keep up. Here’s to hoping you feel better ASAP. I know those better days are on the horizon for you :)

I’m thankful for the Rick Steve’s guide book to Italy that I’m reading at my desk. And the fact that when I massively ate it while running Tuesday, that I didn’t break anything besides my pride (and the skin on my hands and knees).

I truly hope that you start feeling better soon!

I can tell by looking at your poop if you have c. diff. BENEFITS OF NURSING.

But this all sounds sucky and I hope something works. Whatever that is. In the meantime, I watch Gossip Girl from my tiny studio and can’t believe these “people” “represent” the UES.

you should watch breaking bad! and my so called life! and mad men! I hope you feel better soon.

Ugh, I’m sorry. My migraines are heavily related to stress and it is such a vicious cycle. I don’t have a ton of advice, but have you ever thought about trying biofeedback and breathing techniques? I know, I know…I sound like a hippie but I’m not – honestly. I don’t believe they cure anything but they can help manage the symptoms, and some of the breathing techniques I’ve learned seem to help me sleep (huge for me when I’m stressed/sick). Good luck! I am thankful for goat cheese, since I just ate some and it was awesome.

Ali I just love reading your blogs. Every morning when I get to work I am so excited to open your page! I am 29 year old nurse who was had Crohn’s for 15 years and I hate it but it has opened my life to a bunch of new things at the same time. You will get thru this awful time. I am in the same boat as you right now with a flare up and it just pisses you off that everyone around you is fine and you have to put a “smile” on your face! Remember it will get better, eventually, it always does. Don’t give up. Life gets really hard sometimes but it is sow worth it to keep on fighting and take Crohn’s down with a “b*****” attitude while doing it!

I’m thankful for chocolate, specifically Cadbury Mini Eggs.

I am thankful and recommend any movie with Ryan Gosling in it. :) The one with Steve Carrell (sp?) and Emma Stone is cute, but of course, I can watch The Notebook any time. If you’re watching it in the middle of the night when Brian is asleep, you won’t have to hear the comment I get from my boyfriend, “You’re watching this again.” :)

Yay for Tyler pics. Feel better, Ali. Don’t blame yourself for what the disease is doing to you.

If you can figure out how to get by quiting your job and taking up recreational marathon running, let me know.

Very thankful that winter is almost over. Thankful for good coworkers, sunny skies and chocolate bars.

Hi Ali… I don’t have Crohn’s so I don’t know what you are going through firsthand, but I just wanted to say that I am so sorry that you have to go through it.. Hugs!

Sucks what you’re going through… to respond specifically to your request for comments…

I haven’t worked out all week b/c of a similarly stressful schedule, ate an entire bag of Trader Joe’s pb stuffed pretzels today, oh and yesterday? 2 large cookies (bakery size, I’m not talking about no chips ahoy) right when I got home from work and a whoopie pie at 9 pm, just in case I wasn’t in enough sugar shock. If I wouldn’t throw it right back up, I’d eat 3-5 gallons of ice cream this afternoon (mint choc chip or coconut milk choc hazlenut ice cream). I’m sitting in my office right now avoiding work by reading this blog while considering unbuttoning the top button of my pants. BAM. I’m thankful for my dad though; he’s a great man and a great role model who will still love me when I end up morbidly obese from cookies and peanut butter and always stocks his freezer with ice cream for when I’m around!! Amen to that.

Yvette Urteaga says: March 14, 2013 at 4:23 pm

Keep your chin up Ali, I don’t have medical solutions but Netfix suggestions, I’m your girl!
-How I Met your Mother
-Drop Dead Diva
-Mad Men
-Gossip Girl
-Wonder Years (oldie but goodie)
-Miami Vice (totally 80′s)
-Downton Abbey
Hope you feel better soon!

Stephanie says: March 14, 2013 at 4:28 pm

Wishing you relief asap! I made a Derby Pie today for Pi day. It has Pecans and Chocolate and is not healthy at all. Also I have started watching Once Upon a Time on Netflix. Love it! Have had weird stomach issues for the past week which made me think of you. Don’t know what is causing them, but I’m blaming either the Cafe Mocha, Macaroni and Cheese and Ice Cream I ate Thursday and Friday or possibly the stress of my husband losing his job. (Or both.) Keep looking at that adorable nephew and feel better soon!

I find you very inspiring. Just wanted you to know.

I don’t know what it’s like to have an official, diagnosed disease…but I am plagued with tummy “issues” what also flare up randomly and cramp my style.

Reading your stuff makes me feel not alone, and I am thankful for that.

Hang in there.

Netflix: Dance Academy…the BEST show ever! It’s an Austrailian tv show on ABC Family. Seriously, you’ll laugh, you’ll cry, you’ll get up and attempt some dance moves. Watch it! No one cares if you’re 26 going on 11.. That’s at least what I tell myself.

You are doing your best, and that’s all that you can right now! During my flare ups with colitis, carbs are the only thing that help. I guess that’s why I hate veggies so much! Hah If it helps, I ate a cookie in a jar the past 2 nights. I witnessed everything that went in, totally unhealthy except organic sugar, but it was amazing and might make it 3 tonight! PS Have you seen Parenthood? I’d start tht one on Netflix. it’s a winner!

I hope you start to feel better soon, Ali! It sounds like the docs are trying some new options.

I had a heck of a doctor’s appointment yesterday. I have spent my whole life thinking I have had all kinds of allergies, but turns out, my allergy test came back negative, for everything. I apparently outgrew all of them (lots of puppies for me!).

Also, I’ve had a chronic cough that I thought had to do with my chronic sinusitis. Nope, I have acid reflux. So I’m empathizing with you on the gut issues. Mine are no where near as intense or limiting, but it’s a bummer. Especially when I had a 15-minute coughing fit in the office today.

Regardless, I’m thankful for puppies too. Specifically my puppy. :)

I just want to give you a hug!!!!

Oh Ali, I don’t like reading about your feeling so crummy and down. But I don’t blame you. How frustrating to not know what to do and have the doctor in the same way. Feel better. Get better. Stay better.
Love the pictures of Tyler as always.
I am presently icing my ankle and haven’t run in a month. Well, I ran once or twice but quickly realized I shouldn’t be. Hope my icing and not running makes you feel a little better!

Ali, read your blog all the time and just wanted to send you a quick shout out to wish you well and hope you are feeling back to your old self ASAP! I’m lying in bed with a back injury from running. This is Nothing! compared to what you go through on a daily basis. I also carbo loaded for nothing today: pizza, Girl Scout cookies and too much cereal. Help! Hang in there Ali!

I’m sorry you are sick. I haven’t run much since stupid cancer is causing my lungs to fill up with fluid. It’s been since December, the chemo seems to be working and it’s getting better. And I lost my hair again.

Hi Ali,

I just recently started reading your blog. My recovery room nurse told me about your blog when I recently had surgery to have a port but in for my infusions and she found out I had Crohn’s Disease. I was just diagnosed less than a year ago, in April 2012. I was diagnosed with a severe case of Crohn’s and I know exactly what you are going through. I have never fully experienced remission with my Crohn’s Disease. I was on months of steroids and then unfortunately had to have surgery to remove a portion of my small intestine and colon. I also have a Crohn’s-colitis combination so I know your pain of having both and being overachieving in every area of life. I am now on Remicade as well and my doctor just doubled my dosage of it. I really hope the steroids help you with your flare!! I have been on them twice since my surgery and they help pretty quickly and they make you really hungry. I hope that they work for you and quickly so you do not have a miserable trip. I have really enjoyed ready your blog and about your journey with Crohn’s! It is always good to know that other Crohnies are going through similar things as you.

I’m so sorry for you. I have a bad back as a result of a car accident and after three years of ups and downs, my surgeon, anesthesiologist and ortho told me no more running. It’s devastating, and four months later I’m still grieving the loss of my favorite release. Hang in there, and know you have an army of support behind you. You are strong and can totally kick Crohn’s ass!

I am so sorry your week has been so “excitingly busy” and painful.
If, while you’re in LA you’d like to grab dinner or take a super fun spin class, let me know (I work for a YMCA!) :) I promise I’m not crazy, or at least too crazy.

The last one…cling to that. You deserve to feel GOOD. Like, really really good.

I’ve lived with a “disease” that isn’t even recognized by the medical community. It’s difficult to diagnose but totally treatable and curable. It only took us 20 years to figure it out. I say “only” because we finally did :) It feels great to feel good. Hang in there. It WILL happen.

I’m sorry that you are feeling so shitty! I get it… And reading your blog has helped me through some tough times because it made me feel less alone with my body’s BS. I too have a lovely condition, it’s called peutz-jaeghers syndrome… I’m not sure if I’ve ever spelled that right. It lands me in the hospital every year with a colonoscopy, gastroscopy, and barium MRI. I’m 31 this started when I was 23… One of the loveliest parts is no one knowing what to do… And a lot of advice that has done me no good. The mental/emotional aspect is the worst for sure… I spent sept-dec driving everywhere and avoiding standing in line for anything… Just in case my bowels called. I’ve always been a nervous pooper so the thought of being caught without a bathroom in site made that so much worse…. Yay for late night shopping trips. One particularly bad day, which was to end with a date, I spent curled up in bed in tears… Knowing I would have to be so careful about what I ate… And hoping my stomach would survive the night.
I was so mad that I even had to concern myself with those thoughts… Again. My current arsenal includes… Immodium, way too many smoothies and baby food packets, no broccoli :(, and a good group of friends that I finally opened up to about my pooping problems. No Netflix suggestions for you… I’m Canadian so we don’t get the good stuff. New girl makes me laugh my face off though… And Lie To Me (no longer on but you can find it online) super dorky but that Tim Roth can freak out like no one else.
Also avoiding a lot of healthy living blogs… I started to think that I should be able to eat what all those girls were…. Yeah… Yams? Chia? Salad “beasts”? Not my friends… At all.
I hope things settle down for you soon… Shoot me a email if you ever need another person to vent to… I’m sure you have many… But I know it’s good to have more… Especially ones you don’t ever see.

I’m thankful for the reminder that everyone is fighting his/her own battles – and even if they “look” healthy on the outside, that doesn’t mean there’s not a monster lurking inside.

Hang in there, enjoy the steroids (hey maybe you can get SUPER STRONG!!!! ;) ), and hopefully something breaks for you soon.

In the meantime, I have no TV suggestions, but Pocket Planes is a stupid, mindless, addicting iPad game that’s probably awesome for killing time in the bathroom.

I can relate. I have been dealing with a foot injury since January that doesn’t seem to want to heal and it’s stopped me from running and working. (I am a waitress)
Every time I’m at the doctor, he doesn’t have real answers, just “let’s try this” “let’s try that” and no time frame for anything. It’s frustrating because I always feel like there should be a magic pill for everything, haha! I feel the same way when I hear/see healthy people, I get jealous and almost angry inside, and then sad because I miss being a healthy person and if I ever get there again, I will never take it for granted.
Get well soon!

Lauren W. says: March 15, 2013 at 11:07 am

Hang in there Ali! I’m so sorry to hear about the rough times…I can’t imagine what you’re going through. Sending hugs and positive vibes your way for health on the horizon.
Although I haven’t had a carton of ice cream as of late (though now I really want one), I did manage to shove almost an entire bag of kettle corn in my face the other night on my rest day. #truestory #crumbseverywhere It was delicious.
Keep your head up kid..

Oh poop (literally). This just sucks. I was hoping to hear about you being on the mend. This is no comparison but I haven’t worked out all week because I’m an idiot and gave myself the worst case of blisters on my heels so I can’t wear real shoes much less sneakers. Winter attire and open toed shoes looks ridiculous together. Also, I had take out last night and I’ve taken up puzzling because giving my hands something to do helps quiet the crazies in my head. Here’s to hoping things look up for you soon.

Frogoutofwater says: March 15, 2013 at 11:49 am

I am thinking about your CEO’s comment about your clothes and I am thankful for having had some witty managers who made some memorable comments about the clothes I sometimes wore to work. My favourites:

1) When I first started working as a lawyer, I scored a fabulous (and very distinctive) suit on sale at Barneys. The first day I wore it, I ended up wearing it for 2 days straight because I pulled an all-nighter. One of the very few women partners at my law firm (this was 20 years ago) smiled at me in the ladies room on day 2 and said, “I was going to tell you I liked that suit yesterday … but I think you need to hear it more today.”

2) One swelteringly hot summer day my rather grandfatherly boss (who was also the CEO) had a look at my outfit (sleeveless cropped linen top and slightly low rise linen capris) and said, “I think your top and bottom are supposed to meet.”

As for the wish/need to wear comfy clothes to work when you’re feeling sick, I am thankful that I don’t have to wear a skirt suit, pantyhose and heels anymore (as I did 20 years ago). I’m also thankful for tunics (Boden’s for example) and leggings. While leggings are a bit too casual for my financial district office, I live in them in my free time and when I travel for business. You can look pulled together and feel like you’re wearing pajamas. Likewise, a knit dress, tights and flats can be surprisingly nightgown-like in comfort. I dress like this pretty frequently, and certainly when I’m feeling sick.

Netflix recommendations: MI-5 (British series). The Wire (completely engrossing). In Plain Sight (witty federal marshal protects people in witness protection program – it can be fun to play “what if” and ask yourself (or others) where you/they would live and what you/they would do if you/they couldn’t do what you/they currently do – how would you reinvent yourself?).

Ughhh Crohn’s f’ing sucks. But I am always thankful for puppies and ice cream, both of which help me on the bad Crohn’s days. I’ve decided I’m going to start swinging by the pet store on bad days just to stare at the cute, fuzzy animals (and then probably cry too, since like you pet stores make me sad… maybe I should rethink my plan…). I am thankful for Downton Abbey on Netflix (you should definitely watch it, it’s awesome – I’m a little late hopping on this bandwagon). Finally, I am thankful for a boyfriend who is completely willing to deal with all of the lovely things Crohn’s has to offer.
Feel better, Ali!!!

I have good news for you about the allergies as well. So the Husband was allergic to cats. I’m all about cats, especially ginger ones. Two Christmasses ago, he let me get a cat because he loved me so much (I know, so lucky). He had trouble breathing for about three months (it was rough, I felt guilty but not guilty enough) and then bit by bit his allergies went and he is now cool for cats. So if Brian is willing to suffer badly for a few months, that puppy could be yours!!!
In terms of TV, I’ll back up the commenter above who said MI-5 but I’d also recommend Luther (British detective show with HOTTEST MAN EVER) and Game of Thrones which is amazing. Get better soon…it’s the weekend x

Netfix: Downton Abbey. Just give in. I’m so sorry to hear you’re not feeling well. I will be praying for you. Something not healthy? My 3rd glass of red wine tonight. The cause? His name is Kalvin, he’s a 3rd grade student who annoyed the DAYLIGHTS out of me this WHOLE week; and no, I’m not sorry to be drowning my sorrows in some merlot. xoxo cheering for an Ali victory over Crohns!

I am thankfull for being able to reach out an communicate with people that I have never actually met.
I am thankfull for being able to reconnect with people I have not seen in over 35 years.
I feel we live in a very exciting time.
Art

Hi, Ali:
Sorry you’re in such a slump and feeling so crappy (no pun intended). Hope a lot of puppies come your way. Don’t know what to say to cheer you up except that I haven’t run in five days and just made a batch of peanut butter cookies and ate them ALL myself (okay, gave a few to the dog, but only a few). Hope things works out and you feel great in CA next week.
P.S. It’s 31 in Alaska right now and supposed to sink down to 0 tonight.
P.S.S. I’ve missed every freelance deadline I had this week.
P.S.S.S. The cat threw up a hairball on my pillow last night and I still haven’t washed the sheets because I was so busy making (i.e., eating, i.e., stuffing my face with) cookies instead.
Hugs and good energy,

I’ve had rhabdomyolysis twice and was hospitalized for it in February because it was so bad. I haven’t been able to do any physical activity for 6 wks while my muscles heal. 2 days short of the one month mark I found out I have a genetic issue called CPT2 deficiency, which is why I keep getting rhabdo. Basically my body can’t use fat for energy so when it needs to it uses my muscles instead (fun stuff and feels greeeeaaaat…not really). This also means that I’m predisposed to have another bout of rhabdo with normal exercise. Unfortunately I don’t have any great ways to deal with the emotional effects of being unable to do the things I want to do. My technique now is crying to my fiance and speculating about when I’ll have enough energy to function like a normal person again, while I laze around on my mandatory break from activity. I’m pretty sure those are the coping mechanisms health professionals would recommend.

I hope you feel better soon, and when all else fails watch the puppy Olympics or Too Cute on the animal channel.

Oh, and my old roommate got allergy shots and now she is totally fine with animals! Her butt used to itch from sitting on our couch (with jeans on) before…then after…she could wesr shorts on the couch and nothing…like magic! (Maybe not magic, but pretty close)

PS – this was the first time I’ve commented on your blog and it was so long. Sorry!

Meghan

I love living in this day and age of technology. Being able to talk to anyone around the country, and the world. To develop a dialect and exchange ideas is awesome.

Ali,

I’m really, really sorry that you’re dealing with this. I know how frustrating it is not to be able to…well, function. I’m pretty anemic, and it got back last year around this time, to the point where I couldn’t walk up stairs without getting winded. It’s bad again, and I totally agree- seeing people’s facebook updates and tweets about their marathon training is the most painful thing, next to the physical pain. (Ok, sometimes it’s even worse).

Hang in there. You’ll be better again. In the meantime, enjoy Tyler, and potatoes.

-Frances

yep . I’m with the rest of the group. SO sorry you feel horrible and right there with you to some degree. I spent Thursday in the emergency room for the migraine that wanted to kill me. Where there is migraine…there is no running. And yes, seeing everyone else up their training, kick some ass on the road. Pretty much kicks in the bitter. It can be a daily struggle. Feel better and know you are not alone.

Ali, so sorry you still aren’t feel well. I sympathize big time as a crohn’s sufferer myself. Sometimes we all just need to vent and get out our frustrations since it does suck to see other people happily out living their lives not having to be sure they know where a bathroom is at every waking moment. I hear ya girl and hope you start to feel better!

I know the store where those puppies come from!!! A few blocks up from Bloomingdales right?? I always go in there and ask to hold them and the snooty salesmen are SO beyond rude but I don’t care because the puppies (and kitties) are so cuddly. Even though they are like $3000 each. It is justifiable if you think of it as a ransom to save the sweet little pets from those mean people.

Hi Ali, I hope you’re starting to feel better. I didn’t know much about Crohn’s before I started reading your blog. A few weeks ago I signed up to run a half marathon for Crohn’s and colitis research (CCFA).. and you were truly part of my decision to do so. On our training runs I often need a pee, and I just think of all your struggles with the numeraux deux’s.. i take my hat off to you. I’m a research scientist too and it really suprises me how rarely I see publications on Crohn’s and colitis.. time for change me thinks! If u wanna laugh at my expense and what I got up to yesterday as part of my fundraising then check it out here: http://thecomfortzoneandbeyond.blogspot.com/. If u need to keep the apartment quite while still watching Netflix then I recommend the movie Cinema Paradiso, subititles! Keep smiling girlie.. fake it till you make it :D

I don’t know what to say, I don’t know what I can be thankful for…sorry, very negative Nancy. Just got news that I’ve a stress fracture and I don’t know what to do. Oh I wish I could give you a hug to make you feel better about Crohns.

I am thankful that I had 6 amazing years with my dog Siren and that he didn’t have to suffer anymore. Like you I am frustrated and sad, but trying so hard to stay strong and positive. Hang in there Ali it will all come together. ((HUGS))

I just wanted to say that I was in NYC this past weekend to run the half. On both Thurs and Sat mornings I ran from my hotel near 7th and 57th to run through the park and each time I was like ‘i wonder if i will see Ali’…and I looked at every person to see…Sad face that I did not. Hope you feel better!

Hi Ali,
As usual you are so spot-on – it is so true about invisible illnesses in that no one knows gets that you’re sick while you walk around feeling awful. When I’m in your shoes, I actually am glad when I get dark circles under my eyes since it at least gives people a hint that maybe I don’t feel well. I hope you feel better. You’re blog really is the best and your a constant inspiration for all who have IBD. Thank you!!

Hi Ali, This post is mad old but I thought I’d say hi anyway. I know how you’re feeling. I’m not in the level of discomfort (agony!) that you are, but I have issues as well that are frustrating as hell. My problem is I keep getting colds/sick that stuff up my nose to the point of not being able to breathe through it at all, and the unfortunate thing about that is that I have panic attacks when I can’t breathe through my nose. So as soon as I feel a cold coming on (every month or so), I start freaking out, and that stress causes me to get even sicker and to break out in a full-body rash which takes two weeks to go away.

I also cried my eyes out in the doctor’s office asking the same questions as you. Why? What am I doing wrong? Make it stop, please, I can’t take it anymore.

Seventy five allergy shots and a few vials of blood later, and I am no closer to understanding what’s going on.

Right now I’m on an elimination diet — no dairy and no gluten. I’ll be on it for three weeks and then we’ll revisit everything and decide what to do next.

I got this book (http://www.amazon.com/The-Immune-System-Recovery-Plan/dp/1451694970) which I really like so far. These functional medicine doctors rally believe that with the right diet, we can cure so many of these problems. I don’t know about you. I feel sort of optimistic when I read it, like I just haven’t found out what my problem is yet, but that I will. If you’re into that kind of thing, I recommend you pick this one up. I really really really like it.

Good luck with everything. I’m going to read your more recent posts and hope for some good news. :)

(longest comment ever omg)

Leave a comment

required