Survival Of The Sickest

Date: January 29, 2014 at 5:57 pm- by Ali- Comment(s): 108

This post was going to be so happy and so positive, you don’t even know.

And you never will.

But sit tight, because you’re going to get that whole story.

I would like to think I taught him everything he knows.

I like to think I taught him everything he knows.

Lest you think things are all dark and scary in The Land of Sickness right now, I will start this off by sharing with you a common misconception about people with Crohn’s disease and other digestive illnesses.

It’s probably implied that when people such as myself are this ill, we are gross and unsexy. I’m here with a story to prove that wrong.

I SHOWERED THAT DAY. I had to go to work, so it was a big deal. I put on mascara, too, and also a bra.

I SHOWERED THAT DAY. I had to go to work, so it was a big deal. I put on mascara, too, and also a bra.

I was at the doctor about a week and a half ago for my second clinical trial appointment. This was the appointment where they’d do my physical exam and a bunch of other tests in order to make sure I was eligible for the study. I thought I’d already been accepted at this point, but apparently there’s a difference between being “enrolled” and “accepted.”

For the week prior, I’d been tasked with keeping a health diary (which I’m still doing). I have to keep track of my daily temperature, the number of daily bowel movements I make (sickeningly high and well into the double-digits) and other useless numbers, like rating my pain and “state of well-being” on various scales. Then the Clinical Study Ladies add those numbers up and it all computes itself into a Final Number. The Final Number determines whether you’re eligible for the clinical trial.

Math. Science.

And at that fateful appointment a week and a half ago, I was told that, according to my bowel movement and temperature and random scale chart data, I’m “too sick” for the study.

Fantastic.

So I got myself worked up about this and was very upset. Meanwhile, I was getting fluids via IV, because I’m all dehydrated, so my right arm had a catheter in it and the IV fluid bag was being held up on the pole attached to the chair I was sitting in.

When I get worked up, I have to go to the bathroom.

I was in the exam room alone while the doctor and Study Ladies discussed my situation, and there was no pole-on-wheels that I could use to take my IV bag on the go.

“Whatever,” I told my hysterical self. “I’ll just hold it up with my left hand while I go to the bathroom.”

So I did. I bolted for the bathroom, IV bag in my left hand overhead, catheter still firmly implanted in a vein in my right arm.

I made it to the bathroom, while still holding the IV bag over my head, and then came that vicious, vicious nausea.

And then โ€” this is the part where I disprove the “people with Crohn’s are unsexy” myth โ€” I started throwing up.

I’m operating on a mostly empty stomach these days, so it was less of a real throw-up and more of a spastic dry heave/coughing situation. But still: Crohnsing + IVing + IV bag holding + puking = one very beautiful girl. And also I was crying while this was going on.

I can laugh about it now, because by the time I got back to my exam room the Study Ladies said I actually could be part of the study and blah blah blah something else about math and science. So that appointment ended on a very happy note.

Engineers' Gate is my happy note. You knew that already. But I took this picture on my way home, through the window of a cab, because that's as close to Bernie's Bench as I get these days. RIP exercise. RIP great outdoors.

Engineers’ Gate is my happy note. You knew that already. But I took this picture on my way home, through the window of a cab, because that’s as close to Bernie’s Bench as I get these days. RIP exercise. RIP great outdoors.

Then, this past Monday, I got the most wonderful phone call from Study Lady #1.

It was time.

She scheduled my “randomization” appointment for Friday, January 31.

I was finally going to get the drugs! Or the placebo.

But even if I were to get the placebo, I told myself, it would work, damnit. I would will it to work. I’ve spent this week feeling so excited and so hyper-optimistic and, between the fevers and the night sweats and the grossness, feeling an overwhelming sense of calm. I’ve had so much confidence that this clinical trial is going to be what works for me. After all this, after everything else I’ve tried, this has to work…right?

So that’s what today’s post was going to be. The really excited, really anticipatory “last sick girl post.” Because by Monday I’d already be feeling better. I started thinking about my return to the subway, my return to yoga, my return to Central Park and, most exciting, my return to a spring half-marathon I really want to be able to run.

Except that not.

Today Study Lady called me again.

Apparently if you’re on a medication, you have to have been on it consistently for eight weeks or longer before you can begin the clinical trial.

I started the methotrexate seven and a half weeks ago.

And Study Lady is out of the country next week.

So now I have to keep waiting. Now I don’t get my miracle medicine until February 10, and I cannot even begin to explain how far away February 10 feels when January 31 was so close I could feel it.

In this moment, fresh off that phone call, I am heartbroken and frustrated. I know these feelings will pass and I’ll go on with my life as I have been, but right now I’m sad and I miss the optimism that was carrying me through the week.

And the thing is, I never even wanted the methotrexate!

The medicine that I knew wouldn’t work, and that even my doctor sadly predicted wouldn’t work, is now the reason the medicine I truly believe in is being withheld from me for almost two more weeks. I believe the methotrexate is poison and I believe it is making me sicker (my doctor wants me to stay on it during the trial, which I really don’t understand and can’t really explain…we’re going to talk about that more when I see him next).

My hair is falling out at scary-rapid speed, and my face has more bumps and dryness and weirdness on it than when I was a teenager. The nausea is horrific and I’m tired 100% of the time.

One day I'll regret taking this photo to try and prove a point, but today it is being used to show you how I feel when I don't feel well at all. This was last night. I had such bad chills that I was shivering uncontrollably, and shivering makes my stomach hurt more. So I just cried about it like a little bitch. And took some Tylenol and eventually my fever broke and I went on with my life. Oh the drama.

One day I’ll regret taking this photo to try and prove a point, but today it is being used to show you how I feel when I don’t feel well at all. This was last night. I had such bad chills that I was shivering uncontrollably, and shivering makes my stomach hurt more. So I just cried about it like a little bitch. And took some Tylenol and eventually my fever broke and I went on with my life. Oh the drama.

There’s also the weight loss, which isn’t from the drug but from the disease itself and my body’s inability to retain anything. Since Christmas, I have lost more than 15 pounds. It is the lamest diet ever.

A few nights ago while FaceTiming with my parents, my dad said my collarbone “looked disgusting.” Though at work the next day, a coworker said my “cheekbones look amazing.” But that’s just the difference between parental concern and working in an office filled with former dancers with body issues.

Last self-portrait of this post, promise. This was the day my dad called me "gross." I know he loves me.

Last self-portrait of this post, promise. This was the day my dad called me “gross.” I know he loves me.

That just about brings us up to speed.

I’m very sick. I’m very uncomfortable. I’m in constant pain and I’m not sleeping. I hate when people ask how I’m feeling because even though I love them and appreciate their care and concern (really I do), I just feel like I’m complaining when I answer truthfully, and nobody likes a complainer!

The other day, my wonderful college roommate and BFF said something to me that I keeping going back to.

This is Dee (the bride one on the right)! We were roommates all throughout college. We went to Australia together and she had to take me to the hospital because Crohn's made me so sick there. She's a good one.

This is Dee (the bride one on the right)! We were roommates all throughout college. We went to Australia together and she had to take me to the hospital because Crohn’s made me so sick there. She’s a good one.

I was updating her on these health things and the severity of everything, and she said, “I can’t believe you’ve been doing this for so long. I would have given up a long time ago.”

And my only thought was, “Well what other option is there? How do I even give up?”

I don’t feel like I’m “fighting” Crohn’s disease. I don’t feel like I’m “kicking this disease’s ass” or doing anything to prove I’m “stronger” than the disease. In fact, I believe the disease is definitely winning this round and I’m barely still in the fight at all.

All I’m doing is staying alive. One day at a time, I just get through the day. I try to be happy as often as possible, but most of the time I’m just kind of uncomfortable and out of it. So I’ll cry a little if it helps. And I wear sweatpants. Only sweatpants. Even when I go to work.

It would be sad to end this on an upset note, so here is a happy thought: The first day I’m healthy, like really healthy, I’m throwing a party and you are all invited. Please bring an appetizer with melted cheese or a whole cheese pizza.

RSVP below.

Thanks. Love you forever! See you at my party.

108 Responses to "Survival Of The Sickest"

I cannot wait to melty cheese party with you!

Alvaro Cardoza says: January 29, 2014 at 6:31 pm

As a fellow Crohnie, I wish you all the best! I battled it hard all five years of undergrad engineering and tried to make the best of times, but it was super challenging. I certainly missed my fair share of classes (and even semesters at times), but some how kept on trucking. I even got myself into grad school somehow haha. I was in a similar state where no drug seemed to work for me and I basically just fought it until it wore me out and had to have some surgery in December 2012 (it’s a damn good thing the world didn’t end then haha. I actually got out of the hospital on day it was supposed to “end”). I have since gone from around 94 lbs post surgery to now 160 and feel better than I ever have in many years. The docs put me on Remicade to keep me in remission and it seems to be doing the trick thankfully. After all this rambling, I just want you to know that there is definitely another side to this that you will eventually reach and be able to enjoy yourself 110% again. I’ll be saying some prayers for you and I truly hope the trial ends up working for you! Stay strong. You’ve got this! ๐Ÿ™‚

As I currently live in Asia, where people don’t really believe in cheese, I will be showing up at the cheese party with massive anticipation and a very empty stomach. Count me in. I’ll pick up some fresh mozz/tomatoes/basil on the way!

I’m just some random reader but I am totally rooting for you. You don’t even have to invite me to your cheese party, I am still hoping you get better ASAP.

Everyone is invited to the party.

Hi! Another random, here! I will never, ever turn down a cheese party, especially a celebratory cheese party. I would bring much cheese. Ali, keep on keeping on, lady. You’re amazing.

I’ve been reading your blog for a couple of years but never commented before. I don’t usually comment on blogs but I felt compelled to say how sorry I am that you are going through this and I really hope you recover soon!

Cheese me in, please!

In all seriousness, I’ve been reading your blog for a long time now, and my heart breaks for you. I SO badly want you to be chosen for the treatment arm of that study and kick Crohn’s where it hurts! And let me preface this by saying I have absolutely no idea what you’re going through– but have you ever thought about maybe trying an SSRI or Cymbalta or something to just get you through this period of junk? I totally, totally understand if you a) don’t want to respond to that, or b) don’t feel like it’s for you, but I just wonder if it would maybe just help the fog lift a little bit and make this fight a little easier to bare (bare? bear?). I’m coming from this with the perspective of a pharmacy student, so there’s that, but also as someone who’s seen Zoloft and Lexapro really, really help close friends get through times when they couldn’t see that things would get better. Anyway, sorry this is so long, but I just wanted to ask!

I think Ali has lots of doctors making medication suggestions to her. Also, I think that she actually has a phenomenal attitude but the problem is her intestines, not her brain chemistry. This is a great suggestion in general but probably not applicable to this exact situation.

Very good points! I definitely didn’t intend to imply anything about Ali’s attitude– sorry if it came across that way. I so agree that her attitude is incredible (probably better than mine, and I’m not going through anything nearly as difficult), I just wanted to offer that up in case!

Oh Ali. I’m sorry. Truly, sincerely sorry. I think about you all the time… Selfish, but it makes me feel better sometimes knowing that I’m not alone in this battle against our colons. I hope that’s not weird. Thank you for being so awesome and I’m sending every ounce of posititvity that I have your way!!! Hang in there, buddy.

I think about YOU all the time. Update your blog more often for me, please.

Thinking of you Ali! I will bring cheese and anything else you desire (16 Handles? Mac and cheese?)

Fingers crossed that Feb 10th will be here sooner than it feels…

I will bring ALL THE CHEESE!

RSVP: YES (I’ll clear my calendar)

Methotrexate is a hell of a drug. I was on it last year for RA. I’m surprised the clinical trial is okay with having you on the methotrexate at the same time as the experimental drug…wouldn’t that skew results? Or maybe they are controlling for it in the analysis.

I so hope you get a break soon and start feeling better.

ANYWAY. I will just leave you with this. https://www.youtube.com/watch?v=H4uDVMpKG_A

They’re OK with me being on it as long as I STAY on it…at least that’s my understanding. If I came off it, we’d have to wait for me to be off the drug for eight weeks, which would delay starting the trial for a long time, and I didn’t want that. So yes, like you said, they are controlling for it.

I hate when people ask “How are you?”, you know the voice. Do they really want to know how I’m feeling? I don’t think so.
Glad you got into the study!! Need some VT cheese?

RSVP yes with all the pizza I can carry and maybe a cute puppy or three – wishing you strength as you take it one day at a time toward that day very soon when you start to feel better xo

I was diagnosed “late” with Crohn’s Disease at the age of 30. I suffered with many of the same symptoms you have. I even managed to have a healthy baby while in a bad flare-up. I was so strongly against surgery for many years – feeling that was the last resort. I navigated my way through different doctors looking for the “right” one. I ended up seeing a doctor by the name of Dr. Abrue out of Cedars in LA. She coincidentally moved to NYC, and then to Florida. I will never forget sitting down with her, and asking her, “How do I know for sure it’s time for surgery?” She said, “Well, what’s your quality of life?” That was what I needed to hear. I had been suffering with pain for so long, and trying to raise my kids outside of the living room was so difficult. I had surgery, and while it’s not the cure, it is so much better. I don’t have pain any more. That was the worst for me. I do still have other symptoms, but I can work and I have many of the freedoms back that Crohn’s steals from us. I know one size does not fit all with Crohn’s, but I know there is a solution for you too. Hugs.

Here I am- I don’t know you, but my heart hurts for you like it would for any if my closest friends. Each day I check in, hoping for a positive change in your health.

For now, know that all of us ‘strangers’ are rooting for you every.single.day!!

Healing hugs to you lady. Sending you lots of positive vibes to keep holding on. Xoxo

I have been reading for awhile but don’t comment much. Just wanted to tell you that I love reading your blog and you are an incredibly inspiring woman. I am looking forward to the cheese party (or at least reading all about it) because I know there will come a day where you’re not sick anymore.

I hope you feel healthy soon! Your blog is well written and honest – I sure hope you know that your words are pretty powerful.

I will start stocking up on cheeses of all varities ASAP, you will need variety at the party right? Sending you happy thoughts!

Hang in there my friend. I can’t eat cheese, so I can’t bring pizza, but maybe a QU Kickline Reunion will be the best thing for your healthy back to life party??!! xo

Lots of positive thoughts coming your way! I’ve been reading your blog for a year, and although you don’t feel like it or think it, you’re fighting-and your fighting keeps all your runners and me fighting! Stay strong and can’t wait to hear about your spring mileage and cheese parties!

Hell yeah I want to go to the party! Feel better gorgeous.

Thinking about you all the time. I hope that you’re able to lean on friends and let people take care of you a bit. I had a station set up in my bathroom for awhile; ipad, magazines, cup of tea. As weird as it sounds, sometimes a change of scenery can help you not feel like such a sick person (trust me, I know- I was going upwards of 20x a day pregnant and with a newborn). Cortifoam, a big, long prednisone taper (8 months?) and a doctor who held my hands and told me that we were going to give it all we had – saved me. Her name is Dr. Shah and she’s at Stanford, if you want some help from a new MD. Sending you warm, cheesy thoughts XO

Yes, I totally agree with the change of scenery! I’m planning to take some time off work next month so I can escape to New Hampshire for a while and let my parents take care of me. They have three bathrooms at their house โ€” it’s a dream come true. (Also, my last doctor was named Dr. Shah, too! But he was a guy sooooo probably not the same person.) Hope you’re feeling well!

I am in a somewhat similar situation as you–not quite as severe though. My doctor is pretty stumped what to do, and it is a very discouraging feeling. I 100% agree with you when people ask how can we keep going….is there another option? I just want you to know that you are not alone! It sounds like there’s a lot of people rooting for your recovery, and please just hang in there a little longer!!

Ugh, so frustrating. I’m so sorry to hear that ๐Ÿ™ Doctors are supposed to have all the answers so they can fix us! Take good care of yourself โ€” I’ll be thinking of you!

I’ll probably bake something along the lines of bacon cheddar scones for this cheese extravaganza.
Until then, sending you lots of hugs and hoping Feb 10 is here before you know it!

I’ll flipping fly in from SF for your party! Oh Ali I’m so sad for you. Hugs x

Um, you BETTER fly in for the party. You don’t have to bring cheese because you will have a long commute to get here.

It is so hard. You really are such a trooper…even with the crying and “whining” which isn’t really whining when you’re sick and chronic. Good stuff is going to happen. It really is. Really.

I will bring a giant wheel of brie, and crust it with brown sugar. Awesome cheesy meltiness.

You are such a strong lady! And you’re totally allowed to complain. I’m sending good thoughts.

I just realized why I love your writing so much. I don’t have Crohn’s, but I can still relate to you. Because you explain everything. It seems like the standard is to either pretend things are okay, or to say that it’s hard because people don’t understand. You lay it all out for us, so we can relate to you even if we had no connection to you or your story when we started reading. You always say that your readers keep you going, but you enable us to. Conclusion: being sick all the time is the worst and an extra 10 days of being sick is even more the worst, and you’re an awesome writer. And yes to the cheese party.

This is the nicest comment. Thank you so much. Sometimes I feel like I do a horrible job explaining this disease, so it’s nice to hear I’m actually getting through to some people, somehow! See you at the cheese party.

Jennifer Y says: January 30, 2014 at 10:15 am

Agree! And I’ll totally come from DC to the cheese party.

oh ali. i like where your head is here. this all seems beyond awful, but all you can do is keep on soldiering on. i can’t imagine how challenging all of this is, but i can see very clearly the celebration when you’re feeling healthier!! there will be pizza, balls, and treat. lots of it. can we also have a puppy in the room? i’m sure we can make that happen. maybe a couple of crow poses thrown in for good measure. and party hats. ya down?

Can you bring some special banana bread to the party, too? And bring Anthony, because you know how much he makes me laugh. We can work on yoga poses while the boys go up to the roof to break dance. I LIKE THIS PLAN VERY MUCH.

Piggy-backing on this, because I will be at this party, slingin’ cookies, eating treat, and bringing all the finest cheese you could imagine (or really, the second or third finest cheese, because Sofia and Kristan always bring the best cheese).

there will be approximately seven banana bread varieties to sample from (or gorge on). and the baker man anthony will be present and funny. i like the yoga + break dance idea. TIME EFFICIENCY!

Love ya!!! How do you feel about gouda cheese??? …

Although I too am just a random reader I am RSVP’ing and will bring massive ammounts of any kind of cheese you want. Amen! You are truly an inspiration…and for the record colons suck! Stay strong. I’m rooting for you here in Canada, and as Allie said, I too sometimes find comfort in knowing I’m not alone in all these shitty (literally) times.
Since I know you like puppies here’s a feel good story that happened in my city this week: http://thechronicleherald.ca/metro/1182928-halifax-rcmp-officer-rescues-frigid-puppies

Thanks for writing this blog… I was diagnosed with colitis last year & it has been a non-stop struggle. I hope you are feeling better soon.

…Oddly enough, I am from the same city as Jasmine, the previous commenter!

Oh good, you can commute to the cheese party together!

That sounds perfect! I can’t even remember the last time I had cheese….
I wrote about you in my latest blog post. Check it out when you have a chance. I hope you are feeling better soon. It’s a very difficult & frustrating fight.

http://fitgirlslookgoodnaked.com/2014/01/30/this-too-shall-pass/

This could not be any more frustrating! I am so sorry you have to wait longer and I really hope this clinical trial works for you. And I would like to RSVP to the cheese party please. And my sister in law laughed at me when she found out that I considered making Velveeta/Annie’s “making mac & cheese.” She makes the real stuff, with Beecher’s flagship, so you should probably invite her too.

ANNIE’S IS DELICIOUS AND MAKING IT CONSTITUTES HOME COOKING. Your sister should definitely come to the party, too. She seems talented and I like her already.

I don’t comment much at all, but I just have to say that I am thinking of you and can’t wait for the “I am better post”. I hope I am eating cheese while I read it. I will bring lots of cheese, maybe fried, to your party. Feel better ๐Ÿ™‚

I don’t have anything to say but I’m sorry and here is a picture of my kid and dog dressed up. Hope you get some cheese soon!
http://www.flickr.com/photos/chadthebad/5968640192/

I’ll bring a huge pot of queso with yummy sausage and tortilla chips. Tex-mex comfort food directly from Texas. Feel better.

Do you know that Trader Joe’s has cheddar bacon?

I would also offer to bring my 3 month old German Shepherd puppy, but I’m fairly certain she would eat all the cheese. Spaz.

I make a KILLER nacho dip, but the cheese isn’t melted, is this acceptable or am I uninvited?

Hoping the days fly by quicker than they are right now!! That will be some party, and I look forward to hearing all about it. ๐Ÿ™‚

Hi! RSVPing for the Ali is Hot Party. I’m single, so please invite single rich male friends that have careers as professional athletes. I’ll be reppin’ Philly with cheesesteak dip and hoagie dip. They both have cheese. See you soon!

Ali,
My heart is breaking for you. I feel like you’re not getting all the help that you could be. Have you ever considered following a strict enteral formula diet and seen if it helps? It is something that other countries use to treat IBD and Crohn’s but unfortunately in this country we’re so used to using medicine it’s difficult to change that. Would you ever consider trying it for a few weeks and seeing if you show any improvement? I saw a comment on your last post that a woman’s son went into remission after an extending period of time on tube feedings — not that you’d need a feeding tube, you can drink them. Will you please let me know if you’ve already tried this and it didn’t work? I know it would be worth a try if you haven’t already tried it in the past. I’d feel awful if it could help you and you don’t know about it.

Agh! So many typos in my comment… I just really want you to feel better!!!

So bummed to read this as it was SO great to read your NYC recap. I hope that the trial meds are magic. I wish there was more good advice or motivation to pass along. I guess, here is to hoping that this too will pass. Hang in there!

Definitely in for this party!! I’ll bring pizza (ninja turtle style, so extra cheesey!!) and my two puppies!!

Sending positive thoughts, I’ll be wearing my ‘I Heart Sweat’ shirt this week to cheer you on.

Lynnie

I just want to say that you are 100 percent fighting the disease. You RUN races when you’re feeling better, you try and you try and you try again. Going to work and trying to feel happy IS fighting.

Also, I’ll bring cheesy BBQ dip to the party if that’s OK. ๐Ÿ™‚

I will spend every possible second looking up the world’s most delicious cheesy recipes so I can bring them to your party. On second thought…I’m not the best cook. I’ll research all the GREAT cooks so they can make GREAT cheesy-goodness-dishes for you. And then I will make them live next door so you can have a 24/7 cheese buffet.

I know you don’t really know me (since I don’t often comment) but I think about you a lot, and I’m always so impressed by your positive attitude and strength during what is such a horrible time in your life. Maybe you’re not always happy go lucky Ali, but to the casual reader, it seems as though you are doing all that you can to keep it together.

I am also putting in my RSVP of yes to the cheese party. I wanted to do it with a picture of a cute animal eating cheese, but sadly those are hard to find! But I will keep looking.

Reading this made me feel better about my jacked up back. That’s not helpful for you of course, but think of it as community service. I need to be reminded that I’m not shitting painfully 37 times a day and it could be worse.

I’m hoping for a miracle drug for you!

I just read all the comments on your latest post. I think we need to form some sort of support group (or rage-hate group) where we complain about doctors and insurance companies and policies that are bullshit life ruiners.

I am so bummed to read how awful your feeling. I wish you could go back to your visit this past summer when we went bike riding, played Catchphrase & Washers and sunbathed on the beach! I hope your miracle drug works b/c I have been so pumped to see you at the wedding so we could dance our butts off. Feel better. Thinking about you!

I will be better for the wedding, I promise! When I’m laying on the couch, I online shop for dresses to wear to the wedding, so I’m ready to go! We’re going to have the best time and I can’t wait to see you!!

You better plan for a BIG BIG party, because you have LOTS of readers behind you, hoping you’ll get better soon (for the party, obviously ;-)).
I am thinking of you ๐Ÿ™‚

I’m a first time commented but long-time reader. Totally rooting for you and hope you feel better soon!

OH, I’ll be at your party, with lots of melty cheese and the entire series of Friends. Could I BE any more creepy?!

A random fact that might bring a smile to your face: I just learned today that a fear of cheese is called “turophobia.” Not that you have this phobia. And I don’t either. I’ll bring an extra cheese pie. x

I’m thinking about you all the time girl, and despite relative “experience,” I cannot imagine what you’re going through. I agree with Dee…I think a lot of people would have given up a long time ago, whatever that interpretation may be. It’s not fair for people who enjoy life as much as you to be alienated by it, and at this point…life owes you a shit ton of happiness.

Sending so many healthy thoughts your way <3

Hugs and puppy kisses to you. I’m a longtime reader, first-time commenter; you’re blog is my favorite. You’re filed under “Running” but you should be under “Friends” given how often I check–has Ali posted today???

Put me down for mozzarella sticks and two crazy Jack Russells!!

Ali,
I really loved this post. I always like when i’m able to be light hearted and jokey about how pathetic and sick i get. It’s always after, never during, but makes me feel better when i can laugh and make fun of my not at all fun(ny) situation. It also makes me feel better hearing your (and other commentators) stories of sickness. I’m not AT ALL saying i’m happy to hear your sick, but it feels less isolating to be able to relate to someone. Even someone you don’t know. You know what i mean? Three years ago i cried at my then drs saying there was no way i could continue the way i was feeling. Little did i know how much sicker i could get. Last year was awful for me. and yes, and many points just felt like i just couldn’t do it anymore. Knew that i was losing. The end of the year was a bit better, and then around January 2nd or 3rd i noticed i was starting a flare. It started with lots of weird dry rash spots (do you ever get those?) and broke my heart a little when i noticed it. So far it’s been bad, but not awful. Bad i can do. My standards of bad have changed so much. My tolerance has changed so much. I try and keep that in my mind as my positive. Try and let that get me through the rough patches. So Keep what positives you can to get through. That and cheese party aspirations. I have big hopes and big beliefs that this new drug is going to be it for you!

your blog is so honest and so from the gut (pun intended?) that it makes it beautiful. you’re a f*cking bad a$$ and a beautiful woman, cheekbones, collarbones and all. I am sending amazing vibes or strength, patience, and self love. and you just keep showing up and getting through….b/c that’s what we do – we DO IT. xooxxo Muah!

So sad you’re still sick. How do you feel about cheesecake? We need some dessert at the cheese party!

Hundred percent in for the party! I will make a plethora of cheesy delicious things – cheese pizza, cheese sticks, cheese dip, cheese dipped in cheese fondue!

Seriously, I know you don’t know a lot (or most) of us, but you’re such an inspiration and are in our prayers!! And getting up every day and trying to be happy IS FIGHTING! You are amazing!

This makes me sad and angry and annoyed. I wish they would find a cure for this annoying disease. Fingers crossed for the study drug and even if you get the placebo, if it works for the others you then will get it too!!

Wish I had something worthy to offer but know this stranger thinks of you often! I also tell my (Crohns) bf to read your blog. We talk about you like we know you! ๐Ÿ™‚

I want in for the party! But I have a better idea… how about we have it at my house in Hawaii? When you weren’t able to make your Hawaii vacation last year I felt so bad! So next time you are feeling better and you have some free time on your hands (right, who has that?) come on down and you’ll have a place to stay! I will even bring the cheese from my home state of Wisconsin!

Lauren W. says: January 31, 2014 at 3:50 pm

I’m RSVP’ing for that party!! Totally one I’m looking forward to attending because it’s gonna happen…for reals. Like soon, I have faith. A good friend of mine once said to me (when I was in a dark place from some personal stuff), “I’ll believe for you until you believe again.” It made me cry even more, but it also made me feel like I wasn’t alone in the fight. We’re all with you Ali! p.s. I’m gonna bring Velveeta shells & cheese, because it’s the cheesiest and my Gram used to make it to make me feel better. ๐Ÿ™‚

Oh man…you went and got ME all choked up with that quote. Shitttt. <3

Ali,

I cannot and will not say the clichรจ things like “feel better” or “this will pass” or the ever so popular “I know how you feel”. What I will say is that this totally sucks, you don’t deserve it and even though I’m way too young (yeah!) to be your mom I am a Mom and can’t imagine that she doesn’t want to sweep you and Brian up and trapse you back to NH where she and your Dad could (help?) fix it all. Know that you ARE fighting the disease and while you think that you aren’t just sitting with all your discomfort seems like fighting to me. Hang in there I have faith this med will do something, it’s your turn. (((HUGS))). Sorry if this post makes no sense, Im not a writer like SOME PEOPLE. ๐Ÿ™‚

“But thatโ€™s just the difference between parental concern and working in an office filled with former dancers with body issues.”

This made me laugh out loud.

RSVPing “WILL DEFINITELY ATTEND” to your cheese party.

I hope you get the medicine you need and soon. This makes me really angry at the clinical trial people but I know there is so much red tape involved. Ugh.

Thanks to fucked up hormones and whatever is residing in my, I’ve gained 15 pounds in about the same time you’ve lost it (not a complaint, just a TWINSIES observation), which means I have approximately 0 pants that fit.

So…I’ll drink to sexy parties, yes?

Cheers!

But seriously, been following along on Twitter & so sorry to read about everything you’ve been going through. Sounds miserable, painful, uncomfortable & like a huge pain in the ass. Here’s hoping you feel better & can put this shit in the past ASAP.

In the meantime, might I recommend a sweatpants-only lifestyle?

Thanks – your advice is excellent, though I hope soon you won’t have to have a sweatpants lifestyle yourself. Though they are mighty comfy…

I am so sorry that this is happening… I am definitely in for a big Crohn’s ass-kicking party. Sending you lots of hugs and cute puppies.

xo

Quite long post but hey! I enjoyed every part of it. I like how you are telling your memories with your BFF and it reminds me of my good girl friends as well.
Hope everything will be fine to you.

Stumbled upon your blog while lying in bed feeling completely sorry for myself cos I’ve been having the worst Crohn’s flare for years recently. Was improving a bit then woke up feeling crappy again today. My Crohn’s is mild/moderate but I’m one of the lucky 1 in 4 that has the arthropathy nonsense. I take tons of pain meds ( the upside is it stops me doing the bathroom bolt) but generally my poor old bod and meds do not get on at all. Have tried so many things and nothing works the way it’s supposed to. All that said, I read your blog and smiled – my achievement for today! Love the way you write and your whole outlook on this bastard disease we share. Can’t eat cheese tho’ I love it, and it’s too far to travel to the party from the UK but will be there in spirit for sure!!

Frogoutofwater says: February 3, 2014 at 3:47 pm

When (note that I said when, not if) you get better, I wil send you the details for a restaurant I went to in France where the cheese course selections were presented on a slab that, I kid you not, was 3 feet by 8 feet long and carried by two people. And there was a separate sled for the goat’s cheese.

I can’t wait for our pizza party! I will buy all the toppings. Thinking of you, Ali <3

Longtime reader, never commenterโ€ฆjust wanted to say I sincerely hope February 10 brings you a dose of the real drug and that it’s finally the answer. I live somewhat far away but cheese can be delivered via FedEx right?! Hope the party is so massive you gain those lbs back, like, instantly ๐Ÿ™‚ In all seriousness though, wishing you the best. You’re clearly one hell of a fighter.

RSVP – HELLS YES. I am bringing baked brie and other awesome stuff. xoxo

I’ll bring you some of Chicago’s finest deep dish. I feel like you should have many different pizza options at the party. Maybe the cats will come too?

Ali- I will simultaneously dance and eat a piece of cheese (i.e. dancecheeseparty) on February 10 just for you and for good luck. Not so long from now- thank goodness. I think about you all the time! Happy thoughts from me to you!

I’d bring you buckets of melty cheese if it’d help you feel better, with one caveat. You’d have to share because cheese is my jam, in a non-jam on bread type way.
February 10th is getting closer and I’ll be rooting for you on that day….real drug for Ali, real drug for Ali, real drug for Ali. Spin class, marathons, sexy sweat pants, work, and puppies.

I have been battling Crohn’s for over half my life. The whole shebang.โ€ฆwhat I call “standard Crohn’s”. Than came fistulas, abscesses that constantly drain. Tpn and pain and fever that never seems to let up. I have to go halfway across country to Cleveland clinic to have an 8th surgery (and I believe it will be a two or three parter). Bottom line Crohn’s sucks. And your right, what is this part about being strong? People always say”you are so strong”. No I am just existing and hoping that This will be THE SURGERY that puts you “semi-normal” again. But I am not even sure I remember normal.?.?As you can see, another bad crohnie day. But as they say, “this too will pass”.

Can I fly over from the UK?

What is a catheter in the US, it can’t be the same as one in the UK

Add to say, if it’s what I think it is we call it a central line or PICC line (I think)

I’ll bring some cheeseballs. Party time!