Adjustments

Date: July 8, 2014 at 9:49 am- by Ali- Comment(s): 59

I’ve been wanting to write for a while.

A big reason I haven’t been posting — so much for that “groove” I thought I’d hit — is that I simply don’t have time.

A bigger reason for the absence is that I feel like I’m in a state of adjustment right now. A state of “waiting for everything to settle.” The big changes — the new job, the new medicine — have happened already. Now I’m letting them all sink in.

This “place of adjustment” isn’t a bad place to be. It’s just a place without many absolutes. And I used to really love my absolutes and my guarantees and my sure things.

Sweaty rage. Watch your back.

Sweaty rage. Watch your back.

I’ll break it down for you…

WORK.

Each day, I’m figuring out exactly what my job entails (a little of everything, it seems?). I’m also doing a decent amount of freelance work on the side, writing for my old company and other media outlets. So balance is a thing I have yet to find. But I love my new commute, I adore many of my coworkers and I like wearing workout clothes to the office.

I FINALLY MET JENNY OMGITSJPAX IN PERSON. It was everything I dreamed of. It was at a work event. This is my work attire. Follow her on Twitter. She's so funny. I asked her if everyone tells her she looks like Erin from The Office and she was like "YES OF COURSE EVERYONE ASKS ME THAT. YOU ARE UNORIGINAL."

I FINALLY MET JENNY OMGITSJPAX IN PERSON. It was everything I dreamed of. It was at a work event. This is my work attire. Follow her on Twitter. She’s so funny. I asked her if everyone tells her she looks like Erin from The Office and she was like “YES OF COURSE EVERYONE ASKS ME THAT. YOU ARE UNORIGINAL.”

So many of the people I work with are badass athletes, so it should come as no surprise that the words “triathlon?” and “training plan” and “fall marathon” are dancing around in my head.

MY HEALTH.

I feel good! At my appointment yesterday, I told my doctor, “I feel really good. Not good like ‘normal person good,’ but good for me. Good for someone with Crohn’s disease.”

On the one hand, that’s awesome. I feel 600 times better than I did three months ago, and 832 times better than I did a year ago. The positive change from where I was one year ago — firmly planted at rock bottom — is monumental. I am so obnoxiously grateful to feel this healthy. I can leave my apartment, I can run, I can race, I can go places without panic attacks. It is all such a relief.

November Project fun! COME JOIN US ON WEDNESDAY IT'S THE BEST.

November Project fun! COME JOIN US ON WEDNESDAY IT’S THE BEST.

On the other hand, it’s a bummer that I have to quantify things as “good enough” and “as good as it gets for someone with a chronic illness.” That frustrates me, because I know that “normal” people still get to feel so much better than I feel at my best, but I’m trying not to dwell on that. What’s the point? I can’t remember the last time I felt as healthy as I do now, so I will absolutely take it.

Look how good I feel! Brian snapped this gem while I was in a post-workout coma this weekend. At least I covered myself up somewhat with that pillow?

Look how good I feel! Brian snapped this gem while I was in a post-workout coma this weekend. At least I covered myself up somewhat with that pillow?

THE CLINICAL TRIAL & THE METHOTREXATE.

The total duration of the study I’m enrolled in is 112 weeks. I’m only a few months in so far. I won’t find out until the study is over whether I started with the drug or the placebo, but all patients enrolled in the trial are now guaranteed to receive the drug, so yay. And, clearly, it seems to be working!

I go to the doctor every four weeks now to receive three injections of the mystery drug (its study name is MEDI2070). They take my vitals and draw lots of blood, I take a pregnancy test (every time — no babies allowed in the study!), and then the doctor comes in to chat with me and do the routine examinations. Granted these days our chats are more about running (he’s training for his first marathon!!!) than Crohn’s, but that’s just fine. Then, the doctor gives me the three shots in my stomach and I stay to be monitored in the office for 30 minutes to six hours (depending on the visit).

No more IVs! Just lots and lots and lots of shots. Shots shots shots shots shots shots EVERYBODY! You know? That song...?

No more IVs! Just lots and lots and lots of shots. Shots shots shots shots shots shots EVERYBODY! You know? That song…?

Each appointment has to happen during a certain time period, so there’s no flexibility, which can make scheduling tough, especially since I am new at work and don’t want to be out at all. But…the drug is working. And a great lesson I’ve learned in the past two years is that you absolutely must make your health a priority over all other things.

If you recall, I started taking methotrexate back in December. Methotrexate is, in easily-explainable form, a chemotherapy drug. And I hate it. It’s an injection I give myself every week, and once I started doing it myself in January, I was OK with it for a while.

I’m not OK with it anymore. It’s such a potent drug and it makes me so nauseated (thank you to all the people who helped me learn the difference between “nauseous” and “nauseated”; I hope I did it right here).

A few weeks ago, I ran to the bathroom to vomit before I even gave myself the shot. I talked to my doctor about this, and he said this is common in chemotherapy patients in particular. They associate the smell of the alcohol swabs, for example, with the eventual feelings of nausea, and there’s a preemptive physical reaction. I have to seriously psych myself up to do these weekly shots now.

Considering that the methotrexate didn’t even seem to work on its own, you’d think I could come off it, right? But no! Since I was on the drug when I was enrolled in the study, I have to stay on it for the duration (the aforementioned 112 weeks). This upsets me. I hate that I am putting so much seemingly useless poison into my body every week. I try not to think about it too much. I also try not to secretly stop taking it, which is very tempting.

WHEN IT COMES TO RUNNING…

It’s wonderful. It’s amazing. I’ve run three races now without having to make any bathroom stops.

Wheeeee!

Wheeeee!

My weekly mileage is creeping up. This past weekend, I decided I wanted to go see The Little Red Lighthouse, and I decided to run there. It turned into an 18.5-mile trip and I felt great the whole time.

And I raaaaan, I ran so far awaaaaaay, far away from where I liiiiive, and then I turned arouuuuund, and when I was done I got a creeeeepe. A crepe. A Nutella crepe. Not a "creep." In case there was confusion.

And I raaaaan, I ran so far awaaaaaay, far away from where I liiiiive, and then I turned arouuuuund, and when I was done I got a creeeeepe. A crepe. A Nutella crepe. Not a “creep.” In case there was confusion.

Because I’m feeling good, and because I live in The Land of Eternal Optimism, I’m registered for a fall marathon. I fully recognize that getting to the start line isn’t a guarantee in this roller-coaster-y life of mine, but I want to give it my best shot. I want to train. I want to try to get fast.

If you're into data, have at it. Or, ya know, if you want to coach me, analyze these numbers and decide what you think my "potential" could be, and give me a training plan. For free. Thanks. Oh also, I don't like tough love, so you have to tell me I do a good job after every workout, even if I fail. You just tell me, "It's OK, here's how you can improve next time. PS You look so pretty today, Ali!"

If you’re into data, have at it. Or, ya know, if you want to coach me, analyze these numbers and decide what you think my “potential” could be, and give me a training plan. For free. Thanks. Oh also, I don’t like tough love, so you have to tell me I do a good job after every workout, even if I fail. You just tell me, “It’s OK, here’s how you can improve next time. PS You look so pretty today, Ali!”

And I’m figuring out what my body can handle, how long I need to recover, and how hard I can push myself. I haven’t done anything speed-related yet, but I’ve slowly upped the miles, and so far my body is cooperating. Good job, body. Don’t screw this up for me.

The first ice bath of the season! The ice melted after about 30 seconds, so it was pretty lame. That's how I roll. That's how I bathe.

The first ice bath of the season! The ice melted after about 30 seconds, so it was pretty lame. That’s how I roll. That’s how I bathe.

Then, on Sunday, I hopped on my neglected bike and tagged along with Brian on his ride to Piermont. I thought my legs would be dead after Saturday’s run, but I actually felt decent and was able to hang with him for most of the ride (he might disagree and admit that he “waited for me at the top of every hill,” but he’s not here to defend himself).

Shoulders down, Feller. Seat higher, Feller. Learn how to actually ride your bike, Feller.

Shoulders down, Feller. Seat higher, Feller. Look forward, Feller. Learn how to actually ride your bike, Feller.

MEANWHILE, IN THE YOGA STUDIO…

As I came back from this latest Crohn’s flare, my body started to change in every way possible. My biggest struggle was that I felt heavier; that I had more skin in the way. The twisting poses were suddenly difficult because my hips, thighs and added inches were getting in my way. I felt that my changing body was holding me back, and it was frustrating. All the poses I used to be able to do with moderate ease (because really, yoga is never actually easy for me) were now more difficult, simply because my body was “in the way.”

Bethany (in the middle) taught a yoga class in Times Square and it changed my life. I wanted to write about it. But then I didn't.

Bethany (in the middle) taught a yoga class in Times Square and it changed my life. I wanted to write about it. But then I didn’t.

But I’ve adjusted. The skin is still there, but I can adjust for it. I can make it work.

I have found something of a sanctuary in my yoga practice. [File under “words I never thought I’d string together.”] I think I get why it’s called a practice: You’re always working on it. There’s always room to improve. There’s no “big game” at the end. Each pose can be made stronger, deeper, more advanced.

I’m starting to work on poses that terrify me (I can’t not picture my neck snapping in headstand…and yet Bethany had me demonstrate tripod headstand for a full class the other day), my crow is solid almost every time, and last Friday I did some pose where I lifted my leg straight out in front of me and then shifted it to the side and I didn’t fall and my leg when high like when I used to dance for six hours a day. Progress!

During the July 4th class, Instructor Terri made the best playlist and it included "Party in the U.S.A." My yoga is more fun than your yoga, probably. But it can be OUR yoga if you want to come with me!

During the July 4th class, Instructor Terri made the best playlist and it included “Party in the U.S.A.” My yoga is more fun than your yoga, probably. But it can be OUR yoga if you want to come with me! I’m in the front row, trying to be teacher’s pet. You can probably find my braid.

And mentally, I mean…that goes without saying. Yoga is keeping me sweaty and sane.

MY BODY.

I touched on it above. My body is changing. A lot. I’m basically like a pubescent teenager, and those are not times I wish to revisit.

When I get very sick, I drop a ton of weight seemingly overnight. I lose all my hard-earned muscle, my clothes hang off me and I look pretty sickly. Then, when I start to get healthy again, the weight comes back, but again it happens seemingly overnight. The problem isn’t the weight gain; it’s the shocking pace at which it happens.

The weight gain is essentially good. It’s what the doctors want to happen. But for your body to change so fast, so many times…it’s a lot to handle, physically and mentally. I wish I could just roll with it and understand that it’s part of having this disease, but it’s not easy.

Right now, I’m in the “gaining weight at what feels like rapid speed” phase. I try not to weigh myself regularly at home, because I know very little will come of that. But everything feels different. And while I don’t necessarily care about the number on the scale, I do care that everything looks and feels really different.

I hate that I saw this photo and while, yes, my first thought actually was, "I had the BEST day that day," my second thought was, "THIGHS! Whoa!"

“Don’t worry about what you look like!” everyone tells me. “You’re healthy!” Are they right? Absolutely! Does that make it easier? Ehhh not so much.

Again, this “issue” is twofold: On the one hand, I’m gaining weight because I’m finally healthy! I lost a lot of weight when I was very sick, and now my body is finally absorbing and holding on to every bit of food it can get. That’s a good thing. But what I don’t love is that it seems like some additional weight gain might be a side effect of the study drug. That’s what makes this tough to accept — that I don’t know what’s fully going on with my body. I love having a drug that’s working for me, but I hate being the guinea pig. I don’t know if the weight gain is just from getting healthy again, or if it’s being aided by the medicine. (This translates, yet again, to “I don’t feel like I have complete control of my own body.”)

Plus, considering the constant ups and downs my body has seen over the past two or so years, it’s hard to even know what my “normal” weight or size should be. And I’m not “beating myself up” or being “too hard on myself.” I’m just trying to figure out what my normal is.

So far, it seems like the other “potential side effects” for the study drug are acne (cute!) and nausea. My doctor has said that weight gain is very likely a side effect, and that my body should have stabilized by now, but I am continuing to gain. Hmmm.

Such good running form. Let me know if you need tips. My best tip is to make your arms as useless and inefficient as possible. Give it a try.

Such good running form. Let me know if you need tips. My best tip is to make your arms as useless and inefficient as possible. Give it a try.

I was really upset about this for a while. It was all I could think about. My clothes stopped fitting, I hated how I looked and I was completely focused on this one aspect of my life 100% of the time, despite the fact that, like I keep saying, I was feeling better. Physically I was getting healthy, but mentally I was a bit of a mess.

Then Brian and I had a heartfelt chat about it, and now I’m moving forward.

WHO IS THAT OTHER IMAGINARY PERSON YOU ARE EMBRACING, BRIAN? No, really our talk was about like, loving myself and him loving me and not obsessing over my body and focusing on my health. You know. All that deep jazz.

WHO IS THAT OTHER IMAGINARY PERSON YOU ARE EMBRACING, BRIAN? No, really our talk was about like, loving myself and him loving me and not obsessing over my body and focusing on my health. You know. All that deep jazz.

I wish I had better control of my body, but I also love being healthy. So a few weeks ago, I finally sucked it up and bought some bigger-sized clothes, instead of feeling annoyed that my old ones didn’t fit the way they used to. And I felt happy that I was out shopping and didn’t have to do it online because I was too sick. See? Eternal optimist.

Robyn wrote a great post about similar feelings a few months ago. She’s a bit more eloquent than I seem to be. Check it out.

All this to say there’s a lot of transition, a lot of adjusting, and a lot of gratitude even during the times that still feel challenging.

Oh also, I like to eat Nutella crepes after every workout, sooooo maybe it's not just the study drug...

Oh also, I like to eat Nutella crepes after every workout, sooooo maybe it’s not just the study drug…

Living with this disease — even when it isn’t ever-present — is not easy. I am sorry this post was so long. Are you still there?

I love you.

I love running.

I love crepes.

59 Responses to "Adjustments"

I love that your feeling good! I had those crepes while I was in NYC. Fact: I would eat there every day if I lived there. Good luck and I hope the nausea gets better. I am a nurse and I have no idea the differences…..who are you hanging with? 🙂

Ali! So much going on in this post, so much I want to say. First – you are a fast runner. Steamtown looks awesome, I looked into it but it conflicts with Bun’s wedding. My friend Miranda is doing it (she even got called out in their email newsletter for getting the last spot!). I am so glad you are feeling better and able to run and yoga. About the body issues – I totally, completely understand and know exactly how you feel. I know how hard it is to finally cave and buy bigger clothes and think so much about how “you used to be” and how it wasn’t even that hard back then. But I’ve also had similar talks like the one you and Brian had, which helps a LOT. You’re hard on yourself (as I am on myself) and seriously, no one else even notices if you gained any weight. I promise. I think you look great in all your recent pictures. I hope you get to a point where you can feel truly comfortable again, I know how consuming it is to not feel comfortable just being. As always, I am always here to talk!

Thank you for saying such nice things. <3 I love this comment and really really appreciate it.

First, you feel good..hell yeah!
Second, you are fast sister!
Third, that NP Popsicle is freaking amazing!
Fourth, I unde

Don’t know how that last comment posted…..
Fourth, so happy for you!

I’m so happy you’re feeling better, and I’m even happier that you’re learned how to correctly use “nauseous” and “nauseated.” 😉

Hahaha. I’m happy about it, too. I feel smarter. And like, superior and stuff.

So glad you are feeling better!!! Nutella is the best, I now mainly resort to just eating it from the jar with a spoon although we just had a bunch of teenagers here (my husband’s XC girls) who were putting it on waffles along with peanut butter, yum!!! Good thing Costco carries the large jars!

I know the weight thing must be hard – both from the feeling you can’t control it perspective as well as just not liking how your body feels – I can relate as I’ve had hormonal related issues at times over the past few years, happening again now as I think I am hitting perimenopause, it just feels so out of my control. I try hard to focus less on how I look (and how my clothes look/feel) and more on what my body is capable of doing – running, swimming, biking, finally mastering Crow! That helps some…and also thinking about focusing on the present and future instead of looking backward and comparing myself to how I looked in the past, how stuff used to fit, etc. As you said, it’s an opportunity to shop for new stuff 🙂

Oh and I am sooo jealous of the cute workout clothes you get to wear to work!!!!

Keep feeling better and racking up those miles!

So what is the proper usage of nauseated vs. nausea?
I’m just starting methotrexate injections for arthritis now and I’m terrified of the nausea side effect. (I’m hoping folic acid and small doses will make it not-so-bad? Ugh.) Anyway, I’m so glad that you’re feeling better and that things are looking up! You definitely deserve it and have earned it!

I was on metho. for arthritis a few years back and folic acid at the same time as well. It wasn’t too bad with the smaller doses, but the nausea increased as my doses increased. My doctor had me take naproxen each time and it definitely help. Good luck!

Thank you so much for this reply! The internet seems to be filled with metho. horror stories. it’s nice to hear that it “wasn’t too bad” from someone. There’s just way too much information out there. I’m totally overwhelmed.

i always enjoy your posts — not just bc you’re another runner chick in NYC, but bc you’re so real and raw about your ups and downs on your blog. congrats on an amazinggggg 18 miler and on feeling much better, and good luck as you continue to adjust to your changing life and body and find a sense of peace and acceptance for all the wonderfulness that is you!

I never comment. but thank you for this post. I gained weight seemingly overnight for the past 1.5 years due to binge eating disorder and night eating syndrome because I’d had anorexia and bulimia for 5.5 years prior to that. I gained like 30 pounds from everything and it was horrible. I know this isnt the same scenario, but I just wanted to let you know that i understand. It’s so difficult. But i’ve come to a place where i’m more accepting of my body and BED and NES are completely gone now and i can start losing weight! YAYY 😀 so chin up, girl. there’s definitely hope <3

Weight gain is hard whether it’s a good thing or not. Hell, CHANGE is hard. I suck at adjusting. You are doing GREAT. Virtual high fives! And I’ll high five you again for the nutella filled crepes.

Your last sentences remind me of a conversation with my 3 year old at bedtime.

Me: I love you.
Him: I love… peanuts.

Keep feeling better and kicking ass.

Hahahaha. I need to have more daily conversations with kids. That is fantastic.

I have never commented before, but I have been reading for more than a year and this post was incredible on so many levels. I cannot even begin to imagine what you have gone through over the past year (plus), and yet your posts have still remained funny and witty, and you have remained strong. Your writing is eloquent and entertaining that I am always sad to get to the end. Sharing your health struggles is always difficult, but sharing your insecurities about your body and your frustrations is an entirely new level. This was a heartfelt post and one that we can all relate to in some way. I think even though most of us can help the way our bodies look because we are not injecting ourselves with loads of “poisons,” we all face similar insecurities. Your resiliency is astounding, and you look pretty darn awesome (and athletic) in all of the pictures you’ve been posting on your blog! p.s. hopefully I can correctly learn how to use nauseous v. nauseated thanks to you.

This is all so nice, Tracy. Thank you for saying such wonderful things. “Resiliency” is one of my favorite words, FYI, and it makes me really happy that you used it.

It is so wonderful that you are feeling better! Maybe the methotrexate wasn’t working on it’s own but NOW in conjunction with the miracle drug it is helping! Maybe not, but maybe thinking that will make the shots easier. I have so much respect for you, you are doing some amazing things for your health and I’m so glad they are working!

That is totally what I try to tell myself! That the Study Drug “needs” the methotrexate to fully work. Right…right? I don’t actually believe it, but that’s what I tell myself so I’ll keep doing the injections. It’s a major mental struggle.

Jocelyn Rizzo says: July 8, 2014 at 1:21 pm

Hi Ali! You have so much going on in this post but it was delightful to read!! I am with you on the weight gain front. I’ve been on the dreadful Prednisone steroid for about 2 months now…Hoping to get this flare back under control. Try to focus on how good you are feeling!! I’ll take the extra inches if it means Im feeling good enough to run again! But emotionally it can be hard to process! Im so glad you are feeling better and look forward to following your progress!!

Prednisone is just the devil. The side effects almost feel worse than what you’re trying to fix half the time. I’m sorry that you’ve been on it for so long and hope you’re able to come down from it soon. Fingers, toes and braids crossed for a fully recovery ASAP. xoxo

Ali, you never stop inspiring me, and I really mean that. I’ve been reading and learning from you for the past few years, and you are truly one of my biggest inspirations in running. I’ve done three half marathons in the last two years, and finally am training for my first full (fall marathons for everyone!), and I just want to thank you for being so genuine here and helping me along the way. I am so grateful that you’re feeling better, and amazed at the way you’ve gotten through this year with such grace and humor and determination. Thanks for making me laugh and challenging me to be a better runner! Running has changed everything for me!

This comment = screenshat and saved for life. This is the nicest thing. Thank you for being so kind. I LOVE that you’re dominating the racing circuit and are gearing up for the big 26.2. SO exciting, and I hope you enjoy every step of the way. KEEP ME POSTED, PLEEEEEASE! xoxo

Screenshat = the past tense of screenshot. Screenshotted doesn’t sound right.

Amy Chase says: July 8, 2014 at 1:45 pm

It’s great to see you’re doing better, Ally! I’ve been reading your blog for a couple of years now, and you’ve very inspiring to someone with Crohns disease. I can relate to a lot of the troubles, physically and mentally, that you go through with this disease. Your paragraph about your “normal” vs a normal persons “normal” is something I’ve always thought was a little disappointing, since all anyone really wants is to feel normal. BUT, with that said, what’s normal anyway? It seems like everyone’s got some boulder to push up the hill so, like you, I try not to dwell on it and just take the good when it’s good.

Anyway I’m rambling, but basically I just wanted to say, as a stranger on the internet, that I’m glad you’re doing well and I hope there are many more good years to come!

I love that phrase: “Everyone’s got some boulder to push up the hill.” That’s so true, and — thanks to yoga, actually! — is something I think about often. (i.e. When someone throws an elbow in my rib on the morning commute, I shouldn’t go full-on RAGE at that person. Maybe he/she is going through something serious. You just never know.)

I spent last year off from running and taking a lot of steroids due to a neck injury. Thankfully I had surgery in February and I’m slowly losing all the weight I gained. It’s really tough, especially because my husband acts like he does not notice and loves me anything. Love him for that, but also hate him because a woman needs to vent and have her wining validated! 😉

I’m so glad you’re feeling much better now and I hope by the end of the study you’ll feel as well as a “normal” person.
You still look amazing. I’m glad Brian talked some sense into you about the weight gain.
I have so much difficulty with yoga, but I try. I don’t even want to do anything spectacular, just proper form and better extension on some basic poses.

Thanks, Linda. And I really truly can’t thank you enough for continuing to read. I feel like you’ve been in it for the long haul with me, and that means so much. Your support has always been tremendous.

I love your blog.
Truly inspiring and always making me feel optimistic 🙂

Lauren W. says: July 8, 2014 at 2:55 pm

Sweaty rage pic is so bada$$!!! I’m loving all the healthiness going on…so happy that you’ve been on the upswing on that front lately. The latter half of this post really hit home with me – coming from someone who’s struggled with body image since high school (or before really), I know how consuming it can be…and how one little thing can ruin your day, or at least turn your thought pattern into a bunch of negatives. I actually stopped weighing myself a few years ago, which has helped tremendously. I don’t know that I can give advice on how to help that situation (if you figure it out, let me know!!!), but from the outside, you just absolutely radiate happiness – and look stunning doing it! Your bubbly personality shines through both in posts, pictures and in person – seriously, you’re the cutest person!! p.s. omg whereeee did you get that crepe?! gimme gimme.

Thank you for saying such nice things and for making me smile. <3 As for the weighing thing: Normally I wouldn't weigh myself. I didn't for years! But now I get weighed every time I go to the doctor. Once I asked the Study Lady not to read the number out loud, but she did, because "Oh my gosh, I forgot!" Fool. So now it's just part of the routine and I'm trying to be OK with it. Just a number, right? Though I really do believe that's so easily said and not easily followed. I am so happy that you have gotten past that phase and are living happily and scale-free!

And the crepe, oh, the crepe. I'm a regular at this place now. I don't know if I should be ashamed or proud. J/K, OBVIOUSLY PROUD. It's called Bourbon Crepe or something odd? I might have totally made that up, actually. I don't know. But it's on 94th & Lexington AKA three steps from my apartment AKA I end all of my runs there on purpose.

You are absolutely in a huge adjustment phase right now. And trying to live all the while, enjoying the health, enjoying the runs, and getting through the drug trial, and doing so amazingly, I must say!! AS for the weight gain, I do think of anyone, YOU would notice, as others have said here, and nobody else, though I completely can relate and would feel the same way as you. You look fantastic, however, you are SO FAST and you are just awesome in so many ways! XO!

There is so much I want to say, encouraging things and “yay Ali!” and “you’re awesome for sharing so much and being so honest like this.”

But…where did you get that RUN pillow? I think I need one.

I’m not a doctor and you have lots of doc BUT I had hella acne even though I’m fully an adult, and I went to a derm and they gave me potions that made it all go away like magic. I can’t believe I waited 15 years to give up on clean and clear and see an M.D. If you can use topical stuff you should ask your doc, because apparently ance is not something you just have to deal with like seventeen magazine made me think during middle school.

Lady, I’m feeling you on the weight issues. When I was sick last year, I ended up losing 30 pounds in three months. And now, a year later, I’ve gained back 20 of those pounds. But when I step on the scale or look in the mirror, I only remember that I used to be smaller. I forget about how much pain I was in, how I had three drains in my body, how I was being fed through TPN, how miserable I was, and how I was actually scared I might die. Nope. Rational thought goes out the window when faced with my vanity. It’s frustrating. I have this tiny voice yelling at me, “You are BETTER than this!” but the louder voice says, “YOU CAN BALANCE A SODA CAN ON YOUR ASS THAT IS NOT NORMAL.”

It’s actually ridiculous. I don’t have helpful advice, just random commiseration and also I’ll tell you what I’m doing. I made a list of all the things I could do when I was sick. And now that I’m well, I’m doing all those things again. Which is what it seems like you’re doing, too. So when I get sad because I can’t fit into the jean shorts I never should have purchased while I was sick, I feel happy that I can swim more than a mile now, which I definitely could not do last year.

Rambling! Also I loved Lurlene McDaniel so we’re same/same. You mentioned it a long time ago but I’m a lazy commenter.

Robin Warr says: July 8, 2014 at 8:07 pm

AWESOME inspiring post! As a fellow Crohnnie (I found your blog when I was in the depths of my own personal hell), I appreciate that I get to ride the ups along with you. I spent many years in horrible physical and mental angst, until I found my “miracle” drug, therapy, in August 2013. It wasn’t an overnight fix. I am deeply grateful that I have had some AMAZING peace, that I never thought would come. With a TON of hard work, I have not had a flare for 5 or so months. It has been worth everything.
I am very happy to see you are in a good place. Continue surfing life and riding the waves that come. If you wipeout, get back on and keep riding. As you well know, life is a marathon, not a sprint. 😉
Thanks for having the courage to share your experiences with the world. We appreciate you & are all cheering you on!

Howdy! I’m a pharmacist and I deal with a lot of specialty medications and complex disease states. I just wanted to share two thoughts – one, that I’m excited about your study drug, as it’s a mild IL blocker. It only blocks one form of interleukin, so I would guess that the side effect profile and risk of infection will be lower than with most biologics. So I’m kind of keeping an eye on the trial you are in, with hope.
Second, I have many chemo patients and other patients who experience the associated nausea you are dealing with (before the advent of direct-acting agents that changed the way we treat hepatitis C, my patients who had to inject interferon would often vomit when they took the prefilled syringe out of the box, or even at the site of the sharps container). I have a few tips that we used to work through these very real feelings; email me at gracethacker at gmail if you want.
Lastly – thank you for choosing the correct word. Whenever my patients tell me that they are “nauseous” I just simper and reply, “Why yes. Yes, you are.” I get a kick out of it.

Glad you’re back!! Also, glad the new medicine seems to be working for you, even if things aren’t all settled & normal yet. 🙂

I want Bethany’s abs! Hehehehe
Looks like everything is falling into place for you. All the best for Steamtown.

Lengthy posts are OK for as long as we can learn something out of ’em , we won’t get bored! 😉

I love, love, love reading your posts, the good and the bad. i really admire your honesty.
That sweat picture is amazing. It is also great to see you back on your bike. Exciting times for you.

the weight thing is such a roller coaster. I was in a pretty bad flare oct-may of this past year and now all of my shorts from last summer are too big, but hey it’s a great excuse to wear running shorts 24/7. keep running and keep inspiring! you rock.

Woo! Here’s to feeling good. I like what you said about not comparing how you’re feeling to others who don’t have chronic diseases. You’re right! There is no point and as long as you are feeling good for you that’s a step in the right direction. 🙂

This post brought tears to my eyes.

Hi Ali, my name is Liz. I had surgery 2 years ago to take out my disease ulcerated colon. Only now I am started to find myself again. I only recently started following you because I am training for my first half marathon that is… Yikes… On Saturday! It’s in Jamestown, RI. I trained with Team Challenge, I don’t think I could have done it any other way. The reason I wanted/needed to do this was because I gained 60 lbs overnight on prednisone. I hate my body and needed to do something about it.

Anyway, I just wanted to say, thanks for being you!
Liz

It’s so good you’re feeling better. And yes a few extra pounds might drive you nuts but I bet you’re the only one who notices them AND running without bathroom breaks totally worth it

Wow, this post made me so happy 🙂 There are so many good things going on in your life, and you completely deserve every single one of them after the hellish time you’ve gone through. My dad had Crohn’s, and what I remember most about that time is that he never seemed to let it get in the way of his life. Yes, he had to take lots of medication, but he also lived his life fully and completely. and was happy (and such a good guy!) That’s what I wish for you too, and it definitely seems like you are well on your way. Is it weird to be so happy for someone you’ve never met? Now let’s go watch Friends and eat Nutella crepes (I am SO hungry for one now – though I did have Nutella stuffed pancakes recently and they were the bomb.com. I may or may not have hounded the waitress for how they make them) and Frozen yogurt! (Worldest longest comment award) 😉

Frances says: July 10, 2014 at 4:37 pm

Congratulations on finally being on the mend– and really, for never giving up. I’m psyched to see you running again, and I’m glad you’re blogging about all of it. Your writing is funny and real, and that’s really refreshing. Re: weight gain…well, I’ve been there, and I admire your ultimate conclusion: new wardrobe 🙂 It’s not easy all the time, but it is really nice to feel healthy enough to run, bike, dance, work on my feet, and just…not be a huge grouch all the time.

Best of luck!

Marciann says: July 10, 2014 at 7:28 pm

Ali, you look amazing in your coma picture, only wish I looked that amazing while in a coma! I started running this year (training for my first half in the fall) and I have to say, you have been such an inspiration to me! I found your blog one day while having a pity party (due to a minor injury that prohibited me from running for a few weeks) and immediatley, I felt like the biggest whiney, brat. You were in the midst of your illness and it truly made me take a hard look at myself. When you ran your first run, I felt as if I was running behind you cheering you on the entire way! You rock Ali! (BTW, Next time you weigh at the drs, step on the scale backwards, that’s my trick, what we don’t know…)

YAY FOR MEETING IN REAL LIFE!!! Btw what I was wearing that night is also my work outfit, aka yoga pants and a shirt because nannying, who cares. It’s great.

I cannot believe you give yourself shots of chemotherapy drugs. Do you do it with the same sweaty rage face as your headshot?

Also, I know it doesn’t matter what other people think when you’re feeling insecure, but meeting you for the first time IRL – I think you look awesome and super fit. Seriously.

I need to go see this Little Red Lighthouse because I seem to be the only person who hasn’t.

Hello! Lurker/silent reader here! Stopping by to let you know I nominated you for the Very Inspiring Blogger Award!

I don’t pretend to know what you must be dealing with in your illness, but I have had my share of weight issues. I’ve been heavy all my life. I’ve lost weight and then gained it back when I had my first kid, lost it and then gained it back with the second and I’m still trying to lose it this time. Right now I’m going with the flow and focusing on the positive… I’m large because I birthed two beautiful children. I wouldn’t trade them for anything. Its hard sometimes to stay positive, but I think thats a much better option than being depressed about it. I’m running awesome and I’ll drop the weight when I drop the weight. I love reading your blog and I’m so glad you’re feeling better.

christine says: July 11, 2014 at 3:04 pm

i just had abdominal surgery on tuesday, and i should know better than to read your posts. they make me laugh, which really really hurts right now. you have such great humor, even in the face of everything bad. your comment about brian in the picture made me laugh the hardest. i am not reading your blog again until my stitches are out.

Life is like one big revolving door of adjustments, isn’t it? This post makes me want to renew my yoga practice…. I’m preparing to start training for my 3rd half marathon (3rd to complete – not to sign up for though.. stupid mid-training injuries!). 🙂

Ali! I’m so happy I got to meet you at November Project. You are awesome-sauce, and I love this blog. Let’s be blog friends?We can be real life November Project and JackRabbit friends too 🙂 peanutbutterismyboyfriend.blogspot.com

I stumbled upon your blog a few months ago and have been intrigued since. I also am fighting the daily battle with what my doctors call “moderate to severe case of crohns.” I really think they just throw in that moderate part to make it sound less harsh and keep me from crying during their appointments. Regardless, I can relate on so many levels to your daily life and have found a sense of belonging when I though I HAD to be the only one that could use a whole roll of toilet paper before the average person rolled out of bed. At 28, some days I feel like I am 70 when I get out of bed, and those are the good days. I have noticed I too don’t stretch and getting “in shape” is more frustrating than rewarding but not much you can do. I am waiting not so patiently for your study to end so I can maybe hop on that drug bandwagon. I can’t thank you enough for your blog – so keep blogging and run on. 🙂

I am so glad x1000 that you’re feeling so much better. Finally feeling GOOD is huge.

The weight thing is tricky, isn’t it? Working on remembering that the sick place was NOT healthy and that the healthy place is a little bigger. I’m there, too.

Best wishes for continued improvements in your health 🙂