- I want to appreciate "big pharma" for creating this medicine that seems to work for me, but my god... There has to be a better way. 07:53:33 PM January 15, 2017 ReplyRetweetFavorite
- So thank goodness for insurance. It's still too expensive, but drug companies charing $55,000 for a one-time-use drug??? That is sick. 07:52:23 PM January 15, 2017 ReplyRetweetFavorite
- October 26, 2012 by AliPlease Let Me Make Your Day (That Means A Giveaway!)
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- July 9, 2013 by AliEmbrace The Sweat (An "I Heart Sweat" Shirt Giveaway!)
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How To Stay Positive
Hello! Here is a story about wildlife in Contoocook, NH, written by a young Ali:
Yes, that was a true story. No, I did not seem concerned about potentially contracting rabies, because, to me, the animal was “cute.”
I seem to have a new nightly routine.
I go to bed super late, usually around 10 PM. I like to rage. I set myself up with two giant pillows on both sides of my body, and drift off into a lovely, cozy sleep, flanked by softness.
Then, I wake up anywhere between 1 and 3 AM, dripping in sweat. I realize I have sweat through my pajamas — which were merely short shorts and a tank top — and my buddy pillows and my sheets are also soaked.
I realize this phenomenon and, as I’m debating what to do, my stomach also wakes up. It is angry!
I then spend about 30 minutes in the bathroom, keeling over in sweet abdominal pain and muttering obscenities, feeling oh so glad I live alone during times like these. (Get excited to be my roommate, Brian! I’m awesome!)
When that’s done, I return to my sad bed, but not before undergoing a complete Academy Awards-style wardrobe change. This time, despite the sweat, I’m forced into long pants and a long-sleeved top. This way I can’t really tell I’m crawling back into a wet bed.
I sleep some more and then wake up with my alarm, ready to start the day.
During these increasingly frustrating hours, I tend to get a little pissed off.
But when I wake up in the morning, life is good again. The nighttime stuff was temporary, it’s over for now, and I can go on with my life. Lately the overnight and morning hours are the worst ones, when my stomach hurts the most and causes me the most discomfort. But during the day I’ve been feeling better. I’m sweating a lot at night, but I don’t seem to have a fever. Also, sweating is nothing new for me, as you can see from this carefully crafted letter to my vacationing parents, circa 1993:
Hey, you asked for more childhood literature. You got it. Uncle Glenn, you’re the best. Thanks for taking me mini golfing. Sorry that I probably sweat (sorry, “swet”) all over your clean car. I was such a beastly third grader.
I would have loved to wake up and run this morning, but between the fussy stomach, the ongoing hip and knee pain and the fact that I actually have to work a full day today, I opted for extra sleep instead. I’m fine with my decision.
One of the things I get asked a lot, particularly during Crohn’s flare-ups, is, “How do you stay so positive when your life sucks so much?” Maybe not those exact words, but something along those lines.
First, let’s put this out there right now: My life does not suck. I have Crohn’s disease, and while it’s frustrating and it pisses me the heck off pretty regularly, I know that things could be way worse. I wish there were a cure, or at least a reliable medicine that worked for me more than 50 percent of the time, but 50 percent is better than zero percent, right? Crohn’s sucks, but it’s not the end of my world or my happiness.
Second, understand that I am a naturally happy person. I’ve said this before, but I think life is really, really great. You just have to be willing to see it that way.
I figure there are two ways to deal with crappy (ha! pun! Crohn’s joke!) situations:
- You can let them aggravate you and bring you down. Let the situation be stronger than you. Be the weak one. Be the angry one. Give in. Give up.
- You can see the positive in the circumstances.
I mean, choose whichever you want. But I tend to think life is going to be much more wonderful if you go with option number two, and also if you eat Mini Eggs.
But I know, it’s hard to completely block out the negative. Trust me, I get that. Over the past few weeks, I’ve felt repeatedly knocked down by a flu, a bum hip, a busted knee, a Crohn’s flare-up, night sweats, and the fact that after I finally opened my windows to let in a little fresh air, I now seem to be sharing my apartment with a pesky fly that refuses to leave. And he won’t even pay rent.
Still, I’ve found some ways to stay happy even with the inevitable negative, shitty, frustrating things that come up in life. Here are my little tips and tricks:
Look at the big picture. OK, so in my situation I look at it this way: I have a stomach disease. It brings me down when it flares up. I think it’s fine to get a little sad or discouraged when I go through a flare, specifically if it’s at a really inconvenient time (like, um, during peak week of marathon training, damnit). But if that’s the worst thing that happens to me all year, that’s not so bad, right? Yeah it’s painful. Yeah it’s embarrassing. But am I living on the streets? No. Do I still manage to eat three meals a day? Yes, oftentimes six or seven meals, to be honest. Am I still living, breathing, walking and generally living a pretty OK life? Yes. I hate to think that “things could always be worse,” but it’s true.
Focus on what you can still do. When my stomach is really bad, I am not so good at running. Speedwork, for example, is completely out of the question. But I can still run, I just have to be strategic about it. This weekend, I ran twice. On Saturday I ran 10 miles and on Sunday I ran six. Even though Saturday’s 10-miler took me seemingly forever, it was still perfect. I took a ton of walk breaks, my pace was slower than anything I’ve seen on my watch in months, and I had to make two bathroom stops. But I was in Central Park on one of the most perfect spring days ever, and even though I wasn’t setting pace records (actually, I was, for slowest run ever) or blazing around the Bridle Path at full speed, I did still enjoy getting out there.
I tried not to dwell on the annoying bathroom stops or the too-frequent stomach cramping. Instead, I kept my eyes on the blossoming trees and reminded myself that many people can’t run at all. I can, even on some of my worst days. By the time I ended my run, I was so happy to have gotten out there. I may have even developed tiny little sports bra tan lines. Success!
Also, I foam rolled a lot this weekend. Knee pain, hip pain, you don’t stand a chance. Get out of my life.
And I drank juice. And took cool self portraits.
Find other things you love to do, and do them! I’m not spending much time in the gym these days, so I’m finding other things I love to do. Remember reading? Yeah, you probably all do it regularly, but I don’t. Lately, I’ve been doing some reading. Really important literature, mostly, like Food Network Magazine and the J.Crew catalog. I like to dream in pastels.
Surround yourself with positive people. There are people in my life who make me feel good and there are people in my life who make me feel terrible. Normally I can just brush off the terrible people without much thought. But when I’m sick or have too much going on, I can’t even be in contact with people like that. I only stay in touch with the good ones. They understand, they make me laugh and they’re fun.
This weekend, I spent a ton of time with some of my very favorite people. It was a maxed-out girl’s weekend, in fact. Friday night, Lindsay, Susan, Kelly and Jocelyn came over for a “sweatpants mandatory” low key evening. I got to be in the comfort of my own apartment with people I’m comfortable around. On Saturday, Susan and I ventured all the way to the Lower East Side for Lindsay’s birthday party (I didn’t drink, sat on the couch the whole time and left early when my stomach hurt too much — don’t forget to invite me to your next fiesta!).
On Sunday I ran with Lindsay, SoulCycled my heart out to Broadway tunes and then got frozen yogurt with a whole group of lady friends. It was all relaxing and wonderful. I also walked through Central Park a lot. Here’s another pretty photo:
Eliminate the negative. I used to read blogs that pissed me off and I’d go to websites that frustrated me. When I realized I was voluntarily bringing stress into my life, I immediately stopped and I haven’t looked back. By simply ridding myself of stress-inducing situations, I am so much happier.
Do something nice for someone. It’s amazing how doing one little act of kindness and making someone else happy can, in turn, make you happy. Send a friend a nice email. Call your grandmother. Tell a lady on the street that you like her polka-dotted top. Plus, this is probably good karma.
Make yourself a priority, if only for one minute a week. For me, this means taking a guilt-free 20-minute blazing hot shower. Please leave me alone while I’m in there.
Know that it’s only temporary. OK, so in my life this mostly relates to the Crohn’s stuff, which I’m sure you’re painfully tired of hearing about by now. But this mentality really helps. I know that a flare-up won’t last forever. Will I have this disease forever? Yes, probably, unless you doctors and scientists kick things up a notch in the lab.
But I know that the really bad pain, the really awful bathroom stuff and the really high fever won’t go on for longer than about 2–3 weeks usually. After that, I’m typically in for a few months of flare-free living, and that’s a wonderful thing. So whatever your situation is — a lost job, an illness, an injury, a financial burden — try to see past it as best you can. Look toward the future with rosy-colored glasses and sequins.
When in doubt: jazz hands.
You may feel silly at first, but then look in a mirror and watch yourself jazz handing it up. Try not to smile. Maybe wiggle your fingers a little, or really go all out and shake them. Still not smiling? You have a heart of stone. I give up.
Lastly, for anyone who may have doubted that my sixth grade love affair with Deke was, in fact, reciprocated, this weekend I found proof! I was cleaning out some things from underneath my bed (it’s scary down there), and why this love letter made it all the way from sixth grade to my adult apartment in New York City 15 years later, I will never know. However, Deke loved me back.
OK so in the actual note, I realize it’s unclear whether he loves me, or something else. You may notice that he neglected to include the crucial word “you” in this letter. But I think all the “ooooooooooo’s” speak for themselves. Right? RIGHT?
NOW SHARE YOUR SECRETS: When things get you down, how do you stay positive? Or do you give into the frustration for a while? (Which, by the way, is a totally fine option. Whatever you’ve gotta do.)