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Being the change I want to see in the world

Posted Jun 20 2011 9:59am

Being the change I want to see in the world is hard. It’s an up-hill, and oftentimes lonely, battle. I have a very audacious goal for my post-doctoral career: start a non-profit exercise group for teenage girls (athletes and non-athletes) to educate them on how to care for their bodies in order to stay physically fit and injury-free for life. I intend to do this via cross-training (yoga, weight-lifting) and I intend to do it nationally (I told you, audacious!). Girls are still an underserved community where athletics is concerned and the lack of education about their own bodies and physical well-being is staggering. I believe that, through physical fitness, young girls will feel better about themselves, take care of themselves and maintain a healthy body for life. Now all I have to do is get that doctorate, right? Right! Four more years!

The other change I want to see in the world is an even more personal one for me. I don’t know why I hesitate to talk about it, but I do. In yoga class, instructors say that the poses we want to get out of the soonest are the ones we should do the most. Maybe this topic is the one I should share more about since it’s one I generally shy away from, outside of my family and very close friends. I have a disease called Ulcerative colitis. It’s an Inflammatory Bowel Disease-IBD (how’s that for descriptive naming–jeez!) that is, at its core, an auto-immune disease.

Essentially what happens is that my body’s immune system recognizes something in my colon as bad (it is not) and attacks it. This provokes an immune response, causing the lining of my colon to flare-up (maybe you shouldn’t eat while reading this post…) and for me to get very sick. My symptoms are usually a low-grade fever, exhaustion, one very unhappy stomach and not “going” at all. For days. I mean DAYS (plural!). Not fun.

Because it’s an immune response, my immune system is weakened during flare-ups and I am more susceptible to getting sick from viruses. For example, an everyday cold that might give you a sniffle will put me in bed for a week with a 102 degree fever and the chills. Double not fun.

I was diagnosed a little over a year ago after seeing some extreme changes in my body and how it functions. A colonoscopy showed that I have classic Ulcerative colitis. Yay, me. My doctor, Dr. Boz (not his real name) is awesome and takes very good care of me as does his fabulous Physician’s Assistant (PAK-not her real name, either, duh).  I take several different kinds of anti-inflammatory drugs that attempt to put my body into remission so that I can get on with my life. So far, eh. I am much better when I’m on the drugs, but I flare up when I’m weened off and it makes my life hell when I’m flared up.

I didn’t really think Ulcerative colitis would get in the way of my doing the things I loved until it stopped me dead in my tracks this winter. One month after the weening process I was feeling awesome! And then the symptoms started…and never stopped. I got sick a lot during the Spring semester at school, which is not fun when I’m running out the door during Chemistry lab. You think bathroom talk makes adults uncomfortable? Try explaining to your 18 year-old lab partner what IBD is without her asking the professor if she can be moved to another table. Seriously, my lab partner was ok about it, but I could tell that my professors and TAs were always uncomfortable when I broached the subject of my illness and how it might affect my attendance.

I know, bathroom talk, ick. Get over it. This is my life.

More importantly, Ulcerative colitis started affecting my running in a very serious way. As runners, we are all used to Mother Nature calling during long runs. I, however, had her phoning me two, three, four times a run. Tell you what, running a consistent pace for 15-20 miles while stopping every 3 miles to visit the john is reeeeeeeally hard. But I was bound and determined that I would keep going and keep training through my flare-up for the New Jersey Marathon on May 1st. I trained hard and was feeling fast. That is, until race day.

This is sometimes like water in a desert for me during races.

I had a normal visit to the port-o-johns (p-o-j) before the race started on the Jersey Shore. My hubby love, JB, tucked into his pace group, his running buddy, Mr. Red Sox, took off into the faster pace group and I found myself happily running between the two. I felt amazing until mile 13 when I had to stop at the p-o-j. I immediately felt better and took off to finish my marathon. So what if my time reflected one bathroom stop? I was prepared for that. JB’s group had passed me while I was in the p-o-j and I was on a mission to catch up to them. But then that ‘ol familiar feeling of intense nausea came over me like a wave at mile 15. I walked for almost a mile to the next p-o-j and gratefully puttered over to it when it finally came into sight. This pattern continued through mile 20. 8 stops in 7 miles. It had been a long time since I actually thought about dropping out of a marathon. I wondered if I’d make it or if they’d find me passed out on the side of the road. I hydrated at every water station and was still physically ok, except for my crazy sick bowels. Forget beating my personal best, I was just hoping to finish at that point.

Something happened in Asbury Park and I started feeling better. I saw the mile 20 marker and decided to try jogging again. I progressively picked up my pace and by the time I got to mile 21, I was running my 8:20 pace and feeling the groove. I had my tunes blasting in my iPod (a savior of mine during this marathon) and I began passing people left and right as the miles passed by. One spectator said, “Wow, she’s flying.” I felt like Rocky at the end of the fight. I finished super-strong (“into the chute!”) and found that my very worried husband and Mr. Red Sox had both run their personal bests and were waiting patiently for me at the finish line. It wasn’t my slowest marathon, but my second slowest, and I was never more proud of myself than when I crossed that finish line on the Jersey Shore.

You see, Ulcerative colitis could have sidelined me during that race, but I stuck it out and refused to give up. I’ve never had something inside of me, my own body no less, try to stop me from finishing something. It’s a very scary feeling to have my body turn against me like that, but an exhilarating feeling to win the battle!

So excited to have finished! (sandwiched between my gorgeous husband and Mr. Red Sox)

Here’s the change I want to see in the world: talking about IBD. It’s gross, I get it, but I promise you that suffering silently is a miserable way to live. JB is the most amazing, supportive husband there is and I could not get through any of this without him. My family is truly awesome and a little more familiar than we’d like to be regarding auto-immune diseases, which makes them uniquely sensitive to my needs. I love them for that. Beyond a few close friends, though, I am silent about my disease because I’m ashamed of the symptoms. Last week, Mrs. Obi-wan (my Mom) emailed me because her friend’s daughter was recently diagnosed with IBD and was looking for a support system. I only had three references for her. Sad. Three! Well, here’s a fourth, this blog. I am going to write about my experiences with IBD and if it’s too much for you, skip to the end.

My hope is that you will accept this part of me the way that I have struggled to accept it and not turn away when it gets a little gory. This is me. This is my life. I am going to keep fighting and learning and trying to do everything I want to do, despite my disease. I hope that my journey can inspire you to do the same and maybe even be the beginning of a conversation for someone else with IBD. You never know.


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