I am currently starting a new medication for MS called Tecfidera. Much to my chagrin, the first month of this medication has patient reports of mega GI issues. So “mega” that many patients with normal colons stop the medication. Jackie, why are you such a dumb dumb and taking this med? Well, in terms of MS medications the options are limited because I am not “compliant” with taking injections. Which basically means no matter how many times I start an injection therapy, I forget, don’t want to, or whatever other excuse there is for not taking it. Last year I tried Gilenya, which was the first oral medication released for MS, and well…I can’t take that one either. So I’m here, trying Tecfidera and all was well for the first week or so but now, its just dehydration all over. My poop is 100% liquid, and I haven’t been eating much because it makes me feel super nauseous. I even had an accident last night because the stool was so loose. This literally NEVER happens to me. So this brings me to my favorite IBD delimma, to ER or not to ER. Before you give me the lecture, just know that I will probably wait until the last minute to go because its what I do.
BUT the whole point of this thing is symptoms of dehydration because so many are obvious and a few are not so obvious. So when I’m dehydrated, here is what I feel.
Extreme fatigue (I’m sleeping like 11-12 hrs a night and its not helping)
Dry and itchy eyes
Sore throat or a “sick voice”
a heavy head, it feels difficult to keep it held up
It feels like I poop liquid more frequently, almost as if my body is tying to deplete itself
Contrary to most people, I don’t feel thirst. I actually do not want to drink at all
Dry skin on my face and hands
Constant headaches all over my head, unlike a cluster headache
difficulty with breathing
everything is slow, my walking, my talking, my thinking, everything
fever or hot flashes
I also feel very cold and get chills often, regardless of the hot flashes
heavy heart beat. When I lay still I can feel my heart moving my whole torso when it beats.
Sore back between my shoulder blades
So what do I do about it? First I get really frustrated and angry. Then I load up on Smart Water (because I truly believe it works). Then I sleep a whole lot. I’ve been pretty depressed lately, so I’m doing my best not to cry. There are these hydration packets that I think I’m going to try this time. Frankly there is a huge part of me that wants to just give up on the home hydration because its exhausting and very frustrating. But someone once told me the importance of taking control of your health even when its going down hill. I recently learned that the way you do or don’t take care of yourself can frame how someone views you. I always make jokes about my future, and how pitiful it maybe, but I learned that not everyone thinks those jokes are funny.
Frankly, I’m tired of taking care of myself, but you know what? You do what you have to do and hopefully this time won’t involve the ER.
Something is off in the IBD universe right now and I don’t know why, but I don’t like it. Many of my close friends have been sent to the ER and had hospitals stays for blockages, fistulas and a lot of dehydration. So I’ll preface this with, srsly people. Take care of yourselves. We all need a reminder to take it easy, and to stay on top of our health, and I hope that you take my hospital fun and that of my friends as your own reminder.
So during this period of time I had an interesting situation arise. I would say 90% of my friends have IBD or related health issues. Usually when one of us goes down, be it for IBD issues or life issues, most of us are there to pick them back up. To offer support and to listen to how much life sucks at that moment. But what happens when all of your “pick me up people” are down for the count? How do you pick each other up?
Well I learned that you don’t. I found myself struggling between keeping my own head above water, and sincerely caring for my friends who problems were equally as complicated and sucky. Constantly torn between feeling like a shitty friend and wanting to just be selfish and sick and sad. I would fluctuate between being mad that they didn’t show enough interest or concern in my conditions but at the same time logically understanding why they didn’t and that I was not as supportive as I would have usually been.
So it became this big, mean circle. Where I got sick, and they got sick. I cared for their issues until I had to care about mine. Then I would have less of an interest in their issues, and they’d take less of an issue in mine. Then I would be angry that no one cared as much as I wanted them to. I haven’t confirmed this with any of my other friends, but I almost hope that they felt that same anger, and that I’m not a total asshole.
I am overly sensitive right now. Life is awesome, and I’m doing awesome things but my personal life is a bit of a drag. And it dragged down my health and my attitude all at the same time and I’m working hard to stay on top of it all. But recently I had this power struggle between how I aid my friends and how I aide myself. Quite frankly. I didn’t figure it out. I think I’m past this scenario at least for a while as it seems as though we’re all on the up and up, but damn. That sucked.
Traveling with a J-Pouch can be nerve-racking and a tad more difficult than it is for healthy-coloned folks, but from my personal experience, J-Pouch travel is infinitely easier and more pleasurable than traveling with active ulcerative colitis. I would compare traveling with UC to getting a colonoscopy with absolutely no pain medication or anesthetics while traveling with a J-Pouch is like getting a routine pouchoscopy.
As a comedian, I spend a great deal of time on the road. My last UC flare began in the spring of 2008 and continued until I underwent my first surgery in December of 2010. Even though I feel incredibly grateful that people pay me to tell jokes, my “business” trips were not that fun during those two and a half years. Often, to get to my gigs, I have to take two flights, then rent a car, and then drive two to four hours to reach my destination. Doing these marathon trips while experiencing intense stomach pain and defecating 30 times per day was pretty brutal. There would be times when, after the plane landed, I had to push old women aside as I made a mad dash to the nearest toilet. There were tons of uncomfortable and worrisome moments, but a few will always stick out in my mind.
I’ll never forget the time I was driving from Albany, NY to Canton, NY, when I was in the middle of nowhere and I knew that I only had minutes (if that) to reach a restroom. I’m sweating, clenching every muscle I could possibly clench, and envisioning the worst-case scenario. Thankfully, I spot a gas station, do that uncomfortable walk/run while attempting to keep my butthole closed and just make it to the facilities, barely avoiding having to get the rental car detailed. I know I’ll never make a more satisfying trip to a gas station bathroom. Then, there was the time when I was driving from Milwaukee, WI to LaCrosse, WI and faced a very similar situation. On this occasion, I found myself running through a fancy hotel, hoping to make it to a toilet before I soiled the marble floors of the hotel lobby. I think many of you know that having UC involves a series of close calls and unfortunate mishaps.
A few months ago, I was asked to go on an overseas tour of the Middle East to entertain the troops during the holidays. I would be going to Lebanon, Jordan, Turkey, and Egypt. I immediately accepted and was excited about the opportunity. Since my J-Pouch surgeries, I have resumed my frequent travel schedule and I haven’t had any real problems while traveling. However, all my trips had been domestic and I was aware that I had to take extra precautions with international travel. I would be going to places where the food and water have wrecked the stomachs of people without my issues, and I would be visiting countries where there probably wouldn’t be a surgeon or doctor around who knew anything about J-Pouches.
I returned from my twelve day trip on Friday, and I’m happy to report that I’m doing just fine. I made sure to pack everything that could help me if any J-Pouch related issues arose. I brought Lomotil, Immodium, Cipro, Protonix, and my butt-burn ointment. Because I performed at the American embassy in Lebanon and on military bases in Jordan, Turkey, and Egypt, I had American medical personnel available if I ran into any issues. Also, the military has evacuation plans in place if you run into a serious medical problem so that they can get you to a hospital that can provide adequate care. I avoided drinking the water and tried to only eat foods that I thought were safe.
My trip wasn’t completely problem-free. I experienced some stomach pain that was alleviated after I popped a Protonix and got some serious butt-burn. However, I was more than willing to experience some butt-burn in exchange for such a remarkable, fun, and fulfilling trip. I was able to snorkel in the Red Sea, visit the place where Jesus was baptized, do some karaoke with Russian tourists in Egypt, and joke around with a two-star general from New Zealand. More importantly, I was able to meet and entertain hundreds of troops who were incredibly appreciative to be able to see some comedy while they were away from their friends and families over the holidays. So, even though I became a little worried when the troops stationed in Sharm Al Sheikh, Egypt told me that the food they ate there had given them what came to be known as the “Sharm Shits”, I was confident that the “UC Shits” were much worse and I’d survive if I was to be afflicted with this unfortunate ailment.
If any of you are contemplating any sort of trip or excursion, but are concerned about traveling with a J-Pouch, I strongly encourage you to go on your adventure. Although I still worked as a touring comedian while I had active UC, ulcerative colitis robbed me of so much and kept me at home and in pain way too often. Now that I have a J-Pouch, I am unwilling to let my health situation deter me from living the life I desire (I try to avoid doing anything too stupid, though). I feel like I’ve been given a new opportunity and another chance to truly live. I want to make sure that I take full advantage.
Today is November 18th, and my half marathon with Team Challenge is oh so very close. Like 14 days away from today close. At this point I’m supposed to be tapering down my mileage.
I’m not running at all.
This is why.
That my friends, is what I did last Friday night. Since then its turned into this.
And here I am 9 days later and I have just now stopped limping. I still can’t bend it all the way, and if I put too much pressure on my left leg it feels like my knee cap is going to pop right off of my leg. So…what does this mean?
I’m not really sure. I trained at the gym last monday and my trainer told me he doesn’t think I’ll be able to do the half. I’m pretty determined to do it, but at the same time, I’m not training. I’m not running. Its like starting over if I try to do it and do it well. Ugh.
Remember how I was all “I want to do this well and kick its ass”… I will not be kicking any ass TC weekend in Vegas. I’ll be lucky if the hotel has enough ice to control the swelling in my knee after I force it through 13.1 miles. I’m kind of in this place where I’m not sure if it all has set in yet. I haven’t accepted that I really might not be able to do this race. Like…really.
Instead I just keep telling myself that I have plenty of time to recover and somehow magically my stamina will be fine and I will still have that picture perfect moment crossing the finish line like I imagined. That I’ll be running across that finish line…that I will cross it at all.
Am I nervous? Meh. Yea a little, I don’t want to screw anything up permanently. Am I frustrated? Yea. Really frustrated that I raised over $4,500 with the promise that I’d train my ass off, and cross that finish line while simultaneously punching IBD in its face. I really don’t want to be on the sidelines. I really really want to do this race to the best of my abilities and I haven’t realized that “my abilities” might have just changed in the last week.
In other news, my semester is almost over. Just a few more tough weeks and I can ::hopefully:: graduate and get a real life that doesn’t include 4 jobs, 2 classes, a 1/2 marathon, and a new non-profit. I’m really hoping that a job will pan out and that I can not stress about money. If that happens it will be the first time since I got sick…over 3 years ago that I won’t have to worry about money. Wouldn’t that be amazing?! I don’t even remember a life where bills got paid on time and going out to dinner leave me feeling guilty.
I want to have money to lead a normal life. And I want time to focus on Girls With Guts. Doesn’t seem like too much to ask for to me!
Today is World Ostomy Day, and it has brought up some interesting emotions and realizations for me. I want to share some things with you. Intimate thoughts, and unflattering pictures.
That picture is me before my first surgery. Very sick. Very overweight from steroids. Very scared. Very VERY horrified I’d have to have an ostomy. VERY embarrassed of myself and my life. Ashamed. I wrote about what I had expected my ostomy to be like here. I wrote that I hoped I’d look back with fond memories, and in fact, I do. Having my ostomy taught me humility, but more importantly it taught me to laugh at things I couldn’t control. I remember trying to maintain a positive outlook and I just kept telling myself, ok its just 9 months. Its JUST 9 months. 9 Months. Thats it, just get through it.
But then things started to change. Slowly, I wrote this entry just 4 days after my first surgery, and even here I was writing about how I didn’t like my ostomy, but I already felt better. I remember it felt so foreign on my body. I didn’t want to touch it or hear it, or see it, and if I heard that plastic crinkle it just reminded me of the bag I was now stuck to.
It seemed like it took forever for Surgery #2 to get here. There was 6 months in between surgeries, and a lot happened in those 6 months. I tried to return to work, but just couldn’t seem to get my head in the game. I lost my job and my pending time off didn’t really help my case either. I didn’t know a soul with IBD and I desperately searched the internet for friendly words and advice and the only place I really found to be helpful was Jpouch.net. You see back then, HONESTLY, there were 2 websites about jpouches on the internet. We’ve come a long way since 2010. I found a friend, Brevin, who told me about Camp Oasis and how he’d just volunteered, and I thought well, that sounds cool, I’ll look into it. I contacted my local CCFA and had an interview to be a camp counselor which literally consisted of my crying in our directors office because, for the first time ever, I was in the presence of someone who understood how lonely it was. She was telling me about camp and how the kids who come there feel lonely and isolated and that camp was a safe place for them. And I just lost it because I was desperately searching for something like that in my life. My first year at camp was interesting. At the time I really didn’t see how magical it was or how it had changed me. I even wrote that it wasn’t as good as I thought it would be. I didn’t leave with new best friends. I didn’t really leave any different than I had arrived…or at least I thought. What I didn’t know, and I didn’t see was that camp had changed me and empowered me in ways I never even realized. And I would really need what I learned there when my second surgery came and went and was unsuccessful. That first year at camp wasn’t about the people that I met, it was about what I learned about myself and that is what I took away.
Surgery #2 was supposed to be my second step and I was supposed to get a loop ileostomy and have my jpouch created and put in place to heal for another 3 months and then I’d be done! That didn’t happen and I was devastated and depressed and yet again alone. At that time, I had you guys. I had this blog and that was really it. I didn’t really connect with my camp friends that first year, and other than my family, I was so devastated. Thats the only word I can think of to describe how defeated I felt. I thought colitis was still winning and I just didn’t know what else I could really do at that time but crawl into a hole and stay there. And I did. For a long time. But I knew that if I wanted a jpouch someday, I’d have to work for it. Literally, I had 6 months and 40 lbs to lose before my surgeon would even try again. So when I could, I got a personal trainer and started working out. I WOULD have a jpouch. I WOULD get through it. And I did. I worked my ass off literally. I worked out like it was my job and I learned how to work out with an ostomy, and I learned how to talk about having an ostomy and about my life more in person. With real people not just to the internet. I explained my life and my ostomy to my trainer at the time and while I could tell he didn’t really get it, he still encouraged me. He wouldn’t let me say “If I lose the weight”, he would say “When you lose the weight”. He honestly taught me an amazing lesson in positivity. He taught me how to picture what I wanted and that the mental game is more than half the battle. It IS the battle. He is still my trainer today, and has turned into a really good friend. A friend that puts me in headlocks on a weekly basis, isn’t afraid to tell me when I look like shit, and make me work really hard. But a friend that taught me how to believe in myself, and that if I pushed, my body could do it. I could do it. Again, I didn’t know I was learning these things at that time, but I was, and these are skills I still have now.
Surgery #3 came around in March 2011. I did it. I lost the weight I needed to lose. I drove my ass back to Cleveland and I walked into Dr. Remzi’s office and I was ready. Let’s do this. I was never more prepared for a surgery in my life. I was mentally strong, and physically stronger than I had been in over 2 years.
The surgery came and went and was flawless. I left Cleveland in a timely fashion and felt like a damned rockstar. Until a day later when my stoma separated. And I have never been more horrified in my life. I had also been fighting that nasty ulcer, and that combined with the separation made me absolutely terrified. Again…I felt defeated. Would ANYTHING work properly? Would I ALWAYS have problems? So back to cleveland I went. Defeated. Frustrated. Angry. Depressed. But this is why I learned that sometimes, you don’t have a choice. You have to keep going, and trying because there is not another option. And as much as it sucks, you pack up everything you JUST unpacked, you call your mom crying, and you ask her to come over help. You learn to ask for help. You let you mom make phone calls for you, and then you have your Dad come pick you both up and drive you 4 hours right back to Cleveland. I think I cried the whole way there because I just couldn’t think of anything else to do. But right there, in that time, I learned how amazing my family was. I mean I knew it before then, but it was moments like this that I knew I’d never be able to do it all without them. I also learned that no matter how old I was, there would still be times that I wanted and needed my parents to come to my rescue and that it was ok to ask for their help and to depend on them because sometimes they wanted to be needed too.
So after that got taken care of, I went home mentally exhausted, but at the same time I knew that if I just made it until June, I’d have my takedown. I just had to make it 3 more months. And then I had an MS attack that took my vision and all of my optimism. I was told I’d have to push back my surgery…again. And this my friends, is when I lost it. Right there, that was my rock bottom. Physically and mentally overloaded and after years of just pushing through, I caved. Everyone has breaking point and that was mine. I retracted into myself, I stopped answering the phone, going places, eating. Everything. I learned why people choose to die over choosing to keep going. I learned that I had that choice too and it took me a while to choose to keep going. I had tons of support from everyone here, but at that time in my life, I had to choose to live on my own.
And I did.
During all of this I also found a new surgeon because I was having problems with my surgical team at Cleveland. And then…it was June. My takedown was scheduled for June 6th and when June 1st hit I had this mini identity crisis. I was so excited to take the next step in my IBD journey and try out my jpouch that I had worked SO hard to get. But at the same time it was like diving head first into the unknown. It was like my first surgery all over again, I was scared, and nervous, and doubtful that it would even work. I took tons of pictures of me with my ostomy because I wanted to remember myself in that place. Happy. Healthy. Confident. Proud. I wanted to remind myself that if I could feel this way with my ostomy, that I could take on the world with my jpouch.
I never posted some of these pictures, because its one thing to be confident, its another to post half naked pictures of yourself on the internet. But you know what internet, I look back at these and I see progress. I see a body that I worked hard to get, even though it wasn’t perfect. I see scars that are healing nicely. I see that I was starting to build myself back up.
Surgery # 4 was different.
I was so prepared for it. I was so ready and I thought it would be easy peasy but it wasn’t. It was a difficult recovery. But when I woke up in my bed the first thing I did was reach down to feel for my bag. And it wasn’t there. I didn’t feel relief. I wasn’t super happy. I actually mourned the loss of my ostomy a little. For the next few weeks I kept reaching down to touch my bag, or adjust the stool. I had created all these habits from having the ostomy, and I never even realized it. It was almost like a nervous tick, I just did things without even thinking about it, and now…I didn’t have to. It was weird. The other day I was actually thinking about how fast we create habits…and then how quickly we forget those habits. I probably stopped checking my “ostomy” just a few weeks after surgery. At the time, I felt like I’d always be checking for it. So quickly we forget.
I don’t want to ever forget. I remember my ostomy like I remember an old friend. I learned a lot from it even though it caused me stress and frustration. I am thankful I had it, because it saved my life. Having my ostomy introduced me to so many new people, and put me in many new situations that I would have never been in. IBD changed me, but I think having an ostomy molded me. It helped turn me into this person who I think is pretty great. Like I said, my ostomy taught me humility, but it also taught me how to be proud of myself and my accomplishments. I learned about my own personal drive in life, and my passions. My ostomy took me to new places, and I’m not just talking about an OR table, or comedic situations that would make that scene from Bridesmaids look like a disney movie. I’m talking about the places I’ve gone, the people I’ve met, and the places that I went in my own evolution.
Today is World Ostomy Day, and on this day every year, I’ll remember how I got to where I am. I actually kind of wish I had an Ask Me About My Ostomy shirt because I am more than happy to tell anyone about my front butt that saved my life.
Wouldn’t it be great if when someone said, “I’m going for a scope tomorrow”, it meant they were getting a sweet telescope. That they were going to spend their day anticipating the next starry night, instead of drinking clear liquids and shoving enemas up their butthole?
I’ve been due for a scope since June 6th, which was my year post take-down assiversary. I however, promptly celebrated by eating cake and did not have a scope. July…no scope. August…no scope. September…no scope. You see where I’m going with this.
“The time has come”, the walrus said. I’m pretty sure walruses don’t have to get scopes, so he wasn’t talking about a camera up his big ol’ walrus butt.
I’m being a cry baby. I know I should go get my check up, and that I should waltz on in there and be all “Ok here’s my ass, shove a camera up there”.
BUT I DON’T WANNA.
I have successfully gone almost a year without getting ANYTHING shoved up my ass. That’s like a freaking Guinness book world record for IBD patients. A whole year without any fingers, tubes, camera, pills, NOTHING.
And now..my “winning” streak is ending. In our world…a year with no butt intrusion is winning. Take that Charlie Sheen.
So tomorrow, I shall do my stupid scope. Awake.
I KNOW. I vowed to NEVER ever do that again, but this is a pouchoscopy, which means its short and sweet…or so they tell me. And as much as I’d love to get knocked out an anesthetized tomorrow…in lieu of taking the whole day off, and making someone else take a whole day off to cart my doped up ass around, I’m putting on my big girl pants (well actually I’ll be taking them off), and going to go do this stupid thing awake.
Also…its not until 2:45pm. Also…I have to work the morning before.
So I will not be taking the recommended 2 enemas before hand. Why? Because I have a jpouch damn it. It’s practically a build in enema…nothing stays in there more than a few hours anyway. AND…because I’m a rule breaker. I do what I want.
Tonight I had my “go to” clean out meal…a double cheese burger meal, and I’m sure in a few hours I’ll be all kinds of cleaned out.
Secretly though I’m kind of hoping that while I’m sitting there on the table, staring horrified at my own ass as the camera gets closer and closer, that when the scope is all up there doing its thing, perhaps we’ll find the Hamburgler stuck up my ass.
Recently I’ve been having a hard time training for Team Challenge. I can’t seem to find the time to train properly, I’m getting frustrated and discouraged. For me, just signing up and showing up to the start line isn’t anything worth writing home about. Anyone can register for the race. Anyone can buy the gear. Anyone can say “I’m on a Team Challenge team”. To me…this is about finishing the race. Finishing the race is what will be amazing. There is nothing amazing about showing up. Its about how you finish. And when I say “finish”, I don’t mean how great your time is or how fast/slow you were. I mean that you trained, you showed up, you ran/walked the race and you finished it strong just like how you planned. You don’t punk out along the way. You don’t give up when things get too hard.
I had a long chat with my TC mentor and manager last night about how I was discouraged in my training because I simply do not have the time to run 15 miles a week right now. I had planned on running this race as much as I could and right now, that’s not even close to 13.1 miles. My manager and mentor told me that maybe I should consider changing my race strategy to explicitly run/walking. Which is essentially interval training. I can’t believe I didn’t think about that. I was so focused on how my training was lacking, that I didn’t consider my plan was flawed. Right now all my schedule allows for is running when I can, so that means when race day comes, I’ll run/walk this 1/2 marathon. My body won’t have conditioned itself enough to run the whole thing…and you know what? I am fine with that because this is part of what I signed up for. I signed up to troubleshoot this. It would be easy to give up, or to just say “Fine, I’ll walk it”.
But that’s not who I am. I will fight to do my best. I will show myself and my team that I am stronger than UC. I am stronger than MS.
Sure. Things happen. Life happens. I could go into an MS relapse tomorrow that takes away my vision, or numbs me from the waist down…but I will do what it takes to get out of it, and start training when I can.
Team Challenge is a workout for your body AND your mind. Its improving my mental strength. Its showing me I can do more than I thought that I could and most of the time the only excuses I have are ones that I have convinced myself are true. “I can’t do it because ________”. Pick your favorite excuse. I’ve already used it.
To me its not amazing to show up, its amazing to complete something you’ve trained so hard for. Amazing is the feeling you get when you cross the finish line, not when you register for the race. It doesn’t take courage to sign up, it takes $75 to sign up. It takes courage to do it…and complete it. It doesn’t take much to buy all the equipment and call myself a runner. Running is what makes the runner.
This past weekend, Charis came to visit so we could work on some Girls With Guts stuff, and more importantly so we could have a little bit of fun. It seemed like we’ve been working our asses off lately, so it was nice to just hang out and have a few laughs. We did more planning for upcoming big changes, but we also met with our location for our event next year! More info to come! I really think everyone is totally going to love it!
What I really want to write about is the mud run we did. It was the Down and Dirty Mud Run and the breakdown is a 5K with obstacles along the way. This is the race that I started running for. Initially I thought that I would just run this race over the summer and train for months to get ready for it….the reality is that I did a “test” run in June as my first official 5K….and the rest as you all know is history. I started running, learned to love it, and the mud run just ended up being an added bonus!
The race started with a huge hill a few hundred yards in front of us, and if you’re a runner like me, seeing a hill like that is annoying and frustrating. I equate a hill like that to pure dread that does nothing but make me huff and puff. So we get up the first hill and I’m all “YAY the hill was conquered!”. Haha, joke was on me. The whole first mile or so of this race was mountains. I have lived in Michigan my whole life, and my geography teachers should be shot in the face because they never taught us about the mountains that are hidden within our Metro Parks. Those shit heads. The good news is that it wasn’t just me, Charis had a hard time with the hills too, and so did everyone other freakin person in the race. I’ve never seen so much walking at a race. I am an expert at this point…as this was my 4th race, so clearly I know everything at this point.
Anyway…the obstacles were pretty awesome. There was a lot of climbing, and crawling and such. There was a big walk through the lake and of course the mud. Mud is an interesting substance. It has the ability to seep through skin tight clothes and clump under the material. When I eventually changed my clothes…I was astounded as just how much mud had made it into…other parts of my body. Like my ears. Just my ears people.
I was surprised at how easy I found the obstacles, considering they were where most of my fear was directed. I was afraid I’d be too tired to complete them well…or even at all. But I gotta tell you Internet, I felt like a damn rockstar. It was like the obstacles weren’t even there. Up and over cargo nets, climbing walls, slippery walls, whatever. I did it, and I did it well.
Also, shockingly, I didn’t sound like a cow in heat while doing it either. Due to the nature of the race, I could bring along my precious headphones. I was horrified at the prospect of listening to myself gasp for breath for 3 miles. But yet again, I surprised myself. Once I got my breathing steady, not only did I not really pay attention to it, but I didn’t have to think to keep it steady. This shit is starting to come naturally, ya’ll.
I do want to clarify one thing about all of my recent posting about running. I remember very clearly a time in my life when all of this was not possible. Not even fathomable. I hope you all don’t feel like I’m posting these stories and photos because I’m bragging or flaunting how great I feel. My intention is to tell you all if you’re in the hospital or feeling awful…I’ve been there too. Remember me? 6 surgeries, 3 ostomies, complications, the Multiple Sclerosis patient? Its not like I’m the epitome of health over here. But I really WANTED to be able to do this…so I trained. When I feel good…I train. When I feel like shit..I don’t. Simple as that. I want you all to know that you CAN do this. Its not a matter of your IBD being better/worse than mine. Its not a factor of how out of shape you are or how weak you feel. What it all comes down to is the effort you put into it.
Right now, I’m still pretty amazed at how far my body has come. I’m even more shocked at how important I find “fitness” to be now. I have always been told how much exercise helps patients with MS and the key to maintaining my mobility in the future is moving. That was never enough motivation for me. Doing it…and the feeling I get after doing it is enough for me now. Working out and training to run is hard. Its not always fun, but after doing a race, or accomplishing something in the gym, I feel pretty awesome. Just remember if you’re in a bad place with your health right now, it doesn’t mean you’ll always be there. Set goals and do what you can to achieve them. I’m telling you, it works.
I have been asked many times why I am an advocate or why I spend my free time and money on raising awareness for IBD. I have a long winded, drawn out answer for this question and depending on my audience it can be really inspiring and technical, or loaded with swear words and jokes. I like to think that I understand my audiences. I have this same strategy when people ask me what a Jpouch is. I have loaded responses ready to be verbally vomited into the ear canal of the unsuspecting question asker. Depending who asks, they will either get my medical jargon-ed response, or something about how my colon is gone, yadda yadda, new internal plumbing, yadda yadda, wham bam poop chute answer. I’m really quite eloquent with words.