So I started roller derby. I know, right?! After much talking and about a million questions to my good friend Christy over at Ostomy on the Track, I finally decided (after almost 10 years of wishing) that it was time to start training and work towards getting placed on a team.
Hey Friends. I have been pretty MIA lately due to a busy life, a growing non-profit and an active social life. All of which wouldn’t be possible with my awesome jpouch. I put it to the ultimate test a few weeks ago though when I went on a 3 day, 4 night hiking trip at Big Bend National Park in Texas.
From what I’ve seen and heard, many ostomates, male and female, are concerned about how others perceive them. We worry that our appliance can be detected under our clothes or that if people see our bags, say if we wear a swimsuit or something similar, then we’ll be labeled as “abnormal” or “gross.” For those of us who are single and interested in dating, we have additional concerns: Will we be seen as unattractive? Will a prospective partner not want to have sex with us? Will dates be freaked out?
Speaking from my own experience, I have never once (that’s right, not a single time!) had a date or sexual partner react negatively to my ostomy. One guy knew I had one because of our mutual friend. When we became intimate, I asked him, “so you really don’t care that I have an ostomy?” and he responded, “why the hell would I care about that? You’re beautiful.” Another guy I met online and after a few dates I told him about my ostomy. His two questions? Would sex hurt my ostomy and did my vag still work. When telling another partner, he just held my hands and said “an ostomy isn’t who you are, it’s just a small part of you, and regardless, I want to know all of you.”
Maybe my experience is abnormal, I’m not sure. But I do know this: when I tell or talk to people about my ostomy, I come across with confidence. I don’t make a big deal out of it, mainly because I don’t see it as a big deal. Aside from the three people mentioned above, I’ve been on multiple dates with others whom I did not become sexually involved with, but who certainly tried their best to get in my pants – all the while knowing I have an ostomy.
I don’t know how other single ostomates tell dates or partners about their ostomy, but I like to keep my approach simple. Once I find an appropriate and casual segue into the conversation, I say something like this: “So I got really sick a few years back, have had some surgeries to make me better, and one of them saved my life. The result of that one is that I now have an ostomy. I don’t think it’s a big deal and neither should you, as it really doesn’t affect anything.” Most of the time my date won’t know what an ostomy is, so I tell them very briefly and will sometimes show it to them so that they can see what a small part of me it is. The typical response? “Is that it?” or “That’s all it is?”
I’m not trying to downplay the negative experiences of other ostomates in the dating world as I’ve heard stories of dates reacting poorly, but I do have to wonder how the topic is being talked about or explained and whether the ostomate is coming across as confident or insecure. Perhaps a few readers can chime in and detail their dating adventures instead of just attacking Jackie for not understanding the permanent ostomate’s experience since she has a j pouch? I’d be interested in understanding what other ostomates are going through….
Hey guys. What’s up? Not much here.
That’s a lie.
I am one busy mofo. Hopefully you can tell that by the fact that I have not updated in over a month. …….bad blogger.
So heres the updates!
I am working hard at my new job, which I love. I feel fortunate to have it everyday and even more fortunate that my whole medical history is not an issue.
I am working my ass of for Girls With Guts right now. We are in full steam for planning our 2013 Fall Retreat. Holy crap you guys, I am so nervous but at the same time SO SO SO excited. If you’re a lady with IBD/ostomy/jpouch, I really urge you to check it out. I think we have an amazing weekend planned and frankly, it would mean a whole hell of a lot to me if some of you came. So many of you have been so important in my IBD path, and it would be nice to be able to thank you in person. If you are having a problem affording it, we’ve got scholarships! Deadline is the end of July so act fast! Also I swear that wasn’t a commercial, but its just a HUGE part of my life and I really want people to come because I think it would be really helpful and be a great resource.
I am speaking at conferences! I’ve been invited to speak at two conferences this year (I’ve declined one) but I was also asked to come speak and mentor at the Michigan Girls Scouts of America leadership camp. In the giddy 12 year old me, I am really really excited about this. I was a Girl Scout as a kid, and I remember having mostly fond memories (until I got kicked out, but that’s another story), and I remember it being a really positive part of my life. There is something inherently exciting about speaking to a group of young girls who are motivated and excited.
I’m back to my neurologist to start a new drug for my Multiple Sclerosis. This is sort of a touchy subject for me because I feel happy and healthy and I don’t want to be on any medication. None. I take NOTHING now and its so fantastic. But by not taking anything for MS, it’s not necessarily helping me, more or less just letting me throw my oblivious ignorant fit about being med free. So now I’m stuck between this adult rock and hard place where I want to just enjoy being healthy for the first time and a long time, and throwing a tantrum about taking meds because I DONT WANNNNNNAAAA. Getting back into medical mode is a little difficult. Doing testing again is obnoxious. But alas I am an adult and not an unruly 4 yr old. My new med won’t be a flavorful Flintstone vitamin but hell, there are medical breakthroughs everyday. You never know. Remicade could become a maple syrup you slap on pancakes once a month. Humira could just be the active ingredient in a new energy shot. A girl can dream.
I ran the Tough Mudder. It was 12 miles and 20-some military obstacles. While I’d like to be all, “CRUSHED IT”, the reality is that I did it, I finished, but I’m sure it was not pretty. It was 12 long miles of mud, mud, electrocution, mud, walls, the coldest water I’ve ever been in, mud, mud, and the norovirus. Apparently in the Michigan course we also had the added benefit of a gastrointestinal bug. Lucky day! But get this. I think I’ve put enough Good Gut Karma into the world that I didn’t get it. Dude, I know. Days after the race normal, healthy, coloned people were dropping line flies due to IBD like symptoms. I, however was not fazed. I wonder if I gave all of Tough Mudder IBD. Suckaz. The summary is that I didn’t train enough (per usual) and it was hard but not impossible. Honestly, my body and its abilities keeps amazing me. It may not be the hottest bod, or the strongest, but its been through a lot and now I have a fancy orange Tough Mudder head band.
But that’s pretty much it. I hope guys are well. I have some more stuff in the cue for postings soon so check back and I swear to not disappear again.
Also…I live in Michigan, where the job market is coming back but still isn’t particularly strong. Before I graduated you could often find me talking to my co-workers at school having mini mental breakdowns about how I’d pay bills and how I’d never find a job. A week before I graduated I was approached by the university about a full time position, and I literally thought that I had been saved by some divine intervention. Rather, I had made a strong impact on my co-workers and had done my job well, so they created a position for me to keep me on board. In addition to that, they also gave me a temporary 3 month contract so I could continue to work while they pushed the lengthy university paperwork through. Right at this same time, I had my practicum site ask me about doing some temporary work for them, because again, I had showed a strong work ethic and a knack for archives. Much to my surprise, I was also approached by another company who had received my resume from a friend. This company had nothing to do directly with Libraries or Archives (what I was getting my masters in), but they were essentially an internet marketing company. I love social media, and I know marketing but on paper, I don’t have a ton going for me. And here is the kicker folks…they wanted me because of my online work with Girls With Guts and this website.
Let me write that again. A potential employer wanted me because of my online work with Girls With Guts and this website.
They didn’t pass me over because I talk like a trucker, or because I have a butt disease and a brain disease and because all I do is share the consistency of my crap. They wanted me because I showed that I know the internet marketing space and how social media can be utilized to make an impact. All I have been doing, is what I love, and what I didn’t realize, and what you should all realize is that people are watching you all the time when you have a presence online. They are watching your triumphs and your faults.
So what did I do? I essentially had 3 job offers on the plate. Read that again. 3 job offers despite my health history (which they all were very aware of, in fact we talked about it during interviews), and despite this very blog. Take a moment and let that sink in.
So what did I do? I took the job at the university because I loved that job and the benefits were amah-zing. But I only worked there a month before I quit.
Wait, what? I had a stellar job, with amazing benefits, and stability and I quit after a month? I sure as hell did. Why? Because I got offered a better job.
A job so good that my boss at the university told me I HAD to take it! And here is where the world comes full circle people. Remember how I said someone is always watching? Last year, I had a concerned father email me about his daughter who was going through the same thing many of us had experienced. After some back and forth, we realized that I had already been in contact with his daughter and we had realized that they lived within miles of my house (small world!) and I met her for coffee. I continued once in a while to converse with her father when he had a question or concern. Through a strange series of events, I ended up at a football tailgate with them and we all had a really great time. A few weeks ago he approached me with a job. Not just a job, but a really good job. I was really happy and comfortable at the university and nervous about switching careers essentially into a field I was unfamiliar with. After many talks, he told me that he had monitored my internet moves, not in a creepy way but how I interact with you all, how I use social media, and how I communicate my message to the world through this blog and Girls With Guts. He really showed me that my hobbies were in fact, marketable skills.
So I took the job and I started last week. And now I work for a giant company, with amazing benefits for anyone but particularly people with chronic illnesses, in a position that will challenge me but also reward me with new skills and relationships, for a boss who knows probably more about me that he would ever want to, but more importantly who understands everything.
So do you see my point? The very condensed version is that this blog got me a career. And to be clear it is a very professional career, at a company I wont mention because while my boss is a-ok with me talking about my butt, I don’t want the company as a whole to come up when people Google my blog/name.
So the long and short of all of this is… be a good person.
Do good work. Don’t be afraid to put yourself out there, and you might just land a dream job because you told your story. In my mission to help others with IBD and MS, I have reached a lot of people. And my point is that you never know who is watching, and the people you want in your life will commend you for sharing your story and being honest.
What I’ve learned through all of this is that I really wouldn’t want to work for someone I had to hide my past from, but I’d rather work for someone who respects me for the journey I’ve traveled. For me that is what being a true activist is all about. I understand those who write anonymous blogs, but at the same time, I think they are doing themselves a disservice and a disservice to their community. As an activist, I do my best to set an example, and I would feel like a fake if I hid who I was and what I am passionate about.
I am not so naïve that I think what happened to me can happen to everyone else. I don’t think there are concerned family members reading blogs just waiting for the chance to pounce and offer up life-changing careers. But even if it doesn’t result in a fantastic career for you, do you see how you always will reach the right person at the right time? I think that is what it all comes down to. Timing. Karma. Fate. Whatever you want to call it. I do think that if you put good in the world, then someday, somehow you will get good back.
So, thank you boss man, for taking a chance on me and helping to prove to a whole community of people that there is life beyond chronic illness.
Hey remember me? I used to blog here. LIfe got in the way and I’ve been a little MIA.
While I was gone I ran this little race called The Las Vegas 1/2 Marathon, oh you know, NBD.
Check that. It was a total big deal. Here’s how it went.
We arrived in Vegas on Friday and the race wasn’t until Sunday night. I had never been to Vegas before so I was pretty pumped to see the city and try to soak it all in. Friday night my team went out to Senior Frog’s and had dinner. I sat at the table with two of my teammates who I didn’t really know. Through the meal and conversations, I realized that I actually knew of my teammates. Well…kinda knew her.
Sometime last year, or maybe even two years ago my sister was getting her hair done at a new salon. Because my family talks about my butt as much as I do, she revealed to her hair dresser that I had UC and MS and that I blogged about it. The hairdresser revealed she also had UC and my sister encouraged her to check out my blog and connect with me because the salon is only a few miles from my house so we must live close to one another. Well, the hair dresser never emailed but it was a cool story nevertheless.
Fast forward to Senior Frog’s and the hairdresser is Michelle, my teammate sitting across from me at the table. I don’t know if there has ever been a more serendipitous moment in my life.
Saturday night was the pasta party, which is a lot of carbs and inspirational talk. It was nice, a bit of sensory overload, but nice. After we left there, we went to a Cirque show. I chose to see Zumanity because if there is a show with acrobatics AND nudity, I’m all in. It was pretty amazing. Sunday rolled around and the nerves started. The worst part was that the race didn’t start until like 4pm, so I had all day to sit around and be nervous. Normally when I run, I dont eat, or I eat very little before because I don’t want to have to poop especially for long distances. Well this plan was totally shot because our race wasn’t until the evening. I knew that I couldn’t skip all meals before the race so I was really nervous about what to eat. So I went with the safe breakfast foods, soft stuff, everything I’ve ate before and there was no issues. I had walked around a lot the days previous to the race, and my feet were hurting a little so that Sunday morning and afternoon I just sat around in our baller hotel room and lounged in my comfy bed, napped and watched some tv. As race time approached, I really didn’t want to do it. I was worried about my knee and my lack of training and I just wanted to not show up, and just pretend like I wasn’t there for TC.
Begrudgingly I started to put on my race clothes, which I fretted over. Too warm? Too cold? Too tight? Not enough pockets? It almost felt like I had never ran before in my life. I was so nervous.
Finally I was out of time. I put on the rest of my clothes, my RFID shoe tag and walked downstairs to meet my team to take the bus to the starting line. This was it. I got down there, and started chatting with my team, and I realized I was ready. I was calm. I was happy. I even had a wonderful young lady who follows me on twitter come up to me and chat with me.
Then I got the phone call. I had actually put on the wrong piece for the RFID tag on my shoe. It was up in my room. The bus was outside and if I didn’t have it, then I wouldn’t have any timing for the race. It wouldn’t even register that I ran it all at. So I panicked. I had to get up to my room and back before my team got on the bus and that was just impossible. Someone told me there would be more busses so I just had to run and hope that I’d catch a bus, if not…I wouldn’t be racing at all. I hauled balls, got the tag, got back and caught the last bus with Team Florida. Crisis averted, although I was panicked and flustered and not cool and collected which was not good. I got to the race, and I couldn’t find anyone from my team, but I did find Lauren from Forward is a Pace, who is responsible for talking me into doing TC.
I waited in line for the bathroom for what seemed like forever, was worried I’d miss the start of the race, and when I got out I saw that my corral was WAY down the line. Balls. So I literally ran to catch up to them. I got to chatting with some more people while we waiting for the start of the race. I had the Girls with Guts symbol on the back on my running singlet, and I had a few people tell me they knew about GWG, which was really cool.
The start line was in sight and as I approached the wind had picked up to what seemed like 50 MPH. It was like a damned tornado out there, dirt and dust flying everywhere with a particular affinity for my eyeballs. But then the gun sounded and it was time to run. The sun had already set, the temperature was chilly but got comfortable when I started to move and as I moved it felt good. I was passing a lot of people, saw many of my teammates and that was really cool. The lights in Vegas at night are amazing and having the whole main strip closed so we could run down it was a really cool experience.
I’ll be honest, I felt like I was killin’ it. I had a great pace. I felt strong, I wasn’t walking. It was like the stars were aligning for me to run the race of my life. The miles were falling away and I felt super good, but then I slowly began to hit a wall. So I ate some GU and kept on chuggin. Along the way I passed a chapel and noticed a TC singlet on the person getting married and I was like “oh cool! Getting married during the race!”. I looked closer, and realized it was one of my teammates. So I stopped running to watch their ceremony, which was awesome. Over all in the race, I stopped once for a bathroom break which was SO awesome. Around mile 8 or 9 things started to get hard. I walked for the first time, which was amazing to me. Like I said, I felt like I was killin’ it. I knew that it was just a matter of the mental battle at this point, that keeping my head in the game was all that was between me and finishing.
I chowed down some more GU, and just kept on crusin. My knees started to hurt a bit, my hips were a little achey, but nothing like how they were in the past. I got to this point where it was much easier to run than walk. Walking was painful, and threw off every rhythm I had. I could see the finish line way in the distance and I knew I was close but it was like one of those trick finish lines where it looks close but you’re in Vegas where buildings are huge and you have no real depth perception. The finish line was far. I started getting annoyed, I wanted to be done. It felt good and I was really proud of myself but I was tired.
Finally. I was there. I was disappointed when there were no fireworks upon my crossing of the finish line. There was no medley sang just for me and no dance crew out there. Not even a damn reporter. Total bullshit. But there were 1,000 photographers shoving cameras in my face as I tried to get to the end of finisher’s section. Every single race photo is awful by the way, which is just super.
So…I did it. I didn’t die. I even liked it. The next day I was sore for sure. I walked all kinds of funny but everyone else at the airport did too, so we all knew it was the 1/2 marathon pimp walk.
I did not hit my goal. My goal was under 3 hours and my time was 3 hours and 3 minutes. When I take into account that I stopped to watch a wedding, I think I would have hit my goal, which is just mildly frustrating. Overall. I think I did pretty well, and I was really surprised at how far I pushed my body and for once, it didn’t push back.
I’m not going to lie…all the training on Saturday mornings and in the heat or the cold…was worth it. That feeling of accomplishment was pretty intoxicating. Everyone is congratulating you, and there was this overwhelming pride of knowing where I had started in 2009 with UC and where I just finished. In Vegas. After a 1/2 Marathon.
It was the ultimate “suck it” to colitis. I was really proud of myself, which is often hard to accomplish when you often feel like a leach on those in your life. TC is really about hitting your own goals and competing with yourself. Sure, I wanted to hit my goal, but I wasn’t racing anyone else there. I was so focused on myself and my run that no one else mattered.
I had a lot of people come up to me before, during, and after the race when they recognized the GWG logo on my back and that was really amazing. Sometimes Charis and I sit here behind our screens thinking that GWG resonates with people, but it wasn’t until I was around people who knew about us that it really rang true. That was an added bonus to the weekend.
Am I done with TC? I thought I would be. I might be. But it comes to Chicago in June…and that might just be too close to turn down 🙂
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 seen a lot of women talk about how their jpouches go completely out of whack when they are on their period. I, too, am one of those women. I understand that my uterus and my jpouch share the same real estate, but they just cannot seem to get along…at all. They remind me of two siblings sitting in the back of a mini van on a long road trip, and one yells out “She’s touching me”. I get it…you two are touching each other …all the time. But can’t we all just get a long?
I think this sibling rivalry going on in my lower abdomen is what causes my jpouch to turn into an unruly toddler. I seriously feel like I have an unpredictable 2-year-old living inside of me. My jpouch throws tantrums which make me late for things, specifically work in the morning because for whatever reason it has an issue with mornings. My jpouch is generally a total rock star, but in the morning it’s so indecisive. I feel like I empty 3+ times within an hour span in the morning, but ONLY in the morning. The rest of the day is totally fine. I feel like this is totally aggravated by my pissed off teenager of a uterus.
So I have a teenage girl…and a toddler sharing my abdomen, clearly it is a recipe for disaster. The toddler throws a fit, the teenager gets all pissed off because as the oldest she never gets anything. The toddler gets all of my time, love and affection. I spend all my time bragging about the toddler, how great it is and how it’s getting along so well with my other organs. And the teenager is just something I ignore until it causes me some discomfort. Ugh. …kids.
I’ve realized that I think about my jpouch and refer to it like a foreign entity in my body. It’s almost like a prosthetic arm or something… it’s just a piece of me that I know is different and functions independently of what I really want it to do. I swear sometimes it has its own brain, which is why I think of it as just something living inside me. Does this make sense? Does anyone else feel that way? I think this is probably why I say “empty my pouch” versus “take a shit”. You guys know me, you know I like colorful words but it doesn’t really fit. For me, my jpouch is basically like how my ostomy was but on the inside. I don’t think about it as apart of my body but as something that helps me. It’s a device. I’m not sure any of this makes any sense.
On that note…my toddler is starting to yell at me. Hopefully I’ll have something worth reading next time.
Sara compiled some out takes. I hope this is as funny for you guys as it is for me, because I almost spit coffee out of my mouth at work this morning while watching it.