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Girls With Guts

A lame update post

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 DONT WANNNNNA. WHHHHAAAAA
I DONT WANNNNNA. WHHHHAAAAA

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.

Here I am looking particularly miserable as I get electrocuted.
Here I am looking particularly miserable as I get electrocuted.

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.

 

 

Team Challenge, Las Vegas, December 2nd, 2012

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.

Michelle and I

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.
I’m dumb.

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 🙂

 

 

Updatin'. The last 10 days.

Man have I been busy.

I feel like I’m so disconnected from you guys. Sad face.

But here is what I’ve been doing, which is some pretty awesome stuff. This is how the last 10 days went.

Fly to Chicago.

Meet up with Lauren, volunteer at their CCFA office. Have a great super awesome time doing puzzles, drinking wine, and watching Dawson’s Creek.

Drive 4 hours to Wapaca, WI with Andrea from GMB for Camp!

Closing ceremony to Oasis WI

Man, I love camp. Every time I’m at camp I wonder why I didn’t think about that as a career choice back in my younger years. Camp makes people better versions of themselves. I do love it. Oasis Wisconsin was very different from Michigan. Not bad different, just different. So many things were different and some of them I prefer. Some of them I’d like to take home and adopt them into our MI camp. Anyway…it was interesting being the new counselor…who wasn’t new. I definitely felt on the outside for a day or so, which reminded me what it was like to be the newbie, and to make sure that I’m always including new people. At the same time it reminded me that its good to be out of your comfort zone, try new things, meet new people. The beauty of it all is that when you’re at Oasis, you know they’re going to be good people. I was lucky to have Andrea and Megan there with me, which helped to soften the entrance to the group. The most obvious thing that I noticed about their camp was that…it didn’t seem like a camp for sick kids or counselors. The kids at this camp were noticeably more healthy than our kids, and same goes for counselors. Granted there were about 80 kids at WI and about 150 at MI, so perhaps that other half is all sickies. I’m not sure. It was very different in that aspect though.

Camp ends…an hour later drive to Appleton Airport. Fly to Minnesota. Then fly to Denver.

Get to Denver, get driven in a murdered out escape to my super boss hotel. Change out of camp clothes into adult clothes. Go meet the people who are at this patient panel, eat dinner, go back to my room…pass the fuck out.

Wake up at 6am…shower for the first time in a day or 2 (but who is counting). Proceed to have an amazing meeting.

There were none of these 😦

I got to Denver and I was all “Is that fog? A building? What the hell is that?”. I also didn’t see a single mountain. I began to think I didn’t land in Denver at all. Whelp, turns out, there are some serious wild fires happening over there, and there is just smoke upon smoke upon smoke. Hence the fog/wall I thought was seeing and why there were no mountains. Boo.

I signed some non-disclosure agreement saying I wouldn’t say what we talked about at this meeting. I probably can’t even say that I was at a meet that I can’t talk about. BUT…a large pharmaceutical company gathered patients together to talk about medications, newly diagnosed patients, and other patient related things. I must say, after this meeting I have a whole new respect for big pharma. I no longer just think it’s a big fat man, who resembles the Monopoly guy, sitting behind a desk playing around in freshly cut $100 bills. They actually are pretty normal looking. None of them wore a tux. Not a single one. I really think that these people want to help patients. They want to understand them, and make sure they are meeting their needs. That was refreshing and also reassuring.

Meeting ends around 5:00pm. Go to my room, order room service. Pass the fuck out.

Wake up at 6:00am. Get picked up…fly to Minnesota….fly home. Get puppies. Sleeeeeeeeeeeep.

After being in 3 time zones, 5 airports, and 5 planes…I am tired. Whooped. Beat. Cashed. D) All of the above.

I havent put this bod through that much ‘stress” in a long time and I am happy to report that she help up pretty well. I’m SUPER tired. I have had shitty sleep and I’m been feeling a little “off” since I got home, but there was a lot of travel and food I couldn’t control in there. Overall…pretty stoke that I had these opportunities and that I was able to take part in them without any limits! Go j-pouch!
I got home, slept for a bit and got back to the grind. Back to work, back to planning my ass off for Girls With Guts. You guys, that is going to turn into something beautiful and I am so excited for when I finally get to disclose everything we are doing! I think you’re going to be pumped too! Also Charis is coming to town next week. Giggle fest to ensue.

Post for The Gutsy Generation

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.

Read the rest of this post at The Gutsy Generation!!

Guest Post: FAP Explained

Something that I don’t know enough about is FAP. So many IBDers and people with FAP cross paths due to ostomies, but I never actually learned about FAP. So….here is some info on FAP.


Currently looking for someone to do a guest post on their experiences with FAP.

What is the best nation?

A Donation.

I heard that from a homeless guy in downtown Detroit once. I thought it was clever. Clever enough for a buck.

I was asked recently if I take donations for my site. I didn’t…but not because I’m against money but because I never thought about it. So I set up a donations button through Pay Pal and slapped it on the right side column of my blog. Now lets be clear, I am not ASKING for donations. In fact, I think that sites like mine that ASK for them is kinda weird and I’m all “what the hell are they spending money on anyway”.

It does cost money to run this site, not a lot, but since I’m living on grilled cheese as it is, it is enough to be significant in my life. So what I’m saying is, if anyone out there feels so inclined and wants to pay my mortgage, who am I to stop them? I mean really, that would be rude.

Also in case you’re wondering my mortgage is about $400/mo. So cheap, right? Wouldn’t break the bank for you at all. KIDDING.

No seriously, the idea of accepting money from strangers to pay for hosting and what not on my site is a weird thing for me and makes me mildly feel uncomfortable. But I wouldn’t have made it possible if someone didn’t ask me to do it.

Stop being all judgy. And start being more spendy. Kidding. Again.

 

 

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