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ROLLER DERBY!! Hi, I'm fresh meat!

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.

Continue reading “ROLLER DERBY!! Hi, I'm fresh meat!”

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Hiking Big Bend National Park, New Years 2013

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.

Continue reading “Hiking Big Bend National Park, New Years 2013”

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.

 

 

Eatin' Paleo

Totally realistic image of a cavewoman
Totally realistic image of a cavewoman

I made the choice about 2 weeks ago to switch to a Paleo diet. Since diet is such a common topic among my Butt Buddies I figured I’d let you in on what I’ve been doing. So here are the basics.

What is Paleo?

Paleo is also known as the “caveman” diet which basically means you only eat things that cavemen could have eaten in their time. Seem rudimentary doesn’t it? Trust me there is no pointing and grunting involved and if you’ve ever tried eating Gluten Free its very similar.

Here are the very very basic cliffsnotes:

Good:

Meat

Nuts

Veggies

Fruits

As organic as you can get. All those hippie terms are now your BFF.

Things that are organic, locally grown, grass-fed, free range, no GMO, ect.

Bad:

Dairy (except eggs)

Grains (ALL grains)

Legumes (peanuts, and chickpeas, ect)

Sugar

Fried food/fast food

Processed foods

OR you can use this fancy info graphic to help you make your choices. (Click to view larger)

 

Paleo-Infographic

So that’s it pretty much. Now go and stuff your face with meats and veggies. Well initially this sounds awful and quite frankly scary from an IBD standpoint. The basic theory on the Paleo diet (or lifestyle I prefer to use, because “diet” insinuates that its temporary), is that when cavemen were bee boppin’ around, humans didn’t discover agriculture yet, and because of that we didn’t eat grains. Actually grains are pretty difficult for out bodies to digest, those of you who are GF already know this. And grains are one of the more processed things that we eat daily, and things we are lead to believe are “good” for us. The reality is a single piece of bread is very processed, and most grains honestly do not hold much nutritional value. Sure there is the whole grain argument, but I’m not here to argue, I’m just explaining Paleo.

Why can’t I eat peanuts?

You are free to eat nuts, as long as they are not processed. So that means no roasted nuts, unless you’re fancy and roast them yourself. That means no salted cocktail nuts. That means no peanut butter. Wait…why not peanuts? Because peanuts are Legumes, not nuts silly.

Why not dairy?

Again, cave folk didn’t use dairy products. Hence neither do Paleo lifestyle people.

Ok so what CAN I eat?

You can eat as much meat and veggies as you want. Some fruit but be careful because it has a lot of natural sugar. You can eat eggs, and I eat a lot of them. They key is eating the cleanest food you can. The real complaint about Paleo is the money. Grass fed beef and free range chicken are pricey. Organic fruits and veggies are expensive. But I had this epiphany the other day where I realized that I’m willing spend a boat load of money on fun, and material things (I use the term “boatload” loosely), but not on what I feed myself. What the hell is wrong with me?  This is a personal choice, but after what my body did, and the great comeback it made, I’ve chosen to reward it with eating the cleanest food I can find, even if it costs me a damn fortune. My body has 1,000 reasons to fail and crumble, and I won’t let the food I eat be one of them. Also baked goods and deserts are not out. You can use almond flour, or coconut flower for a lot of baking needs. Frankly I cook a lot more, and I have eaten some delicious stuff.

How the hell am I supposed to eat so many veggies? I have a butt disease.

This is going to be the deal breaker for a lot of people. I can already notice that with my increase in vegetable intake that my bowel movements are different. Many are thicker, which makes pooping a little more difficult, but frankly has slowed down my system enough and its kind of nice. And its all about the veggies you can eat. If you can’t do celery, do freaking eat celery. I roast a lot of them, cook them in a pan, ect. I do not eat most of them raw. When I notice things are not moving as nice as I’d like, I use some apple juice to get things moving. I’m only 2 weeks in, but its going well. I slowly transitioned and that helped my system adjust. I’m still having a hard time breaking up with sugar, and I still crave it a lot but I have found a piece of fruit or a small amount of organic fruit juice helps to quench the craving and then its gone.

So how do you feel?

I think it’s really too early to actually say. I’m still fighting sugar cravings but they are lessening. It could be coincidence but I have slept much better the last few days, and I swear I have more energy. I don’t ever feel like I’m dragging ass anymore. When I wake up in the morning, it never feels like a bus hit me anymore. My stomach and intestine have adjusted quite nicely, and nothing I have eaten has given me any issues. I eat meat, veggies and fruit all day now. I eat nuts a lot too but I make sure to CHEW CHEW CHEW. A single nut at a time until it’s a paste. And I’ve lost 2 lbs.

What else do I need to know?

Are you working out at all? If you’re going to do Paleo you need to be doing some kind of activity, because all the protein you’re stuffing into your body will just sit there and turn to fat if you’re not working it out. If you are, it will help turn it into lean muscle and also to help burn fat.  What I like most about Paleo is that you can customize it to work in your life. If you wanna be crazy Paleo person you can follow the diet exactly and maybe go a little nuts along the way. For me, I do it as best as I can, and know that there are some vices I won’t give up. I like to drink Cider (Angry Orchard, or Strongbow). AO is Gluten Free but its still got a boatload of sugar….every once in a while. I”m ok with that. I lightly salted my roasted veggies with kosher salt. Some people can’t give up cheese. Some people can’t give up diet Coke. Thats fine. The goal is not to make you miserable, its to make your life healthier and if 95% of what you eat is good, clean food its probably an improvement from what you eat now. Frankly, giving up a lot of the grains and things hasn’t been that hard. Sure, I love me some pasta covered in cheese, but I can live without it and it doesn’t make me sad, but you better believe when my Mom makes an apple pie I’m eating it. And then I’m going to the gym. Also when it comes to eating “clean” meats, I have learned it’s not only that they are expensive but they are hard to find. If you can’t find it, or can’t afford it, its ok to buy meat from Kroger. Again the goal is to eat as clean as possible, whatever “possible” means for you.

Also it really works for me because it lets me eat when I want and as much as I want. Its not horrible to skip meals, and it doesn’t mean tiny portions. It means if I don’t eat lunch, fine, who cares. A lot of the food can be pre-made, and frozen, so all you have to do is thaw it and then stuff your face which works well for me. I pre-cook a lot of meals and then I don’t have to worry about “whats for dinner”.

Here is another info graphic with some more info:

The-Ultimate-Guide-to-Eating-Paleo

 

The power of playlists

Team Challenge update: I started running again this week. Thursday I did three miles and I thought I’d die. Seriously…I couldn’t breathe, and I couldn’t run and everything hurt and everything sucked. I just kept feeling like a giant failure. So this past Saturday was our last TC group training session. We were slated to run 8 miles but my trainer suggested that I limit it to just 6 because I’m still nursing the knee. And I was all “Oh really? Just 6 miles? Oh right considering the 3 that I ran just about killed me”. I had to wake up at 6:30 in order to get to training on time because its an hour away. The whole drive there I was just doubting myself. I felt like people would be judging me, and that I was totally just fooling myself. When I got there it was 32 degrees outside…and super windy.

Then it started snowing.

And I was all “I know, God. I got it, I SHOULDN’T RUN EVER”

I was getting dramatic, but the truth of the matter is that I was and am scared about the 1/2 which is now almost exactly a week away. Almost to the hour.

So I start walking..and the wind was blowing my face off and I was angry and freezing balls, so I start running so I don’t start to lose my limbs in what felt like the Arctic Tundra. And I ran. And ran. And ran…and I ran almost all of that 6 miles without stopping.

It was slow. But I did it, and it only hurt a little. And I felt good about it because I remembered how to breathe and how I like to run. I remembered my stride and I started to have fun again. I enjoyed running again on Saturday and a large part of that is due to the little hidden messages I put into my play list.

My running playlist only grows. I don’t take songs off, just add them. The current playlist is 30 songs long…and when it starts to repeat I’m not mad. So here is my current playlist and a few notes about why certain songs are important. Also, I shuffle it everytime so this is in no particular order.

 

Thunderstruck  – ACDC

Bad Romance – Lady Gaga

Ocean Avenue – Yellowcard

This Love – Maroon

Life Of A Salesman- Yellowcard

E.T.-  Katy Perry (This song often helps me find my pace. It seems to be the right BPM for me)

Comeback Kid – Sleigh Bells (Never fails that the iTunes gods always have this one play right when I need a second wave of energy)

Harder To Breathe – Maroon 5 (This song helps me remember to breathe. Always makes me smile too when I get all angry that I can’t breathe)

Fighter – Christina Aguilera (What woman doesn’t love this song? This song always makes me feel like I’m a total bad ass. You know in the beginning she says “After all you put me through, you’d think I’d despise you, but in the end I want to thank you because you made me that much stronger.” And this is always my little running pep talk to myself about IBD. The things I tell myself while running get totally absurd.

Independent –  Webbie Ft Lil Boosie (This song is a jam. ‘Nuff said)

Go Your Own Way – Fleetwood Mac (You guys know that I clearly love this song)

Way Away – Yellowcard 

Breathing – Yellowcard (See a trend here about reminding myself to breathe correctly)

Dance With Me – 112 (There is clapping in this song. I always clap with it. It makes me laugh and keeps me happy)

Twentythree – Yellowcard

Pressing On – Relient K (Never fails…when I get angry or I’m ready to give up, this song comes on. Almost always in the last few miles of my run.)

Believe – Yellowcard

Fixed At Zero – VersaEmerge – The verse of this song goes like this:

There’s a vulture on my shoulder
And he’s telling me to give in
Always hissing right in my ear
Like it’s coming from my own head
It’s got me mixed up
Trying not to give up
Tell me there’s a way to get out of here
Oh, fixed at zero!

I never really thought a lot about this song, until one day I was having the worst run ever. I kept telling myself how hard it was and how much I was not cut out to run long distances. This song came on in one of those moments…and it threw it right in my face that my biggest competition is myself. I am the only one who has told me that I can’t do this. This song is an attitude check.

Miles Apart – Yellowcard

Who I Am Hates Who I’ve Been – Relient K (This one just has a good message)

Let Me See Your Hips Swing-  Savage

TiK ToK – Ke$ha

to da window,to da wall –  Lil Jon

Wall To Wall-  Chris Brown

We No Speak Americano – Yolanda Be Cool & DCUP (Good song whenever you need a pickup or are feeling tired)

7 All I Do Is Win – DJ Khaled (ft. Ludacris, Snoop Dogg, Rick Ross & T-Pain) (All I do is win. Bam. Also…my hands always go up when that part of the song comes up. I’m a run dancer.)

Belly Dancer –  Akon

Dance In The Dark – Lady Gaga (My favorite Gaga song)

 

So a lot of the songs on there are just the right BPM for my pace. It took a while to find the right ones that weren’t too fast or too slow but this playlist works pretty well for me. I also did not put any of those songs on there (except Fighter) for any purpose other than I liked the songs. It was from listening to them over and over while running that it was some kind of fate that they found their way onto my playlist and always seem to play at the right time.

Are you going to Vegas with TC next week? If so I’m going to try to organize a big photo with all the internet friends I’ve made!

Thanks for always reading and supporting me.

 

 

9 Miles is far. 10 is further.

That post title is a real teaser eh?

Last weekend I ran 10 miles. The weekend before that I ran 9 miles. I want to talk about that weekend because that, my friends, sucked. Big ones.

9 Miles was the furthest I had run at that time, and I was scared going into it, but ready. I could feel myself starting to doubt my abilities, but I had a little mental pep talk and I felt like I was ready to go. It was pretty cold out that morning, and I wore all my fancy running clothes to keep me warm but I still felt like I’d need a jacket. So when I left, I had Under Amour, a running zippy by Lucy, and a fleece jacket. Too much? Yes, too much.

We were running a new path, and I was really enjoying it at that time, my stride was good, my pace was good and I felt awesome. I was rocking out to my music and mentally telling myself how awesome I was. I was like, “Hey self, you are kicking ass on the last 5 miles, you’re like already over half way there”.

And then my iPhone spoke  to me, and told me I had only ran 2 miles. Fuck.

I immediately felt like this was not going nearly as well as I thought it was. And it wasn’t. And it was going to get worse. After I had gotten to mile 3 or so, I started to get hot. Like super hot because I decided to dress like I was running in an Arctic tundra. I wanted to ditch my coat somewhere but I had my car keys in it, and this world is full of crazies so I didn’t want it to get stolen.

Mile 4 took forever to hit because the whole time I kept thinking 4.5 miles is only half. HALF! Our turn around point was at 4.5 miles and as I turned around, I just looked back and thought…I’m going to die. This is it. I’ll never make it back. If I had my phone, I would have phoned a friend and shamefully drove my ass back to my car. But I didn’t have my phone, and my only option to ending the misery at this time was to get to steppin’.

By this time my intervals were shot. I never knew if the beeping in my ear was to run or walk. My feet started to hurt. My hip flexors gave up. They were tired of working and instead of really running I was doing this sort of walk, leg thrust thingy. Where basically instead of putting your feet first you’re throwing your hips forward in hopes your legs will actually follow. It was painful and required a lot of thought. To make matters worse, walking was actually harder than running. My body was totally giving up on me, and I couldn’t even take solace in walking back..I had to jog because the walk was much harder.

At this point I realized attempting to hit any kind of time goal was lost. So when I did walk, I stopped to take some pictures of the beautiful Michigan Fall season happening around me. Honestly, I love Michigan in the Fall.

Then the scar tissue chimed in. I have never had my scar tissue hurt while running before but at mile 7…it was screaming at me. Excruciating pain in my lower left abdomen, not even at my former stoma site. It was horrible, every step was like a stabbing pain. At mile 7 I really wanted to give up. Honestly, more than I ever have before. I was done. Mentally and physically shot. Angry at myself for choosing to run this far. Angry that I had to carry my coat and that I even brought a coat. Angry that my interval training was still beeping in my ear and that my play list was repeating and that there were cars at intersections. EVERYTHING made me angry.

Every time I felt like I was close because I thought I recognized something, I remembered that my running app tells me my mileage, so clearly I was not close. Mile 8 hit and I was like ok, just a mile. But at that moment a mile had never been so far. I was walking with the grace of a zombie at that point. The anger had passed and now I was really hopeless. Sad my body couldn’t do it, and gave up. I got all full of tears as I started to realize, if I can’t hit 9 miles, I’ll never hot 13.1 in the race in Vegas for Team Challenge. I was defeated. I wanted so badly to just sit down, and cry it out, but I knew if I sat, getting up would suck and I still wouldn’t be back at my car.

Finally, the iPhone chimed in. 9 Miles! Yay workout completed. The problem? I wasn’t back at my car yet. The course was actually 9.5 miles…I still had .5 miles to hobble back to my car. And hobble I did. I got back there and just sat. Didn’t move. Still just second guessing the shit out of myself.

I got home and slept for 4 hours. My body trashed. Angry. Sore. Hurting. My ego crushed. I called my running pal Lauren, from Forward Is A Pace and lamented my awful running experience. I wanted to curse the day I signed up for TC, and myself for even thinking this diseased thing I tote around (my body) could handle 13.1 miles. I needed a pity party.

I was sore for about 5 days. Legit pain in my hips. A constant reminder of my failure at 9 miles.

And last weekend, I woke up and went to the same park…and I did it again but instead I did 10 miles. And you know what? It sucked. Everything happened almost exactly the same but the only difference is, I went further and it didn’t hurt as bad. I didn’t nap after. My body recovered much faster. I got frustrated and angry at some points, but I didn’t want to give up or cry. I wanted to get back to my car still standing.

I’ll say this about running, it doesn’t get any easier (at least not for me), but it doesn’t get harder either. I pretty much max out as hard as it will get, and stay there and then its just a mental battle of getting through the tough part.

Additionally, I did 10 miles without a bathroom stop. I checked bathrooms for 5 miles and all of them were locked, and while I would have preferred to have one as I would have probably couldn’t have stopped worrying about not having a bathroom, I didn’t need one. It’s not that I needed to go, but running makes you want to poop even with people who have healthy colons. So, I just wanted to have the security of a bathroom every few miles. But I didn’t. And it didn’t matter.

Thanks jpouch.

And on that note, here are some pictures I took while running the 9 miles. Pictures don’t do it justice.

 

 

 

 

 

 

 

 

 

 

 

My Ostomy Journey

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.

Pre-op surgery # 1. March 2010

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.

My belly post-op. I was embarrassed to really show my ostomy, so I hid it and didn’t really take pictures.
The one and only photo of my first stoma.

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.

I wore my “Lucky Lass” shirt to my pre op appointments. I knew I needed some extra luck.

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.

My third stoma. My prednisone scarred stomach. Horrible JP drain.

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.

My last picture with my ostomy.
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.

Former ostomy site.
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.

Why I DO fundraise

In February I did this post about why I don’t fundraise. Well as many of you might have noticed….I am fundraising for Team Challenge.

So, what gives?

Well, I still feel exactly the same way I did when I made that video and posted that blog. I think many fundraising events are boring and uninspired. Ask people to raise a bunch of money, walk a few miles and chat with their friends. Meh. Put all that money towards “research”, whatever the hell that means. Find a “cure”, and whatever other bullshit there is.

Now don’t get me wrong. It is important that people do these events because someone somewhere is actually doing research. So you know, good on you guys for that.

But it’s just not my thing. Also…again. I have boat loads of diseased friends. I couldn’t possibly financially support ALL of their walks, golf events, runs…etc.

So Jackie, why the hell are you doing Team Challenge?

I started running and all of my runner IBD friends have done Team Challenge and told me how amazing and life altering it is. And when I made that video I was still like..uh…fuck that.

Then I ran some more and then I learned more about Team Challenge. I like the money structure of TC because literally 75% of the money raised goes to research and more importantly camp. Camp is what struck the chord. 2 Years ago we had to cut back the number of kids we brought to the MI camp because of a lack of funding and that broke my heart. So when I started to run, and kinda liked it, and then realized I could raise money for camp, I was like….whelp…I guess I’m doing it.

Also, for me, this is about me too. I’m not just walking a few miles and chatting with friends. I have to push myself. I have to work. I have to want it or else it wont happen. Its about how far my body has come in the last few years from death bed to potential 1/2 marathon.

So it is mildly selfish because I want to do Team Challenge for ME. But at the same time, the cause means so much to me. It was like serendipity that it all came into my life right now. I met my great “crazy ass gazelle” friends, as Charis calls them. I made that fundraising video. Then all of us met up in Chicago and at that time they were all training for a different Team Challenge event and I kept making jokes about getting donuts while they would be out running.

And now. I’m one of them. I’m a crazy ass gazelle. Team Challenge gives me the opportunity to raise money for a cause that changed my life. It gives me a reason to continue running and to do it further and harder than I ever have. And in the end, it also gives me an experience. It brings me together with my old friends and new friends and lets us share something that is really special.

That is why I am fundraising for Team Challenge.

And by the way…I am at 48% of my goal already! Which is sort of amazing.

If you’re a Team Challenge participant I am making/selling these bracelets to help me raise money.

I am also making ones that say “I run for _____” and insert your person/place/thing on the line 🙂

If you’re interested in buying one, please donate and make a note, or just email me. Thanks guys!

 

Great day. That is all.

It is 9:00pm on a Saturday night of a holiday weekend and I’m home blogging. Why? Mostly because I miss you guys. I feel like BPT has become my neglected little step child in the last few weeks. I haven’t had enough time to put anything worth reading out there, and let me tell you….the numbers show. 😦

So since I don’t have anything really insightful today, I wanted to tell you guys about my day. It was a pretty solid day. I did a lot of fun stuff but honestly my jpouch was a rockstar. I freaking love that thing.

Part of the TC Michigan team

Today was my first day of training with my Team Challenge team. We did a 4 mile run which is longer than I usually go just for my “fun runs” when I do them. I had a hard time getting in the groove and a frankly I didn’t actually want to run today. I woke up at 6:30am to drive an hour to go run with people I didn’t know. Early this morning, that sounded like an awful idea. But I got up, packed up all my crap and road my motorcycle to training. It was a nice, quiet ride with minimal traffic and I was pretty calmed down when I got there. We got there, and did the run which I didn’t do very well. It just wasn’t an “on” day for me. But I did it, and like always, I was happy I did it when it was over.

Lake St. Clair in Michigan. Be jealous.

So I left training, hopped on my bike and road another 20 minutes to the east side of Michigan and went out on the lake for a few hours. I ate a piece of pizza before we got on the boat and never even thought about how or when that would need to come out. Headed out there, hung out, met some friends, had a couple drinks and before I knew it, it was time to head back in. Still didn’t have to use the bathroom! So after we got back to the house, I finally went.

Ponchos. Om nom nom nom.
But then I dove straight to the best Mexican food on the planet. Oh.em.gee. you guys. Delicious. And the mexican came out a little sooner than the pizza did, but it was totally reasonable. Then…I swapped motorcycles with a friend and headed an hour back home. Again…no pouch problems.

So today…I rode my bike for about 2.5 hours. I ran 4 miles. I spent 5 hours out on the lake. I drank alcohol. I ate pizza and mexican. And most importantly, I used the bathroom a few times, when I wanted to.

Disclaimer: I swear I don’t normally eat shitty food and drink all in the same day. 🙂

It was a good day. Thanks jpouch.

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