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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.

 

 

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.

Insert innuendo about being dirty here

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.

Still talking about running…

Last night I did not have a good run. Rewind.

Last night I stopped over at my Grandparents house for a quick visit and I was like “Hey Grandpa, did you hear I ran a 1oK?” My Grandpa is in crazy good shape for being such an old dude. Hes in his 80’s and walks everywhere, eats right, and shovels my snow in the winter. He could give any 25 yr old a run for their money, I swear.

This is the same Grandpa who when I was younger, would comment on my weight and what I was eating… So when I prompted him with the 10K I totally thought he would be all “Yea I did. You’re so amazing, favorite granddaughter of mine”. Instead, he said “I was surprised your body could do it”.

Hmm.

So without pushing the topic anymore, I wondered, did he say that as a compliment, or an underhanded comment. I’m not sure. I decided to go with compliment.

Anyway, so I went for a run last night because I had the itch to go. That “I want to/need to run” feeling is new for me, and its kinda cool. It feels like its going to set you up for awesomeness. I was wrong.

Last night at 8:30 it was 88 degrees. I wanted to try to do about 4.5K which is what I did in similar conditions the other day. Well I screwed myself because I started out too fast. I was trying to measure/time something and I screwed myself up. So then I was frustrated and stopped to stretch a bit. Then I got cornered in a conversation about epilepsy and diet by some strange guy on the sidewalk. Well it was more of him talking at me, than a conversation.

So anyway I was frustration and kept going. I couldn’t find my pace. It was hot.

After what felt like a good distance, I turned on the home stretch to get home…and finally found my pace. Damn it. Instead of pushing it, I ran until I got home and just stopped. Once I found that pace, it felt good, but I knew if I lost it again I would have just gotten frustrated. To make it worse, when I got home, I realized I had only really run just over 2 miles. So I was disappointed.

Then I thought about what my Grandpa said. My body has been to hell and back. It was hot as hell outside. And I still ran 2 miles. Not to mention that MS is SERIOUSLY affected by the heat. There are organizations that give out cooling vests to MS patients because our brains just short out in the heat basically. I do this sometimes. If I’m out in the sun all day I just get to the point where I can really think straight or make decisions about anything. I also get crazy tired. When I first started working out, my body temperature was a serious problem, because it would get so high that I couldn’t really perform tasks correctly. So yea heat and MS = a problem.

It is almost as if the universe is working against me and my fitness goals. But you know what? Eff the universe. I’m gonna run a 1/2 marathon in December. At least that’s what I’m going to plan for. Diseased body or not, I’m going to try to do that. And you know what? I think I’m going to succeed.

So you know what Grandpa? I’m surprised my body can do this too. But it can. And so I will.

And on that note, Kayla here is my current playlist. I didn’t put the songs in this specific order for any reason, its just how they got added.

Bad Romance – Lady Gaga
Ocean Avenue – Yellow Card
Harder To breathe – Maroon 5
This Love – Maroon 5
Life of a Sales man – Yellow Card
ET – Kay Perry/Kanye
Comeback Kid – Sleigh Bells
Fighter – Christina Aguilera
Independent – Lil Boosie
Bulls on Parade – Rage Against the Machine
Go your own way – Fleetwood Mac
Way Away – Yellow Card
Breathing – Yellow Card
Dance With Me – 112
TwentyThree- Yellow Card
Pressing on- Reliant K
Fixed At Zero – Versamerge
Miles Apart – Yellow Card
Who I am hates who I’ve been – Reliant K
Let me see your hips swing – Savage

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 I think about Jack Osbourne's MS diagnosis

I’ve recently had a lot of people ask me what I think about Jack Osbourne getting diagnosed with MS. So here’s where I show you guys what a jerk I really am.

I’m glad that he got MS. Ok wait. Rewind. I’m not happy Jack Osbourne got MS. I honestly don’t wish MS or IBD or any other disease one anyone. Except Hitler. I wish an ass disease on him, for sure.

Anyway, what I’m saying is that I wish more celebrities had diseases like MS or IBD. I am inclined to think that statistically more of them have these things and just don’t disclose it to the public, which is their right, but frankly its not helping anyone else out.

I wish that more high profile people were public about diseases because thats where REAL awareness comes from. Those of us in these communities raise awareness all over on smaller scales. Runs/walks/local newspapers/ect. But when a high profile celebrity gets some kind of disease it makes global news. Jack’s MS was trending on twitter. And its not just the regular news, its entertainment news. This is the kind of thing that really does reach the masses. Jack’s diagnosis was everywhere from The Today Show to OK magazine and every blogger in between. Every time one of our causes can get press like that, it is a good thing.

And heres the real kicker. When famous people have diseases, it becomes important to them. What happens with things that are important to famous people? They raise money for it. Think Michael J. Fox. Seriously, how many people knew about Parkinson’s before him? More importantly, how much money has Marty McFly raised for Parkinsons? A TON. Celebrities have fundraising magical powers that the rest of us can’t even fathom.

So its wrong to wish diseases on people. But is it so wrong to wish that a few less of us “regular” people got them and a few more “people in high places” got them? Unfortunatly in a time where our society is fascinated by celebrities, they are the ones who are capable of real change. Once something gets on the celebrity radar, awesome things can happen. Look at Casey what’s his face from American Idol. I don’t watch that show, but he got famous there, and now look at the awesome things hes trying to do for Crohn’s? Look how many more people are learning about IBD because of him? Hell, I know who he is and he has IBD. Awareness is working. Its all about how far your reach goes and as “regular” people our reach only goes so far.

I will say that I think its brave and a little inspiring when celebrities are open about their medical conditions. I wish that those who were in hiding would realize how many people they could help by just telling their own stories.

 

As a side note: I saw some comment about Jack where someone said that he probably got MS from all of his drug use. I wanted to reach through my computer and rip that persons face off bath salt style. THIS is exactly the kind of ignorance we’re all working to prevent. THIS is why when famous people get a disease, it is an opportunity to teach the masses. I wish I could call Jack up on the phone and tell him everything I learned through my MS diagnosis. I think that my MS diagnosis was a lot scarier than IBD because that disease is 100% different person to person. Symptoms aren’t even the same, disease progression is unpredictable, and the possibility of complete disability is there and its a crap shoot if you”ll get hit with it or not. But what no one told me when I was first diagnosed is that there are people like me out there. Knock on wood. People who have little to no problems with MS. People whos life gets disrupted but not sent off course and who are still happy and mostly healthy even almost 6 years post diagnosis. Again…thats the kind of thing I want the world to know. Maybe Jack’s MS will be like mine, and now he can be a voice of hope for others who are newly diagnosed.

 

Update: Casey what’s his face has colitis, not Crohn’s. My bad, I should have known that because I have UC to. Keep workin on that awareness buddy. Not quite there yet!

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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