Dear Future Suitor

Whelp…I’m dating again and because I can’t keep my mouth shut about my butt, I know I’m getting some new hits to this site from potential mates. I’ve talked a lot about dating in some previous posts on Health Central. One about relationship essentials for IBDers, another about dating tips. I figure I’m no ace when is comes to dating so I wanted to reach out to my new visitors with a letter.

Dear Future Suitor,

Welcome to my blog. Congrats on the successful Google search of my name. There are a few things that you should know about dating me. Chances are this would probably be an uncomfortable conversation so lets just skip to the part where I give you information and you choose whether or not you want to talk to me again.

1. I like lists.

2. I talk about my butt…a lot.

3. I talk about poop… a lot a lot.

4. There may be times when I choose food or booze. Sometimes my stomach just can’t handle both.

5. I will probably end up in the ER during the course of our relationship if we seriously date. Its just something that happens periodically.

6. For as open as I am about my butt disease, I am very private when it comes to bathroom usage. I will go to the basement, upstairs, or where ever the furthest bathroom is when I have to use it. Please leave me alone when I’m bathrooming. Sometimes I’ll be in there a while, I’m not dying, don’t check on me.

7. I don’t have a colon. That means that sometimes I’m a rockstar boozer and other times I’m a total lightweight. Please be prepared for both. Also be prepared for when I choose not to drink at all because I’m not feeling well.

8. Following #7 I have to be honest. Sometimes during my sleep, I will shit the bed. Now it doesn’t happen a lot and I do everything I can to prevent it but it has happened. This is a terrifying thing that I have to live with. There is nothing more mortifying in your adult life, so if you happen to be sleeping next to me please have a heart. In the same token, if this is something you think you can’t handle (and I don’t blame you), please stop seeing me before we get to the point that we’re sharing a bed.

9. I have IBD and Multiple Sclerosis. Both are a big deal. If it hasn’t scared you off, please do a quick google search and learn a little about both. If that also didn’t scare you off, please be open with me about what you would like to know.

10. I have put my whole life on the internet. This blog and others chronicle my journey into and out of sickness and all the dark paths that I took along the way. If you choose to read it, you will get great insight into my life in a very personal way. It gives you an unfair advantage.

11. I know I put on a really carefree exterior about all of this shit, but sometimes it really starts to weigh on me. I may get overwhelmed and cry about it.

Hopefully you’re cool with all of this. If not, that’s a bummer but my bionic ass is non-negotiable. If you can handle the crazy health disaster that is my life, sweet. Chances are you’ve got my number. Ball is in your court.

 

-Jackie

 

 

 

 

ROLLER DERBY!! Hi, I’m fresh meat!

1798595_720999744590854_1576536325_nSo 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.

Can I skate? Yea, kinda.

Can I skate well? Nope.

Do I know anything about Roller Derby? Just that its fun to watch and it looks like it hurts.

Turns out skating when you’re 12 is way different than trying to skate as an adult. I have so much to say about roller derby now that I’ve been training and know a lot more about the sport, but maybe I’ll post about that another day. What I want to talk about now is fatigue and how it correlates to my new hobby.

You guys I’m tired. Like really tired. I went and had my blood work done and of course, it all came back normal. Which is great except that it doesn’t help figure out why I feel this way. I literally go to bed between 8-9pm and sleep the whole night. I’m having a hard time staying awake during the day as it is, now adding derby on to it has made me really nervous. Its got me really asking, “Can I do this?” Like, really.

After practice on Sunday I went home and slept for almost 4 hours. By the time I woke up it was 5pm and I felt like I lost my whole day and it still didn’t stop me from going to bed at 8:30. I’m really hoping that there are just new demands on my body that are making me this tired. I’ve been skating between 2-4 times a week for the last month many of which are late at night. Well, late for me. For “normies” I know generally its a matter of bodies adjusting to more demanding lifestyles that can make them tired and fatigued. But I’m starting to wonder, “Is this my life?” Will I always be this tired? Will I always have a bigger demand for energy than I produce? Which all leads me back to, can I do this? I really don’t know at this point and I may not know for a few weeks or months. But I’m sure as hell going to try. For the first time in a long time, I am excited about something new. A new place to make friends, and friends that aren’t sick. I don’t have to be “sick” when I’m there and the people there don’t know I’m sick. Well, thats because we haven’t had a chance to talk, although I did wear a GWG shirt to practice on Sunday. Derby is refreshing. Its mentally and physically stimulating and it makes me want to challenge myself and to grow into a better skater. Its giving me goals. I want it so bad you guys, and the idea of simply not being able to do it is really scary.

Everyone always says that you shouldn’t say “can’t”, but what if I really can’t do this. How devastating. So here’s to hoping I’m just in an adjustment period.

Do you have any inspiration for me? Was there anything you thought you couldn’t do and instead surprised yourself?

 

Hiking Big Bend National Park, New Years 2013

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blogHey 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. I hiked 30 miles in 3 days and only had to shit outside once, which was a real fear of mine.  In order to prep for our day long hikes, I would start my day with 2 Imodium and something to thicken the stool like a banana. I wanted to start the mornings out as thick as possible as A) I don’t like to shit outside as I am not a bear, and B) because I never knew when we were going to find a regular bathroom. Now venturing into the desert with a jpouch had me so pumped and so nervous, but I got to tell you, it wasn’t so bad. In fact it wasn’t really bad at all. I made sure that the food we packed for before, during, and after the hikes were all jpouch friendly. I made sure not to introduce anything new into the mix, and not to eat anything that would be questionable.

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I made sure that my hiking partner was well aware of my food restrictions and limitations so that there weren’t any surprises or potential for disappointment. Luckily my hiking buddy knew all about my butt and the issues that it brings so this was easy to avoid. In fact I spend a fair amount of time before the trip playing the “what if” game, because I was really nervous that something would come up, or go wrong and my body wouldn’t be able to make the hike happen. I just wanted to make sure we were on the same page.

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Water was a big concern as we were hiking in desert and water supplies are scarce out on the trails. So I bought a hydration back pack that held 3 liters of water, which was heavy but necessary. I also bought hydration salts from REI in case of dehydration but luckily I didn’t have to use those. The temperature was perfect. Sunny and 65 during the day, but at night it was so cold! We were tent camping in 20 degree temperatures so I made sure to wear lots of layers. 2 nights we camped were at a camp ground so there were toilets available and close but fortunately I didn’t have to use them during the night. However, the third night we camped was at a remote primitive site with no bathrooms. When I was told this I kinda of had a mini mental breakdown about all the “what ifs” because as if shitting outside isn’t bad enough, shitting outside in the dark would be much much worse. I can only imagine. So before we posted up for camp that night we stopped at a ranger station to use the bathroom and again fortunately I didn’t have to use it during that night. Probably due to all the thick foods I had eaten during the day.

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Big Bend has a natural hot spring that runs right along the Rio Grande! The water there runs to about 105 degrees! It was a nice rest after our long day hiking and to help heal the cuts from everything that has thorns. And in Texas EVERYTHING has thorns.

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Over all the trip was pretty amazing. I had never been hiking before so I panicked a lot before we left but in reality just about everything was fine. I think my OCD about planning helped and also made anticipating what my body would need a lot easier. Doing a hike like this was no joke. It was long, difficult at times, and strenuous on the body. It proved to me that I’m crazy out of shape and that its time to get my big ol’ diseased ass back into the gym. But more importantly what it really proved to me was that I could do it. So far, every physical feat that I have set for myself I’ve been able to accomplish which feels pretty damn good.

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Guest Post: I have a fistula

So as an IBDer we deal with a lot of shit, literally. But there is no feeling worse than dealing with shit that comes from somewhere it’s NOT SUPPOSED TO, which is what a fistula is. A fistula is an abnormal opening that connects two organs, causing drainage and air and pus and god knows what else to come through whenever it wants. I have a recto-vaginal fistula. So you can only imagine how THAT feels. Having a fistula is not only gross when it’s at it’s worse, but can also be painful, depressing confidence crushing. I know that for myself, personally, it leaves me feeling almost less-than-human. I’ve had 3 fistulas since my diagnosis of ulcerative colitis (which is now Crohn’s) in 2004 and I’ve tried every procedure and medicine out there for the damn things. I’ve had seton drains, vaginal mesh, Graciloplasty surgery, fistula plugs, the advancement flap repair, have been on Imuran, Remicade and am now on Humira to try and keep these damn things at bay.

Granted, since I started Humira my fistula has remained calm and even closed a majority of the way. But, after having a plug surgery last week to get the thing to ‘fully’ close I am having more drainage than I had BEFORE the surgery and am back to feeling pretty low. With this disease we go through highs and lows, what ifs and ‘should we?’ and constantly question our next move. I have a hard time planning ahead because I don’t know if I’ll still be able to do said activity once the day actually comes, and with a constant draining fistula, it makes these decisions even harder. The fistula affects any regular activity: standing, walking, sitting…etc. If I do any of these things too long I can expect to suffer the draining, burning consequences.  Not to mention sex. Sex is a whole other subject.  I’ve kept my fistula issues a secret throughout most of my relationships but as I’ve gotten older I’ve juggled with how to let my significant other know what is going on, with as little detail as possible. Regardless of my constant struggle with fistulas I have managed to: graduate from college, hold a full time and extremely demanding job at an ad agency, run in a 5k, travel to various cities and states, and workout. Basically what I’m saying is there are times when dealing with fistulas is rough, sad, frustrating, gross and painful. But I’ve realized that life continues to go on and it’s all about learning how to deal with it one day at a time.  Ok, brb, got some shit to tend to.

A month of uncomfortable.

I’ve been going to therapy lately, and my therapist gave me a task for the next month. Be uncomfortable.

I’m uncomfortable with the idea of being uncomfortable. When she said it, my skin started to crawl, and I was all “yea, I don’t think that’s gonna be a thing”.

However, here’s her logic (which is actually pretty good). I am a control freak, but I lead a life where I don’t get to control a lot of things about my life, like if/when I get sick. So since I feel so out of control about my body, I control everything else that I can. I tend to obsess over things, things that went wrong, or went right. Things from that past that I wish I could change, and my own behaviors that I don’t understand. I process and analyze and process and analyze and drive myself crazy. I don’t like being out of control of myself and part of how I do that, is by not putting myself in uncomfortable situations. By not looking stupid. By not trying new things. By repeating safe behaviors because they are familiar. I am not a risk taker, I mean, I do dumb shit but I’ll plan out my dumb shit.

So my therapist said, in order to keep moving through this stage in my life where everything sucks, I need to get uncomfortable and break out of habits and patterns. Even good patterns. I need to change-up my life. So she gave me a task of being uncomfortable for the next month. And in reality, it will probably be longer than a month. But she encouraged me to go to things alone, try new activities, and generally just do things that are way out of my comfort zone in an effort to connect with myself. To hopefully stop torturing myself with all my processing and analyzing and perhaps even learn a thing or two.

The question now, is what do I do?

There is a yoga class for people with MS that I think I’m going to go to. I have done yoga once…and hated it. I’ll know no one, and can’t bring a friend.

There randomly is a Buddhist monastery by my house that teaches meditation on Saturday mornings. I can’t think of a place that I belong less than there, so I might try that.

And then the panic sets in. Where do I park? What if I walk in the wrong door? What if I ask a dumb question? What if monks don’t talk and just use hand symbols and I don’t know the hand symbols? What if I think too much about not thinking and I can’t actually meditate? And this is why I don’t ever do new things.

My goal is to do a bunch of uncomfortable shit in the next month. What are you uncomfortable with? Any ideas for me?

 

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