So long twenties, and thanks for all the crap

I have some major reflecting to do. This is probably going to be wordy so I apologize in advance. Wait…no. No I don’t apologize because as I reflect on the last 10 years of my life…there is a lot to say.

In a week I turn 30. The big 3-0. Over the hill. End of the world. Blah blah blah. I feel like 30 is supposed to be this big life altering right of passage and I, a woman, am supposed to fret about it as it means the death of my youth and the birth of a frumpy ass.  So much time is spend fretting about hitting 30 and everyone expects you to be sad about it. While I have to admit that I’m not thrilled about getting older in general, because physically, I think I’m still mid-twenties and mentally I’m about 12.  However, I am by no means dreading entering into a new decade. Lets just take a quick minute to rehash my twenties so you can get the full picture.

My pal Brian and I wine tasting in Vienna

My pal Brian and I wine tasting in Vienna

  • 20 –  I studied abroad in Austria
  • 21- Spent my birthday alone because shortly before my birthday my long-term boyfriend and I broke up. Received a diagnosis of Multiple Sclerosis
  • 22 – Got back together with said boyfriend….then he cheated on me due to limitations of my MS
  • 23 – Bought a house! Got a new boyfriend! Started a career! 23 was greeeaaatttt.
  • 24 – 24 was uneventful. It was the calm before the storm
  • 25 – Ulcerative Colitis diagnosis. Heart surgery. Boyfriend turns into a douche.
  • 26 – Surgery 2. Surgery 3. Goodbye Colon. Hello Ostomy. Good bye job. I got fired. Hello depression.
  • 27 – Surgery 4. Surgery 5. Surgery 6. Hello J-pouch. Boyfriend is still a douche. Started grad school because what the fuck else was I doing. Also…depression.
  • 28 – Broke up with douche nozzle boyfriend. Graduated Grad school. Started big girl job.
  • 29 – Not dying anymore. Happy at my job. Met a unicorn.

 

Hospital Selfies because what else are you supposed to do

Hospital Selfies because what else are you supposed to do

So on paper, none of that looks particularly horrible, but I assure you 22 through late 28 sucked balls. In fact, I devoted this entire blog to chronicle just how many balls it sucked and I didn’t even start this sucker until I was 25. You, dear reader, missed out on 3 full years of absolute suckage. So the point of all of that, was really just to say that while all of my peers and counterparts were out there getting wasted, banging randoms, and making awesome mistakes, I was trying to stay alive.  Barf, that sounds so dramatic even if its true.  While everyone else was getting promotions…I was getting “promoted” out of the ICU into a regular hospital bed where I was allowed to pee without a nurse watching over me. Exciting stuff here. But this is where I end my pity party for my twenties.

I ran a lot

I ran a lot

It seems only appropriate that in order to commemorate the death of my twenties that I must also shed light on the cool shit that happened. I shall write a list.

  • I didn’t marry anyone who turned out to suck
  • I got my bachelors and masters degrees
  • People wanted to employ me
  • I bought, maintained (kinda), and managed to not lose my own house
  • I went to Camp Oasis like 5 times and it changed everything about me in the most beautiful way possible
  • I networked like a mother fucker and made friends upon friends upon friends who totally get me
  • I ran a half marathon
  • I traveled a lot – saw most of Europe and a decent amount of America and lived in a foreign country
  • I became really close with my family
  • I was in a docu-series about awesome millennials in the US
  • I’ve spoken at a conference and in front of other large groups of people about living with IBD/a Jpouch/MS/Ect.
  • I play mother fucking roller derby
  • and…I’m creating an empire. Yes. That’s what I’m going to call it. I believe that Girls With Guts will be my empire and we will take over the IBD world one patient at a time and we will change things. We have changed things. Girls With Guts is possibly the single most important thing that I have ever done with my life and maybe that I will ever do.

GWG_logo_letters

 

So even though I can look back on my twenties and see a giant barrel of suck….there are still a lot of really awesome things that happened. So that is why I’m, dare I even say it, excited about my thirties. My theory is that my thirties  are going to be just like my twenties except with less hospitals and more money. I was broke in my twenties…like…legit broke. Medical debt, no job, just above poverty level when I did have a job, etc. etc. But my thirties? I’m rooting for a decade of zero medical debt, being gainfully employed and doing really cool shit.  Now this doesn’t mean I’m going to throw caution to the wind and get all bat shit crazy and do dumb things and pretend I’m 20 again. Nay, I was not crazy then, I will not be crazy now. I cannot and will not forget that I WAS (am) very sick for years and that experience changed me as a person mentally and very much so physically. If I’m honest, the reality is my thirties probably will have a fair amount of sickness in them. While IBD *might* be behind me (Get it? Behind me.) It doesn’t mean that my thirties won’t be the decade of MS being a dick.  Who the hell knows.  All I know that things change, illnesses can in fact change and priorities change.  I wrote this 30 before 30 list in 2010 and I’ve accomplished like 5 things on it but when I looked at the stuff that I did accomplish before 30, I’m not mad. There were so many things that came out of my twenties that I couldn’t have even fathomed to put on a list.

So while my wrinkles may start to deepen, and maybe even my ass will start to frump…who the hell cares. Not only are my twenties now behind me, and I actually fucking survived them, but the things that happened during that whole decade made me into someone I think is pretty dang cool.  Life is hard sometimes and I am by no means the paradigm of how to handle crisis, but I did my best, I learned a lot and I feel as though I’m ready to take on the next 10 years with grace. Come on, who am I kidding. I’ve never done anything with grace. Instead, I’ll take it on with sass and power words but with a significantly better attitude than my younger years and a shit ton more confidence than I ever had as a twenty something.

 

Just a couple of derby girls in training.

Just a couple of derby girls in training.

 

Also…for fun, I polled my friends about cool things I’ve done since they’ve known me. Sometimes your friends say the best things.

  • rescued dogs
  • bought a house before any of my other friends
  • you also rode tons of roller coasters
  • tattoos
  • you get cool haircuts
  • you introduced the team to the Human Centipede
  • pooped in your boyfriend’s bed and had the courage to tell the world about it
  • Actually played mouse trap the way it was intended
  • You worked your ass off and you keep pursuing fitness. That’s a big deal!
  • You got me through a 5k

Wayward Nation

Last summer, I had the pleasure of filming for a short web docu-series. This was easily one of the coolest experiences of my life.  Take 15 minutes out of your life and check out the episode featuring Girls With Guts and myself.

I shit someone else’s bed

Well the title just about says it all, doesn’t it?

Ugh. You guys. I’ve recently started seeing someone new. Someone who I really care about who is so great in so many ways and I just want to gush and gush and throw out smiley emoticons because that’s how I feel. So life is great, right?

No.

Last night I totally shit his bed. This is something that rarely, if ever, happens to me– maybe twice this whole year but it happened last night.  While I was sleeping next to someone else. While we were sleeping in a bed that is not my own. Cue dramatic death due to embarrassment. If you have a j-pouch, you know the feeling of “fuck, I just shit the bed”, but this is like a whole new level. This is, “fuck I just shit the bed, panic in the bathroom for about 15 minutes, create a plan, change the plan, panic again, get a new game plan, go wake up someone you like and inform them that you have just shit in their ridiculously comfortable bed.”  Their new bed might I add.

So I did it. I woke him up, and asked him to go sleep on the couch while I cleaned the sheets up and scrubbed the mattress. For an hour or so, I just kept scrubbing it hoping that while I cleaned the mattress I could also clean my conscious and perhaps scrub away my shame as well.

It was about 3:30am when this happened so after I figured my scrubbing wasn’t actually doing any good, I decided to try to go back to sleep. I grabbed towel and laid it on the bed because what is more fun that shitting bed? Shitting the bed twice. However, the Gods smiled down on me and didn’t let me humiliate myself twice in the same night, and instead just let me sit there and cry to myself about how awful it felt to be me in that moment. I cried until my alarm went off at 6am reminding me that I had to confront this situation again.

I didn’t know what to do. What to say. How to act. So I just shut down, retracted and basically avoided him while I got ready for work until I couldn’t hold it in anymore and just burst out into tears. I cried and he did exactly what you’d want someone to do. He hugged me. He kissed me. He told me wonderful things. He handled it exactly the way that you’d hope someone would. But it didn’t make it any less humiliating.

Right now…this is my life. In that moment every bit of confidence I’ve worked to have and possess seemed to slip away and all I felt were the insecurities that this whole situation forced upon me. Now don’t get me wrong, he is amazing. I couldn’t have asked for someone to handle it better, but it almost doesn’t matter at all how he reacted because it has become this incredibly overwhelming internal battle that I never want to have. ever. again.  And then I started to feel angry, and I hate being angry about IBD things. I work so hard to never be angry about things I can’t help, but this made me so angry, and maybe the anger was there to mask the overwhelming shame that I feel, but I left feeling defeated. I just can’t even…

Am I being perhaps a bit dramatic? Maybe? Does it feel any less mortifying? No. I mean there are very few things that leave you feeling this vulnerable; shitting someone else’s bed will definitely put you in the uber vulnerable category. You can’t help but feel like you’re at the other person’s mercy. Like if they never want to talk to you again…that would be understandable. If they are understanding but still freaked out….understandable. If they are completely accepting and it doesn’t phase them at all…then they are a person to be cherished.

I’m sure I’ll get over this but right now I just feel so much anger and shame. I want to crawl into a hole and die.  Why couldn’t I have shit the bed of my shitty ex-boyfriend? He deserved that.  But no, I had to lose control over my flippin’ bowel while sleeping next to someone who barely knows me. Someone I want to impress, someone I would like to be attracted to me. Someone who has now officially seen me in one of my darkest places.  I get angry about this when it happens to me when I’m alone in my own bed, I just never fathomed what it would feel like with someone else. Granted, I did tell him this could happen. I said it purely as a proactive approach to something I never dreamed I’d have to actually deal with.

I don’t really know what else to say. This post is all over the place and its not funny because I have yet to see the humor in it at this point. I just needed to share with you guys.

A big thank you to my very good friend Katherine who helped me vocalize some of what I felt today.

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?

 

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