Crohn’s + Insomnia = Crohmnia

Crohnically Ill

It hit me, one crohmnia laden night, that there has to be a way to get the message out there to people what living with Crohn’s is like. It seems like every illness out there starts the message off the same way- drama, grief, and a sad, sad tale. Yeah, that’s the truth, but is that what gets people’s attention? The ALS ice-bucket challenge certainly used a hilarious tactic to get the word out, so why can’t we Crohnies do the same?

Introducing my post crohmnia stint YouTube film: https://www.youtube.com/watch?v=dnhfO52g5LA

The quality needs work; I’m well aware. I have new tricks to learn, more webisodes to hash out, and more embarrassing territory to explore, but I’m suddenly determined to do it. Will it get the word out? Maybe. I hope so. Either way, my kids and I are having a blast sketching out new scenes (we have an idea jar), and these are memories worth making with them, whatever may happen with The Crohmniac. So, for now, enjoy, and hopefully this will become a weekly thing, with better video quality and tighter jokes. The occasional serious vlog may creep in, especially on my down weeks. Regardless, I love telling stories, and I never realized how much I love a camera, especially all the editing tricks available. This wannabe geek has a lot to learn! So stay tuned, subscribe if you like, and I hope you enjoy!

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Love the Ostomy Bag, CDC

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“Get over being squeamish,” says Julia in the CDC’s latest anti-tobacco campaign.

Funny, the CDC certainly isn’t squeamish about stigmatizing all ostomates in their efforts to convince smokers to quit.

http://www.cdc.gov/tobacco/campaign/tips/stories/julia.html

Much like the other anti-tobacco ads, this one paints a stinky, disgusting picture of one of the many ramifications of smoking- developing colon cancer and having to live with an ostomy bag.

Unfortunately for the CDC, far too many people who live with ostomy bags never smoked a day in their lives. And too many more SHOULD be getting bags to treat their non-smoking related conditions but either refuse to, put it off, or would “rather die” thanks to an already existing negative stigma now worsened by the CDC.

Do I smoke? No. I find it disgusting, and I sometimes have little mini inner fits when I see people light up, because they have their health and are CHOOSING to throw it away. I’m 28 years old, have had 3 surgeries, been on countless medications, live the majority of my days in pain, and I would LOVE to have my health, but I don’t, through no fault of my own. I listen to my doctor; I take my medications as prescribed; I follow a low residue diet religiously as it’s the best for my condition right now, yet no matter what, I’m still suffering, because this disease is a tricky bastard.

People who smoke take what they have and throw it away, one puff at a time. But that is their choice to make, not mine. They are free to make their own decisions. The CDC wants to make their decision to light up a less lucrative one, but at the expense of stigmatizing those living with ostomies.

Am I gross? Did you know I had an ostomy? I take care of myself, yet I had to empty my bowel contents multiple times a day. No, I’m definitely not squeamish, but seeing myself and my fellow IBD friends stigmatized for the sake of convincing those who smoke to stop is more disgusting than my bowel contents chilling in a bag.

The average age of diagnosis of Crohn’s Disease is 12-25. A young person, on the brink of the most exciting years of their life, is now sick, and often times faced with either the choice of an ostomy or being forced to live with an ostomy (via emergency surgery). As a young person, the thought of having an ostomy is terrifying, but the problem is it shouldn’t be. The bag is not only life saving, but improves your quality of life. I used to be terrified of it, until I woke up with one. Yes, it’s gone now, but if I’m presented with the choice of living a painful life without a bag versus a less painful one with, I’m opting for the bag. If I wake up from another emergency surgery sporting a stoma, I’m going to name it this time. I want other young people out there to not hold a fear of ostomies, especially if one may be in their future. I want those living with them to be seen as fighters, not scum of the earth. I want this campaign removed, because it has set back all the hard work of advocacy those people living with ostomies have tried to obtain.

The #GetYourBellyOut campaign going on in the UK embraces bellies of all kinds- scarred, bags, no bags, bloated, thin (from malnourishment thanks to our disease), healthy (because yay! remission!), etc., and this campaign was a giant leap forward in not only getting the public to accept ostomies, but those living with them to accept it themselves.

No, don’t smoke. But don’t vilify those with ostomies to get your point across.

To sign the petition, click here:

https://www.change.org/p/centers-for-disease-control-and-prevention-remove-tobacco-colon-cancer-advertisement?recruiter=39512192&utm_source=share_petition&utm_medium=facebook&utm_campaign=autopublish&utm_term=mob-xs-share_petition-reason_msg&fb_ref=Default

How Crohn’s Saved Me

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This weekend, my oldest stepson totaled his truck. Yes, the accident is technically his fault for following too close, something we have warned him about. But it’s quite the hefty life lesson. His baby, that he saved up for, spent months researching, and finally paid for with cash, is near dead (we are still hopeful!). Watching him having to learn the hard way really sucks. I know how he feels. No, I never cared so much about a vehicle, but I know what it’s like to be young, make mistakes, and pay for them. Some mistakes cost more than others. But, I do know, without Crohn’s my life would be different, and I honestly believe it would be for the worst.

Yes, it’s quite the odd sentiment, seeing as Crohn’s has almost killed me on several occasions. I spend a large portion of my life in pain, bloated, skipping meals, cutting out the foods I love, waking up in the middle of the night to run to the bathroom for hours on end, and giving up time with people I care about due to fatigue. Most of the time I hate it. I mean who wouldn’t? But some days I wouldn’t trade this part of me for anything, because it has shaped me in ways I don’t see otherwise possible. The parts of me that grew from the scars Crohn’s gave I can’t see living without.

Rewind to age seventeen, geared and ready to take on adulthood with gusto. The world was my oyster. What would I do with it? Why, attend a college not too far from home, going to my parent’s sister church every Sunday, and falling for a Muslim guy in the process. Oh right, and failing miserably at my college track career because, well, I was sick with Crohn’s and didn’t know it yet. The Muslim first love and my religion butted heads, resulting in me being a stubborn teenager and paying for my own school.

So there I was, sophomore year, working, in school, sick as a dog, on the outs with my family, dating a guy who didn’t give me the time of day, and oh right, no longer on the track team (by choice), and it was one too many life lessons at once. No, I couldn’t handle the pressure. As much as I wanted to be that responsible, put together adult I envisioned in my head, I instead skipped classes to hang out in my bathroom while binge watching Grey’s Anatomy (until the show went downhill of course), worked just enough to pay the rent, but definitely not anything else, failed some courses, got fired from a job, pretty much did all the things I never thought I would do. Me? Fail? Me? Get fired? Me? Be an absolute train wreck of a person?

So I crashed. I did get the diagnosis that year. And the medications didn’t work. The doctor chalked it up to him assuming I hadn’t taken them. Had I? Oh that’s right, when he prescribed the new meds, he didn’t specify he wanted me to continue the old meds as well. Even my mother thought he meant we were SWITCHING, not adding onto the list. Yeah, all the gray heads in the waiting room should have been my first clue Crohn’s wasn’t his specialty.

I got depressed. Yes, me, depressed. I can’t relate to someone who suffers from clinical depression, as this was directly related to my health. Fatigue is a sneaky, formidable enemy, sucking away at the corners of you while you are left wondering what is your problem? Why can’t you do anything? Why are you such a waste of a person?

Then one day I woke up. ENOUGH! No one is going to get me better except me. I changed doctors. I demanded better treatment. Suddenly I was a researching fiend, gaining all the knowledge possible on my disease. No more would I play the victim. Uh uh. Not me. I was attacking this head on, and life better watch out.

I switched majors to something I actually enjoyed. The new course of treatment made me feel halfway human again, and I started attending classes. I stopped the issue of attendance before it began by talking with professors the first day of class, making them aware of my condition, and to back it up I made sure I was put on the school disability list. My proactive attitude didn’t happen all at once, more like baby steps, but it still happened.

I wonder, if it weren’t for Crohn’s, who would I be? Yes, some of my trainwreck-ism came from being sick, young, and immature, but what would have caused me to pull my head out of my rear end and get it together? What would have made me the driven, ever curious, adventurous soul I am now? How would I be able to appreciate each pain free, joyous moment on this planet?

I wanted to teach in bilingual education. I didn’t think, at the time, my French was good enough. Or that I was good enough to even get hired by this forward thinking school district. But I worked on my French, put a smile on my face, walked into all five interviews (yes five! I didn’t get hired after the first four, but I was determined, and three years later I DID get hired), and finally got my dream job. I get to speak French all day long with six year olds. Yes, that is awesome to me! I wanted it, and I got it, and I’m loving it.

When I want something, I go for it. I may not always get it, but at least I’ve tried. Because my good days are limited, and who knows what life I have left to live, I want to enjoy it all as fully as I can. Whatever interests me, I will try. Hydroponics? Doing it! Computer languages? Trying to learn. Longboarding? As long as I don’t get speed wobble and take a tumble like I did the first time, all is well. Short hair? Rocked it. Red hair? Can’t see myself in any other color now. Teenage stepkids? Yup, just don’t confuse me for a teenager, too.

And that brings me full circle to my most crucial point here. If it weren’t for Crohn’s, I would have never, EVER dreamed of being a stepmom. Nor would I have ever been successful at it. Crohn’s taught me responsibility, wisdom, and to appreciate life in a way nothing else could have. And because of it, I am honored to be involved with these four kids. Yes, I get mistaken for their sister. Sometimes people think I am Matt’s girlfriend. Ew, weird. Trust me, I suffer from these misunderstandings almost daily. I recently got carded trying to buy a rated R movie at Walmart, and my kids were with me. The lady thought I was 17. I’M ALMOST 29!!! Compliments aside, I’m proud to be their stepmom, and that they’ve let me into their lives so willingly.

So thank you, Crohn’s, for choosing me and not someone else in my family. Thank you, genetics, immune system, bacteria, and whatever else went into play for striking me with this illness, because without it I would never have four amazing stepkids. And that’s the biggest gift life could offer me.