Just East of Normal

Crohnically Ill, Uncategorized

“You’re showing signs of remission.”

The words every patient wants to hear… until they’re followed with:

“We think your symptoms are due to your post-surgical anatomy. Consider this your new normal.”

Awesome. So I can’t eat like a normal person. I can’t exercise like a normal person. I can’t even perform a stream of normal daily tasks like a normal person.

Nope.

My normal is just east of normal. Better, but not quite there. And not only will I never get there, I should just stop trying.

Ouch.

Mega ouch.

But then I slap myself upside the head.

I’m ALIVE.

I may feel like several cement trucks ran me over when I get up in the mornings, and I may experience several severe bouts of nausea throughout the day (I might even hurl), and I just may have a severe stomach ache, one that makes me look pregnant and doubles me over, but I am still alive. I have the privilege of groaning myself awake every morning. I’m granted the opportunity to trudge through each day, and I have a beautiful family to come home to each night, no matter how much we drive each other crazy.

I’m living this thing called life, and not everyone gets to.

I almost didn’t.

If east of normal is what I’ve been dealt, I’ll accept it graciously. It allows me to relish each day I get, pains and all, to the fullest. I will find positives in everything, no matter how scarce they seem. Life is meant to be lived and loved, and I aim to do that, no matter how bad it all seems.

Will you?

 

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How Coach Saved Me

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“No pain, no gain!”

“It’s not about who’s fastest. It’s about who wants it more.”

“Winning the race is all in here,” says Coach, placing his hand on my head.

No, he’s not pumping me up for a race. It’s a regular, Monday practice of 16 laps. 16 laps at a grueling pace, with only a few seconds of rest in between.

“Okay, next lap in five, four, three-”

We start jogging to the start line; this way we can start our lap at full speed.

Why do I have to do this again? my head groans. Fatigue, nausea, and pain threaten to overwhelm me, and this lap hasn’t even started yet.

“Two, one, go!”

My legs work their way around the track, matching my partner in crime stride for stride. We round the corner, coming to the back stretch of the track. My mind screams at me, begging me to stop. Just stop running, throw myself into the grass, and let this be over.

No.

I focus my eyes on some trees beyond the track, and use tunnel vision to melt pain into the background.

Pain is the body’s emergency system, alarming you that something is wrong. Well this is training, and nothing is wrong. Instead, pain is a beast you overcome, and the battle forges you into someone strong and unstoppable.

With my victory over pain and some gold medals later, this school of thought develops a double edge sword I am unaware of. Pride is the root of one’s destruction.

Senior year. My times slow down. I gain weight. I’m tired all the time. My stomach hurts all the time. Not for one second do I think something is wrong with my body. No, this new, invisible monster will be defeated, just as I’ve beaten pain all the other times. I only have to be mentally strong enough. How wrong I was…

I do not win a gold medal. I give the silver to the other runner before the race even starts, and I know it. Leaving with a bronze, I never feel more ashamed. I don’t lose. I don’t quit. And today, I did both.

I go to a school where I know have the anti-Coach. Everything my high school coach was- inspirational, positive, a life force to be reckoned with, despite his five foot four height- my college Coach is not. Lean, tall, and incredibly mean. Despite the warnings to his character, I proudly assume I do not need a good coach to be successful in college. I can do this on my own.

The high miles and grueling training schedule give me knee problems. I’m still always exhausted, and I don’t know why. If I can just be stronger, better, and less weak, I can do this. I’m running to the bathroom in between laps. College also brings on a slew of emotional issues, as I realize outside of my small little world back home, I have no idea who I am. Because of this, I cling onto track. Track is the only thing left of my identity.

My knee doesn’t improve. I’m suffering in ways I don’t understand, and tunnel vision doesn’t wipe it away. This invisible monster has found root inside and taken over.

“You can either have surgery, or reduce your training in order to let this heal on its own.”

Somewhere deep inside screams that this is it. This is the out you need. Take it!

Normally I mull over major decisions for days to weeks. I give this only a second’s thought, because I can’t belabor the fact I’m about to do the one thing I never thought I would do- quit.

After giving Coach my resignation, I allow myself to cry on the walk home, but that’s it. I won’t think about track again.

I have to find out who I am on my own now. I don’t know what’s taking over me, but I will defeat it, and it will be on my terms.

Instead of 7+ miles a day, I run 4. I still need the bathroom multiple times during one run. My stomach screams in pain, but onward I go. Nothing will stop me.

On one unfortunate long distance workout, I have an accident. I cry on the walk home, because now I realize I’ve hit a limit. I can’t even do the one thing I know how to do. Can I really not run anymore?

From there it only gets worse. I go the bathroom twenty plus times a day. I visit the Health Center at school, but they test me for parasites and put me on antibiotics. This goes on for months. I hole up in my studio apartment. I’ve gone from living with close friends to living completely alone.

When I go to the bathroom, there’s blood. I can’t go to class. Work sends me home as there is no point in keeping me when I spend all the hours in the toilet. I go to the Health Center over and over, begging them to find out what’s wrong.

My mom calls. She’s spoken to my brother who’s in medical school, and he thinks it’s Crohn’s Disease. What the heck is Crohn’s Disease? She makes an appointment for a specialist, while I do a Google search.

Three things I know after my scan of the Internet:

  1. It’s life long
  2. It’s treatable
  3. People with Crohn’s lead normal, happy lives.

The desire to laugh and cry at once overwhelm me. THIS is the invisible beast I’ve been battling! I have a health condition! So all I need is a pill that I’ll take everyday, and everything will be okay! Now that I know who the enemy is, I can fight this, and soon this will all be over.

Little did I know, the battle had just begun…

It’s not one pill a day, it’s eight. And I don’t get better as soon as I take them. The doctor says it will take up to six months to start seeing improvement. Six months come and go, and I’m not better. I use the bathroom less, but the pain and fatigue still crush me. I thought I could use tunnel vision on this disease and get better right away. The fact I can’t defeat it so easily throws me into an even deeper pit of depression.

My mom suggests we go to a new doctor. He doesn’t play around. He gives me the harder drugs right away. Instead of pills, I have shots. For two years, the shots work. For two years, I get to remember what “normal” feels like. I realize I’m not weak. Everything I had gone through finally made sense. I no longer hated myself for quitting. In fact, learning to let go can sometimes be the smartest choice of all.

Two years comes to an end, and the fatigue creeps back in. This monster works with the upmost stealth, and a bad day turns into a bad week. The next could be better, tricking me into thinking maybe I just had a virus, or was over stressed. Pain comes and goes. I miss my six month check up because of work, as substitutes who speak French aren’t just sitting around waiting to take my place. I work for a private company, not a public school.

At some point I realize it hurts to lift my leg just to put on pants. Any amount of pressure on my lower abdomen leaves me in tears. When kids wrap their arms around my waist, I’m biting back the pain and nausea. While teaching class, I have to excuse myself to throw up in the bathroom.

I tell my boss I have to take a day to see my doctor. I don’t care that there isn’t a sub. They work it out for me, and down to Charleston I go.

The look on my doctor’s face doesn’t bring me any relief. This doesn’t leave me thinking “oh, everything is fine, just need to change around some meds.” Nope. He puts me on steroids, but lets me know surgery is a strong possibility.

I groan. I take the steroids anyway, but I know where I’m headed.

“Don’t worry. It’s a 3 to 4 day hospital stay max, and you’ll be out before you know it.”

As they prep my discharge papers, I’m sunk into delirium, pain turning my world fuzzy and mute.

“Don’t worry,” says some resident doctor. “You’ll be fine. This will be over soon.”

How wrong he was!

I wake up to a tearful husband and parents.

“What happened?”

How do you tell a drugged person they almost died? How do you mention that they now have a bit of intestine protruding from their stomach?

It takes over a week to come back to a state of awareness. I’m fed through a central IV. The tube up my nose drives me mad. My lips are cracked from no water. Leaving my bed requires breaking through a wall of pain. I lose weight at a rapid pace, and I shiver all the time from cold. I want to leave. I want to be home with my family.

“How can I get out of here?” I ask the doctors during their rounds.

“Well, we need to get you eating. And in order to do that your digestive system needs to start working. The best way to kick start your digestive system is to walk as much as possible.”

Bingo! THAT I can do!

It’s just like laps around a track.

Just like that, Coach saves me.

Getting out of bed hurts like hell, but in my mind Coach is yelling at me to get up anyway. “No brain, no pain!”

I get out of bed, and that was the hardest part!

Clutching my IV pole, I make my way down the hall. I reach the end and turn back. I’ll have to work my way up to full laps, but this, I can do.

I put myself on a schedule (well, as best a schedule one can do while in hospital and on heavy painkillers). I keep walking. Soon I’m doing full laps. Finally, after sixteen days, I’m out of there.

And yet, I find myself right back in.

Complication after complication after complication.

I live this nightmare for a full three months. And even after the hospital part is over, the nightmare is not.

I still have to get my strength back.

And I have a dependence on painkillers to break.

But this- beating pain- I can do. I can wrap my mind around it. I know exactly what I’m dealing with now.

I’m told not to stop painkillers cold turkey and am given a step-down program. I quit in half the time allotted.

I get better.

And then I get worse again.

I’m on new medicine, and I have a new doctor. I’m still not in remission. My new anatomy from surgeries makes digestion… complicated, so I stick to low residue foods.

I now know I will always be fighting this pain. I’m always stuck with this disease. But I’m not too proud to admit when my body is failing. And I’m not too weak to fight back. I will never stop fighting.

I have Coach to thank for that.

Charleston, Racism, and Mental Health

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This is not a Crohn’s post.

Nor is this about a piece of cloth.

Because cloth does not breed hate.

People do.

Cloth does not cause mental instability.

A person’s chemical composition does.

And dammit, it’s high time we discussed this!

Charleston is my hometown. I was born and raised there. My grandmother grew up on rainbow road. This city is in my blood, my heritage, and I will always love it more than any other city in the world.

The tragedy that occurred this week is heartbreaking.

The display of unity, love, and forgiveness to follow heals all wounds.

I love that the victims’ families and the rest of the Charleston can bind together in the face of such ruthless hate and say “I forgive you.”

I don’t care who you are. That’s one powerful message.

Where other cities riot, we hold hands.

Can you get more amazing than that?

And yet, as I passed by the State House this weekend, I witnessed a throng of angry protesters.

I get the protest. Yes, take it down.

But will doing so reverse hate?

Does fabric eliminate mental illness?

Let’s face it, America. Someone who shoots up a church of people is mentally ill. No bones about it. Something is misfiring in his or her brain, and he or she needs help.

I would say the same for many acts of terror, not just this “white” guy.

Not all acts are, and mental illness is no scape goat, but a lot people sitting in our SC maximum security prison needed help a long time ago, before getting put behind bars.

Since when do we ignore this?

Since when do we treat mental health like the imaginary folklore of Tolkein or Rowling?

Because mental health is very, very real.

It’s shooting up our churches.

It’s bombing our buildings.

And it needs to be recognized, at an early stage, and properly treated.

Hate is bred, not born.

We should raise our children to love and respect one another.

As a teacher in 2015, I feel that is the case. I teach in the district he graduated from, and I know we do NOT condone his philosophy or behavior.

But what about at home? What are parents, aunts, and uncles teaching our children? Are we teaching love and acceptance in our communities?

But this takes more than hatred. This takes being sick in the head. He needed help, much sooner than June 2015. Someone should have identified this and gotten him professional aid.

Where are we with mental health, America? How are we going to change this? There are racists who don’t shoot up public events. There are racists who just sit in their own, quiet hate. And there are people who load a gun and press down on the trigger, multiple times.

Those people are sick. And they need our help. When will we recognize this? When will we do something about it? This can prevent the next tragedy. This, along with how we raise our children, can prevent the next terrorist act.

This needs to be our nation’s current conversation. What else will we do to prevent the terrorist act? Because let me tell you, it doesn’t stop at taking down a flag. It shouldn’t,

*Let me be clear. Mental health is not a cop out here. It’s not a scape goat. How we raise our kids, and how we treat mental illness is important. That will breed the real change in our country.

Why Some Of The Press My Blog Received Really Hurt

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Awesome post written by a strong, new ostomate, who won’t let media or stigma get her down.

It’s been 4 months since I had my ileostomy surgery. And it’s been a tough four months, mentally. I know I come across as being extremely confident with my stoma and I haven’t let it affect my day to day life, but in some cases, I feel it’s isolated me and there have been occasions where I just wish the whole thing hadn’t happened. These reasons aren’t really to do with my stoma either, but to do with how it’s effected my working environment and my relationships with people.

Before I had my surgery, I was working in media and spent my days in an office editing photos and dealing with press. It was fun – I’d always wanted to be a journalist and although I have written for a few publications, I hadn’t actually had any paid writing work. This job for me was a step up the ladder…

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My Face on Things

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Max Wirestone

Of all the strange occurrences that occur on the road to publication, the one that I can least wrap my head around is that apparently my face is going to be printed on physical items.  ie books. This is not a thing that should be happening in the real world. This is the sort of development that belongs in a YA dystopia.

Also, it feels like my face should lower the market value of the objects it is imprinted upon.

“How much is this book,” asks a potential customer, turning it over and observing my scowling visage.

“20 dollars even,” answers the bookseller. “You should get it! It’s an excellent read, and was once described by Devi Pillai as ‘fucking hilarous.'”

“Maybe,” says the costumer, considering the abyss that is my hairline. “How much is one without the author photo?”

“$26.99.”

“Just this once, let’s go with the upsell.”

And…

View original post 357 more words

No Fear

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Living with Crohn’s can emit a number of fears.

Will I ever get better?

Will I always feel like this?

Will I be around for my loved ones?

Will I have another obstruction or worse, a perforation?

Will I die?

It’s easy to crack under the stress of this disease, especially if it’s difficult to manage, and one’s support net isn’t that strong. Even one’s brain chemistry can predispose them to a variety of mental health issues, to include anxiety and depression.

So, I must say, I certainly don’t judge anyone who struggles with fear, because I know it. I spent hours sat in hospital waiting for a procedure the doctors told me were highly likely to have serious repercussions. I had just had two surgeries, one in an emergency setting, lost twenty pounds, and had barely regained my strength. Could my body take another mishap? As hours ticked by, the head games were painful.

However, I do value facing one’s fears head on. The way I see it, Crohn’s may be able to control my body, but it isn’t allowed to control my mind. I won’t let it cripple me in fear, leaving me depressed or in a constant state of anxiety, because to me, that is no way to live.

Mental illness is a very real issue, and those who struggle with it should be medically treated. I firmly believe that, so I don’t wish to speak for those who suffer from mental illness. I speak only for myself.

I do encourage you, fellow crohnie, to face your fears. It’s easy for this disease to wear down on your mind. To be honest, these last few months have been playing at me, and I haven’t been mentally facing my inner fears. But today was a good day- the first one in a while, and at the end of it I’m realizing I need to buck myself back up and face the pain and anxiety head on. Worrying about if this treatment will work or not does nothing. Stressing if I will ever achieve remission does not get me there. So yes, there’s plenty of pain and discomfort to be had, but I can have it with a positive attitude, enjoying what I can of the world around me. There in lies the true victory.

The Dark Side of Crohn’s

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What you see is not what’s happening. I put on a positive face. I post pictures of me grinning from ear to ear while awaiting the latest colonoscopy, or hanging out in a hospital. I cheer others on to keep fighting, never give up, and enjoy life to the fullest. Everyone says “You look so great!” “You’re so brave and strong!”

I don’t feel brave.

I don’t feel strong.

I just refuse to show it.

Well, here I am, unable to sleep, in pain with nothing to relieve it, and I’m tired of hiding. Guess what, world? This SUCKS! I may smile, and say “it’s okay,” and act all positive, but you don’t see me when I’m alone. When there’s no need for pretense or social norms, I crawl up in bed and cry. Yes, me, I cry. I get pissed. I lie here and think what’s next for me? My Crohn’s does NOT seem to get under control even though I’m on high doses of the “best medicines” available. I’ve gone through Cimzia, Humira, I’m allergic to Remicade but maybe I can try it again, and Entyvio is new, but what if those last two don’t work? What if Prednisone, meant for a temporary fix, still can’t do the trick? Is this my life? How bad will this get for me? I’m not even 30, people! I haven’t hit 30 and I’m somehow running through these drugs faster than the friggin’ roadrunner escaping a coyote. I’ve been on Humira since what last November? December? They increased the dosage end of January, and my Crohn’s is SPREADING?!

No, I know, I’m not bad off yet. It could be worse. I already know what worse is like. I see other people dealing with worse. And it’s not that I’m afraid of dying. I’m afraid of living a long, painful, useless life. What if I’m too sick to enjoy the world around me, permanently? What if I can’t be for my grandkids what my grandmothers were to me? Will I be too sick to give them their first surfing lesson, or take them shopping, or go to a trampoline park? Will I have to stop doing everything I love? Because, that, to me, is the real fear. Welcome to the dark side of Crohn’s.

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.

The IBD Island & Discovering #GYBO

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“Funny how a disease plants you on an island, the world jumbling around you, but never reaching your fingertips. Solitary confinement at its worst. Smell, but don’t taste. Exist, but don’t belong. Now I’ve discovered another soul on this island, and I refuse to let go.” (Excerpt from Chronically in Love by K. Zahm)

Crohn’s Disease doesn’t just mess with your body; it messes with your mind. Am I really THAT sick? Am I being paranoid? Why do I spend hours locked in my room and away from people? Is there something wrong with me? And the list goes on and on and on….

From ages 18-27, I struggled with these mind games, still trying to gain the maturity to handle this disease. Let’s face it, most people diagnosed with IBD are young people trying to grow up, but now we have to grow up while struggling with pain, medications, doctors, school, new jobs, relationships, etc. And so far, I’ve been doing it alone. Along the way I’ve met my husband, kids, and some unforgettable friends, but I’ve always lacked an IBD community. (This is not to downplay my network of non IBDers, because you guys ROCK!)

When I found #GetYourBellyOut, I was in remission. Yes, I was struggling with a scar tissue stricture, but was in remission nonetheless. I discovered a group of people from all over the world, experiencing my struggles. I’ve watched some suffering in hospital, others dancing about in their living rooms despite pain, others snapping some beautiful selfies. This group is a place where we can laugh, cry, seek advice, bitch, moan, cheerlead without judgement. We’re all accepted for who we are, and that’s an amazing thing.

Yesterday, for the first time, I needed #GYBO (and of course my AMAZING friends and family) more than ever.

This last month, my symptoms have shifted, and I had that “oh crap” feeling. What if it’s back? No, surely not. I let my doctor know about the burning, bloating pain by email, and he said if it got worse before my next dilation to let him know.

Dressed in a swanky hospital gown and no-slip socks, I sat on the edge of my bed, describing these symptoms to him before my dilation. The look he gave was quizzical.

“Wait, since when have you had these symptoms?”

Did he not remember my emails? I know he’s busy and all…

This turned into a full on cross examination of questions, detailing the last eight months of my life. I felt interrogated, caught off guard, and my brain just wasn’t grasping what his deal was. Did he not believe me? Did he think I was crazy? Do you see these mind games I’m referring to?

“You shouldn’t be having these symptoms with a scar tissue stricture.”

My mouth popped open and shut. Say what? I mean, I get that. But what does he mean by this? I stammer out something…don’t remember what.

“I know it seems like we’ve been speaking in tongues about this, but I have an idea of what’s going on. I know what to look for.”

His face is cold. His words are cold. Let’s just say bedside manner isn’t his thing. Is he methodical? Absolutely. For the first time in the history of this illness, I ran to the bathroom and had a break down. If you know me, you know I don’t do this. I’m a get-it-together-fight-this-head-on kinda gal. When I collected myself, I got on the group page and posted the incident. I knew I wouldn’t hear back before going into the procedure, but the simple act of getting to share with people who understand was a mental relief in itself.

I woke up to my doctor’s face in the corner of the room.

“Well, seems like every time we go in, we find something interesting. I was able to see through your anastomoses this time, and your Crohn’s is back on the other side of it.”

Maybe it was the drugs; maybe it’s the fact Crohn’s nearly killed me in 2011; maybe it’s because after ten years I’ve hardly had a decent stretch of relief, but the tears wouldn’t stop. Again, I posted to the group, my own facebook page, and started texting a friend who is dealing with major health issues of her own. With doctors and nurses swirling around me, I stuck my face in my phone, my brain fighting to get a grip.

My friend talked me down-big time. As soon as people on the group saw my post, I received an amazing outpouring of support. And of course, on my own page, people were there for me. I know it may seem trite- getting virtual hugs, etc. on social media, but it’s not. Knowing I have people to talk to that share my experiences is a relief, because they reassure me I’m not crazy. It is that bad. I can’t tell you how many times I’ve commented to a fellow IBDer to head to the ER STAT, or get a new doctor, or ask about cross medication, or how to deal with relationships, kids, etc.

I don’t wish to downplay the people in my life who are there for me, because you know who you are, and THANK YOU. I wish to convey that it’s been life changing to have a group of people to talk to who suffer from the same illness. The #GetYourBellyOut community is a diverse one- diverse in age, country, and cultural background, yet we all get along, and we are all there for each other. Whether it’s joking around, posting cheeky pics, or offering advice, the group is a safe haven for those with IBD. I may be stuck on the proverbial “IBD island,” but at least I’m no longer alone.

Thank you Sahara, Lorna, Gem, and Victoria for starting #GetYourBellyOut!

If you like this post, donate to ccfa.uk or ccfa.org to help us find a cure for Crohn’s and Ulcerative Colitis:) And as always, #GetYourBellyOut!