Healthcare Advocacy in D.C.

Well, I went to The Hill.
The Crohn’s and Colitis Foundation asked if I would, so I said, “OF COURSE!!!”

My professors were kind enough to let me get finals out of the way early so I could go make noise on Capitol Hill for a couple of bills:

1. The Medical Nutrition Equity Act H.R. 2501: Currently, health insurance in America will cover medical foods as long as they’re inserted through a nasogastric (NG) feeding tube, even if there’s no clinical indication for insertion of an NG tube. We need these medical foods covered orally! Medical foods are NOT groceries…that seems to be the consensus on The Hill, and I had to explain from the position as a future registered dietitian:
– Medical foods are broken down into single amino acids, digestible monosaccharides (single sugar components) and lipids, so the body can absorb them easier. These are especially important in patients who are malnourished.
-Medical foods are important, especially in pediatric patients, to prevent or prolong the need for more expensive/potent medications.

2. The Safe Step Act H.R. 2279: There are laws in 25 states currently that protect patients, but not in Oklahoma where I live. In Oklahoma and states like it in this respect, insurance requires patients to first fail a medication before they can then be prescribed a medication that would be helpful. However, there’s no burden of responsibility on the insurance companies to review the appeals process submitted by the doctor stating that the patient is failing a drug. This could mean up to 6 months time would pass before a patient finally receives permission from the insurance company to try a new drug. I experienced this firsthand in Oklahoma last year:
– My drug of 6 years, remicade, began failing me because my body developed antibodies to it since my doctor repeatedly forgot to write the order for it, delaying the time between infusions of remicade.
-I “failed” the drug, meaning I began to experience uncontrollable symptoms. I was told that it would take “several months” before insurance would approve another drug. I was missing work and knew I didn’t have “several months”. Literally, I was scared that I would die. I was violently losing blood 30 times daily, losing weight, and I couldn’t stay hydrated. I was hospitalized twice last year because of issues associated with failing remicade.
-I moved my care to Texas, which is a 6 hour round-trip ordeal for me to receive treatment. Because Texas has laws in place that protect patients, I was able to get my infusiong within 72 hours of finding my new GI doctor in Dallas. When insurance acknowledged that I was “failing” remicade, I was able to get on a new treatment within 48 hours of the doctor submitting an appeal to insurance.

The Safe Step Act would require insurance to make timely decisions so patients could receive the treatment they need as prescribed by their doctor, potentially avoiding missed time from work, loss of employment, surgery, hospitalizations, or even death (in extreme cases). The Safe Step Act saves healthcare dollars and lives!

A local GI doctor (George) and I spoke with the staffers for Senator Inhofe and Congresswoman Horn from Oklahoma, and then we met up with friends from New York and Kansas (Sarah and Tyler) to speak with Congresswoman Davids and Senator Roberts from Kansas (side note: Kansans are truly some of the kindest people I have ever met). Our goal was to get co-sponsors for these bills so we can make them into laws, bettering the lives of IBD patients and beyond. Most, but not all, of the legislators were receptive and even supportive! Contrary to what we see/hear in the media, Republicans and Democrats CAN agree on some things, and since these bills are bi-partisan, that made this whole, “please support these bills” requests much easier.

I saw Congresswoman Alexandria Ocasio-Cortez from New York from afar- SO exciting to see women MY AGE in Congress! I also saw Senator Ted Cruz from Texas about 127 times.

Between our meetings, we grabbed lunch underground at a cafeteria and waltzed over to the U.S. Botanical Gardens for some peace and quiet from the hustle and bustle. Shout out to Sarah from NY for knowing D.C. like the back of her hand, because I felt like we had a tour-guide, and this was a gem:

Since the 20 days that have passed since meeting with legislators, we have gained 22 co-sponsors for The Safe Step act. I sent another follow-up email to some staffers today, and we are actively seeking more support.

If you’re interested in these bills above and want to make noise where you are, email your representative and ask them to co-sponsor the above bills. Tell your story, and let them know how these bills would help you. These bills are currently both on the House of Representatives side, but we will have Senate call to action soon!

I’m learning that advocacy is so, so important. If you’re affected poorly by the systems in place, we can make a change…but we need to tell our stories. Lawmakers need to know how we can change our world, and advocacy is the perfect space to not only let people in positions of power see how we need change, but also to offer a solution through these bi-partisan bills.

Keep moving forward!

Not pictured: coffee shops, crab cakes with my friend Hope, riding bikes through a thunder storm, touristy monuments, and a cocktail reception with new friends

P.S. If YOU want to support medical research directly, please consider donating to my fundraiser here!


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Some Things about Crohn’s

Okay, guys. I’m just as sick as writing about it as I’m sure you are about reading it, but here I am. Crohn’s is currently taking over my life, and if I don’t write about it, I’ll go insane.

If you’re easily grossed out, please keep reading. You’re exactly who needs to be educated.
xoxo.

When people hear “Crohn’s” they make a few assumptions:
– “That girl probably goes to the bathroom a lot.” True
-“Isn’t that a joint thing?” Yes. But mostly intestines. Yum.
-“Is that like…IBS?” No. 
-“Are you all better yet?” There’s no cure, Susan.
-“
I heard she got that from drinking and running too much.” Not how autoimmune diseases work. 

If you have IBS or gastrointestinal distress, I know that’s tough. But please, for the love of all that is holy, go get a colonoscopy, drink the chalky contrast juice and get a CT scan, and see a good gastroenterologist for a diagnosis. Then, I’m happy to commiserate with you, but I’m really not in a good place to dish out sympathy for “I think I ate too much chipotle once and I almost died.” That happens to the best of us.

I have been in a flare (symptoms daily) since last November after reaching “remission” (no active disease) last May. If you’re doing the math, that’s about six months of sweet, glorious, freedom. And then I had to find a new doc (one that would remember to write the gosh darn prescription for my Remicade infusion), had a hospital stay, toyed with the dosage of my infusion, quit my day job, started grad school…and that finally brings us here.

About a week ago I felt like I was literally drowning, rushing to the bathroom 29-36 times daily on the days that I was counting, juggling with grad school and running back and forth to a local lab for blood and stool tests (#glamorous). My doctor begged me to come to the hospital, so I did, even though I had a fun trip booked to Washington D.C. for school! SAD!

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Speaking of grad school, ^ here’s my books that I never get to read because I’m too busy with class and running to the bathroom currently…ha!

I drank the chalky, gross contrast, although my nurse Jen was a former bartender and did her best to mix the contrast with everything carbonated the hospital had in stock, and it wasn’t so bad. I had a CT which confirmed “severe inflammation” in some sexy spots in my intestines. Then I had to do a colonoscopy prep until 1:30AM. Then I was sick until 5 AM because of prep. Then I traumatized a newly graduated nurse who had to give me an enema at 6:30 AM. I cried in the bathroom because of embarrassment/feeling sorry for myself/pain. Then I had a colonoscopy and esophagastroduodenoscopy (did I spell that right?), which confirmed ZERO inflammation up top *praise hands* but “severe inflammation” over six inches in my colon, and the rest of the colon is “mild inflammation.” Small wins?

I begged and pleaded with the medical staff NOT to give me pain meds and steroids. I won the pain meds battle, but they gave me IV steroids anyway. Needless to say, I feel like a crazy madwoman. CRAZY, YALL.

What now? I’m out of the hospital. I’m trying to eat even though food sounds gross, and it hurts. Keeping weight on is another new goal for me after losing seven pounds a little too quickly. We brainstormed new treatment options yesterday, and I’m happy to announce:

*clears throat*

I AM NO LONGER ON INFUSIONS.

After six years of infusions, there’s a NEW oral drug that I take twice daily. Not reading the side effects list because it’s scary.
I’ll keep you posted on how that goes, but it’s been 24 hours…and maybe I’m crazy (probably)…but I *think* I’m starting to feel a little better. Fingers crossed!

I walked around my street today, and that’s a huge improvement from two days ago. Flares fluctuate from day to day, and I’m thankful that I was able to move my body today. The pup was happy, too.

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He was not thrilled about the paparazzi pics…clearly

More reasons to be thankful:
-I cleaned my house today
-Naps
-My dog
-Walks with my dog
-Fall weather + colorful trees

I’m still figuring this disease out. Life is tough right now, and honestly I can’t wait to look back on this time once it’s a memory and I’m past it…but I’m learning a lot. I’m getting stronger, which is always what I tell myself when things suck, including when I do burpees. This time in life is just one big, giant, rotten burpee. *checks abs*

In the meantime I’m feeding my body with as many nutrients and as delicious of food as I can possibly find. I’m hoping to be able to control *all* of this with diet and exercise one day, and my doctor is on board once we get through this time, over the hump, and into brighter days. I’m thankful for my friends, my Zack, my dog. I can’t wait until this flare stops flaring. I’m going to wake up and see what my body says tomorrow, but I hope it’s down for a short, small run…just because I can.

 

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First day of grad school! Please note: Christmas welcome mat, because clearly we have our lives together

Thanks for your support, friends! Any questions?

Keep moving forward!

 

Stacey

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Took a photo while driving yesterday in Dallas, which is dangerous…but this sky was FOR REAL.

 

 

 


When life hands you lemons…

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I was a baton twirler in high school, so naturally I juggle.

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My backup career is to join the circus. Barefooted.

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^ This book (highly recommend!) is what got me thinking about this topic. Not the joining the circus as a solid Plan B, but the topic of “When life hands you lemons…”

You get to finish that sentence.

… “Make lemonade”
… “Add alcohol and make vodka sours”
… “Juggle them”
… “Throw the lemons on the ground and stomp on them”

However you want to finish that sentence- that’s your choice.

But what isn’t always your choice is what form the lemons manifest in your life. My lemons have taken many forms, most notably getting diagnosed with an incurable autoimmune disease at age 21. Shoutout to moderate to severe ulcerative colitis Crohn’s disease.

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P.S. Diagnosis was ulcerative colitis, then crohn’s, then ulcerative colitis…and most recently, “Crohn’s?”

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And at times I threw it on the ground.

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I did not handle the lemons gently and I didn’t do life so gracefully, because Crohn’s is a bitter-sour pill to swallow…again and again, ups and downs of flaring and thriving- one step forward and two steps back.

But at the end of the day- it’s my choice. What am I gonna do with those lemons?

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What are you gonna do with YOUR lemons? The pain and the uncomfortable, unfair life that happens that you can’t control- what are you going to do?

I think we create our own realities. Not completely because, you know, disease and things out of our control. Lemons.

But we choose the response that becomes our reality, and that is powerful. YOU choose to get up off of the bathroom floor, put down the Netflix remote, and chase the world outside and around us. You choose to see and feel the beautiful life stuff. You choose to muster the appreciation of the crap that’s happened to you…because even though it’s bitter-sour, it makes you all the more resilient, if you let it.

So.

Let the lemons make your life more flavorful, even though it doesn’t always taste good – let it make you better.
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Because I believe you’re bigger and badder and sweeter than your lemons, and if you disagree then we can just join the circus together.

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P.S. Health benefits of actual lemons:
-Vitamin C is good for your immune system
-Helps with hydration: drinking flavored water sometimes makes you drink faster
-Natural diuretic and can prevent bloating

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P.P.S. I set up the self-timer on my iPhone to take ALL of these goofy photos with lemons AND THEN I put them on the world wide web for the world to see—

-Stacey


R E M I S S I O N

Monday was the best day I’ve had in a long time.

“Are we allowed to use the ‘R-word’? Are you saying I’m in remission?”
“Yes. You can say that you’re in remission! Be proud of our hard work.” <- my doc.

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After nearly five years since my diagnosis with Inflammatory Bowel Disease, my medical chart has added a new word to its history: REMISSION

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A brief recap:
Late September 2012: began noticing symptoms (x rated version: bloody stools 30x daily and through the night, fatigue, sudden weight loss, nausea)
October 2012: Diagnosis “Moderate to Severe Ulcerative Colitis”; began Remicade IV treatments immediately
April 2013: hospitalization (“holistic approach” without meds didn’t work- oops)
May 2014: Mega-flare
June 2014: diagnosis changed to “Crohn’s disease” after 2nd colonoscopy
July 2015: Ran first half-marathon while fundraising for cures to Crohn’s and ulcerative colitis with the Crohn’s and Colitis Foundation of America; still not in remission
August 2016: Concerns that Remicade infusions are losing efficacy; increase frequency of infusions
December 2016: New medical center, new doctor, new state, new meds
February 2017: Diagnosis is confirmed to original dx after 3rd (or 4th?) colonoscopy and biopsies, “Moderate to Severe Ulcerative Colitis”
May 2017: Reached clinical REMISSION

…what does that mean?

My labs are normal, showing no signs of active disease, meaning that my inflammatory markers are all within normal range. Also my micronutrients are all within normal ranges. I have zero symptoms in a day. ZERO. And then I wake up the next day after sleeping completely through, and I have zero symptoms again, and it keeps happening.

There’s no guarantee how long remission will last, since there’s no medical cure for Crohn’s disease or ulcerative colitis. My doctor is enthusiastic to work with me though, and he thinks there’s hope in the future for me to eventually live life without my IV infusion with a 50% chance of relapse. I actually like those odds, and I’ve NEVER heard a doctor reference my life without infusions, so this made me cry happy tears…and I’m not a happy tears kinda girl. However, weaning my body off of the infusion will take months, potentially even years because it’s a slow balancing act: increase the time between infusions, check blood, remain on oral medications, check symptoms, lower dosage of oral meds, check blood, etc.

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The goal now is to stay in remission and eventually get into “deep remission”. To me it sounds like I’m currently in remission with training wheels, but I gotta ride like a pro before I can be set free. More patience and hard work, and I am completely up for it!

In order to appreciate a milestone of this magnitude, I’m gonna be nostalgic for a hot second. Lessons I’ve learned from Crohn’s/ulcerative colitis/whatever the heck my diagnosis was when I learned these lessons:

1. Vulnerability is your friend. Vulnerability leads to empathy. Be vulnerable, because it creates a genuine connection with people that you can learn from, be encouraged by, or befriend. You can still keep your dignity and humility AND manage to be vulnerable too- don’t worry :).
I can connect with people on really weird, strange, close levels now because of my new-found empathy powers…and sometimes that freaks me out. But it’s cool, too.

2. Disease is a lens to view the world. NO WAY could I see the world in the way that I am able to see it now had I never been diagnosed. I’m able to feel the importance of time. Time is vital. Time is not on our side, but we can make the most of it…because it’s a gift. Truly. Sound cliche? I don’t care.

3. Humor is your greatest weapon. Whether I’m shitting my pants in traffic, dealing with a bad report, debilitated by fatigue, or having the greatest day of my life…humor. Always, always a good reason to laugh, usually at my own expense, and that makes my day. It’ll make yours too, if you let it.

4. Strength isn’t something that comes by osmosis. Life is tough- no, really. Life. Is. Tough. But one day you’ll look back thinking, “How did I survive that? How did I make it through?” You got stronger. While you were driving that struggle bus, you were gaining character, muscles, emotional fortitude, and badassery. You couldn’t feel it, but you were resilient. And now your resilience has made you strong. Way to take those trials like a champ! Find joy in trials, because you’re gonna find strength.

5. Kindness. Be slower to judge. You don’t know what people are enduring. We’ve all been through some small version of hell at some point, and some people handle that with more grace than others. Be kind to yourself, also. Rest, breathe, relax, sleep in if you need to, but don’t beat yourself up. You’re a work in progress, and you deserve a little kindness; we all do.

Oh- and celebrate every little accomplishment along your way. The best is yet to come!

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^ How I celebrate/deal/rationalize/breathe

Thank you all for celebrating this milestone with me!!!

-Stacey

 


Why did I start running?

I’ve been wanting to do this post for awhile:

Why did I start running?

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For those of you who don’t know, I was diagnosed with moderate to severe ulcerative colitis in 2012, the year before my college graduation. I had never heard of ulcerative colitis until my diagnosis. I remember thinking, “Thank God- it’s not cancer.” Because after two-three hellacious weeks of losing over 25 pounds and not recognizing what the heck was happening to my body, I was sure that it was something drastic.

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The day before my diagnosis

I ignored people, even some who I loved, pleading with me to take a medical leave of absence; my GPA even increased during this time, probably because: 1. I was quarantined to my house with no social life since I was shitting 30 times a day, and 2. I was determined to prove that my limitations weren’t limiting me.

I remember the doctor explaining “there’s no cure,  but it is treatable,” and thinking “Well, why bother telling me there’s not a cure if it’s treatable?” But I know now that what he meant was, “We’re going to try a lot of different medications, and see how you respond. Over time, they may lose efficacy, and you’re going to have to try new meds. Some of these medications may require lifestyle adjustments, like having to go to the hospital every few weeks for an infusion for the rest of your life. You’ll try dietary adjustments. You may feel anxious and face sleepless nights; you may become a person you don’t recognize; you’ll lose your hair and have weight fluctuations, but you’ll gain the best kind of people for friends. You’ll have a struggling social life, but you’ll adjust. Each and every time, you’ll overcome, and you’ll be stronger for it.”

^That’s what he implied. Honestly, it’s taken me years to figure out that this is a lifelong thing. Sometimes I still don’t get it.

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That year of college was memorable. I recall not knowing if I’d have the energy to make it up the stairs to class. I promised myself that if I had the ability to move again, then I would.

That following May in 2013, my roommate and I completed a sprint triathlon.

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Then I graduated, moved out into the real world, found a job, and got angry.

I started researching. I realized that I wasn’t alone in this unglamorous, poop struggle, and not many people talk about it (not victim-blaming. It’s not a sexy disease). There’s over a million people in America alone with this disease…but there’s no cure. Absurd. I was angry that there weren’t cures. I was angry that I was going to have to deal with rollercoaster flares. I was just…angry.

So I thought, “I think I’ll go for a run.” Because honestly, I’m rarely angry. I remember being angry and upset only a handful times growing up, and I went running, huffing and puffing my way around the neighborhood each time.

But this time was different. I wanted to prove to myself that I was tough, despite my weakness. I wanted to push against my limitations, and I wanted to feel strong. I needed to know that I was not damaged goods, and I wasn’t the diagnosis code on a medical chart, but that I was even more capable than ever before in my life.
My way of dealing was running.

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After my first 13.1 in Sonoma, CA

Around my angry/I want to feel better and make some trouble on behalf of others/time of chronic badassery, I found Team Challenge and trained for a half-marathon while fundraising for cures to ulcerative colitis and Crohn’s disease- and I channeled my anger into some productivity.

And today I keep running.

If you want me to be real with you, I took a break from October until this month…zero runs, because I physically and mentally couldn’t, because of a nasty flare that has required time, energy, and commitment to dietary adjustments and more meds to shake me outta my funk. I haven’t felt like me…

I’ve spent days in bed until nearly afternoon. I’ll drop Zack off at work, go to bed, and then pick him up after a day asleep, only to go back to sleep. He has been the real slim shady through all of this.

And it’s okay. Struggles are temporary.

Finally, my meds have started working, my dietary adjustments began healing my gut, things started clicking, and the wheels started turning.

Tonight I ran two miles without stopping. Two miles of up and over hills, around neighborhood corners, and hopping over sidewalk cracks, and I feel alive. I can feel my lungs struggling to get their rhythm, and I can feel my legs swinging happily beneath me while my feet pound the pavement, and I’m thankful for my 90’s playlist in my ears and the wind through my hair.
(Shoutout to Mother Nature for allowing me to run with my hair DOWN today- freedom!)

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In short, I run because I can and for me, that is the greatest reason of all. I don’t think about ulcerative colitis. All I think about is making it to the next light pole, around the bend. And suddenly I’m there, and I keep going. I run because I get to keep going, past my limitations and beyond sickness.
Because I can :).

Why do you run?

P.S. When I can get a bit more organized, I’m thinking of making a couch to half-marathon training list with the help of one of my running coach friends.

Sincerely,

A UC patient from the couch to a half-marathon…or two or three

 

 


My Diagnosis Change + Remix to Remission

Thank you for all the good ju-ju, prayers, and humor! I made it through the fun time colonoscopy just fine.

My diagnosis has changed.

The CT showed inflammation, and the colonoscopy confirmed that I have “active disease” but due to the location of the lesions and the biopsy, my new doc switched my diagnosis from Crohn’s disease to ulcerative colitis.

My family is all pretty stoked about this, because technically ulcerative colitis has less playing room than Crohn’s disease, which can affect any area of the digestive tract. Ulcerative colitis, however, is limited to the colon. This is, in a way, a small victory.

Weekend recap:

Zack and I had a few friends over. Then, I made piña coladas for everyone (except me), and my punny friend Becca proudly dubbed them “piña colitis”. I like her.

This was also the night I ruined my low FODMAP elimination diet and had to start over, because I ate chicken fried steak, fried pickles, and a few fried okra. It thought it was worth it, but now I’m kinda sad about starting all the way over. These are things to think about when chicken fried steak is staring you in the face. Just.Say.No. grr

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We went grocery shopping and found the largest carts known to man. Shoutout to my sweet sister and her BF for visiting!

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Reflections & Remission:

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One year ago, finish line at the NOLA Rock n’ Roll Half-Marathon

This weekend a ton of people ran the Rock n’ Roll Half Marathon in New Orleans, and many of them fundraised for cures to Crohn’s and Colitis with Team Challenge for the Crohn’s and Colitis Foundation of America. These people are my heroes!

And this got me thinking. I’m completely ready to move on, and I’m tired of having goals for tomorrow. I’m ready for action and hard work. I’m fed up with feeling fatigued. I get it. Sometimes getting better requires rest. But I’m tired of feeling tired. I want to be better. So, I’m starting with (very) small goals. This week, I’m running.

Yes, I’m past due for an infusion. Yes, I just spent all day juggling insurance phone calls with symptoms with naps. But I have to start moving again, for the sake of my sanity. I hear so often “listen to your body” and my mind is an important team member of my body. My mind needs a run.

Running mileage goals for the week: 3 miles.

I’m being real here. This is my space. This is my exhale. So, yes. Three small miles for a whole week are my goal.

One foot in front of the other. Moving forward. This is the remix to remission 🙂

-Stacey


Colonoscopy Prep: 6 Ways To Make it Suck Less

Hi, Friends!

I’m willing to bet your day has been exponentially more
fun than mine, although I do consider myself to be a chaser of silver linings and an eternal optimist…so it’s still a tossup.

Also, I am fully aware of how rainbows and unicornsy that sounds, but I’m unapologetically happy most days, eternally running through flower fields.

Today is prep day, and I don’t mean meal prep.

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Colonoscopy at 7am tomorrow at the new (for me) med center with a new doc. New places and people, but same dreaded prep juice.

So I’m talking about things that no one talks about today: Colonoscopies. I fully believe there would be cures nearly available for Crohn’s disease, ulcerative colitis, and a host of other autoimmune diseases if they were easier to talk about. I’m not victim-blaming the patients; Disease and all its glam and glitz does stuff to your psyche. Being real about poop and achy joints and weight fluctuation and j-pouches and ostomys and stomas. ugh. Just tough stuff to talk about…
…unless you’re in the middle of a store with a “no public restroom” sign and you’re suddenly about to be sick  crap yourself uncontrollably. In that case you drop all your reservations at the door, announce to the store owner that you’re “about to be really sick and it is a medical emergency that you use their private bathroom,” and then you discuss having a “digestive disease” while you check out moments later. G-l-a-m-o-r-o-u-s. P.S. Can you please consider advocating for research while you hand me my receipt, even though I look completely normal like there’s nothing wrong with me at all, except for now you know that I have a digestive disease? Thanks 🙂

^Real life situation, by the way…happened on my honeymoon.

How to make colonoscopies suck less as told by a 20something year old:

1. Be creative. If your prep SUCKS (spoiler alert: It probably will), mix it with cold ginger ale or 7up. Your prep will say something like, “Mix with water.” Believe me, mix it with something carbonated, too. If you normally don’t drink sodas (neither do I), today isn’t a bad day to break that rule.

2. Listen to hype music if it’s your first time to chug prep. Don’t take it all solemn and serious. I suggest the classy ballad “shots” by LMFAO.

3. Ice chips, sometimes blended with a little bit of lime gatorade and fresh-squeezed lime juice isn’t a bad “meal” at all. Eat it with a spoon. mmm.

4. Water. Lots and lots. Just when you think you’ve had enough, maybe have a sip more.

5. Really hot showers. The stuff dreams are made of.

6. Netflix and chill. Enjoy this day for all that it is: a big ole rest day. Wear fuzzy socks.

Hope you’re having a good day, wherever you are!

Tomorrow, I’m going to have the biggest (low FODMAP compliant) taco I’ve ever SEEN.

Keep moving forward 🙂

-Stacey

Shoutout to Zack, who is the best a girl could ask for.