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 ActH.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 ActH.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!
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.
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!
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:
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.
More reasons to be thankful:
-I cleaned my house today
-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.
I was a baton twirler in high school, so naturally I juggle.
My backup career is to join the circus. Barefooted.
^ 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.
And at times I threw it on the ground.
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?
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 theresponse 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.
Let the lemons make your life more flavorful, even though it doesn’t always taste good – let it make you better.
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.
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
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—
“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.
After nearly five years since my diagnosis with Inflammatory Bowel Disease, my medical chart has added a new word to its history: REMISSION
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.
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!
^ How I celebrate/deal/rationalize/breathe
Thank you all for celebrating this milestone with me!!!
The question I get asked most often by friends and strangers alike is, “How did you know something was wrong?”
Please don’t use my experience in lieu of a doctor’s professional opinion. If you think something is wrong…go get checked out!
Okay. Here’s my story:
Once upon a time in early Fall at a coffee shop on campus at The University of Texas at Austin in 2012, I began having excruciating stomach cramps. When I say the word excruciating, I mean excruciating. Unbearable. The BEST way I can describe the pain for the sake of being relatable…have you ever had a violent stomach virus? Multiply the frequency of your symptoms to several times a day and night, for weeks. Then you get me.
I excused myself a couple times over the duration of my brief meet-up with a friend at the coffee shop. “Guess I should switch the chai lattes to soy,” I thought to myself.
But the pain and the symptoms weren’t alleviated by omitting dairy. Within weeks even ice chips resulted in pain, followed by 10-15 wind sprints to the bathroom.
X rated version: I knew something was wrong when I noticed that my stools consisted almost entirely of blood, and nothing seemed to offer even a hint of relief (not even drinking imodium from a straw…not recommended, by the way).
About a week and a half later, I made an appointment with University Health Services; they accommodated me quickly when I described my symptoms. They prescribed me high-powered antibiotics, which didn’t phase my symptoms. “Come back in 8 days for a follow-up.” I noticed that I had already lost twelve pounds when I weighed in with the nurse before my appointment.
I found a local gastroenterologist, without a referral from a professional. Something had to be resolved fast.
At the time I would wake up two hours before class began (after a night of restlessness because of constant stomach cramps and running to the bathroom), to ensure that I would arrive to class in time, allotting plenty of time for bathroom stops in the buildings on my way to class until I was finally able to make it to my class. I received permission from my professors to record their lectures during this time, because I would have to sneak out of class three or four times to be sick. This went on for a few weeks.
During my first appointment with the gastroenterologist, he scheduled a colonoscopy for the next day, and so began my life of poking, prodding, stool samples, blood samples, and biopsies. The prep juice wasn’t bad because I was pretty clear from shitting thirty times a day…still not entirely sure what the big fuss over colonoscopies is all about.
After my colonoscopy the doctor read my diagnosis, “You have moderate to severe ulcerative colitis. There’s no cure, but there are treatment options. You’ll be monitoring this diseasefor the rest of your life.”
Honestly, I was pretty certain that I was dying of cancer. When I was diagnosed, almost three weeks beyond my very first noticeable symptom at the coffee shop, I had lost twenty-five pounds. I looked like a bag of bones. I was weirdly relieved to have “ulcerative colitis” as a diagnosis. Having answers makes all the difference.
(During this time I got recruited by Abercrombie model scouts on campus for a live audition. They were quickly educated…thanks to the prednisone and my lack of sleep.)
All that I had heard about “ulcerative colitis” was a brief overview in a pharmacology course, and I knew that Crohn’s was its cousin, both under the umbrella of Inflammatory Bowel Diseases (IBD)…not exactly enough for me to understand what the heck the doc was talking about. He explained that my immune system was hyperactive, recognizing even food as a foreign substance that needed to be expelled immediately. Not cool, immune system. Not cool.
My body was rebelling against my colon. Why? Could be genetics, or the environment (e.g. toxins, antibiotics altering gut bacteria), or an interaction between the two.
“What can I eat?”
“Eat whatever you want. Since you’re a bit underweight, drink as much dark beer as you want. Eat burgers.”
^ Never made sense to me. UC is an autoimmune digestive disease in my gut, where most of the immune system is located, and I’m being told to eat whatever I want? Too good to be true. I knew immediately that dairy and beef physically hurt to eat, so I eliminated those. Next to go was processed meats and fast food, because no way are those beneficial. To my surprise there were still plenty of good options to eat, despite being in college and on a budget. Good food didn’t have to be expensive. I began researching which foods to eat to help with inflammation, since UC is an inflammatory disease, and I tried to eat more of those helpful foods: leafy greens, grilled fish, lean meats, and blueberries became my go-tos. And so began my interest in nutrition. I watched it help me, change me, and I dreamed of how it could help the people I love. Present day Stacey is in school again pursuing a dietetics degree.
After my scope, the doc handed me a paper folder full of info pamphlets and immediately prescribed me an IV biologic & immunosuppressant: Remicade. MANY people ask, “Why did you decide to be on such a high octane medication?” At the time I didn’t feel a like I had much of a choice. Looking back, I still would’ve agreed to such aggressive treatment, because I felt (and looked) like I was actually dying. It’s different for everyone, but for me it was serious at the time. I mean. I LOST OVER 25 POUNDS IN THREE WEEKS, PEOPLE.
I remember my first infusion, walking into a dimly lit infusion suite with recliners bordering the walls, each with a patient hooked up to an IV pole. Some were asleep, others read books, flipped through their phones, and a few watched HGTV buzzing in the background on the televisions. Not all the patients had Crohn’s or ulcerative colitis, some had rheumatoid arthritis, MS, and a host of other autoimmune conditions. This was the first time I realized that my life would not be the normal I remembered. I needed medication from an IV so I could live life like I remembered living. Weird.
Overnight, I felt like I had gone from being a normal, healthy, social college student to a smaller, weaker shell of myself: spending more time alienated by my symptoms; a more vulnerable person, more medicated, with less autonomy over my own health. I bought a pill pack from the pharmacy store that looked like the one my grandmother carried in her oversized old-lady purse, so I could keep up with my new lifestyle.
In addition, I was prescribed pain and sleeping aids (which I never took), along with a hefty dose of Prednisone, a corticosteroid. Jesus and steroids saved my life, and I honestly believe that. Prednisone was the only oral medication that seemed to ever work.
But I hated it.
Steroids were great in college, because I felt very energetic (almost jittery) while taking Prednisone, so even on little sleep I was able to get a lot accomplished. However, the mood swings made me feel like a crazy pants to say the very least, so I avoid Prednisone at all costs today. I also like to sleep…and I have the hardest time sleeping when I’m on the ‘roids (disclaimer: not the same anabolic steroids that give you muscles…womp womp)
LIFE AFTER DIAGNOSIS
Slowly but surely, my energy levels began to creep back up to normal. I got my life back. Sure, I had to make some adjustments here and there (still learning), but heyyy I’m alive!
I graduated with a pretty decent GPA, even with a hospital stay, despite my family’s pleading for me to take a medical leave of absence from college. I never asked for a project deadline extension. I honestly look back on this time in life and think, “How?” But I was in survivor mode. Don’t say “I could never.” You could. And you would.
I got into the working world, took some time to get a Crohn’s diagnosis, had a doc switch diagnosis back to “ulcerative colitis”, changed shifts, changed jobs, conquered anxiety, and got to know myself really well. Wasn’t glamorous, and wasn’t what I anticipated, but it’s okay! I’m okay.
LEARNING TO COPE 1. Haters Gonna Hate
People will criticize you whether or not it’s warranted. I have been criticized for being a “pill popper”; for “taking the easy way out” with the infusion (that one is beyond me); for being “too stressed”; for not taking a medical leave of absence from college; for drinking beer; for the way I eat. People don’t mean to be as nasty as they can be sometimes; they simply don’t know your situation. I control as much as I can with diet, but I’m also human and sometimes I slip up or make conscious decisions to indulge. The meds help where nutrition cannot for me. My dream is to be 100% in remission with diet, but I’m not there yet. I can’t advise YOU if you were recently diagnosed on which course of action you should take. This disease is different for everyone. What works for one person may NOT work for another. It’s all about figuring out what works for YOU until there’s a cure. But shake off the negativity. You’re living with this- YOU are the badass.
2. Keep your people close
There will be people in your life who are with you during your diagnosis, and I don’t just mean the people who happen to be around. Who is WITH you? Who is there keeping you strong? These are the people you want around forever. For me that’s my sister, my college roommates, and my Zack. Story time 2.0:
One night in my apartment that I shared with friends, I was THE most physically ill I had been in my life, sick from both ends for hours and hours (pretty, huh?). I called Zack and begged him to come over. He spent the entire night on the phone with pharmacists, arguing with my doctor about medications, all while I slept on the bathroom floor in between being sick. Finally, around 4am, after much harassing Zack managed to get me some anti-nausea meds. My gawsh, the guy is a saint.
He fought with me. He went to bat for me. He never judged. He didn’t do good things for reward. He was just there, beside me, gutting it out with me. And so were my roommates. The BEST people I know.
I promised myself that if I ever had the energy again to move, then I would. Sounds overly emo, I know. But y’all. I really struggled with weakness for so long. So my roommate and I did this thing ^. Not pictured: Roommate Becca, still one of my greatest friends, probably drinking a mimosa at the finish while snapping this photo.
KEEP YA PEOPLE CLOSE.
3.It gets better
There will be times when you think, “TF HAPPENED? I was doing so good! Where’d these symptoms come from?” This will pass. It will get better. You will prevail. You’ll come out stronger with every flare. You’ll live to tell about it, and you’ll develop a pretty damn good sense of humor from it, too.
4. Find your silver lining
There may be days when you shit yourself in your car while in traffic. It’s okay to cry about it, but then try to find some humor in that. When you’re in a flare and EVERYTHING makes you sick, think about all the amazing Netflix you’ll be able to watch. “I won’t be able to do this when I’m better.” Think about all the food you CAN eat. If none of those options work, recognize how this has changed your life. I wasn’t interested at all in nutrition before this disease, and now it is my life. I sho wasn’t going to run before UC, and now it’s my hobby.
5. You’re still you
You’re still you, but you’re more relatable. You’ve seen struggling, and SO.MANY.PEOPLE. are struggling. You’ve seen sickness, and SO.MANY.PEOPLE. are sick. You’ve seen recovery, and people NEED to find their strength to recover. Help them find it. See this as a weird superpower. This disease doesn’t define you, but if you let it, it will make you a better, bigger, badder, stronger, gassier(?) version of you. You’re still you, only better.
Please let me know how any unexpected life situations have changed YOUR life! I’m with you. Solidarity!
Keep moving forward 🙂
OH! And have a great Monday! There is such a thing, I promise.
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.
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.
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.
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.
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!)
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.
A UC patient from the couch to a half-marathon…or two or three
Soon after I finished my nutrition exam on Friday, Zack came in from work. “Grab the dog, and let’s go hiking! I bought beer.” <- The way to my heart.
I grabbed the dog, some EPIC brand snacks with some smart pop and an RX Bar, and off we went!
We had to walk quickly because we were chasing the last bit of the sun that remained, but we loved the trails out at Lake Thunderbird! We were the only three out and about, and it was completely serene. We saw a ton of beautiful deer! Jaxon was thrilled to be exploring initially, but on the way back he planted his feet into the ground (how he says “I am so done”), so I picked him up to walk back to the truck. When we got home, we facetimed our longtime friend Pratik who is far away at med school. A perfect Friday, indeed.
Saturday was a lazy movie day with a side of Hello Fresh. The weather here was meh, so we lounged. It was wonderful.
I made my meatloaf low FODMAP compliant by omitting the onion and gahhlic. Instead, I used some gluten free panko that I had on hand, plus the rest of the ingredients in the box that were low FODMAP. Zack’s meatloaf patty was made as directed, and he loved it!
Normally, I hate meatloaf. Just ugh. It’s like fancy feast for humans, and I don’t like it. Needless to say, I wasn’t thrilled about making this meal, but surprisingly it was delicious! Not your momma’s meatloaf- way, way better. I really enjoy sweet potatoes, so those were a hit.
Sunday’s excitement was taking Jax to the park. He LOVED the walk there, but once we arrived he wasn’t sure what to do with himself and just looked extremely anxious. He’s such a little mess. Zack and I tried to swing, you know, like adults. Confession: the last time I was swinging in a park was on Christmas day. I tried to jump out of the swing and onto the ground, you know, like we all did as kids on the play ground. Only this time I had more weight and more momentum when I hit the Earth, and I face planted hard.
So. I didn’t swing much
Last night we had a hellacious thunder storm. I see you, Oklahoma. Hopefully tornado season will come and go quickly for this poor Texan soul…
Today I went to the doctor for a follow-up from my scope.
My conversation with my doc was completely unproductive.
“When was your last scope?”
Um- three weeks ago…you performed it.
“Yes, right. What did we decide your diagnosis was?”
seriously, doc? …ulcerative colitis…also…my infusion isn’t working well.
“Yes, okay. We will check on that in three months.”
But it isn’t working…today.
“Right, but I want to see how you fare with the new oral medications, so we will check back in three months. Any questions? See you in three months.”
So here’s to fighting hard to be my own health advocate (it never ends, and no one can advocate for my health better than myself), and here’s to fighting even harder to move and run and get stronger. This disease can put a damper on life mentally and physically, but each time I push back against those limitations, I come out stronger. I win, every.single.time. This time is no different. I just have to keep fighting, and keep being brave.
I hope you can muster the strength to fight back and be brave against your own circumstances, too! You are bigger than your giant.