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!
Happy National Nutrition Month! MARCH! Can it feel like Spring, already? To commence National Nutrition Month, I’m sharing some things about a profession I’m pretty stoked about: nutrition! Scroll down for more.
H O W
How to become a Registered Dietitian Nutritionists (RDN)? What is an RDN?
An RDN is a food and nutrition expert who has successfully completed: – a bachelor’s degree – prerequisite coursework for a DPD or CP – 1200 hours of supervised practice (dietetic internship) – a national credentialing exam
There are a number of routes to becoming an RDN, but here’s the route I took/ am currently taking: – bachelor’s degree: check! B.A. in Sociology- note: the bachelor’s does NOT have to be in the field of nutrition, because beginning in 2024, a master’s will be required to sit for the credentialing exam. – I worked full-time and took the prerequisites simultaneously, because I could not afford to up and quit my job. I took biochemistry, organic chemistry, chemistry 2 with the lab component, and nutrition through the lifespan one.semester.at.a.time. It took 5-ever, but I am told that it will be worth it. Plus, I didn’t accumulate additional debt from paying on a course or two at a time. Bonus: If you work for a hospital, a lot of them will pay for the prerequisites! Look into their tuition-reimbursement programs and see! -I enrolled in a Didactic Program in Dietetics (DPD). A DPD is ONLY the coursework component to become a dietitian- not the internship. Think of the DPD as step 2 in the process after completion of prerequisites. I FULLY planned on working and going to school simultaneously like I had been doing, and then I was planning to apply for a dietetic internship (DI) later. Thankfully, I moved to a town with a Coordinated Program (CP) that combines the internship with the classwork. -I’m currently completing the CP, and when it’s all done, I’ll have all my supervised practice AND some graduate degrees under my belt. Once I graduate, then I am eligible to sit for the CDR credentialing exam. Some states require additional licensure to be a licensed dietitian to practice (LD).
I wanted to be credentialed- that was important to me, because in order to work for the World Health Organization, hospitals, and community programs like WIC, even NASA…they require that RDN credential. Without the credential, the future seemed uncertain and volatile to me. If credentialing isn’t important, I suggest checking out programs in integrative nutrition. However, I don’t know if “nutritionist” will always be an option without pursuing the credential. Many people are advocating for the “nutritionist” title to be protected through the RDN credential, which can only be attained via the steps I listed at the top of this post. What I’m saying is, all dietitians are nutritionists, but not all nutritionists are dietitians…make sense?
What does an RDN do? Where are they?
Glad you asked! They work anywhere and everywhere! In gyms, hospitals, schools, corporate wellness, for NFL, the NHL, MLB teams, the Olympics, collegiate sports teams, community programs, in education/academia, for the NIH, the WHO, for THEMSELVES in private practice, in the media, and beyond. RDNs provide individualized, evidence-based nutritional counseling and medical nutrition therapy (MNT). RDNs take a scientific approach to health maintenance and prevention. RDNs can even join practice groups (DPG) and gain field-specific knowledge in areas like pediatrics, diabetes, integrative and functional medicine, culinary arts, and environmental hunger. Dietitians can even become board certified in sports nutrition, pediatrics, clinical nutrition, oncology, diabetes, and more!
What excites me about the field of nutrition?
I think there’s room for entrepreneurship and growth in the nutrition field. People are more interested in nutrition and disease prevention than ever, and the job growth for this field is exciting. I like the idea of piece-mealing a career that’s rooted in science, helpful for others in areas like counseling and education, and practical. There’s constantly new research being published to keep up with, and the science nerd in me loves that. I like that the field doesn’t have to be rigidly structured and black and white- there’s room for flexibility in nutrition…and I’m excited to see what that looks like in my own life as a professional.
I have learned this with ups and downs of life with a chronic disease. But this is especially difficult for me to remember with my mental health.
I struggle with anxiety and depression, and I’m currently wading through it with help from a number of healthcare professionals, people who support me, and the #1 role-player…myself!
I woke up a couple of days this week in a fog, sad, heavy…which is counter to my normal, healthy, chipper self. But I’m not apologizing for these bad days, and I’m taking them in stride, going to therapy, journaling, soul-searching, moving my body when I need to, being still when I need to, feeling all the feels, and not feeling bad for the bad days.
Growing up, I carried such guilt when I had a bad day, and my coping mechanism was pretending that everything was finnnnnne and grrrrrreat. I now know that I don’t owe anyone an apology for a bad day, not even myself.
I guess what I’m saying is- give yourself grace, because I’m working on giving myself grace: -when I KNOW I’ve done everything to feel better; given myself the right amount of sleep, food, #self-care, and I still don’t feel better -in the thick of it, in my lowest low, feeling like it will never pass. spoiler alert: it will- it’ll wash over -when I’m panicked for no reason/ when I’m panicked for a real reason -when I’m tired, weary, and downright depleated -when I don’t accomplish everything…or anything on my to-do list
Healing is the ups, the downs, the peaks, valleys, rough parts, ins, outs, and all the in-between. But it’s the good stuff, too. I’d like to think the lowest lows help us feel the highest highs with even more intensity and gratitude.
I want to be a sure, steady shoreline that can take on storms, and allow them to wash over. I watch the tide take the storms away, and when they come back, I’m still the shoreline, only this time- I can stand in the storm from a different vantage point from before, because I’m still the shore. Is that cheesy? I’m a cheese-ball, yall. I don’t care- this works for me, okay?
And remember- you’re never alone. People are healing all around you, including me.
Coming at ‘cha from the hospital break room at work today. If my photos are unusually ugly and my grammar is especially nightmarish, we are gonna still be friends, okay? Good. Real life:
Hope your weekend was restful and left you feeling rejuvenated! I went to (surprise, surprise) Dallas…again.
Our cousin, Chance, came into town, and we ran a 5K- his first ever race! He’s mostly a weight-lifter, but has recently been adding running to his workouts and is pumped about the mental clarity and energy it has given him (his words, not mine!). No matter the reason, I’m so stoked to have a new running partner!!
This was a FUN race at Fair Park, home of the State Fair of Texas and the Red River Rivalry between The University of Texas (hook ‘Em!) and OU.
I actually lost Chance before we even made it to the starting line (FAIL)…so we didn’t run the race together at all. I did find him on the course though, and I was able to wave from afar!
Just a cool course! Highly recommend both the Rock ‘n Roll Dallas 5K AND Half-Marathon. I’ve done them both, and they’re some of my very favorite courses.
We grabbed some post-run salsa-filled, Tex-Mex breakfast skillets at our new favorite- Victor Hugo’s on the patio and then headed out for more adventure at White Rock Lake.
Sophie is basically a famous little Dallas dog with the sweetest personality. We made frequent stops around the lake for Sophie to greet random admirers.
We had dinner at Saint Rocco’s Italian outside on the patio, and we loved the atmosphere, complete with delicious merlot and spicy shrimp scampi…but the small portion sizes left us feeling bummed. I do recommend for a fun date spot with a view of the city, though!
We ended the night watching Amazon’s “Sneaky Pete” and sharing cheesecakes from Eatzi’s. All around, a perfect weekend!
I’ve been learning more about Intuitive Eating (read the book awhile ago, and I wasn’t at a place in life to be receptive). Basically, I’ve been focusing on eating without stressing about food…because it’s just food at the end of the day, and food is nourishing. Letting go of the diet mentality has been challenging (e.g. not beating myself up over delicious cheesecake, but rather ENJOYING the mess out of it, savoring each bite, because I don’t eat dessert or dairy often, and it just tastes good regardless of any justification).
Part of intuitive eating and letting go of the diet mentality is realizing that diets DO NOT work for long-term weight loss (disclaimer: I have not YET had a class on weight loss in my nutrition education, nor have I personally ever dieted for weight loss, so I do not feel that I can confidently comment on dieting specifically for weight loss goals, but I will say: if dieting gives you structure, and you feel healthy mentally, and you’re feeling nourished and strong- GO FOR IT. But choose a diet that is sustainable and inclusive of fruits, veggies, and all the macronutrients that keep our bodies the capable, strong beings that they are!).
If I’m being honest- I struggle with the negative stigma surrounding diet mentality. Actually-I can’t subscribe to the “diets are bad” mentality, and here’s why: my personal experience(s) with doing the Whole30.
I did the Whole30 to eliminate foods that could cause inflammation, and since I have an inflammatory disease, I was looking only for non-scale victories: more energy, less frequent poop attacks (explicit version included-you’re welcome), and more painless, restful nights. Did I accomplish this in 30 days? Heck yes I did. However-I did NOT weigh myself before, during, or after the program (fun fact: I do not own a scale). After the re-introductory phase, I did not stay on Whole30 for life because that’s NOT how it is intended, and I refused to give binary labels to food such as “legumes are bad” because THEY ARE NOT, and if you walked away from the Whole30 with that mentality, you missed the point.
As an IBD patient who is chronically trying to navigate this chronic, autoimmune disease (ulcerative colitis)- I try to include as much variety in my diet as possible. Including- I drink alcohol on celebratory occasions. Hell, I even have cheesecake (even though there are rough consequences for dairy desserts for me), but I DO NOT feel bad/guilty/sad about any of it, because I really do feel like I have learned how to enjoy food for being food. However, I do not appreciate the damning of diets- simply because diets DO work for some people, and certain populations REALLY need diets (e.g. the Mediterranean diet has documented successes on heart health; ketogenic in treatment of epilepsy; renal diets for kidney failure patients; avoidance/inclusion of certain foods for IBD patients; gluten avoidance for Celiac patients, and the list goes on).
I’m just a girl trying to work her way though nutrition school, healing my gut intuitively, sometimes with a little help from the Whole30, or low FODMAPs, or another science-based elimination DIETS to figure out what THE HELL to feed my stubborn gut to make it heal. There are situations when intuition isn’t enough, and maybe that’s because Crohn’s/ulcerative colitis patients aren’t part of the general population. We are just a little bit extra.
Does all this make me an intuitive eater failure? Hey- I’m a work in progress.
I’m educated AF, and I’m here to learn, even if I’m not perfect; This bite of cheesecake sure is.
Is this the fastest year ever for anyone else? Just me? It’s flying by in a hurry!
I realized today that it has been five whole years since my ulcerative colitis diagnosis– woo! So much has changed in the last five years, and today I’m making a post about five obstacles that I have overcome and you can, too! But first, here’s a timeline of all the significant moments of life in and around an ulcerative colitis diagnosis:
-September 2012: Began experiencing severe symptoms (x-rated version: bloody stools 30x daily, loss of appetite, quick weight loss, fatigue, night sweats)
-October 2012: Diagnosed with “moderate to severe ulcerative colitis”- began remicade infusions, pain medications, steroids, and mesalamines to get symptoms under control
-January 2013: Tried stopping all medications and healing with holistic approach (without doctor’s permission) Stupid, stupid, stupid
-April 2013: Hospital stay for dehydration due to symptoms; back on remicade infusions every 8 weeks with steroids. Decided to stop eating red meat, fried food, processed meats, and cheese
-December 2013: GRADUATED from The University of Texas at Austin, despite pleas from family to take a medical leave of absence. My GPA even improved after a diagnosis.
-March 2014: First post-grad job, a night shift at a Houston hospital. Here is where I learned that I did not want to be a nurse but instead decided to pursue dietetics. I declined my acceptance to a post-bachelor’s nursing program and began scoping out dietetics programs.
-June 2014: 2nd colonoscopy revealed active and increased inflammation; diagnosis modified to “Crohn’s disease”; removed from night shift schedule and increased dosage of steroids
-March 2015: Registered to run first half-marathon and fundraise for cures to Crohn’s and ulcerative colitis; began talking publicly on social media about disease and realized that I could help encourage people through my journey with a challenging diagnosis.
-July 2015: Completed first half-marathon in Sonoma, California after fundraising over $3,900 for Crohn’s and UC research
-February 2016: Completed second half-marathon in New Orleans after fundraising over $2,500 for Crohn’s and UC research
-May 2016: OFF STEROIDS!
-July 2016: ENGAGED!
-August-December 2016: “Is remicade working?”
-January 2017: WEDDING!
-February 2017: 3rd colonoscopy confirms “ulcerative colitis” diagnosis, but with significantly less inflammation
-May 2017: REMISSION!
-October 2017: 5 years of ulcerative colitis diagnosis
Much has happened in the last five years, and I get bummed when I live through an experience and think, “why didn’t anyone tell me about this?!” which is why I [probably] tend to overshare on social media-you’re welcome. I believe that leaning into the vulnerability of real life challenges and sharing the experience with others helps create a community of empowerment. My life isn’t filled with bright, celestial light and like-it-to-know it worthy outfits (currently sporting dirty high-top converse and yoga pants); my life is peaks and valleys, a balancing act of chasing chocolate chip cookies with probiotic green juice and just trying to stay the eff in remission while I navigate life as a normal twenty-something year old newlywed while remaining a girl boss in organic chemistry. My life is far too much to pretend that it’s instaperfect.
Okay, I’ll stop rambling. Here’s five obstacles that I have overcome with ulcerative colitis:
1. Fear of pain. I remember freaking out as a child every time my mom would take me to the dentist, “Will it hurt?!” Grown adults still ask me this about colonoscopies
(No, Debra, you’ll be fine).
I honestly go into procedures/infusions now knowing that at some point I WILL feel discomfort, possibly even pain, and I don’t even care. Pain is temporary, even if it doesn’t feel that way. P.S. The most painful part of the infusion is the end, when the nurse takes the tape off. Think of it as a nice little wax job.
2. Fear of needles. Before UC, I would get so nervous to have by blood drawn annually at my physical check-up. One time I almost passed out. But I realized quickly that I would be seeing a lot of needles after my diagnosis, and I needed to woman-up and get brave. Now I can look at needles all day long- no problem. I don’t even care if the nurse has to try four times before hitting a vein, that looks like hard work anyway.
Pro tip: If you ARE afraid of needles, don’t look at the needle when your nurse is trying to thread it, because this triggers a fight-or-fight response from your sympathetic nervous system and your veins vasoconstrict, making life more difficult for you AND your nurse. Also be sure to hydrate well the day BEFORE a procedure so your veins are happy, plump and hydrated.
3. Being my own advocate. If you know me, you know that I have a soft voice, AND I have a resting nice face which means that everyone smiles at me all.the.time. Strangers frequently strike up a conversation, like we’re old friends. My naturally semi-extroverted self is STOKED to have these encounters, but because I LOOK so.damn.friendly. it’s a real challenge for people to take me seriously. When the nurse says “let me check on the order for your medication” I take notes of who I spoke to, when I spoke to them, and then I call back later that day to make sure that homegirl actually checked on the order as promised. People get busy and forget, but my body isn’t going to forget that it needs an infusion to function. If I show up to an infusion appointment only to find out that an order had never been written and insurance had never been contacted for prior-authorization, I WILL craft an email to the head of the infusion center, call my doctor, or show up in person with an order ready for him to fill out and sign. Whatever it takes, I leave my dignity at the door, and I fight. It’s too easy to get lost in our American Healthcare System, so go to bat for yourself. Take good notes, talk to understanding people, and make your case sound.
4. Hair loss. Many, many people experience hair loss; it’s just part of life. I could write an entire post dedicated to “How to make your hair healthy after you’ve been REALLY nutrient depleted and it thins and falls out and breaks off in clumps and makes you cry really hard in the shower but it’s going to be okay, Stacey- IT’S GOING TO BE OKAY. YOU’RE OKAY.” Honestly, hair loss was a tough little challenge for me, and friends and family members were so kind about it “I can hardly notice”. My older sister bought me expensive, old man hair growth shampoo- bless her. But to me, hair loss was an outward expression of how desperately unhealthy I was on the inside, and it was hard to wash my hair knowing that I had balding spots, and I could feel it thinning by the handful. In retrospect, it could’ve been so much worse. I wasn’t bald! Let’s review:
5. Health is comprehensive. Being healthy has been another challenge, but I FINALLY feel like I’m getting it down. In college I stressed and slaved so hard over science courses to get into nursing school, and I sacrificed quality sleep and my diet suffered (but isn’t that the tale of so many college students?)
Post-grad I learned that I felt better when I was physically active, and I started sleeping more. I now feel like I’m balancing sleep, productivity, physical movement, spirituality, and time with people I love better, and each facet is an integral part of overall health. Taking care of myself is getting easier. Three cheers for adulting!
If you’re dealing with a diagnosis, managing a disease, or you just feel like you have a one-way ticket to Struggle City, USA, know that I’m here to help you feel like you’re doing a thing, and you’re doing it better than you think. Life is a continuum of learning, and if we can manage to learn together…well, I’d say we’re doing something right.
Here’s to five years of learning and living! Hope your day is a good one! 🙂
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.
Today started off with a phone call from my neighbor.
“Are you Jaxon’s owner? He’s in my living room.”
Silly me-thinking we had a morning routine, especially on gorgeous days like these.
Jaxon normally likes to do his business and then sunbathe when it’s a warmer day, just for about ten or twenty minutes, and then he comes to the back door when he’s ready to come back inside. But today, he decided that he needed to explore beyond his monstrous back yard and travel WAY down the street to the neighbor’s house. Thank goodness for dog tags.
Also thank goodness for friendly neighbors, because I’d be lost without my Jax. 😦
Last night’s run was slow, but it was good. I bought these New Balance shoes awhile back, because they felt so good when I got fitted for them, and I do like them. But my all time faves are still my Brooks Launch 3’s. I also can’t do a run without water. It doesn’t matter if it’s only two or three miles- girl needs her H2O. I’ve tried to train myself out of it, but it’s not worth it to me.
My absolute favorite part of running is exploring, and since I’m in a new town in a new state, each run has taken me on a new adventure.
I felt like I was trespassing here, so I didn’t cross the bridge. Maybe that makes me less adventurous than I thought? Oh well.
Check out that sky magic!
When I got home, I spent some time planking and doing some light abs. I was short on time, but I felt accomplished. It’s so, so tough to get back into movement sometimes…
But it’ll be worth it; it always is.
Reminder: If you’re feeling sluggish and heavy on your runs, push through. Sometimes Most of the time, the first couple of miles are the hardest. It feels like you’re learning to ride a bike without training wheels for the first time, and your feet feel heavy, and your legs feel uncoordinated, and your breathing feels all off. Just keep going. Your body will find its rhythym, and soon enough you’ll forget how uncomfortable you were.
Then our friends picked us up for “burger night”. There’s a place in town that has half-price burgers on Wednesdays, and we have gone religiously for the past three weeks.
I always get a chicken breast with avocado and sweet potato fries. This is my favorite beer currently, and if you’re a fan of sours, you’ll love it too. <- sounds like I know what I’m talking about, but really I have no idea. I just know that this is “yummy”.
And today’s breakfast smoothie snack was really just too good not to share, so here’s a “pick-me-up smoothie”.
I know you’re probably like, “This girl loves the crap outta some smoothies.” <- Not untrue, but I am also taking a protein prescription from my doc to help my immune system, and I have found this has been the easiest way to hide it in a breakfast snack. Normally, I’d scramble myself eggs or make an omelet for breakfast…but since life has brought me here for now, a recipe:
Pick-me-up Morning Smoothie
-1/2 cup coffee
-1/2 frozen banana
-1 cup (lactose free yogurt for Low FODMAP), or yogurt of choice
-1 handful of greens
-2 tbsp pb
-dash of cinnamon
-1 scoop chocolate Vega Sport protein (1/2 scoop if Low FODMAP)
-1 C ice (add this last if the coffee you’re using is still hot)
Blend, serve, and enjoy 🙂
Pro-tip: Top with 1/4 C granola, and thank me later.
* you’ll notice that I like my smoothies THICK, because I like to eat them with a spoon, so it feels like I’m EATING. Feel free to add more yogurt and ice to make it creamier, or use less ice than I recommended to make it more watery, depending on your preference.