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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Where I’m headed in Nutrition

WUFF LAWDAMERCY School has been BUSY lately!

How have yall been?

Something on my mind lately- to be honest, it’s a little existential. When I first started my master’s program in nutrition to become a registered dietitian nutritionist (RDN), believe it or not…I had no desire to become a healthcare provider in the realm of GI. At all. No gastrointestinal grossness for me, please and thanks, especially with being a patient and all. NOPE. Hard pass.

But then.

I kept getting mad, honestly. I was mad that IBD and IBS were constantly categorized as one and the same- it would be like telling someone with type 1 diabetes that it was just like type 2. And then I got mad once I realized that we constantly fail our patients by giving them micronutrient infusions but then not ensuring they’re accessible….aka, “medically necessary” by insurance companies…aka Susan needs an iron infusion, and now she’s slapped with a big ass bill, because her insurance company isn’t covering it since it’s not a “medically necessary” pharmaceutical, so Susan stops her iron infusions short, and now we struggle to get her healed timely and optimally. I feel like as healthcare professionals we are stopping the care short by not ensuring that it’s extended and accessible for healing. ugh. Makes me…mad.

And then.

I started learning about energy nutrients (aka biochemistry for food, which sounds boring and disgusting, but meet mega-nerd Stacey. She loves this shit). I learned about all the different parts of the GI tract, where food is absorbed, how we can enhance bio-availability of certain nutrients by pairing them with others. And oh no- I liked it all.

What I’m saying is…I have decided to write my thesis over nutrition in Inflammatory Bowel Diseases (IBD), and I want to work with medically complex cases- GI diseases and the like… in the worst way. I need to think really hard, and GI diseases are tough to treat. They’re fascinating (I say this as a patient!) and terrible (see? still a patient!), and nutrition support is so, so crucial.



I also still want to write nutrition articles for endurance athletes for magazines. Ever since Andi Anderson on How to Lose a Guy in Ten Days, I can’t seem to shake the dream of working for a magazine, and I refuse to let my adult self out-grow that junior high school daydream. And I also want to consult for MLB teams, and I don’t care who you are; I can out-baseball talk you any day. Unless you’re a Yankees fan, in which case I doubt you’re a real fan of the game and would venture to guess that you’re only a fan of winning, and I can’t say that I blame ya…but boy, bye.
xoxo love ya forever, Houston Astros.

But that’s the cool magic of the nutrition field. I’m going to be able to piece-meal my career together so it doesn’t fit a conventional, boring mold.

All this has me thinking…oh boy.
In October 2012 when I was handed my diagnosis of moderate to severe ulcerative colitis, it’s like a new life began for me. My thought process shifted, and I became more tender, softer, empathetic, stronger, thicker, resilient, and driven. I 100% do not believe everything happens for a reason, but I’m oddly thankful for an unfortunate diagnosis forcing me to be a vulnerable patient in a flawed heath care system. If I can’t change it, I deeply hope I can bring some light to it (I’m not entirely naive here; I’ve worked in healthcare- just hopeful).

And in the meantime, I’ll write a boring thesis that asks thoughtful questions and has a few hopeful answers for the future of GI diseases.
I’m excited.

And I’ll be rooting for the ‘Stros.

And for you!

-Stacey







^Post Hurricane Harvey at Houston Methodist Hospital

P.S. Posting pictures of Houston like I know where I’m headed…but I HAVE NO IDEA where I’m headed. Just along for the ride!


Friendly Reminder about Healing

Healing is.not.linear.

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.




Austin Half Marathon Race Weekend

Man oh man. It felt so damn good to be back in Austin.

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I have been reading “The Alchemist” (I know- I’m late to the party), and it has me lookin’ for good omens. On Friday, our first day in Austin, we ran into the UT baton twirler from when we were students who was TWIRLING OUTDOORS in this very spot. You guys. It was an omen.

I taught baton twirling in college, and I was maybe her biggest fan. Twirlers are a rare breed, and we literally ran into her, and then stopped to talk to her. Made my day. As weird as that sounds, it was an omen. Not sure what it meant, but it was a good sign- promise.

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We happened to be in Austin for two reasons:
1. Hope! She’s a friend that I met on instagram, and she flew to Texas to race.
2. And race we did! Pictured above, we were at the Austin Half Marathon expo on Friday.

Then we ate. That’s actually what we did the majority of the weekend, but I need to give special thanks to:
-True Food Kitchen
-Picnik
-Hank’s
These places were especially kind about my dietary restrictions, and the food was incredible.

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True Food Kitchen was so enthusiastic to help with my food restrictions. ENTHUSIASTIC. They didn’t make me feel like the difficult customer that I hate to be, and they were fantastic. They helped me craft my own menu item to suit my weird dietary needs, and I left feeling great knowing that the food didn’t contain the stuff that my autoimmune disease won’t let me have right now. If there’s something I can learn from this experience it’s BE KIND to the wait staff, and gently explain/advocate for yourself. Be vigilant. But be gentle, and people will bend over backward to help you and your health.

It was breezy and 80something degrees. We walked back across the bridge to the car and called it a night. Austin, ya look good.

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On Saturday, we ate at Picnik for brunch after a warm-up run, and had a very similar experience to True Food Kitchen- everyone was so helpful. Then we took Hope to see some touristy sites, like the Loop 360 Bridge overlook.

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And stayed hydrated via Juiceland. Pictured here: “The Rehydrator”.

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Sunday morning was race day, and it was a cool, crisp 55 degrees at the start on Congress Avenue. The first three miles were gradually uphill, but we were on South Congress, and there was live music. No complaints! All four lanes of the road were open for runners, so even though the start wasn’t in waves, there was plenty of room. I never felt crammed.

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I HIGHLY recommend running Austin without headphones- there was live music EVERYWHERE, and I loved the course. I stayed hydrated via my own sports drink: water, lemon juice, lime juice, and salt. I brought along banana slices with a smidge of peanut butter and rice cake in my spi belt for fuel once I got to mile 9, and it was perfect. I had previously been a tried and true gatorade gels fan, but I recently discovered that I’m sensitive to the dye that’s on the ingredients list (womp womp), so I have been DIYing my fuel instead, with great success.

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I wrote a positive mantra on myself for the race. I NEEDED this around mile 10 through the finish line, because those hills weren’t playin’. I ran this race because I paid for it, and I love to run. I love a good race- I do. But in all honesty, I had no business running. Let me tell you why:
– Shingles! I had the shingles virus, and while it was (almost/mostly) gone, my energy levels were NOT up to par.
-Symptoms. I had to go off my immunosuppressants to try to heal my body quickly from the shingles virus, and my GI situation was very touch and go.
-Training. My training for this race was very lacking.
-Rest should’ve been priority. Shingles + GI + a rough week of tests in grad school calls for ample rest, and 13.1 miles wasn’t ideal.

If you’re strugglin’- solidarity! One foot in front of the other, friend.

Am I glad I did it though? Shoot yeah. Can’t you tell? Honestly- I had the most fun.

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Hope had a really great race though! A new PR for a half!

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And Zack was at the finish AND a cheer station at mile 9.

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Afterward, we all went to Hillside Pharmacie for brunch, and I inhaled my breakfast and coffee so fast. We sat outside and the wind was COLD! But we had the very best time.

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If you’ve never been to Austin, you should definitely visit, but don’t move there. I’m planning on moving back one day, and there’s really not room for all of us to play.
Sorry not sorry.

Highly, highly recommend running the Austin Half Marathon. The more races I run, the harder it is for me to pick a favorite, but this race is up there. It’s not a fast course- very hilly, but the crowd is great, the live music is unbeatable, and there’s no place I’d rather run than under the sun in Austin on a 55 degree Sunday morning.

Keep moving forward!

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5 Major Life Updates! Spoilers: Admitted to grad school & the hospital

Hi, Friends!

You may have noticed a few cosmetic changes on the blog (or not)- I’m working on creating a cohesive brand, and I’m an all-over-the-place kind of person, so please bear with me!

A few major things have happened since we last chatted. I’m going to start sharing blog posts more consistently now that I feel that I’m in the right headspace/ schedule to do so, and I’m pumped about it. For now, I’m going to catch you up on my life stuff.

  1. Grad school acceptance. Ya girl is finally done with all the biochemistry and organic chemistry and gonna be a registered dietitian nutritionist…soon! This has been many years of behind-the-scenes work while holding full-time jobs, and I couldn’t be more thankful to be here! Classes start in August.

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2. Another trip around the sun

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And I am so grateful! My sister came to town for celebrations, and she brought my dog niece Sophie (pictured above)!

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We went to brunch at Kitchen No. 324 here in Oklahoma City, and it didn’t disappoint.

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I had the avocado toast, and it was so good that I felt it deserved a spotlight in this life update.
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In 8 years of dating and 1.5 years of marriage, this is the FIRST summer that Zack and I are TOGETHER in the same house. WOW.

3. Hospitalization
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3 days of nonstop vomiting after an infusion resulted in a few days worth of electrolytes in the hospital. Not pictured: emergency colonoscopy (glamorous), which resulted in a Crohn’s? diagnosis, as opposed to ulcerative colitis. Not entirely sure though. Good news: Scope showed that I am CLOSE to remission again; there’s hope! On another positive note, this hospital stay was the most consecutive time that Zack and I had spent together probably since our honeymoon, which was nice despite the circumstances. Life is crazy.

4. Consistent movement: Since my hospitalization, I laced up and ran a 5K just because it felt good. Not pictured: yoga and barre a few times weekly, which keep me grounded during the crazy work weeks in the trauma O.R.

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I looked back at a ton of my old posts this weekend, thankful for the progress that I have made in a couple of years. I harped, “Doing is better than dreaming” and “Actions speak louder than words” and “You may not feel like moving, but keep moving forward” and A LOT of times, these words were written for myself as I sat paralyzed by anxiety from my couch. Since January, I haven’t stopped running/yoga/barre/moving, including walking the dog a few times weekly- even when I haven’t felt like it, just because I’d rather be out in the world uncomfortable (and often anxious) than sitting at home wishing I was out moving and shaking. I’m getting more comfortable with being uncomfortable, and I’m living a full life that resembles the life I actually picture having for myself. If you’re battling anxiety, know that you WILL learn to tame that dragon; just give it time. I’m no therapist, but doing new things, and doing things that make me uncomfortable have empowered me.

5. Crohn’s and Colitis Advocacy. 
Still fighting! I’m meeting soon with a state rep about the allocation of federal funding in an attempt to offer a patient’s perspective of “Hi, this sucks and we need to do better because we can.” With the help of the Crohn’s and Colitis Foundation, I’ll also be leading a much-needed adult IBD support group here in OKC. We are still working through the logistics, but we are looking for things to kick off in September.

Thanks for hanging in there with me, friends!
I’m so stoked to have the support that I have!!! I am creating useful, good things to leave you feeling less hangry and more amazeballs, and I can’t wait to share it all…very soon.

Keep moving forward. 
Really, no really. 🙂

Stacey


Weekend 5K & Being an Imperfect Intuitive Eater

Hi, Friends!

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.


Dallas Weekends

Hi, Friends!

Hope you’ve had a great week! Happy FRIDAY! I’m writing from the cutest coffee shop that I’ve ever visited, Murray Street Coffee in Dallas.

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This place feels very neighborhoody with a bohemian/Scandanavian flair, but I was greeted by a barista who affectionately called me “darlin'”. Still in Texas. If you’re in the mood for some warm coffee on a nice day and happen to find yourself near Deep Ellum in Dallas, come pay this place a visit.

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^this was TASTY, but I could only handle so much salmon and onion before feeling like I was suffocating from my own horrid breath. g-l-a-m-o-r-ou-s

This morning I had a check-up at the gastroenterologist in Dallas to review my blood work from the last few weeks. Things are looking great! I’m mildly severely anemic from this last flare up and will require iron infusions, and I couldn’t be more grateful to still be progressing. I know that healing isn’t linear (my gawd has that lesson been hard to learn over the years), but I’m thankful to have been able to keep doing the things I want to do: sleep, yoga, running, cooking, maintaining what little of a social life I do have. The life stuff has helped me heal.

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Last weekend we drove to Dallas (seems to be a theme lately) for my sister’s 25th and celebrated her the best way we know how: with the dogs!

We went to E Bar for fajitas, margs, and queso (all of Lindsay’s favorites), and I instantly remembered why I love this place: They give EACH person at the table their OWN bowl of salsa. I eat salsa so furiously and with such intensity that I almost need to ask for my own salsa anyway. E Bar gets me.

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Saturday we woke up and brunched (another Lindsay fave). We went to a highly rated bungalow called Johnson’s in Oak Cliff, but the wait was out the wazoo, and Victor Hugo’s was literally right next door with an open patio on a perfectly sunny day.
We made the right choice.

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The brunch prices were reasonable; the food was delicious. I ordered a Mexican scramble thing with lots of spice and veggies under sunny-side-up eggs and ughhh so gooooooood. HIGHLY recommend Victor Hugo’s for their patio brunch on a sunny day; not sure why Dallas keeps re-visiting the crowded next door patio and leaving this place completely empty…but it really worked out in our favor!

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Afterward we headed to Community Brewery for a tour and quality time spent at picnic tables with friends and pups. The beer here was so great! We hated it so much that will be back tomorrow morning for yoga.

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^ I tried this red lentil pasta from Trader Joe’s this week, and it was great! I recommend! Lentils are an excellent source of protein and magnesium, and I’ve been trying to get more magnesium in my diet to help with muscle function and recovery since I have been moving more. I paired this with sautéed garlic, onion, mushrooms, and chicken, simmered with some red peppah and organic marinara, although the protein content in these bad boys is sufficient enough to not necessitate any animal protein with it. Easiest meal evahhhh.

I gotta keep this post short and sweet so I don’t get spanked by an upcoming biochemistry exam. Prayers and good juju are greatly appreciated. Don’t ask me how many times I’ve had to memorize the effing citric acid cycle- it’s a rough topic these days.

Hope you have a lovely, restful weekend, friends! Enjoy!

-Stacey 🙂

 

 

 


8 Simple Rules for the Aspiring Marathoner, as Told by a New York City Marathon Finisher

Hi, Friends! Hope y’all are having a wonderful week.

Today’s post is guest-written my friend and fellow UC warrior, Lizzy! She’s a recent first-time marathoner, and in case you were thinking about signing up for 26.2 miles, you get to hear firsthand advice and race recaps from a finisher of the New York City [freakin] Marathon today! So from one friend to another, here’s Lizzy :).

Oh- and if you can’t get enough of her, be sure to check out her blog HERE!

Hello, Internet Friends! My name is Lizzy, and I ran the New York City Marathon on November 5th. What?! It still feels so crazy whenever I say that out loud. I’m comin’ atcha today with my experience, things I learned, and key takeaways for those of you crazy enough to consider doing 26.2.  Hopefully I can give y’all a little bit of a better idea about what to expect when training for a full marathon.  Let’s dive in, shall we?

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1. Why did you decide to run the NYC Marathon? 

One of the biggest responses I faced when telling people I just wanted to do a full marathon (knowing I’m a slower runner) was “Well, why even run a marathon if you’re going to be out on the course for that long?” Fair enough. I’m a slow-poke runner.  But, I actually chose to do the race for a special reason, that had nothing to do with my love for running.  In 2014 I was diagnosed with Ulcerative Colitis. The diagnosis came after almost a year of questions, miserable symptoms, an incorrect Crohn’s Disease diagnosis, and four different doctors and specialists. Stacey shares a similar diagnosis to me, which is how we met originally. Getting diagnosed with a form of Inflammatory Bowel Disease is really tough on a number of levels, but one of the hardest pieces is it’s effects on your physical ability and energy. When you are flaring, you have close to zero energy. It is so, so hard to bring yourself to do anything physically challenging because your body is working so hard to keep itself healthy. I did not choose to run a marathon because I thought it would be a *fun* challenge. I chose to run a marathon to prove to myself that UC will not limit me in every aspect of my life.  This is why I originally started running 3 years ago; to show UC who’s boss.  The NYC Marathon was offered as a race through the Crohn’s and Colitis Foundation’s Team Challenge program—where you fundraise for the Foundation and train for a marathon at the same time. I’ve done several half marathons with this organization before and they are a BLAST.  This felt like the perfect way to tackle my first 26.2!  I signed up and immediately hyperventilated.  I felt like I’d bit off way more than I could chew!

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2. What did your training schedule look like, and how long did you train? 

My training officially started in June of this year. I ran three days a week, cross-trained twice a week, did strength training one day a week, and took one solid rest day.  There are so many different training plans to follow, and I felt like three days of running was plenty for me.  My cross training consisted of low-impact activities (I usually flip-flopped between swimming/aqua jogging, the elliptical, and spinning), while my strength training was more focused on full-body movements that built up my core and lower body muscles.  For some context: I was returning to running after an injury I sustained last fall—so I needed the extra days of cross-training to make sure I didn’t re-injure myself. Thank goodness for my physical therapist. 

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3. What was the most difficult part of your training? 

The training itself was really, really tough. I felt like I turned down a lot of opportunities over the summer because I was so focused on my training schedule. Then, to add another layer to the crazy, I auditioned and got a part in a musical that was occurring in mid-November. Add weeknight rehearsals on top of marathon training, and I felt like I hadn’t seen my friends or live-in boyfriend in three months. Ack! The time-suck is easily the worst part of marathon training. You have to mindfully plan your time, and this can be kind of a buzz-kill. Spontaneity wasn’t something I could really afford myself this summer and fall. Training is really a part-time job. 

4. What were you most nervous about? Advice?

The day of the race was next-level. I was so, so nervous.  There was a lot of excitement, too. But mostly nerves. I knew I needed to trust my training, but I was feeling a bit discouraged because of what my time goal was. I wanted to finish around the six-hour mark. Listening to others at the start who’s goals were two hours shorter than mine was tough, I won’t lie to you. It messes with your head a bit and made me wonder if I was really cut out to do this.  But, I was excited to deliver a big “eff you” to Ulcerative Colitis and prove to myself that I could finish.  I’m happy I went in with that attitude, because the race exceeded my expectations. The crowds were so supportive, and it didn’t matter that I was running with the six-hour pacer. There were so many of us in the back of the pack! I wish that I had seen more stories about slower runners before I attempted this—there are a lot of us!  The energy was infectious and for the first 19 miles, it didn’t matter how slow or fast I was. I fed off the New York energy and felt like a total rockstar. Running these larger races can do that to you.  It also helped to see family and friends on the course. I would absolutely recommend bringing a hype squad with you, especially for your first race. 

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My mom and her sign on the course!

5. What was your least favorite part of the marathon? Best part?

I started to have a really tough time right after mile 19. For whatever reason, my hip gave out. I had done all my training runs, I felt healthy going in—it just goes to show that sometimes things don’t go as planned.  I tried to run a little bit, but I ended up having to slow down to a full walk (I had been doing a walk/run interval prior to slowing down) and that was really, really disheartening. It slowed my time down significantly, and put me finishing about 45 minutes after I thought I would. The last 7 miles were the worst for me mentally. After doing so well, having to slow down just as you’re about to hit the wall was not a fun feeling and I’m not going to lie—it was a struggle.  There were many tears and I considered just giving up.  But, all of this emotion was followed by one of my favorite parts of the whole race—at mile 22 a very nice lady in the Bronx offered me a slice of cheese pizza. It was exactly what I needed, and made me smile. I was able to stay positive for rest of the race. 

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6. Mental or physical- which did you rely on the most for this race?

What everyone says about the mental game of the marathon is true. It doesn’t matter how slow or fast you are, the most important thing is believing you can do this.  I bawled when I crossed the finish line. Physically, I was so tired. Mentally, I was spent. It was such a mix of relief/exhaustion/frustration/elation; it took me a while to fully process what I felt after finishing.  I was so glad to have finished, to have done it, to have shown my body that I could do it. No matter how hard it was, I did it.  UC limits me in a lot of ways, but it didn’t keep me from finishing my first marathon. And for that I was grateful.

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Me right after I finished, post-cry sesh!

7. Did you have a finish time goal in mind? If so, did you meet it?

Try to not have a set finish time in mind. Take it from someone who was told this—it is so, so hard to not go into something like this with a time goal. I had one, and I so wish I hadn’t. I think if I had gone in with the ONLY goal of finishing, I wouldn’t have beat myself up so much after I had to start walking at mile 19. I finished an effing marathon, and my concern for those last 7 miles wasn’t finishing—it was finishing quicker. That wasn’t fair to me, my emotional state, or my body at that point in the race. My biggest regret with this race is that I didn’t just try to enjoy the last couple of miles. I was positive, sure, but I was so anxious.  Besides the nice lady offering me pizza, I don’t remember a lot from the last 7 miles. I wish I had.

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THE BLING!

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8. What’s the best advice you can give to someone thinking of running a marathon? 

For those of you who are thinking of doing this, I have three pieces of advice: train well, stay healthy, and for the love of all that is holy, try not to go into your first race with an exact finish time in mind.  Train well so you feel confident going into the race. It’s ok to miss a run every now and then—I missed a long run about a month before my race and had to shorten it because of a bad cold.  This leads to my next piece of advice-STAY HEALTHY. You are not doing your training a favor if you run with the flu. Give your body a break. You know what’s best for you. I’m glad I shortened that longer run with a cold, because I was able to crush my 20-mile training run the following weekend since I wasn’t sick. 

Give yourself lots and lots of grace while training for a marathon. LOTS AND LOTS OF GRACE. This is a massive undertaking. Surround yourself by people who support you and encourage you. Make sure you take your full rest day each week.  When that’s all said and done, ENJOY THE HECK out of the race and wear your medal for as long as physically possible. I’ve carried mine with me the last week because I’m so proud of myself. Wear your finisher’s gear. Own that pride. You just finished a flippin’ marathon! Will I do another one? Heck yes. But for now, a half marathon is still my favorite distance, and I’m going to give myself a break. I want to focus on staying healthy with UC. I also want to treat myself to a big ole’ plate of cheese fries. Priorities.

-Lizzy

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HUGE shoutout to Lizzy, for not only taking the time to write this post, but also for making marathons sound far less intimidating and attainable, even for us mere mortal slow-pokes who just wanna make a difference. You are an actual badass.

And now, I’ll dream of that mile 22 New York style pizza all the live-long day…

 


Ulcerative Colitis: 5 Years Later

Happy November!

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:

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Ten months before UC diagnosis

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One year after my diagnosis. I started parting my hair on the opposite side and got bangs to hide a bald spot. It worked!

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Three years post-diagnosis. I remember loving this picture because my hair looked like it was growing, even though it was wispy and thin compared to before my diagnosis, I knew I was getting much healthier!

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Five years post-diagnosis. I’ve never been this healthy, and I think my hair agrees. *flips hair*

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.

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5 years, 40 pounds, and a crap ton of life lessons in between. Pun intended…

Here’s to five years of learning and living! Hope your day is a good one! 🙂

-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