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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So…You Want to Be a Registered Dietitian Nutritionist?

So…You Want to Be a Registered Dietitian Nutritionist?

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!

^Texas Medical Center in Houston

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.


Friendly Reminder about Healing

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.



Feelin’ Myself on a Monday Morning

Feelin’ Myself on a Monday Morning

I keep reading books written by entrepreneurs, listening to podcasts by the greats like Oprah, and they all talk about taking control of your morning.

I’m not going to lie. There are some days that I don’t have a handle on things. I’ve been fighting through and sitting with depression and anxiety, and I’m not quite out of the hole and done healing just yet. On the bad days I am giving myself permission and grace to just have a bad day, pure and simple, free from guilt, and if that means that I need to sleep through the morning, or spend all day watching “How I Met Your Mother” re-runs, so be it.

But when I’m on my A-game and feelin’ like myself…I love the mornings. The whole world feels like it’s mine in the morning- unbothered by busy traffic, lines at coffee shops, or the sound of my phone going off. I love the gold light tones of the morning sun, the sound of the birds, and I wake up pretty damn chipper most days.

I have realized that it doesn’t take much to make me feel centered, but I understand what the greats are talking about…having control of my morning makes me feel empowered, fierce, beyonce-like, and ready to conquer the day.

What makes me feel centered and 100% myself? Oh- glad you asked.
music in the morning. Good stuff, like Creedence, Frank Sinatra, or lately I’ve been into Bob Seager (old soul here)
coffee– just a cup, maybe 12 oz if I’m feelin’ like I need a divine intervention. Pretty sure my resting heart-rate is something similar to a hummingbird’s, so I don’t over-do it.
movement. I’m a movement in the morning kind of person- but I understand that not everyone is like that. When I say “movement” I don’t mean crossfit- that’s not true to me, and I get stressed when people are yelling at me to move. I mean walking my dog, doing yoga on the back porch, hitting up a quick barre class, or going for a solo run.
stillness. Headspace app- thank you, Jesus.
creating. I need to write in the mornings. I need to journal, or blog, or hand-letter the shit out of something motivational, but I must create to feel 100%. If I have nothing to give, then I need to read something positive and fueling to my brain.
food. colorful and flavorful, sometimes in the form of a smoothie.

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Pictured above is my vision board in my home office/home gym/ bathroom. It’s a multi-purpose room, but I still set some real, attainable intention. I wrote affirmations that force me to look at them daily, and I printed out photos that remind me of who I am/want to be more of, goals, reminders, etc. If I don’t have visual aids to remind me to set intention and live my fullest freakin’ life, then I’m not sure if I’d remember to do it, and this helps me.

I also realized that I hate fake plants, but I’m keeping the guy anyway for now, because I’m not quite at a place in life where I can nurture a real plant hanging on my wall.

How do you set intention? What brings you back to feeling like yourself?

Austin Half Marathon Race Weekend

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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Some Things about Crohn’s

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

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

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

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

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

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

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

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

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

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

*clears throat*

I AM NO LONGER ON INFUSIONS.

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

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

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He was not thrilled about the paparazzi pics…clearly

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

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

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

 

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

Thanks for your support, friends! Any questions?

Keep moving forward!

 

Stacey

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

 

 

 

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

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.
(Sidenote: I had an epiphany that I may not want to work full time as a clinical dietitian after all)

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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