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!



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.

IMG_8113-2

2. Another trip around the sun

IMG_0240-2

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

IMG_0199-2

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

IMG_0200-2
I had the avocado toast, and it was so good that I felt it deserved a spotlight in this life update.
IMG_0210-2
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
IMG_0491-2
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.

IMG_0604-2

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


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.

IMG_7836-5

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.

IMG_7843-6

^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.

IMG_7749-5
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.

IMG_7715-3
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.

IMG_7717-5
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!

IMG_7742-3
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.

IMG_7778-5
^ 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?

IMG_8969

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!

IMG_8921

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. 

IMG_8927

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. 

IMG_8995

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. 

IMG_8929

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.

IMG_8940

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.

IMG_8946

THE BLING!

IMG_8943

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

734681_266381174_XLarge

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:

FullSizeRender-7

Ten months before UC diagnosis

FullSizeRender-8

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

FullSizeRender-9

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!

IMG_3926-2

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.

IMG_6392

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


Dogs & Health

This post is dedicated to those dealing with autoimmune diseases, inflammatory diseases, cancers, the flu, or the common cold. I hope this lifts your spirits!

When I was in college (against my parents’ wishes) I rescued Jaxon.

IMG_5573

Jaxon is some sort of maltese/poodle mix if I had to guess (Maltipoo?) and he’s deaf from being left alone outside for the first eleven weeks of his little life. The vet’s best guess is that grass mites actually ate his ear drums- poor, sweet guy! He’s been deaf ever since.
(side note: I’m certain there’s a special place in hell reserved for people who are mean to dogs)

Thankfully, my roommates were all on board to keep Jaxon, so we took turns feeding him nutrients via syringe depending on who was at the apartment from class. Before we knew it he was making his rounds to all the college parties, occasionally even sneaking into classes and workplaces. On more than one occasion I was walking him through West Campus when a complete stranger ran up to us, “Jaxon!!!!” He was quite popular.

fiestajax

In the Fall of 2012 when I became sick and was diagnosed with moderate to severe ulcerative colitis, Jaxon slept on my face while I napped for hours at a time. He slept on my feet while I had symptomatic episodes from the toilet. He stuck his nose beneath the door when I locked myself in the bathroom. He knew I wasn’t feeling great, and he did his best to heal me.

FullSizeRender-1

And in a way, I really think Jaxon has succeeded in helping me heal.

IMG_1966-2

Honestly, he’s Mister Independent most of the time. His favorite spot is alone on the back of the couch. But if he knows that I’m not feeling well he sleeps ON my face, and I swear I can hear his concern. When I was worried about symptoms, he was there to try to calm them, letting me pet his soft fur all through the night while he curled up into a tight ball by my stomach.

IMG_3702-2

And now that I’m feeling much better he’s still careful to keep a watchful eye, making sure his people don’t wander too far:

IMG_4109-2
Just knowing my little furballer was at home patiently waiting to greet me after doctor’s appointments, infusions, procedures, or just a regular day made all the difference in the world, and I’m confident that he’s a big reason why I’m able to be the positive patient that I am.

 

fullsizerender-1

For more, here’s an uplifting article about how pets can improve your health. Do you have any experience with an animal helping you better manage your disease or condition? 

To find a pet rescue near you, click here! Hope you consider adopting whether or not you’re ill; pets have a way of changing your life for the better!

Keep moving forward 🙂 I’m rooting for you! (and so are your pets)

-Stacey

PetCareChoice.com


Save 80% on K9 Advantix Flea and Tick Medication


A Weekend in LaLa Land

Hey Ya’ll!

Hope your week is off to a great start! Thought I’d update you on some real life events:

We went jet-setting for a weekend…

IMG_5510

…to the City of Angels!

IMG_5503

We hiked to the Griffith Observatory after a quick breakfast at Roosevelt Cafe where they served copious amounts of avocado slices with my spinach and mushroom omelette, and not skimping on the extra avocado is my love language.

IMG_5538

Here I am modeling in unnatural poses at iconic tourist locations in an attempt to make Zack as uncomfortable as possible in public.

IMG_5498

The switchbacks on the trail were NO JOKE, and we got a decent little workout in during our short hike. California is beautiful.

What possessed us to go to L.A. just for the weekend?

img_5529-1.jpg

Football.

IMG_5523

at the Texas Exes tailgate at Exposition Park

The last time our Longhorns competed against the USC Trojans, we were the underdogs for the 2005 Nation Championship at the Rose Bowl. We were the underdogs for this game too, but we lost…

IMG_5536

IMG_5539-1

…but it was by one field goal in double-overtime. In case you don’t keep up with football, all you need to know is that my Longhorns have been sucking it uppppp for far too long, so I was quite pleased that we kept up with a top 5 ranked team. Hit me right in the feels.

That night we went for a live show at The Comedy Store on Sunset Blvd (where Robin Williams, Dave Chappelle, Steve Martin, and more got their starts!). Entry was free with minimum purchase of two drinks, so I ordered two hot and fresh out ‘the kitchen chocolate chip cookies and a water, naturally, because I’m seven years old. HILARIOUS. Crude and witty, my favorite combinations. I want to return to at least a dozen more shows.

IMG_5487IMG_5484

Then back to our quaint little bnb before a late brunch and a plane home the next day.

IMG_5543

Once we returned home reality set in and I had to continue fighting with my doctor’s office and the infusion center to get me scheduled for an infusion.

IMG_5587

Sometimes managing a chronic disease feels like a part-time job…Jaxon agrees.

After returning from L.A. I was about a week past-due for my infusion. I had been sending emails and making calls the week leading up to our trip whenever time at work allowed, but I had no luck getting anyone motivated to send a doctor’s order to my infusion center.

Basically my infusion center discontinued my drug, Remicade. “We no longer carry that drug because it is too expensive.” But no one bothered to let me know BEFORE my infusion, so I had to find out once I actually arrived to get infused and there was no order written for the new drug.

So after enough back and forth communication to make me lose my mind, I showed up to my doctor’s office with an order. “I’m not leaving this office until he signs this order.” All he needed to do was fill it out. DONE!

…But he didn’t fill it out correctly. To make a long story short it took nearly two weeks after my scheduled infusion time to get everything sorted, but finally I GOT INFUSED!

IMG_5590

I have fought for over five years to reach remission. I’m finally here, and I’ll be damned if I begin having symptoms again because of a flawed healthcare system and people who won’t do their jobs. Being your own health advocate requires that you raise hell from time to time as if your life depends on it…because it does, friends. It really does.

But I must give a shoutout to my infusion nurse. She was a heaven-sent angel.

The rest of this weekend was spent napping (because infusions = the best naps evahhh), getting pizza (because infusion days always call for pizza)…

IMG_5655-2

…and (sour) beer…

IMG_5658-2

… and more football at quaint neighborhood bars

(if you’ve never visited OKC, you should. It’s tremendously underrated).

IMG_5659

Hope everyone has a great week. Hang in there and keep fighting, all my fellow IBD and/or chronic disease warriors! You life is worth it.

🙂

Stacey

Top Deals - Save on Amazing Getaways on Expedia!


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.

IMG_2965-2

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

img_2961-2.jpg
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.

IMG_2736-3

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!

IMG_2946-2
^ How I celebrate/deal/rationalize/breathe

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

-Stacey

 


Why did I start running?

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

Why did I start running?

bayoutrail

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

fullsizerender

The day before my diagnosis

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

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

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

img_1115

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

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

img_1483

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

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

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

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

hkmtc

After my first 13.1 in Sonoma, CA

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

And today I keep running.

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

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

And it’s okay. Struggles are temporary.

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

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

img_1481-2

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

Why do you run?

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

Sincerely,

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

 

 


Weekend Recap + GF & Low FODMAP PB Granola Recipe

Hi, Friends!

It’s been a minute. Last week was spent juggling phone calls with insurance companies and doctors in between naps. I’ve been flaring hard, running to the bathroom 16 times a day or so and fighting to stay hydrated, so I was begging for the insurance companies to comply and get me infused. One phone call, the representative asked if I had tried a “generic” brand of medication, one that was “less expensive and less of a hassle than an infusion.” I’m not sure who gave insurance company reps a license to practice medicine, but GAH THEY SUCK. Rant over.

Finally, on Friday.

img_1115

Four years on this medication, and it’s losing its efficacy, but I’ll go for an appointment next week to brainstorm more solutions. But I am still SO thankful that symptoms have slowed down a bit since. PRAISE!

My parents came for the day on Saturday, and we took them to Torchy’s Tacos. If you live in Texas, Colorado, or Oklahoma and you’ve never been to Torchy’s, you should re-prioritize your life to include Torchy’s. My dad was pretty stoked about it. Then, they kindly took a “family photo” of us with our little house before they left.

img_1122-1

After my parents left, we drove to the lake and watched the sun set. Perfect ending to a day.

img_1133

Jaxon was thrilled to do some exploring. The little deaf dog is doing better at obeying sign language.

img_1126-1
On Sunday, I made homemade granola while we watched a healthy dose of Netflix.

img_1135
The very best part about this recipe is that it’s Low FODMAP AND gluten free (AND delicious). Recipe at the end of this post :).

Sunday was capped off with a four mile walk/run. Isn’t campus beautiful? I went to UT Austin, so this is a very genuine compliment coming from a rival school, where football is blood and life (even though we have been strugglin’). Really though. Such a pretty place for a run.

fullsizerender

The first two miles were rough. Getting back into it felt like my lungs forgot how to give me enough oxygenated blood, and I literally saw stars from being dizzy once I made it to the top of some hills. I fully believe that the first couple miles are the worst part of running. I decided to walk/jog the two miles home. My body is still working to heal from this flare. It felt so good to be out on the pavement again, though. My happy place.

As promised…

PB granola recipe:

img_1146

If eaten in a quantity equal to or less than 1/4 C, it’s low FODMAP.
-2 tbsp coconut
-2 C gluten free old fashioned oats
-2 tbsp pumpkin seeds
-1 tbsp chia seeds

-1 tbsp pure maple syrup
-2 tbsp melted coconut oil
-1/2 C softened PB

mix dry ingredients and wet ingredients separately, then mix them together. Put them in the oven on aluminum foil for 30 minutes on 350, tossing occasionally. Ta-dahh! Granola. My personal favorite way of getting carbs in the early morning

Hope you are having a great Monday, or at least find comfort in the thought of tomorrow being Tuesday 🙂

Keep moving forward

-Stacey