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.

 

 

 

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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

 

 

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 🙂

 

 

 

Lately

Lately

Hey, friends!

How on Earth have ya been?! I’ve been MIA, even through the holidays but not completely without good reason. Wanna catch up?

For starters:

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Is it gross to use an iPhone in a public restroom? Yes, yes it is. 

I started having a mega-flare around Thanksgiving thanks to my doctor’s office staff forgetting to send documents to the insurance company, resulting in the insurance company denying my remicade infusions (you know, the ones that my life literally depend on) and further delaying any forthcoming infusions.

The more time lapsed between infusions, life.got.real.

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A trip to the ER for dehydration in January, and I learned that hospitals no longer even carry my infusion medication because of cost, so that killed my hopes and dreams of receiving an emergency infusion. Back on the steroids we go (kicking and screaming- if you’ve ever been on the ‘roids I know you understand!). I called the doc to update his staff on my change in medical status/recent trip to the ER/weight loss from crapping blood constantly (sorry-x-rated), and received a “what do you expect us to do for you?” response, which resulted in me finding another doctor in.a.hurry.

My new doc was furious about my exacerbated symptoms to say the least (we are starting over, from ground zero and it is a lot of time-intensive, hard work). She prescribed me more oral meds to help my body not reject the infusion since it has been so long without the medication. Within three business days, the new doc had my insurance giving the green light for infusions for the rest of the year. MIRACLES! Ya girl finally got an infusion, only a month past due. But I won’t be without any future infusions this year. PRAISE HANDS!

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My new infusion center is located at my new doctor’s office in Dallas, three hours of a drive from where I live in OKC, but I don’t mind. My sister and best gal pal, Lindsay, lives in the Big D, so we make a fun sister weekend out of it. Here I am cuddling her dog Sophie while she’s at work, post-Remicade nap session and just after grabbing some juice from one of my Austin guilty pleasures in Dallas, Juiceland.

And if you know me, you know that infusion days= pizza days 🙂

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We went to Oak Cliff for some delicious pizza at Eno’s which was the cutest little area I’ve seen in a while (disclaimer: not all of Oak Cliff is this picturesque, but it’s on the up and up). We grabbed our pie to-go because, well, symptoms got in the way. And then we headed home to watch a healthy dose of Grey’s Anatomy and hang out with Sophiedog.

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The next rainy morning we went to a local barre class where we spent most of the hour huffing and puffing and laughing and feeling especially uncoordinated, then we headed to Mudsmith for post-workout coffee and conversation. I think Lindsay hated me a little for signing us up for barre (oops). Then I headed back to OKC for a biochemistry test.

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Which about brings us up to speed for this week! We had our first ice storm since I moved her a year ago:

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Y’all. I have never driven in ice. It was a big grown-up deal for ya girl.

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But I made it to work and back home all week just like a pro!

And today I wore sandals and a tank top to yoga class, because it’s sixty degrees again and life is good!

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I realize now that I should’ve allowed myself to be vulnerable and open during the depths of this past flare; it could’ve helped someone. When symptoms rage and I start to panic, I have a difficult time vocalizing and making sense of my thoughts. I even have somewhat of a guilty conscience for fear of sounding too negative and “debbie downer” but that’s real life! Chronic disease is a tough dragon to tame at times, but if you’re going through something similar, hang in there. Know that you may have to make sacrifices (e.g. sleep, meds, dietary changes, more exercise, eliminating stress, etc) but you and your health are worth it all.

I’m still not out of the woods; I am still fighting through symptoms, and if I think too much about where I’ve been and how it feels like I’ve taken three steps backward right now, I get bummed. But I’m not letting this flare get to me like the others, and I refuse to sit on my couch stagnant and sad (not that there’s anything wrong with that! Couches can be great for healing with a healthy dose of some Netflix, but it’s not what I need right now). For starters, I signed up for yoga (I’m really bad at it), but y’all, I LOVE it.

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The facility also offers barre and pilates, and I find it’s just the right speed to make me stronger without feeling like I’m having a near-death experience while exercising. I’ve also started running again.

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Self-timer took this pic after yesterday’s quick little one mile run because I felt strong. 9.56″ pace for a one mile up and down some little hills and over puddles of melted ice, and it was exactly what I needed. Starting from the bottom can be so scary and disheartening, but honestly. What is worse than being stuck at the bottom? Nothing. So I’m climbing my way up and up again, doing the things I love as often as I can, listening to my body, eating good food, trying new things, experimenting with new recipes, and finding joy in the journey.

Hope you’re finding joy in your journey, wherever you are! It’s so good to be back. xo

-Stacey

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P.S. These banana muffins are the stuff of dreams. Recipe is from Caroline’s Kitchen!

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

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.

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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.

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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.

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

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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.

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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:

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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.

 

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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

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A Weekend in LaLa Land

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…

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…to the City of Angels!

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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.

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

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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?

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Football.

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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…

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…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.

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

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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.

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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!

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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)…

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…and (sour) beer…

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… and more football at quaint neighborhood bars

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

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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

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