The Suckage of My Twenties

I consider myself to be a chaser of silver-linings. I’m not comfortable in the dark and twisty, and I’m not a super-fan of hangin’ out by myself, even though I am workin’ on it. I can mentally muster the strength to find the good in the bad most days.

For my twenties as a whole? NAH. Pass.

I’m 27. I’m fully confident to report that my twenties have sucked.
SO MUCH SUCKAGE.
The curated world of instagram, with the influencers and their crystals and their latte art, really wants you to know that life is rainbows, but I’m giving myself (and anyone else who needs it) permission: it’s cool if life sucks sometimes. xo. I mean- it’s not cool. It’s miserable.
But it’s common, it’s life, and you’re not alone in the suckage.

What do you mean by “suckage”?


hospital suckage^

Well- living below the poverty line, being sick, taking jobs that are (by the best stretch of my imagination) SHITTTTTTTY, getting acquainted with managing anxiety, realizing that bills just never stop (especially medical bills. like…I just paid you. Why do I now owe $500 WITH health insurance?!). GAAAAADDAMMMMMIT.

evidence of shitty job

I frequently thank God for the future. I also thank God for the present, but I mean… the future has GOT to get better. I thank God for prosperity, and I hang visual reminders and affirmations on my wall. I move my body, eat good things, do the right stuff, and the present is still hard sometimes often.
I thank God for now, strength, resiliency, but I get excited to thank God for future job stress, future co-workers, for future kids, and a life that I have worked hard for (please see: twenties).

In the shower, where I do my best critical thinking, I visualize my mornings that I’m excited to have:
– humid morning long runs earlllllyyyy in the morning, getting into my car: an International Scout with a “Save the Dolphins” license plate. I have to turn the wipers on briefly because of the humidity (I love sweaty, humid, morning runs). My Scout looks like a beach cruiser, and that’s cool because it’s very Stacey- so very me. We live in Texas, because that’s where home is for both of us.
– I get home, and my Zack is waiting for me reading the paper or listening to news podcasts (because he already does this. He’s an old man that I love). He’s overwhelmed about his job(s) in a good way. I tell him that I need to hurry and get an article published for Runners World, because a deadline is approaching. I need to get my morning conquered before I leave for another job/dropping kids off places, etc. WE ARE LIVIN OUR CRAZY DREAMS.
– I visualize our kitchen in detail. It has a huge island, and it’s functional. We have a few moments together before kids wake up (I can hear moms laughing at me, but it’s my future on the BEST day, okay?!).

And I thank God for all the steps it takes to get to this ^ morning. I daydream about it so, so frequently. So, so often. I know being in the present moment is important, but I am a big believer in vivid day-dreams. I’m holding on to this one until it’s a real morning. I promise to update you when it is, but I’m going to need you to be patient with me, because I’m currently in the thick of my twenties, simultaneously wanting them to be over and not wanting to wish time away.

Here’s to overcoming the suckage…one daydream at a time.

Do your twenties suck too? Did they? Did you survive them? HOW?
Do you daydream, too?


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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.



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

 

 

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 🙂

 

 

 

Mindful Movement, Trying New Things + An Honest Cyclebar Review

Hi, Friends!

HAPPY FRIDAY! Hope you’ve had/are having a pretty great week. This week has been a quick one, despite long days at work, and I’m so pumped about it because we will be jet setting for Dallas (again) this weekend to celebrate my sister’s 25th year of life!

Something that’s been on my brain lately is “mindful movement” and “try new things”. In my last post I mentioned that I had been taking barre and yoga classes, and I’ve been really enjoying them. I easily feel like I could be hooked for life. Barre and yoga break up the monotony of the work week and give me a challenge to look forward to after work before coming home and crashing. My body seems to be responding well to both yoga and barre (although they’re notably different), and I’m loving feeling stronger in my hips, legs, and abs, even mentally (thanks, yoga. namaste).

About a month ago in light of my “try new things” mantra, I purchased a groupon for Cyclebar classes. I had previously experienced Cyclebar as a charity event rider raising funds for cures to Crohn’s and colitis, and I knew that Cyclebar was a clean, welcoming place. When I happened upon a discount, YASSS GIRL! Sign me up! So here’s my honest, unfiltered review:

My first night at Cyclebar in OKC was a bit of a dud, but that wasn’t Cyclebar’s fault. I was INCREDIBLY symptomatic, but I desperately felt like I needed to move my body. Unfortunately, I was legitimately concerned about the real possibility of crapping all over myself and the bike and causing a scene, so I didn’t push my body very hard at all…but it was so nice to move. Since I have been feeling better after my infusion, I thought I’d redeem another class purchase, and I headed to Cyclebar yesterday evening after my twelve hour shift at the hospital.

First thoughts:
“Is it 80s night? Did I miss the memo about the blue eyeshadow and the leotards? I definitely did.”
The studio is bright and clean, full of fit and friendly faces, and there’s chilled filtered water with a spread of bananas and free glow-sticks welcoming me. I grabbed my size 6.5 black leather complementary cycle shoes, filled my water bottle and headed to the dark “theatre”.
I hopped on my bike and slowly started pedaling. This particular class had a d.j. and I was genuinely offended that he remixed Michael Jackson. Who DOES that? I managed to forgive the d.j. once he played some Sublime and Nirvana, sans remix.
I know what you’re thinking: Sublime and Nirvana aren’t 80s? I know. I know.
I feel old and thoroughly confused about the leotards.

I REALLY enjoyed the instructor. Katie was her name (I think). She gave just the right amount of motivation without sounding like an irate drill-sargeant. I spent entirely too much time wondering how she managed to get her fishtail braid so gosh darn perfect.

I felt like I kept up with the class fairly well, making sure that my resistance on the bike was within the recommended ranges as instructed by Katie. It took me a hot second to realize that I should’ve been aiming for higher RPMs, because I mistook that recommendation for another reading on the monitor and oops…oh well. My quads were burning, my heart was pumping, and I was sweating like a very fat man in a very hot and crowded room.

My sweat towel dropped on the floor, but I can’t reach it. My feet are strapped in, and I can’t get them out.

Mid-class:
BORED SO BORED.  30 minutes in and I AM STILL ON THIS EFFING BIKE.
Epiphany: cycling isn’t for me.  I think in my earlier twenties I thought that I needed intense, push-it-to-the-limit workouts, but I don’t feel like I need that right now, and I get a special kind of anxiety in a dark room with really loud club music while my feet are literally strapped onto a bike that I know I am too clumsy to actually appreciate.
I notice the discomfort concerning my feet being strapped in is crescendoing into full-blown panic, and about that time, my calves and feet begin to slowly, ever so slowly, cramp.

By the end of the class both of my feet and calves are completely cramped- definitely should’ve had more water in the last 24 hours.  I can’t get my feet off of the darn bike because of the shoes being clipped in, so I just decide to leave my shoes in the pedals. Screw it. I un-velcro myself to sweet, sweet freedom, and I hop off the bike to stretch with the class. My shoes are still pedaling along slowly on the bike without me in my periphery.

After we are done stretching, I drop to my knees and physically wrestle with the pedals and the shoes. I know what you’re thinking: it really can’t be that hard to get the shoes unclipped, Stacey. And I agree. It shouldn’t be this hard. CLEARLY I AM DOING SOMETHING WRONG. Brad (not sure if that’s his name) comes over about that time and helps me unclip my rental shoes from the bike pedals, smiling patiently.
“Oh I see! So it’s just like skiing?” I say.
“YES! Exactly- it’s just like skis!” Brad concurs.
But in real life I have only been skiing twice, and I can’t even manage to clip my shoes in and out of skis either. I am such a fraud.

I grab my purse, keys, and RX Bar out of my (really clean) locker and immediately reach for the bananas for some much-needed potassium and magnesium, and I head to my car. I’m thankful that I am experiencing new forms of movement, and I will happily return to Cyclebar in a week or two to fulfill my groupon purchase…but I won’t be committing to a membership (which is quite an investment anyway).
It’s not you, Cyclebar, it’s me. And I am not a cyclist.

Cyclebar is for you if: 
-you like friendly people, and you don’t mind them greeting you
-you aren’t working out alone (this place is a little awkward to come solo. It feels very happy hour-esque)
-you like clean showers, restrooms, lockers, etc.
-you like fun, themed workouts (e.g. 80s night, Madonna Concert Series, etc.)
-you’re cool with instructors yelling at you through a microphone
-you don’t get offended by 90s music at 80s night
-you want a really good cardio workout with fun resistance thrown into the mix
-you like to sweat like a mofo
-you like to track your improvements (stats are emailed to you after each class!)
-bananas

By trying new forms of movement I’ve discovered that while I don’t like spin classes all that much, I’m 100% on team yoga and barre, which have been excellent cross-training for my one true love: running. My runs have been faster, and my hips don’t feel tight for the first time maybe ever. The pain that used to plague my right IT band isn’t there (although to be fair, I’m running short distances currently).  Yoga and barre are both challenging in very different ways, and I love knowing that I’m growing and changing with each class.

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^this morning’s tempo run, 35 degrees and beautiful.

I’m not a person who easily falls into and appreciates routine; I’m all over the place. I run because I can, and because it has always challenged me. Knowing that I have completed a training regimen and raced is such a feeling of accomplishment. But recently I began to feel guilty once I realized that I wasn’t looking forward to my runs, staring back at my calendar with dread instead of excitement over training for new races. I knew this needed to change (because I want to want to run, ya know?), and thankfully, I still VERY MUCH love running. I simply needed newness to break up the monotony. I needed to know that I was capable of being strong in other ways, and thankfully, this has made me a stronger runner, too. Life has been exponentially more flavorful and fun simply by listening to my body, satisfying it with the form of movement that it has been craving, and watching it respond accordingly. I’m thankful to be on the up and up.

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Now if you’ll excuse me, I’m going to run some errands after chowing down on this very non-instagram worthy picture of my very purposeful and fueling food choice for this morning.

Go have a good weekend 🙂 Keep moving forward.

xo, Stacey

 

 

Questions:
How do you break up the work week or workout monotony? 
Do you appreciate routine, or do you you like to switch it up? 
Do you like bananas? How about pina coladas? Getting caught in the rain?

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