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.



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Some Things about Crohn’s

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

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

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

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

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

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

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

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

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

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

*clears throat*

I AM NO LONGER ON INFUSIONS.

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

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

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He was not thrilled about the paparazzi pics…clearly

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

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

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

 

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

Thanks for your support, friends! Any questions?

Keep moving forward!

 

Stacey

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

 

 

 

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

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

Hi, Friends!

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

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

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

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2. Another trip around the sun

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

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

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

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

4. Consistent movement: Since my hospitalization, I laced up and ran a 5K just because it felt good. Not pictured: yoga and barre a few times weekly, which keep me grounded during the crazy work weeks in the trauma O.R.
(Sidenote: I had an epiphany that I may not want to work full time as a clinical dietitian after all)

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

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

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

Keep moving forward. 
Really, no really. 🙂

 

Stacey

 

 

Weekend 5K & Being an Imperfect Intuitive Eater

Weekend 5K & Being an Imperfect Intuitive Eater

Hi, Friends!

Coming at ‘cha from the hospital break room at work today. If my photos are unusually ugly and my grammar is especially nightmarish, we are gonna still be friends, okay? Good. Real life:


Hope your weekend was restful and left you feeling rejuvenated! I went to (surprise, surprise) Dallas…again.


Our cousin, Chance, came into town, and we ran a 5K- his first ever race! He’s mostly a weight-lifter, but has recently been adding running to his workouts and is pumped about the mental clarity and energy it has given him (his words, not mine!). No matter the reason, I’m so stoked to have a new running partner!!

This was a FUN race at Fair Park, home of the State Fair of Texas and the Red River Rivalry between The University of Texas (hook ‘Em!) and OU.


I actually lost Chance before we even made it to the starting line (FAIL)…so we didn’t run the race together at all. I did find him on the course though, and I was able to wave from afar!


Just a cool course! Highly recommend both the Rock ‘n Roll Dallas 5K AND Half-Marathon. I’ve done them both, and they’re some of my very favorite courses.

We grabbed some post-run salsa-filled, Tex-Mex breakfast skillets at our new favorite- Victor Hugo’s on the patio and then headed out for more adventure at White Rock Lake.


Sophie is basically a famous little Dallas dog with the sweetest personality. We made frequent stops around the lake for Sophie to greet random admirers.


We had dinner at Saint Rocco’s Italian outside on the patio, and we loved the atmosphere, complete with delicious merlot and spicy shrimp scampi…but the small portion sizes left us feeling bummed. I do recommend for a fun date spot with a view of the city, though!

We ended the night watching Amazon’s “Sneaky Pete” and sharing cheesecakes from Eatzi’s. All around, a perfect weekend!


I’ve been learning more about Intuitive Eating (read the book awhile ago, and I wasn’t at a place in life to be receptive). Basically, I’ve been focusing on eating without stressing about food…because it’s just food at the end of the day, and food is nourishing. Letting go of the diet mentality has been challenging (e.g. not beating myself up over delicious cheesecake, but rather ENJOYING the mess out of it, savoring each bite, because I don’t eat dessert or dairy often, and it just tastes good regardless of any justification).

Part of intuitive eating and letting go of the diet mentality is realizing that diets DO NOT work for long-term weight loss (disclaimer: I have not YET had a class on weight loss in my nutrition education, nor have I personally ever dieted for weight loss, so I do not feel that I can confidently comment on dieting specifically for weight loss goals, but I will say: if dieting gives you structure, and you feel healthy mentally, and you’re feeling nourished and strong- GO FOR IT. But choose a diet that is sustainable and inclusive of fruits, veggies, and all the macronutrients that keep our bodies the capable, strong beings that they are!).

If I’m being honest- I struggle with the negative stigma surrounding diet mentality. Actually-I can’t subscribe to the “diets are bad” mentality, and here’s why: my personal experience(s) with doing the Whole30.

I did the Whole30 to eliminate foods that could cause inflammation, and since I have an inflammatory disease, I was looking only for non-scale victories: more energy, less frequent poop attacks (explicit version included-you’re welcome), and more painless, restful nights. Did I accomplish this in 30 days? Heck yes I did. However-I did NOT weigh myself before, during, or after the program (fun fact: I do not own a scale). After the re-introductory phase, I did not stay on Whole30 for life because that’s NOT how it is intended, and I refused to give binary labels to food such as “legumes are bad” because THEY ARE NOT, and if you walked away from the Whole30 with that mentality, you missed the point.

As an IBD patient who is chronically trying to navigate this chronic, autoimmune disease (ulcerative colitis)- I try to include as much variety in my diet as possible. Including- I drink alcohol on celebratory occasions. Hell, I even have cheesecake (even though there are rough consequences for dairy desserts for me), but I DO NOT feel bad/guilty/sad about any of it, because I really do feel like I have learned how to enjoy food for being food. However, I do not appreciate the damning of diets- simply because diets DO work for some people, and certain populations REALLY need diets (e.g. the Mediterranean diet has documented successes on heart health; ketogenic in treatment of epilepsy; renal diets for kidney failure patients; avoidance/inclusion of certain foods for IBD patients; gluten avoidance for Celiac patients, and the list goes on).

I’m just a girl trying to work her way though nutrition school, healing my gut intuitively, sometimes with a little help from the Whole30, or low FODMAPs, or another science-based elimination DIETS to figure out what THE HELL to feed my stubborn gut to make it heal. There are situations when intuition isn’t enough, and maybe that’s because Crohn’s/ulcerative colitis patients aren’t part of the general population.  We are just a little bit extra. 

Does all this make me an intuitive eater failure? Hey- I’m a work in progress.
I’m educated AF, and I’m here to learn, even if I’m not perfect; This bite of cheesecake sure is.

Dallas Weekends

Hi, Friends!

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

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

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

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

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

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

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

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

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

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

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

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

-Stacey 🙂

 

 

 

Ulcerative Colitis: 5 Years Later

Happy November!

Is this the fastest year ever for anyone else? Just me? It’s flying by in a hurry!

I realized today that it has been five whole years since my ulcerative colitis diagnosis– woo! So much has changed in the last five years, and today I’m making a post about five obstacles that I have overcome and you can, too! But first, here’s a timeline of all the significant moments of life in and around an ulcerative colitis diagnosis:

-September 2012: Began experiencing severe symptoms (x-rated version: bloody stools 30x daily, loss of appetite, quick weight loss, fatigue, night sweats) 

-October 2012: Diagnosed with “moderate to severe ulcerative colitis”- began remicade infusions, pain medications, steroids, and mesalamines to get symptoms under control

-January 2013: Tried stopping all medications and healing with holistic approach (without doctor’s permission) Stupid, stupid, stupid

-April 2013: Hospital stay for dehydration due to symptoms; back on remicade infusions every 8 weeks with steroids. Decided to stop eating red meat, fried food, processed meats, and cheese

-December 2013: GRADUATED from The University of Texas at Austin, despite pleas from family to take a medical leave of absence. My GPA even improved after a diagnosis.

-March 2014: First post-grad job, a night shift at a Houston hospital. Here is where I learned that I did not want to be a nurse but instead decided to pursue dietetics. I declined my acceptance to a post-bachelor’s nursing program and began scoping out dietetics programs.

-June 2014: 2nd colonoscopy revealed active and increased inflammation; diagnosis modified to “Crohn’s disease”; removed from night shift schedule and increased dosage of steroids

-March 2015: Registered to run first half-marathon and fundraise for cures to Crohn’s and ulcerative colitis; began talking publicly on social media about disease and realized that I could help encourage people through my journey with a challenging diagnosis. 

-July 2015: Completed first half-marathon in Sonoma, California after fundraising over $3,900 for Crohn’s and UC research

-February 2016: Completed second half-marathon in New Orleans after fundraising over $2,500 for Crohn’s and UC research

-May 2016: OFF STEROIDS! 

-July 2016: ENGAGED! 

-August-December 2016: “Is remicade working?”

-January 2017: WEDDING!

-February 2017: 3rd colonoscopy confirms “ulcerative colitis” diagnosis, but with significantly less inflammation

-May 2017: REMISSION! 

-October 2017: 5 years of ulcerative colitis diagnosis

Much has happened in the last five years, and I get bummed when I live through an experience and think, “why didn’t anyone tell me about this?!” which is why I [probably] tend to overshare on social media-you’re welcome. I believe that leaning into the vulnerability of real life challenges and sharing the experience with others helps create a community of empowerment. My life isn’t filled with bright, celestial light and like-it-to-know it worthy outfits (currently sporting dirty high-top converse and yoga pants); my life is peaks and valleys, a balancing act of chasing chocolate chip cookies with probiotic green juice and just trying to stay the eff in remission while I navigate life as a normal twenty-something year old newlywed while remaining a girl boss in organic chemistry. My life is far too much to pretend that it’s instaperfect.

Okay, I’ll stop rambling. Here’s five obstacles that I have overcome with ulcerative colitis:

1. Fear of pain. I remember freaking out as a child every time my mom would take me to the dentist, “Will it hurt?!” Grown adults still ask me this about colonoscopies

(No, Debra, you’ll be fine).

I honestly go into procedures/infusions now knowing that at some point I WILL feel discomfort, possibly even pain, and I don’t even care. Pain is temporary, even if it doesn’t feel that way. P.S. The most painful part of the infusion is the end, when the nurse takes the tape off. Think of it as a nice little wax job.

 

2. Fear of needles. Before UC, I would get so nervous to have by blood drawn annually at my physical check-up. One time I almost passed out. But I realized quickly that I would be seeing a lot of needles after my diagnosis, and I needed to woman-up and get brave. Now I can look at needles all day long- no problem. I don’t even care if the nurse has to try four times before hitting a vein, that looks like hard work anyway.

Pro tip: If you ARE afraid of needles, don’t look at the needle when your nurse is trying to thread it, because this triggers a fight-or-fight response from your sympathetic nervous system and your veins vasoconstrict, making life more difficult for you AND your nurse. Also be sure to hydrate well the day BEFORE a procedure so your veins are happy, plump and hydrated.

3. Being my own advocate. If you know me, you know that I have a soft voice, AND I have a resting nice face which means that everyone smiles at me all.the.time. Strangers frequently strike up a conversation, like we’re old friends. My naturally semi-extroverted self is STOKED to have these encounters, but because I LOOK so.damn.friendly. it’s a real challenge for people to take me seriously. When the nurse says “let me check on the order for your medication” I take notes of who I spoke to, when I spoke to them, and then I call back later that day to make sure that homegirl actually checked on the order as promised. People get busy and forget, but my body isn’t going to forget that it needs an infusion to function. If I show up to an infusion appointment only to find out that an order had never been written and insurance had never been contacted for prior-authorization, I WILL craft an email to the head of the infusion center, call my doctor, or show up in person with an order ready for him to fill out and sign. Whatever it takes, I leave my dignity at the door, and I fight. It’s too easy to get lost in our American Healthcare System, so go to bat for yourself. Take good notes, talk to understanding people, and make your case sound.

4. Hair loss. Many, many people experience hair loss; it’s just part of life. I could write an entire post dedicated to “How to make your hair healthy after you’ve been REALLY nutrient depleted and it thins and falls out and breaks off in clumps and makes you cry really hard in the shower but it’s going to be okay, Stacey- IT’S GOING TO BE OKAY. YOU’RE OKAY.” Honestly, hair loss was a tough little challenge for me, and friends and family members were so kind about it “I can hardly notice”. My older sister bought me expensive, old man hair growth shampoo- bless her. But to me, hair loss was an outward expression of how desperately unhealthy I was on the inside, and it was hard to wash my hair knowing that I had balding spots, and I could feel it thinning by the handful. In retrospect, it could’ve been so much worse. I wasn’t bald! Let’s review:

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Ten months before UC diagnosis

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

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

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

5. Health is comprehensive. Being healthy has been another challenge, but I FINALLY feel like I’m getting it down. In college I stressed and slaved so hard over science courses to get into nursing school, and I sacrificed quality sleep and my diet suffered (but isn’t that the tale of so many college students?)

Post-grad I learned that I felt better when I was physically active, and I started sleeping more. I now feel like I’m balancing sleep, productivity, physical movement, spirituality, and time with people I love better, and each facet is an integral part of overall health. Taking care of myself is getting easier. Three cheers for adulting!

If you’re dealing with a diagnosis, managing a disease, or you just feel like you have a one-way ticket to Struggle City, USA, know that I’m here to help you feel like you’re doing a thing, and you’re doing it better than you think. Life is a continuum of learning, and if we can manage to learn together…well, I’d say we’re doing something right.

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

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

-Stacey

R E M I S S I O N

Monday was the best day I’ve had in a long time.

“Are we allowed to use the ‘R-word’? Are you saying I’m in remission?”
“Yes. You can say that you’re in remission! Be proud of our hard work.” <- my doc.

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

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A brief recap:
Late September 2012: began noticing symptoms (x rated version: bloody stools 30x daily and through the night, fatigue, sudden weight loss, nausea)
October 2012: Diagnosis “Moderate to Severe Ulcerative Colitis”; began Remicade IV treatments immediately
April 2013: hospitalization (“holistic approach” without meds didn’t work- oops)
May 2014: Mega-flare
June 2014: diagnosis changed to “Crohn’s disease” after 2nd colonoscopy
July 2015: Ran first half-marathon while fundraising for cures to Crohn’s and ulcerative colitis with the Crohn’s and Colitis Foundation of America; still not in remission
August 2016: Concerns that Remicade infusions are losing efficacy; increase frequency of infusions
December 2016: New medical center, new doctor, new state, new meds
February 2017: Diagnosis is confirmed to original dx after 3rd (or 4th?) colonoscopy and biopsies, “Moderate to Severe Ulcerative Colitis”
May 2017: Reached clinical REMISSION

…what does that mean?

My labs are normal, showing no signs of active disease, meaning that my inflammatory markers are all within normal range. Also my micronutrients are all within normal ranges. I have zero symptoms in a day. ZERO. And then I wake up the next day after sleeping completely through, and I have zero symptoms again, and it keeps happening.

There’s no guarantee how long remission will last, since there’s no medical cure for Crohn’s disease or ulcerative colitis. My doctor is enthusiastic to work with me though, and he thinks there’s hope in the future for me to eventually live life without my IV infusion with a 50% chance of relapse. I actually like those odds, and I’ve NEVER heard a doctor reference my life without infusions, so this made me cry happy tears…and I’m not a happy tears kinda girl. However, weaning my body off of the infusion will take months, potentially even years because it’s a slow balancing act: increase the time between infusions, check blood, remain on oral medications, check symptoms, lower dosage of oral meds, check blood, etc.

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The goal now is to stay in remission and eventually get into “deep remission”. To me it sounds like I’m currently in remission with training wheels, but I gotta ride like a pro before I can be set free. More patience and hard work, and I am completely up for it!

In order to appreciate a milestone of this magnitude, I’m gonna be nostalgic for a hot second. Lessons I’ve learned from Crohn’s/ulcerative colitis/whatever the heck my diagnosis was when I learned these lessons:

1. Vulnerability is your friend. Vulnerability leads to empathy. Be vulnerable, because it creates a genuine connection with people that you can learn from, be encouraged by, or befriend. You can still keep your dignity and humility AND manage to be vulnerable too- don’t worry :).
I can connect with people on really weird, strange, close levels now because of my new-found empathy powers…and sometimes that freaks me out. But it’s cool, too.

2. Disease is a lens to view the world. NO WAY could I see the world in the way that I am able to see it now had I never been diagnosed. I’m able to feel the importance of time. Time is vital. Time is not on our side, but we can make the most of it…because it’s a gift. Truly. Sound cliche? I don’t care.

3. Humor is your greatest weapon. Whether I’m shitting my pants in traffic, dealing with a bad report, debilitated by fatigue, or having the greatest day of my life…humor. Always, always a good reason to laugh, usually at my own expense, and that makes my day. It’ll make yours too, if you let it.

4. Strength isn’t something that comes by osmosis. Life is tough- no, really. Life. Is. Tough. But one day you’ll look back thinking, “How did I survive that? How did I make it through?” You got stronger. While you were driving that struggle bus, you were gaining character, muscles, emotional fortitude, and badassery. You couldn’t feel it, but you were resilient. And now your resilience has made you strong. Way to take those trials like a champ! Find joy in trials, because you’re gonna find strength.

5. Kindness. Be slower to judge. You don’t know what people are enduring. We’ve all been through some small version of hell at some point, and some people handle that with more grace than others. Be kind to yourself, also. Rest, breathe, relax, sleep in if you need to, but don’t beat yourself up. You’re a work in progress, and you deserve a little kindness; we all do.

Oh- and celebrate every little accomplishment along your way. The best is yet to come!

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^ How I celebrate/deal/rationalize/breathe

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

-Stacey