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?
I was a baton twirler in high school, so naturally I juggle.
My backup career is to join the circus. Barefooted.
^ This book (highly recommend!) is what got me thinking about this topic. Not the joining the circus as a solid Plan B, but the topic of “When life hands you lemons…”
You get to finish that sentence.
… “Make lemonade”
… “Add alcohol and make vodka sours”
… “Juggle them”
… “Throw the lemons on the ground and stomp on them”
However you want to finish that sentence- that’s your choice.
But what isn’t always your choice is what form the lemons manifest in your life. My lemons have taken many forms, most notably getting diagnosed with an incurable autoimmune disease at age 21. Shoutout to moderate to severe ulcerative colitis Crohn’s disease.
P.S. Diagnosis was ulcerative colitis, then crohn’s, then ulcerative colitis…and most recently, “Crohn’s?”
And at times I threw it on the ground.
I did not handle the lemons gently and I didn’t do life so gracefully, because Crohn’s is a bitter-sour pill to swallow…again and again, ups and downs of flaring and thriving- one step forward and two steps back.
But at the end of the day- it’s my choice. What am I gonna do with those lemons?
What are you gonna do with YOUR lemons? The pain and the uncomfortable, unfair life that happens that you can’t control- what are you going to do?
I think we create our own realities. Not completely because, you know, disease and things out of our control. Lemons.
But we choose theresponse that becomes our reality, and that is powerful. YOU choose to get up off of the bathroom floor, put down the Netflix remote, and chase the world outside and around us. You choose to see and feel the beautiful life stuff. You choose to muster the appreciation of the crap that’s happened to you…because even though it’s bitter-sour, it makes you all the more resilient, if you let it.
So.
Let the lemons make your life more flavorful, even though it doesn’t always taste good – let it make you better.
Because I believe you’re bigger and badder and sweeter than your lemons, and if you disagree then we can just join the circus together.
P.S. Health benefits of actual lemons:
-Vitamin C is good for your immune system
-Helps with hydration: drinking flavored water sometimes makes you drink faster
-Natural diuretic and can prevent bloating
P.P.S. I set up the self-timer on my iPhone to take ALL of these goofy photos with lemons AND THEN I put them on the world wide web for the world to see—
The question I get asked most often by friends and strangers alike is, “How did you know something was wrong?”
Please don’t use my experience in lieu of a doctor’s professional opinion. If you think something is wrong…go get checked out!
Okay. Here’s my story:
Once upon a time in early Fall at a coffee shop on campus at The University of Texas at Austin in 2012, I began having excruciating stomach cramps. When I say the word excruciating, I mean excruciating. Unbearable. The BEST way I can describe the pain for the sake of being relatable…have you ever had a violent stomach virus? Multiply the frequency of your symptoms to several times a day and night, for weeks. Then you get me.
I excused myself a couple times over the duration of my brief meet-up with a friend at the coffee shop. “Guess I should switch the chai lattes to soy,” I thought to myself.
But the pain and the symptoms weren’t alleviated by omitting dairy. Within weeks even ice chips resulted in pain, followed by 10-15 wind sprints to the bathroom.
X rated version: I knew something was wrong when I noticed that my stools consisted almost entirely of blood, and nothing seemed to offer even a hint of relief (not even drinking imodium from a straw…not recommended, by the way).
About a week and a half later, I made an appointment with University Health Services; they accommodated me quickly when I described my symptoms. They prescribed me high-powered antibiotics, which didn’t phase my symptoms. “Come back in 8 days for a follow-up.” I noticed that I had already lost twelve pounds when I weighed in with the nurse before my appointment.
I found a local gastroenterologist, without a referral from a professional. Something had to be resolved fast.
At the time I would wake up two hours before class began (after a night of restlessness because of constant stomach cramps and running to the bathroom), to ensure that I would arrive to class in time, allotting plenty of time for bathroom stops in the buildings on my way to class until I was finally able to make it to my class. I received permission from my professors to record their lectures during this time, because I would have to sneak out of class three or four times to be sick. This went on for a few weeks.
During my first appointment with the gastroenterologist, he scheduled a colonoscopy for the next day, and so began my life of poking, prodding, stool samples, blood samples, and biopsies. The prep juice wasn’t bad because I was pretty clear from shitting thirty times a day…still not entirely sure what the big fuss over colonoscopies is all about.
THE DIAGNOSIS
After my colonoscopy the doctor read my diagnosis, “You have moderate to severe ulcerative colitis. There’s no cure, but there are treatment options. You’ll be monitoring this diseasefor the rest of your life.”
Honestly, I was pretty certain that I was dying of cancer. When I was diagnosed, almost three weeks beyond my very first noticeable symptom at the coffee shop, I had lost twenty-five pounds. I looked like a bag of bones. I was weirdly relieved to have “ulcerative colitis” as a diagnosis. Having answers makes all the difference.
Taken two days before my scope at 102 pounds
(During this time I got recruited by Abercrombie model scouts on campus for a live audition. They were quickly educated…thanks to the prednisone and my lack of sleep.)
All that I had heard about “ulcerative colitis” was a brief overview in a pharmacology course, and I knew that Crohn’s was its cousin, both under the umbrella of Inflammatory Bowel Diseases (IBD)…not exactly enough for me to understand what the heck the doc was talking about. He explained that my immune system was hyperactive, recognizing even food as a foreign substance that needed to be expelled immediately. Not cool, immune system. Not cool.
My body was rebelling against my colon. Why? Could be genetics, or the environment (e.g. toxins, antibiotics altering gut bacteria), or an interaction between the two.
“What can I eat?”
“Eat whatever you want. Since you’re a bit underweight, drink as much dark beer as you want. Eat burgers.”
^ Never made sense to me. UC is an autoimmune digestive disease in my gut, where most of the immune system is located, and I’m being told to eat whatever I want? Too good to be true. I knew immediately that dairy and beef physically hurt to eat, so I eliminated those. Next to go was processed meats and fast food, because no way are those beneficial. To my surprise there were still plenty of good options to eat, despite being in college and on a budget. Good food didn’t have to be expensive. I began researching which foods to eat to help with inflammation, since UC is an inflammatory disease, and I tried to eat more of those helpful foods: leafy greens, grilled fish, lean meats, and blueberries became my go-tos. And so began my interest in nutrition. I watched it help me, change me, and I dreamed of how it could help the people I love. Present day Stacey is in school again pursuing a dietetics degree.
THE MEDS
After my scope, the doc handed me a paper folder full of info pamphlets and immediately prescribed me an IV biologic & immunosuppressant: Remicade. MANY people ask, “Why did you decide to be on such a high octane medication?” At the time I didn’t feel a like I had much of a choice. Looking back, I still would’ve agreed to such aggressive treatment, because I felt (and looked) like I was actually dying. It’s different for everyone, but for me it was serious at the time. I mean. I LOST OVER 25 POUNDS IN THREE WEEKS, PEOPLE.
I remember my first infusion, walking into a dimly lit infusion suite with recliners bordering the walls, each with a patient hooked up to an IV pole. Some were asleep, others read books, flipped through their phones, and a few watched HGTV buzzing in the background on the televisions. Not all the patients had Crohn’s or ulcerative colitis, some had rheumatoid arthritis, MS, and a host of other autoimmune conditions. This was the first time I realized that my life would not be the normal I remembered. I needed medication from an IV so I could live life like I remembered living. Weird.
Overnight, I felt like I had gone from being a normal, healthy, social college student to a smaller, weaker shell of myself: spending more time alienated by my symptoms; a more vulnerable person, more medicated, with less autonomy over my own health. I bought a pill pack from the pharmacy store that looked like the one my grandmother carried in her oversized old-lady purse, so I could keep up with my new lifestyle.
In addition, I was prescribed pain and sleeping aids (which I never took), along with a hefty dose of Prednisone, a corticosteroid. Jesus and steroids saved my life, and I honestly believe that. Prednisone was the only oral medication that seemed to ever work.
But I hated it.
On the left: steroid-free! Right: “Moon Face” side effect in full swing after a flare, taken seven months apart
Steroids were great in college, because I felt very energetic (almost jittery) while taking Prednisone, so even on little sleep I was able to get a lot accomplished. However, the mood swings made me feel like a crazy pants to say the very least, so I avoid Prednisone at all costs today. I also like to sleep…and I have the hardest time sleeping when I’m on the ‘roids (disclaimer: not the same anabolic steroids that give you muscles…womp womp)
LIFE AFTER DIAGNOSIS
Slowly but surely, my energy levels began to creep back up to normal. I got my life back. Sure, I had to make some adjustments here and there (still learning), but heyyy I’m alive!
I graduated with a pretty decent GPA, even with a hospital stay, despite my family’s pleading for me to take a medical leave of absence from college. I never asked for a project deadline extension. I honestly look back on this time in life and think, “How?” But I was in survivor mode. Don’t say “I could never.” You could. And you would.
I got into the working world, took some time to get a Crohn’s diagnosis, had a doc switch diagnosis back to “ulcerative colitis”, changed shifts, changed jobs, conquered anxiety, and got to know myself really well. Wasn’t glamorous, and wasn’t what I anticipated, but it’s okay! I’m okay.
LEARNING TO COPE 1. Haters Gonna Hate
People will criticize you whether or not it’s warranted. I have been criticized for being a “pill popper”; for “taking the easy way out” with the infusion (that one is beyond me); for being “too stressed”; for not taking a medical leave of absence from college; for drinking beer; for the way I eat. People don’t mean to be as nasty as they can be sometimes; they simply don’t know your situation. I control as much as I can with diet, but I’m also human and sometimes I slip up or make conscious decisions to indulge. The meds help where nutrition cannot for me. My dream is to be 100% in remission with diet, but I’m not there yet. I can’t advise YOU if you were recently diagnosed on which course of action you should take. This disease is different for everyone. What works for one person may NOT work for another. It’s all about figuring out what works for YOU until there’s a cure. But shake off the negativity. You’re living with this- YOU are the badass.
2. Keep your people close
There will be people in your life who are with you during your diagnosis, and I don’t just mean the people who happen to be around. Who is WITH you? Who is there keeping you strong? These are the people you want around forever. For me that’s my sister, my college roommates, and my Zack. Story time 2.0:
One night in my apartment that I shared with friends, I was THE most physically ill I had been in my life, sick from both ends for hours and hours (pretty, huh?). I called Zack and begged him to come over. He spent the entire night on the phone with pharmacists, arguing with my doctor about medications, all while I slept on the bathroom floor in between being sick. Finally, around 4am, after much harassing Zack managed to get me some anti-nausea meds. My gawsh, the guy is a saint.
He fought with me. He went to bat for me. He never judged. He didn’t do good things for reward. He was just there, beside me, gutting it out with me. And so were my roommates. The BEST people I know.
After Roommate Haley’s UT Graduation, the Spring after the diagnosis. We rewarded our girl bossery by finishing a sprint triathlon
I promised myself that if I ever had the energy again to move, then I would. Sounds overly emo, I know. But y’all. I really struggled with weakness for so long. So my roommate and I did this thing ^. Not pictured: Roommate Becca, still one of my greatest friends, probably drinking a mimosa at the finish while snapping this photo.
KEEP YA PEOPLE CLOSE.
3.It gets better
There will be times when you think, “TF HAPPENED? I was doing so good! Where’d these symptoms come from?” This will pass. It will get better. You will prevail. You’ll come out stronger with every flare. You’ll live to tell about it, and you’ll develop a pretty damn good sense of humor from it, too.
4. Find your silver lining
There may be days when you shit yourself in your car while in traffic. It’s okay to cry about it, but then try to find some humor in that. When you’re in a flare and EVERYTHING makes you sick, think about all the amazing Netflix you’ll be able to watch. “I won’t be able to do this when I’m better.” Think about all the food you CAN eat. If none of those options work, recognize how this has changed your life. I wasn’t interested at all in nutrition before this disease, and now it is my life. I sho wasn’t going to run before UC, and now it’s my hobby.
5. You’re still you
You’re still you, but you’re more relatable. You’ve seen struggling, and SO.MANY.PEOPLE. are struggling. You’ve seen sickness, and SO.MANY.PEOPLE. are sick. You’ve seen recovery, and people NEED to find their strength to recover. Help them find it. See this as a weird superpower. This disease doesn’t define you, but if you let it, it will make you a better, bigger, badder, stronger, gassier(?) version of you. You’re still you, only better.
Please let me know how any unexpected life situations have changed YOUR life! I’m with you. Solidarity!
Keep moving forward 🙂
-Stacey
OH! And have a great Monday! There is such a thing, I promise.
Soon after I finished my nutrition exam on Friday, Zack came in from work. “Grab the dog, and let’s go hiking! I bought beer.” <- The way to my heart.
I grabbed the dog, some EPIC brand snacks with some smart pop and an RX Bar, and off we went!
We had to walk quickly because we were chasing the last bit of the sun that remained, but we loved the trails out at Lake Thunderbird! We were the only three out and about, and it was completely serene. We saw a ton of beautiful deer! Jaxon was thrilled to be exploring initially, but on the way back he planted his feet into the ground (how he says “I am so done”), so I picked him up to walk back to the truck. When we got home, we facetimed our longtime friend Pratik who is far away at med school. A perfect Friday, indeed.
Saturday was a lazy movie day with a side of Hello Fresh. The weather here was meh, so we lounged. It was wonderful.
I made my meatloaf low FODMAP compliant by omitting the onion and gahhlic. Instead, I used some gluten free panko that I had on hand, plus the rest of the ingredients in the box that were low FODMAP. Zack’s meatloaf patty was made as directed, and he loved it!
Normally, I hate meatloaf. Just ugh. It’s like fancy feast for humans, and I don’t like it. Needless to say, I wasn’t thrilled about making this meal, but surprisingly it was delicious! Not your momma’s meatloaf- way, way better. I really enjoy sweet potatoes, so those were a hit.
Sunday’s excitement was taking Jax to the park. He LOVED the walk there, but once we arrived he wasn’t sure what to do with himself and just looked extremely anxious. He’s such a little mess. Zack and I tried to swing, you know, like adults. Confession: the last time I was swinging in a park was on Christmas day. I tried to jump out of the swing and onto the ground, you know, like we all did as kids on the play ground. Only this time I had more weight and more momentum when I hit the Earth, and I face planted hard.
So. I didn’t swing much
Last night we had a hellacious thunder storm. I see you, Oklahoma. Hopefully tornado season will come and go quickly for this poor Texan soul…
Today I went to the doctor for a follow-up from my scope.
My conversation with my doc was completely unproductive.
“When was your last scope?”
Um- three weeks ago…you performed it.
“Yes, right. What did we decide your diagnosis was?”
seriously, doc? …ulcerative colitis…also…my infusion isn’t working well.
“Yes, okay. We will check on that in three months.”
But it isn’t working…today.
“Right, but I want to see how you fare with the new oral medications, so we will check back in three months. Any questions? See you in three months.”
SIGH.
So here’s to fighting hard to be my own health advocate (it never ends, and no one can advocate for my health better than myself), and here’s to fighting even harder to move and run and get stronger. This disease can put a damper on life mentally and physically, but each time I push back against those limitations, I come out stronger. I win, every.single.time. This time is no different. I just have to keep fighting, and keep being brave.
I hope you can muster the strength to fight back and be brave against your own circumstances, too! You are bigger than your giant.
