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.
I keep reading books written by entrepreneurs, listening to podcasts by the greats like Oprah, and they all talk about taking control of your morning.
I’m not going to lie. There are some days that I don’t have a handle on things. I’ve been fighting through and sitting with depression and anxiety, and I’m not quite out of the hole and done healing just yet. On the bad days I am giving myself permission and grace to just have a bad day, pure and simple, free from guilt, and if that means that I need to sleep through the morning, or spend all day watching “How I Met Your Mother” re-runs, so be it.
But when I’m on my A-game and feelin’ like myself…I love the mornings. The whole world feels like it’s mine in the morning- unbothered by busy traffic, lines at coffee shops, or the sound of my phone going off. I love the gold light tones of the morning sun, the sound of the birds, and I wake up pretty damn chipper most days.
I have realized that it doesn’t take much to make me feel centered, but I understand what the greats are talking about…having control of my morning makes me feel empowered, fierce, beyonce-like, and ready to conquer the day.
What makes me feel centered and 100% myself? Oh- glad you asked.
– music in the morning. Good stuff, like Creedence, Frank Sinatra, or lately I’ve been into Bob Seager (old soul here)
– coffee– just a cup, maybe 12 oz if I’m feelin’ like I need a divine intervention. Pretty sure my resting heart-rate is something similar to a hummingbird’s, so I don’t over-do it.
– movement. I’m a movement in the morning kind of person- but I understand that not everyone is like that. When I say “movement” I don’t mean crossfit- that’s not true to me, and I get stressed when people are yelling at me to move. I mean walking my dog, doing yoga on the back porch, hitting up a quick barre class, or going for a solo run.
– stillness. Headspace app- thank you, Jesus.
– creating. I need to write in the mornings. I need to journal, or blog, or hand-letter the shit out of something motivational, but I must create to feel 100%. If I have nothing to give, then I need to read something positive and fueling to my brain.
– food. colorful and flavorful, sometimes in the form of a smoothie.
Pictured above is my vision board in my home office/home gym/ bathroom. It’s a multi-purpose room, but I still set some real, attainable intention. I wrote affirmations that force me to look at them daily, and I printed out photos that remind me of who I am/want to be more of, goals, reminders, etc. If I don’t have visual aids to remind me to set intention and live my fullest freakin’ life, then I’m not sure if I’d remember to do it, and this helps me.
I also realized that I hate fake plants, but I’m keeping the guy anyway for now, because I’m not quite at a place in life where I can nurture a real plant hanging on my wall.
How do you set intention? What brings you back to feeling like yourself?
How on Earth have ya been?! I’ve been MIA, even through the holidays but not completely without good reason. Wanna catch up?
I started having a mega-flare around Thanksgiving thanks to my doctor’s office staff forgetting to send documents to the insurance company, resulting in the insurance company denying my remicade infusions (you know, the ones that my life literally depend on) and further delaying any forthcoming infusions.
The more time lapsed between infusions, life.got.real.
A trip to the ER for dehydration in January, and I learned that hospitals no longer even carry my infusion medication because of cost, so that killed my hopes and dreams of receiving an emergency infusion. Back on the steroids we go (kicking and screaming- if you’ve ever been on the ‘roids I know you understand!). I called the doc to update his staff on my change in medical status/recent trip to the ER/weight loss from crapping blood constantly (sorry-x-rated), and received a “what do you expect us to do for you?” response, which resulted in me finding another doctor in.a.hurry.
My new doc was furious about my exacerbated symptoms to say the least (we are starting over, from ground zero and it is a lot of time-intensive, hard work). She prescribed me more oral meds to help my body not reject the infusion since it has been so long without the medication. Within three business days, the new doc had my insurance giving the green light for infusions for the rest of the year. MIRACLES! Ya girl finally got an infusion, only a month past due. But I won’t be without any future infusions this year. PRAISE HANDS!
My new infusion center is located at my new doctor’s office in Dallas, three hours of a drive from where I live in OKC, but I don’t mind. My sister and best gal pal, Lindsay, lives in the Big D, so we make a fun sister weekend out of it. Here I am cuddling her dog Sophie while she’s at work, post-Remicade nap session and just after grabbing some juice from one of my Austin guilty pleasures in Dallas, Juiceland.
And if you know me, you know that infusion days= pizza days 🙂
We went to Oak Cliff for some delicious pizza at Eno’s which was the cutest little area I’ve seen in a while (disclaimer: not all of Oak Cliff is this picturesque, but it’s on the up and up). We grabbed our pie to-go because, well, symptoms got in the way. And then we headed home to watch a healthy dose of Grey’s Anatomy and hang out with Sophiedog.
The next rainy morning we went to a local barre class where we spent most of the hour huffing and puffing and laughing and feeling especially uncoordinated, then we headed to Mudsmith for post-workout coffee and conversation. I think Lindsay hated me a little for signing us up for barre (oops). Then I headed back to OKC for a biochemistry test.
Which about brings us up to speed for this week! We had our first ice storm since I moved her a year ago:
Y’all. I have never driven in ice. It was a big grown-up deal for ya girl.
But I made it to work and back home all week just like a pro!
And today I wore sandals and a tank top to yoga class, because it’s sixty degrees again and life is good!
I realize now that I should’ve allowed myself to be vulnerable and open during the depths of this past flare; it could’ve helped someone. When symptoms rage and I start to panic, I have a difficult time vocalizing and making sense of my thoughts. I even have somewhat of a guilty conscience for fear of sounding too negative and “debbie downer” but that’s real life! Chronic disease is a tough dragon to tame at times, but if you’re going through something similar, hang in there. Know that you may have to make sacrifices (e.g. sleep, meds, dietary changes, more exercise, eliminating stress, etc) but you and your health are worth it all.
I’m still not out of the woods; I am still fighting through symptoms, and if I think too much about where I’ve been and how it feels like I’ve taken three steps backward right now, I get bummed. But I’m not letting this flare get to me like the others, and I refuse to sit on my couch stagnant and sad (not that there’s anything wrong with that! Couches can be great for healing with a healthy dose of some Netflix, but it’s not what I need right now). For starters, I signed up for yoga (I’m really bad at it), but y’all, I LOVE it.
The facility also offers barre and pilates, and I find it’s just the right speed to make me stronger without feeling like I’m having a near-death experience while exercising. I’ve also started running again.
Self-timer took this pic after yesterday’s quick little one mile run because I felt strong. 9.56″ pace for a one mile up and down some little hills and over puddles of melted ice, and it was exactly what I needed. Starting from the bottom can be so scary and disheartening, but honestly. What is worse than being stuck at the bottom? Nothing. So I’m climbing my way up and up again, doing the things I love as often as I can, listening to my body, eating good food, trying new things, experimenting with new recipes, and finding joy in the journey.
Hope you’re finding joy in your journey, wherever you are! It’s so good to be back. xo
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.
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.
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—
“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.
After nearly five years since my diagnosis with Inflammatory Bowel Disease, my medical chart has added a new word to its history: REMISSION
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.
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!
^ How I celebrate/deal/rationalize/breathe
Thank you all for celebrating this milestone with me!!!
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.
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.
(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.
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.
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.
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 🙂
OH! And have a great Monday! There is such a thing, I promise.