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.
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:
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.
Here’s to five years of learning and living! Hope your day is a good one! 🙂
For the past few weeks I have struggled with feeling inspired…more than just with my blog content (you may or may not have noticed that I slowed down from hammering out a post daily).
I started wondering, “Should I continue pursuing my degree in dietetics?” Graduation seems so far away at times since I’m working full time using my sociology degree (Yes, kids. You CAN get hired using that liberal arts degree after all!) and taking one/two classes at a time is DRAGGING.
So naturally, I started looking at other degrees career paths. Master’s in Pubic Health? Oh. I could do that! But as I was doing a case study for my nutrition class on Friday night I thought, “I love this crap. I’m just gonna have to suck it up and stick it out.” So that’s what I’m doing. Sticking it out- juggling work with school, and keepin’ on (even though TBH I wish my school wasn’t online and was in person- I LOVE THE CLASSROOM. But I’m thankful anyway).
And today on my run I was reminded of how I always struggle during the first mile and a half and forget why I love running. It’s not until I push through until miles two or three that I FEEL it. “THIS is why I run. Because I’m out here, when I could be anywhere else.” And it’s liberating, after the first mile and a half of clumsy feet/ gettin’ into my groove.
But I keep on.
And then suddenly my muscles remember what we’re doing. My breathing picks up and settles into a familiar pattern. My legs swing happily beneath me. I can feel the wind (on a good, breezy day anyway). There’s nothing like it. And there’s nothing comparable to the feeling of finishing a race after months of training hard. There’s nothing sweeter than the feeling of accomplishment.
So I’m keeping on.
Past this semester of “Ugh why am I doing this?” until I get my groove back. Because I will. Because nutrition is my ultimate jam, and I’m good with people.
So whatever you’re pursuing, keep on…past the mile/semester/time of being uncomfortable, because trials develop perseverance, and perseverance develops maturity. One day you’ll find joy in what seemed like suffering, because you’ll have accomplished your goals…and there’s nothin’ sweeter than that. (1)
Except this, maybe this:
Vanilla Berry-Kiwi Chia Seed Pudding
It’s gluten free. It’s dairy free. It’s pudding.
-1 C coconut yogurt (I used vanilla)
-small splash of milk (sorry, I’m still working on the measuring thing
-1/4 C chia seeds
-1/2 C raspberries
-1/2 C blackberries
-1/2 C strawberries
-1/2 C kiwi, peeled and sliced
-Mix kiwi, blackberries, and splash of almond milk (we’re talkin’ probably less than 1/4 cup of almond milk, guys. Jusssst a splash) in a medium-large mixing bowl.
-Once mixed(ish), stir 1 C coconut yogurt into mixture
-Add chia seeds and stir some more
-Pour in glass container and refrigerate overnight.
-Enjoy a serving for breakfast (about 1/2 cup), topped with favorite granola
When you wake up in the morning, this should be your view:
I know it doesn’t look all that appetizing, but it is. Oh. It is. Promise.
About chia seeds:
-not just for chia pets
-high in Omega-3 fatty acids (if you don’t like seafood, here’s your substitute!)
-high in protein (about 4g/serving in this pudding!- not including the protein from yogurt)
-an antioxidant! Healthful anti-inflammatory properties in these seeds
Let me know what cha think if you give this recipe a shot! I’ve got a fun Workout Wednesday post in the works for mañana.
Hope you’re having a lovely week. Keep on keepin’ on!
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.
I had my first dress fitting. I strategically selected matching underwear and even shaved my legs the night before because I was worried the seamstress would judge my prickly legs and mismatched undergarments (but really? who has time to match undergarments every day?). I packed my shoes that I’ll be wearing the day of the wedding, stuffed a pair of socks in the shoe box, and left work during the middle of the day drive to my fitting.
The seamstress fluffed my dress as I stood in front of a mirror, admiring my bridal self. I listened to time go by as the clock ticked away, my mom chatting away the background, and suddenly the room began ringing, my vision blurred, and I when I opened my eyes, I was on the cold tile floor.
Remember from childhood school plays when the sweet music teacher would kindly remind you, “Don’t lock your knees!” Homegirl knew what she was talking about, because I locked my knees too long and actually fainted during a dress fitting. My friends say “that’s the most Stacey thing I’ve ever heard.” Struggle City, USA.
So there’s that.
In other news
My sister, my childhood friend Chazley, and I raised $1000 toward curing Crohn’s and ulcerative colitis with the Crohn’s and Colitis Foundation of America’s fun, new event called Spin4. This was also my very first time attending a spin class, and I LOVED IT. Infectious high energy and an incredible sweat session (honestly, my favorite things) with fun music and a lot of fun = party on a bike for cures. If you gave to our fundraiser, THANK YOU. I hope you know that you’re making such a big difference in making Crohn’s and colitis less crappy for our future, with more possibilities than ever and maybe even cures one day. THANK YOU ❤
I excitedly drove to Cyclebar Katy this afternoon. I left my office an hour and a half early because I wasn’t about to miss a Throwback Thursday-themed spin class that was FREE!
But, Houston happened. I didn’t make it there in time, even though it’s only a 20 something mile drive and I left AN HOUR AND A HALF EARLY.
So I turned around and drove back to downtown. Then I had and x-rated Crohn’s moment known to human kind in the middle of I-10 traffic (oh, and infusion day was last week, so that’s not really a thing that’s allowed to happen, but Stacey’s body does whatever the eff it wants).
Then I got home, sanitized myself, my clothes, my bathroom, my car, and drove to Kroger where I happened upon the loudest shopping cart known to man and cried my way to the Cheerios, my comfort food.
I thank God for Zack, because I had mega feel-sorry-and-woeful-for-myself moments while in the produce section, but he reminded me that I’m going to do the things I set out to do. I have crazy goals, but I also have ridiculously strong will-power and even though Crohn’s can cause speed bumps and detours and make me sad, life outside of Crohn’s can still be conquered, one step at a time.
In case you haven’t noticed, I don’t always handle bad days gracefully. Sometimes I cry and worry about if I’m capable of accomplishing all that I want. “Does this mean I can’t be a registered dietitian and will need to quit school so that I can live a life sentenced to house arrest?” No. You’re just having a bad day, Stacey. It isn’t a life sentence.
You don’t need to be reminded of your limitations- you just need to be reminded that you can push back on them.
I hope you know that too. Bad days can trick you into thinking life is harder or worse than it actually is. There’s always a silver lining. Mine, today, was Zack. He’s a realist, so if he’s reminding me of how capable I am then…I guess it’s time that I get busy!
Find your good life in your bad day! Keep moving forward, even if you have to roll through the produce section in your lousy, noisy cart and snotty tears. You’re still moving 😉
Hope everyone had a great Wednesday. I like to call these days, “Warrior Wednesdays”. They only come every six weeks/ every time the Crohn’s starts knocking at the door, and they’re infusion days.
How I make Warrior Wednesdays not suck even though I’m strapped to an IV pole for hours: Naps. OH. And Pizza. Specifically, Pink’s (In Austin it was HomeSlice) or the cheap frozen kind from Trader Jo’s which is surprisingly delicious. I’m gonna feel gross and sleepy after the infusion anyway, so I may as well eat some greasy, bad comfort food. Warrior Wednesdays have been dubbed, “Pizza Day” by my close friends and family. Today I added cupcakes while I watched Usain Bolt and the Canadian guy blaze right into the finals. Normally I binge watch Gilmore Girls before/after napping. No shame.
Also, friendly reminder to be kind to yourself.Less weight often isn’t equivalent to greater health. When I’m running a lot, I also eat a lot. I have muscle, which weighs much more than fat. I was 124 lbs at this infusion, down nine pounds since my last infusion-no bueno. What changed? I basically stopped physical activity and slowed eating. When I do eat, I haven’t been fueling with sufficient protein, healthy fats, or carbs. I eat whatever doesn’t nauseate me, e.g. plain cheerios (my inner dietetics student is cringing at myself). I’ve allowed myself to be consumed by stress. BUT I am really, really working on stress management. Oh-I hear actions speak louder, so. Here we go, life.
Keep moving forward 🙂 (even if you have to take some time to slow down and work through stress and life. That’s cool. But pick yourself up, get it togetha’. And then, one foot in front of the other. The world needs ya bad)
Do I have any people aboard the hot mess express with me? Any sistas on the struggle bus? On rough days I refer to myself as “Struggle Pants Stacey.” Zack is a kind soul who believes that I’m not as much of a mess as I think I am. I hope he’s right. But really, I am a hot dang mess.
-I recently lost my IPhone for the veryfirst thirty-first time. I dropped it in a gutter while running through my parking lot to make it to the office without melting from the rain.
-I got an actual warning ticket from a police officer for jaywalking.
-I also got a speeding ticket in my car from a police officer on his bicycle in the same year.
So you get my drift. Hot.Dang. Mess.
And the worst instance of hot messery to date: (Messery is a word; I just used it)
This past weekend driving back to Houston from Oklahoma, I hit Dallas traffic hard. I’m FINALLY on I-45, when I just put my car in park. Everyone puts their car in park. I’m parked an overpass in the middle lane. I pass the mile marker that says, “1” and then I don’t pass anything else because I’m chillin’ on the interstate, with my deaf dog copilot in the passenger’s seat. But then, OH.NO. I start to have all the wrong symptoms. Clammy hands, metallic taste, dry lips. I can feel my face draining of color. I can actually hear my stomach. At first it’s low and nearly inaudible, but then the low growling crescendos into a full chorus of embarrassing, loud churning (even with my deaf dog as the only other being in my car, still humiliating). Nauseous, so nauseous. Blast that a/c! Open all the vents! Can my face actually fit into a vent? That should help. But my face doesn’t fit into a vent, and it doesn’t help. It’s not mind over matter. I’m about to explode. My car is still in park, and so is every other car in Dallas. There’s no exit in sight. OH LAWD. I text Lindsay, “I’m definitely about to sh*t in my car.” And then the unthinkable happens. And it gets worse. I can’t roll down my windows because it’s pouring down rain. Jaxon wakes from his napping copilot position and crawls into the floor board. Even my dog is ashamed of me. I blame Crohn’s, but I could blame Dallas truck drivers, just as well. PERFECT timing. I get a text from the hospital to confirm my infusion appointment for later this week. Actually, just about half an hour too late. I reply with three enthusiastic capital letter “A”s in a row instead of only one. I’m finally able to exit an hour later, meander through the scenic rough part of town near the Cowboy’s Stadium (not even worried at this point. Someone try to kidnap me. I dare you. I have [literal] sh*t you won’t even know how to deal with, because I don’t even know how to deal with it.) and finally find my way to Lindsay’s house, who cheerfully greets me with towels, laughter, a smile, a shower, and a washer/dryer.
I hope you all have a friend you can call when you’ve crapped your pants in the middle of the interstate who will still love you, or at least pretend to. If so, cherish them. Never let that person go. Lindsay is actually my sister, so she’s staying put. But her sisterhood could just as easily given her an easy out of this situation. I definitely could’ve made her childhood a lot more enjoyable than I did at times.
All I’m saying is genuine friendship, even if found through family, is rare and special and should be fully and completely appreciated. It’s not always picture-perfect and cute. Sometimes it’s grabbing towels and running through the rain to help a sister and her deaf dog out of a crappy situation. Lindsay is my person. And if she ever has to take a harsh break from girl bossing to explode her pants on the interstate, well. I’d gladly laugh about it with her later. Love the people who love you through all of your hot messes.