Marks In Time

A lot can change in a year.

Time is a funny thing because as intangible as it is, it sometimes feels very concrete. There are certain things that make time more significant. You know both college and high school are going to last 4 years, your birthday will be around again exactly 365 days from the last one, and the Christmas season is every 48 weeks or so. Having a chronic illness makes time a little fuzzy sometimes, though. I have had POTS since August of 2013 and can pinpoint different phases throughout my journey, but it feels weird that I’m coming up on five years now. I have been fighting for my health longer than the time I spent in college, which is super weird. When I think about going to Mason I have such different memories from each year I was there. When I was a freshman I was timid and shy. I didn’t feel like I had a place I belonged, and I left campus to stay with my family just about every other weekend. I liked my classes and had a couple of really close friends I would keep for the rest of my life, but I was still figuring everything out.

My sophomore year was a blast. I made so many new friends, and I had a group of people who felt like home. I made friends with the girls I would call my roommates the next year, and I was an editor for the school newspaper. I didn’t find as much confidence with writing until later in college, but I looked forward to every day I would spend in the Broadside office with all of the other aspiring writers. Sophomore year was spent finding myself, and learning what I wanted to do the rest of my time in college.

Junior year was probably my favorite. I loved feeling secure with some of the best friends I could ever dream of, and had a great balance of work and play. I turned 21 that year and will never forget that birthday. I waited to drink until I turned 21, so all of my friends crammed into our little apartment living room to celebrate with me. People brought six packs of different things to drink, but I stuck with a cherry Smirnoff Ice. I was surprised it didn’t taste very alcoholic, and took my time sipping on my new favorite drink. That year we spent long nights dancing at the bar down the street every Thursday, and still had the energy to go out and explore restaurants and museums on Friday and Saturday.

Senior year before moving to New York is a blur, but my last semester of college spent in the city was one of the best memories from those four years. I had my fair share of adventures, long hours working overtime in the office, and despite blocking it out most of the time, I had my share of lonely nights in that little shoebox apartment on the eighth floor. New York was definitely an enormous highlight of my college career, and I’m still so thankful for each and every memory I gathered from that time.

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My mom took this picture of me my first month being a New Yorker. I felt so at home rushing around the city in my little dresses and tights, and fit in with all the editors at Seventeen by living on coffee, books, and cupcakes.

Do you see how easy it was for me to create four years of my life?

It hasn’t really been like that again until recently. The first few years of getting sick really blur together. I have a little bit of a timeline I can create, but it isn’t the same concrete, certain one I have from every other year of my life.

I got sick and went to a million different doctors. I had my heart hooked up to echocardiograms, holter monitors, and got tested for diseases I had never heard of. I watched The Food Network, then I watched The Office, then even later I started a new series called Pretty Little Liars. I went to the local shopping center with friends and found myself lying on the lobby floor of the movie theater to keep from fainting. I went home and cried, and wondered why I was the person God allowed to get sick. I remember nights of lying on the couch and having conversations with friends about the outside world I no longer felt a part of, and wondering aloud if I would ever be able to have a normal twenty-something life again. I remember getting my first job while I was home sick, then having chronic, debilitating pain from using my arms too much. I was diagnosed with Ehlers Danlos Syndrome, and had to stop doing the one thing that made me feel kind of normal and independent.

I remember moments, but I have no idea when they happened.

I also don’t know when I started getting better, as it’s been super-slow, but there are a few things that offer great markers of healing. One year ago my mom hosted a Bunco party at our home. She always takes the month of February, and I often get invited to come play with her group when it’s held at our house. Bunco is essentially a game of rolling dice and giving an opportunity to catch up with friends. Last year I remember finishing the game and going upstairs and feeling heartbroken at all the pain I was in — just from rolling dice for an hour. My pectoral muscles were sore and ropey, and my shoulders and arms burned with sharp, constant pain. I regretted taxing myself so much for a game, but I also wondered how something so simple could cause so much of an issue. It wasn’t normal, and I hated having to choose between living my life and feeling good. 

She hosted this same party again last night and I got to attend. I am sore and by the end of the night I was glad to be done with the rolling motions, but today isn’t an 8 or 9 on the pain scale like it was last year. My physical therapy sessions are so beneficial for my health, but I will be able to make it until my Friday appointment without trying to hold it together while I’m reeling in pain. I’m more sore than I am on an average day, but I don’t feel like I’m going to have a complete breakdown from being in pain. I can easily handle a little bit of soreness and as long as I take it a little easier today I will make up for everything with my stretching and workouts. This is proof that despite relying heavily on physical therapy and rest, I am making progress.

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Today’s lesson: Even if you feel frustrated because something isn’t changing, taking a look at the really big picture and having little mile markers is so helpful for keeping spirits high. I still may have a long way to go in being normal again (And maybe I’ll never quite get there), but any kind of baby steps I can take is still progress. I’ve already learned so much through my journey, and I trust God to be with me every step of the way. Staying positive and remembering blessings throughout every step helps me have a thankful heart. My path has helped me become more empathetic, kind, and understanding, and it has led me to my new forever family member, which is absolutely priceless.

To The Creatives Of The World

Your work matters too.

Having a chronic illness makes me so, so thankful for people who are different than I am. I appreciate the people who can handle blood and unhinged joints, and those who have brains that work for chemistry and biology. I’m not wired like that; I enjoy using my hands to write and create stories. I like painting metaphorical pictures for people, and I love resurfacing feelings from my heart and putting them on paper for others to read and relate to.

Something that really kept my spirits up when I first got sick with POTS was watching The Food Network and reruns of The Office. Laughter is often some of the best medicine, and despite not being able to do very much physically, I was able to laugh and dream. I learned as much as I could about food and health, and I lived each moment in the present as the room spun in circles around me.

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Every chapter of my life has included a soundtrack. I hear an old favorite song and it takes me back to a memory. I often do my best writing while I am listening to music, and will play a song on repeat until I have spilled old feelings on the pages in front of me. Despite not having the same ones anymore, I have a perfect memory for feelings. I know them all so well and even though I can’t remember dates, numbers, or physical details, I always remember how my heart felt about something. The best part about my writing is that it strikes a chord with people. With each blog post I get messages about how someone could relate to my own thoughts and feelings, and I take a lot of joy in knowing I can make others feel less alone by sharing my life with them.

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There are a lot of people in the world who get credit for their practical work, but I think creative people sometimes get left out of the thankfulness. I’ve written posts about how great I think people like doctors, physical therapists, nurses, and researchers are — without them I would be a complete wreck — but I’ve conveniently left out the people I understand most. The artists, the writers, the actors, and the comedians who all make life just that much brighter and more beautiful. The world is a really cool place because we have such a vast mix of humans who care about all of the other kinds of people. Without the left brains we wouldn’t be able to fix painful everyday problems, and without the right brains we wouldn’t have all the entertainment options we do. Both types of people bring more joy to the world, and we are all are a piece of the puzzle that makes for a happier society as a whole. No matter what your talent is, use it to make the world a better place.

Today’s lesson: Just because you can’t cure sicknesses or fix things doesn’t mean you aren’t important to the world. Laughter and bringing joy through the form of creativity and entertainment is a very important job. Keep practicing what you do best and giving back to the world with your own unique talents.

February 13th

Tomorrow is my favorite day of the year. I have always loved Valentine’s Day because I love love. That’s three of the “L word” in the same sentence and I don’t feel bad about it.

It’s actually really funny that this has always been a favorite of mine because I was typically super-single, yet I always looked forward to it just as much as Christmas.

Every year before this one I have offered to send Valentines to anyone who wanted one. I want other people to love the holiday as much as I do, but since that’s a pretty lofty goal I’m also happy to just warm someone’s heart just a little bit with some words I put in a glittery pink and red card. This year I didn’t put out a giant social media invitation. Part of the reason has been I’ve been busy and it takes a lot of energy to do these Valentines. For the normal Krista it takes a lot of work, but POTSie Krista can’t really write a lot without hurting my arms. I really have to pace myself when I take on the task of Valentines, so next year I’ll have to start really early.

The other reason I didn’t want to write a bunch of cards is because I wanted to really make this a memorable year being engaged. I want to remember all of these special little moments Robert and I have together as an engaged couple, since starting next year I am going to be married for the rest of my life and this is such a unique time filled with anticipation and excitement for our next chapter. I’ve really treasured the time we’ve spent together, and lately I’ve been reflecting on just how wonderful it’s been having him living so close to me. After spending so much time together on a regular basis, it’s hard to think that at one point we were separated by 6,500 miles for almost a year. Talking about the deployment puts a lump in my throat, but it also makes me want to happy-cry. That long distance really set a foundation for our relationship and set in place an amazing amount of trust and appreciation for the little things we get to enjoy. It makes me grateful to be able to hold Robert every single day and thankful that we can do the everyday activities like running errands and going grocery shopping together. My heart goes out to everyone who can’t be present with their loved ones; being far from someone you love more than anything is one of the most difficult feelings in the world.

Whether you’re super-single, think Valentine’s Day is just a gimmick that companies created to make money, or just hate all the sparkly hearts in general, I encourage you to put a deeper spin on the day. February 14th, to me, is like a second Thanksgiving. It’s another day to remember what the people in your life mean to you and how blessed with love you are. Whether or not you get a card this year, I encourage you to give one. Friends used to always be so pleasantly surprised when I walked around my college campus with red and pink goodie bags filled to the brim with chocolate and a love letter, and I think their reactions ultimately made me happier than anyone else. Valentine’s Day is a great time to show your significant other how much you care, but it’s also a wonderful opportunity to show extra love to everyone in your life. The world can always use more kindness and reasons to bring happiness to those around us.

I’d Like To File A Complaint

Do you ever find yourself really annoyed because you find yourself complaining about something really trivial like being stuck in traffic or not having any milk keft in the fridge?

That’s how I feel today. I went to a concert last night at my alma mater, and my lower back is k i l l i n g me. I think I hurt myself from standing too long and not wearing the proper shoes (read: sneakers), which sounds ridiculous but is life with EDS in a nutshell.

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Really, though, my brain is functioning well, it’s rainy and I don’t feel super symptomatic, and my heart is content. My main issue is that I am medium-grumpy today. The pain is getting on my nerves, and I feel frustrated that every time I do something fun and different I have to take it easy for a few days after, while my friends can keep going and going without any problems. I am annoyed at my body for not just being normal — the way it used to be — and I hate feeling like a grandma at 27. Everything takes so much planning, and I turn down certain plans that I want to do, just because I have to weigh how much I have going on the entire week, rather than just a single day.

So, since I am bitching about a million and one things right now, I want to take a minute and realize what I should be thankful for.

I can get up off the couch and walk around. I have feet, legs, and arms that all work. My heart works twice as hard to keep me alive, but it’s pumping and keeping me going! Most of my organs are a bit goofy, but they are all working overtime to make sure I can keep living, and I am so, so thankful for that. I have a wonderful family who loves me, the best fiancée in the world, and amazing friends. I am doubling my family this fall, I am not allergic to chocolate (I count this as a blessing, as I developed a bunch of food sensitivities as an adult), and I have a roof over my head and never go hungry.

I could go on and on about more beautiful things in my life. Dogs make up a great number of blessings, and sunshine, birds, butterflies, and heat are just a few more. Candlelight, snuggling, soft blankets, The Office, country music, buttercream frosting, gentle massages, writing, decaf coffee, warm memories, Pinterest boards, glitter, loved ones’ sweatshirts, snail mail, flowers, dog tags, and a diamond are just a few of the beautiful blessings life has given me.

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As much as I want to complain today, I am going to allow myself a minute of being annoyed, and then just let it go. My pain isn’t an 8 or a 9 today, and I can handle everything that I have on my plate. I just have to turn my frown upside down and enjoy the simple pleasures until I can go out into the world again and take on the next adventure.

Today’s lesson: The next time you want to punch a wall because you’re frustrated about something, take a few seconds to count your blessings. It helps put life into perspective, and makes you realize it’s an enormous waste of time to be grumpy when you can learn to be content instead.

More Than Just A Super Bowl Win

If you’ve been following along this blog for a little while now, you’ll know that I’ve become quite the Patriots fan since I met Robert. He did a great job converting me to root for all things Boston, and I think I have some good tips on how to bring a significant other to whatever your dark side is.

Despite being disappointed about not winning the Super Bowl this year, I was quickly intrigued by the Eagles’ quarterback, Nick Foles. I saw stories about his wife plastered all across my newsfeed, talking about how she was diagnosed with POTS in 2013 — the same year as me. Something I think is fascinating about POTS is that so many of us were athletes before we got sick — most of which were actually even more active than the typical person. I ran distances longer than the majority of the US population, ate really well, and jumped on any opportunity of athleticism that was offered. Along with running, I was almost always involved in some sort of club or intramural sport and had friends who would play pickup games with me. Tori Foles was a setter for the volleyball team at University of Arizona, shortly after graduating, she had to spend a month in the Mayo Clinic trying to figure out what made her suddenly get sick.

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My first year with POTS I had to go through the airport in a wheelchair.

It gives me chills how similar our stories are, and how many other young people have the exact same details in theirs. Athletic, young woman with career ambition gets sick right after graduating college — when she’s supposed to just be starting life. It also looks like we both reached for God in our time of hardship. God is still Someone I sometimes struggle with understanding, however having POTS has made me realize how much I need Him. There are things in life that we sometimes have no control over, and our only options are to face the obstacles alone or choose to lean on God for help. Although I sometimes complain about not having a normal life, I also realize what an amazing blessing it is to have healed as much as I have. Instead of fainting every time I stand, I just get dizzy or my vision blacks out for an instant. I don’t go through the entire week with a migraine anymore, and I am able to be in upright positions without having a million different symptoms to control. I still deal with the pain from my Ehlers Danlos Syndrome, but having a brain that actually gets enough blood to it is an enormous blessing.

Something that makes the Foles’ story so beautiful is the fact that Nick and Tori decided to get married just a month after she got diagnosed. This makes my heart so, so happy because POTS is such a life-changing and frightening illness, particularly in the beginning when you’re still learning about it and how to manage your symptoms. There is a reason wedding vows have the line, “In sickness and in health,” because falling ill is one of the most difficult things life can toss at you, and you want to be sure the person you commit to spending your life with will stick around even during hardships. Perfect weddings, fun vacations, and nice things are all fun, but what is really beautiful is seeing how two very imperfect people come together and choose to love each other every single day.

I am not an expert on marriage by any means, but I think when you decide to take someone to be your forever, you are committing to choosing them each and every time. You won’t always have a picture perfect life — you may fight, be annoyed at your forever roommate for making the kitchen a mess, or in my case, or just have a downright bad day — but you will absolutely always love each other. At the end of the day you’ll have someone next to you who has your back no matter what, and that is what I think is the most beautiful thing life has to offer. True selfless love.