Scary Statistics

My interest in blogging so much happened a year or two after I got sick with POTS. I’ve always loved to write and have had several different blogs or online journals throughout the years, but this is the first one that is really here to stay.

Despite today being Halloween, it is also the last day of Dysautonomia Awareness month, which is something I haven’t been able to touch on a ton since I was gone for much of October. Instead of writing about my own viewpoint, I am going to post some fun facts from the Dysautonomia International Facebook page — along with a few little comments about some of them. Also, Dysautonomia is an umbrella term for autonomic nervous system disorders, and POTS is my specific disorder.

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All photos credit of DysautonomiaInternational.org. Check it out!

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Brain fog is perhaps one of the most frustrating symptoms of Dysautonomia because not only do you feel like you’ve lost a working body, but your brain gets riled up and confused. I am able to manage this one pretty well these days, but can always think better when I am laying down on the couch and have a normal amount of blood pumping to my brain.

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It took me about a week and a half to get a proper POTS diagnosis, mainly because it just took time to get into the doctor who is now my cardiologist. The first doctor who saw me speculated I that had POTS since he could see the drastic changes in heart rate and blood pressure when I changed positions, but we did more extensive testing when I went to a second doctor who is an expert in Dysautonomia. Which leads me to this little fact:

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No wonder every single person I meet in this area goes to the same doctors office and knows about the little red leather chairs. It’s crazy to me that something as widespread as POTS still has so few people who are considered experts in it. I think this will be changing drastically in the next few years.

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My biggest issue these days is pain. It fluctuates greatly from day to day or month to month, but the coat hanger pain and arm pain is the worst. It is difficult to sit at a computer and just type as long as I want to because my arms, shoulders, and pecs have lots of trigger points. I am still going to physical therapy, and hope to work my way up to using a computer for a normal amount of time.

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This makes me FUME. Anyone who tells a person that their chronic illness is in their head clearly has no empathy and has likely been blessed with good health for their entire life. Like, come to any doctor with me and they’ll tell you something is off with my autonomic nervous system. Come to my cardiologist and he’ll tell you every single thing that is going on, and why my body behaves the way it does. I may not always understand why I am having certain symptoms, but there is a logical explanation behind each and every one of them. 

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POTS is not a rare illness, it’s just rarely diagnosed or talked about. I happen to have a more severe case of POTS, however I guarantee if you are friends with a couple hundred people on Facebook that at least a few of them have been effected by it in one way or another. Since the number guesstimating how many people have it is so high (about 1 in 100 people), I speculate many of these POTSies have infrequent fainting spells, some unexplained vertigo, or a little handful of symptoms they are able to tolerate enough that they don’t go searching for answers. As the graphic mentioned earlier, it is only about 25% of people with POTS who are disabled from it.

Whether or not this is something close to your heart (no pun intended!), please take a minute to check out the foundation and educate yourself a little more about Dysautonomia. It will definitely be something you will notice at some point in the future, whether it’s with a friend or an acquaintance. POTS is a very easy thing to test for, as long as a doctor knows what to look for — which can be the hardest part of any chronic illness. Hopefully we will have a cure soon!

Delicate

To say I’m not self-conscious about my chronic illness would be like saying I didn’t care what other people thought of me when I was in high school. Neither is true, but high school was a lot easier because at least everyone else felt the exact same way — and I knew it. Despite feeling self-conscious about the shape of my body or being worried about my future, I knew all of my classmates felt the same way I did. That brought a little glimmer of comfort even in all the confusion.

What’s frustrating about POTS now is that I feel so alone in it. I don’t have a close knit group of friends who are chronically ill, and frankly, that sounds exhausting. We would never be able to make plans with each other because one of us would always be feeling sick, and it would be a whole lot more difficult getting from point “A” to point “B” without having someone who could carry two water bottles or still think clearly even if it gets really hot outside. If I had known in college that one day I wouldn’t be able to carry a Smart Water bottle around for myself I would have been terrified for what my life was going to become.

I freaking hate having a chronic illness. I hate how it makes me feel, I hate that it’s so unpredictable, and perhaps most of all, I hate that I ever have to rely on other people to take care of me. I have always been super-independent, and despite being sick for almost five years now I am nowhere close to being used to all of this. Let that sink in. I have been sick for almost 1/5 of my life now, and I am still not even close to being used to it.

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Every morning I wake up and want to be able to do everything for myself. I want to cook, then clean up the mess in one sitting. I want to be able to drive to meet my friends for lunch without worrying about where they want to go geographically because my arms might hurt terribly from driving too far. I want to have enough energy and strength to go to work, think straight with no interruptions from dizziness or brain fog, and get through an entire day without hurting and becoming stiff — then do it all over again five days in a row. I don’t understand why all of these things that feel like very basic human rights have been taken away from me.

I miss my independence so much I want to scream. I push myself to limits that I know are going to hurt me because I don’t feel like asking for help with little tasks. In my mind, people are going to get annoyed if I keep asking for help with so many seemingly easy things, and it’s not worth losing all of my relationships to feel decent. My brain understands that the people who love me are happy to take care of me, but my heart feels heavy and tight with frustration. I often feel like a burden — not because anyone has told me that I’m one, but because I can’t take care of myself the way I used to. I want to be the one to take care of my parents and repay them for taking care of me for more than just the 18 years they expected to. I want to be able to support myself financially, and I want to feel like I can give acts of service to my loved ones more than I am able to. I want my friends to understand the way that I feel and to know what it’s like to lose every sense of normalcy your body has grown accustomed to — but only for a day so that they can know what my every day is like and why I’m often so tired. I want people be able to feel my frustration so they can really understand how much small things impact me in my day-to-day.

I could write a book on all the things I miss that are really normal. I miss being able to make chocolate chip cookies from scratch all by myself, and I miss doing my own laundry (Seriously!). I miss going shopping without eventually feeling nauseous and dizzy. I think what I miss most is going places by myself. Whether it’s being able to drive into the city to walk around and explore by myself, or taking a mini road trip to see a friend, I wish I could drive myself around without having to rely on loved ones to chauffeur me around. I am 27 years old and want nothing more than to be able to sit in traffic by myself to see my best friend just one a state away whenever I want. I either have to wait until someone can drive me, or have her make the hour-and-a-half trip by herself to come and see me. Both the little and big things about being sick bother me, and I honestly don’t know if I’ll ever fully be used to being different this way. I hate asking people for help, and haven’t gotten a lot better at it over the years. POTS has made me realize that it isn’t always a person who can break your heart. There are other things in life that can take a little piece of it away, too.

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Counting Spoons And Stars

My life hasn’t been normal for a twenty-something living in the suburbs of Washington, DC. Just 18 months after I could legally drink, I found myself stripped of all the independence I had spent time gathering while traveling across Europe for a summer program, working and taking care of myself at college, and moving to New York City even though I didn’t know anyone there. Instead of gathering more life experiences that would shape me into who I was becoming after school, I was thrown into learning the importance of appreciating even little moments in difficult days, and I was facing health issues that most people twice my age hadn’t even begun to deal with yet.


I know I’ve talked about The Spoon Theory some on here, but I saw an interesting graphic on the Dysautonomia International Facebook page, so I wanted to write a little blog post to go along with it.

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I would switch around a few of these. For example, I think taking a shower and shaving or washing my hair takes more than 2 spoons, but going shopping only takes 3, depending on the task (as long as I don’t have to push a cart or carry a lot). I have always been a really big fan of a nice, hot shower, but I honestly don’t even remember my pre-POTS showers. I don’t remember what it’s like turning the dial to the “H” without knowing that my heart is about to start racing like I’m running a marathon, and allotting some time to lie down after I’m done shampooing. I do remember the days I couldn’t wash my own hair, though. I remember first getting sick and not being able to stand in the shower because I would pass out. I remember sitting down in the bathtub in my pink paisley bikini so my mom could shampoo and condition my hair for me since the room was always spinning around me and I couldn’t stand by myself for more than a few minutes. In hindsight, the way my hair was washed is really similar to the way my dog, Macy, gets her hair washed now. We both just sat there and let someone else do a task we  are less than thrilled about, but need to have done. I was 22 years old, had just graduated from college, and could not take care of even my most basic needs.

Despite making slow improvements with POTS, I still always look fine, so people usually cannot tell if I’m having a “good day” or “bad day” just by looking at me. Nobody else can see the way my vision blacks out whenever I stand up too quickly, or when my pain is acting up. Whenever I see someone pop right out of bed when they wake up on television I laugh to myself and think, “That’s so unrealistic!” then I quickly realize that it’s actually most people’s reality. Most people can jump right up from laying down to a standing position and not feel repercussions from their body. I don’t remember ever being able to do that, but logically I know that five years ago I would have been able to. Actually, come to think of it, it probably would have really freaked me out if I couldn’t pop right out of bed all of a sudden!

There are many things that I don’t remember from my pre-POTS life. I don’t remember what it’s like living with a “0” on the pain scale, I don’t remember being able to be low maintenance when traveling or going out with friends, and I don’t remember what it’s like feeling like you’re in the same boat with all your peers. College is so great because even though you are all doing such different things, you are all working toward some sort of career goal. I get sick of explaining what POTS is over and over again, and I hate the look of pity in someone’s eyes after I get done telling them about how even though I am still young, I ended up with a life-changing health condition at the very beginning of my twenties.

There are a lot of things I do remember so well from my old life, though. I remember going outside and finding out it was a beautiful day, so going for a long run. I remember deciding on a whim to train for a half marathon, and bumping up my mileage with ease. My brain remembers going to work and sitting at a computer all day long and all of the projects that I did, but I don’t really remember how it felt. I think about it now and wonder how I was able to do all of that without feeling stiff as a board and paying for it for the rest of the week. I have no idea how I ever survived without a foam roller or physical therapy. Did my body really once not hurt? Why didn’t I take advantage of that more?

I have been blessed, though. The crazy thing about POTS is there isn’t a lot of treatment that helps you get better, other than hard work in the gym (Which is done on the recumbent bike and with tiny hand weights), a good diet, and a great deal of luck. Getting sick has made me learn that there is no doubt in my mind that God does exist, and He has so much power and love to give. I still can’t believe how much more clearly I can think without all of the dizziness and brain fog, and I feel blessed to have good days mixed in with the bad. I actually think that most of the time I am probably on the higher end of the “happy scale” than a lot of twenty-somethings because I have learned to find the joy in the little things in life. I feel happy when I get to meet a new dog, I love being able to go outside for long and leisurely walks, and I really feel at peace every night when I look up at the stars. It’s really amazing to realize that even with so many planets and heavenly bodies so far away, my Creator still loves and cares about me. I always feel small when I think about how far away the stars are and how many other people there are in the world, but it really is amazing that God has a plan for each and every one of our intricately detailed lives.

I still don’t know why I got POTS or what my life is going to look like with it moving forward, but I am going to continue to share my journey and what I’ve learned with people, and I am going to keep working toward a more normal life. I’ve used a few spoons writing this and am getting dizzy because I really need a salty lunch, but I will be writing about The Spoon Theory again on my blog in the next week or so. I want you all to know what I use my spoons on, and how stealing a spoon from another day can be great because I am able to enjoy outings with friends, but it makes playing catch-up difficult the very next day. I, as well as all my other spoonie friends, just want to feel like everyone in life just gets it. That won’t happen unless we begin speaking out about our chronic illnesses, though, so I am going to continue being vocal about what life looks like on the inside for someone with a chronic illness.

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Please take a minute to read this article by Christine Miserando about how she created The Spoon Theory. It is explained so darn well here, and I — along with every other person with a chronic illness — would give anything for people in my life to actually understand what it means to use spoons throughout the day.

Chronically Positive

Who all remembers when I had my “Chronically POTSitive” blog?

I initially created it for a class I was taking for my Master’s, but it was also a really fun way to start blogging and connecting to others with chronic illnesses. I have long given up writing on that — this blog is where my heart lies — but I have kept the mindset of being chronically positive. I’m not going to link any of that content because I wrote much of it lying dizzily on our living room couch so I’m a bit afraid of the errors that are surely scattered throughout my posts, but that is what initially made my heart feel open to the world and to share so much of my journey with others.

There are a few reasons I choose to be an optimist, and always try to look at the glass as being half full, rather than half empty. First, I’ve found that it’s actually a lot easier living as an optimist. Knowing that life is going to get better, even if it’s not necessarily there yet is such a powerful thing. I strongly believe in the power of positive thinking, and I think dreamers often get some of their wildest desires by putting them out into the world and fighting for what they want. Second, it is far less exhausting to be excited about the future than dreading it. Whether it’s with a job, dating, health, or anything that affects your quality of life, it’s always a lot easier getting through a bad day knowing that things will eventually take a turn for the better — even if it’s not that same week or year.

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I got sick with POTS almost 5 years ago now, and I still remember my parents telling me every single day that I was going to get better and I would be able to walk around without fainting again, spend time out with friends, and live a beautifully joyful life. My dad told me that things would get better every single day when he drove me to the gym to do my 20 minutes on the recumbent bike after his long work day in the city. My mom hugged me while I cried on the bedroom floor because I was tired of not being able to stand on my own or go to the bathroom in the middle of the night without calling to wake someone up because I might pass out on my way there. We played “Would You Rather” late into the night when I couldn’t sleep because of my heart palpitations and chest pain. I looked forward to our little games despite the circumstances, and we always made it a point to laugh every day, even when I felt like the world was crashing and burning around me. I got sick with POTS overnight with no warning, but despite being bedridden and feeling sick 24/7, we still managed to find joy in my life.


Glasses are used to be filled and emptied. You end some days with a completely dry glass, but remembering that you can still fill it with something even better is so important to continue moving forward. Let’s say you have a full glass of lukewarm water that gets knocked over and empties completely on the floor. It sucks that you don’t have a drink anymore, but now you have room to fill it with something better — like chocolate milk or iced tea. Getting rid of the water made room for an upgrade. Sometimes life isn’t fair and doesn’t go the way you hope it will. Your heart gets broken by the wrong guy and it feels like the end of the world until you learn you’re better off without him. Then you meet the love of your life, and you realize that getting dumped was actually the best thing that ever happened to you, even though your heart hurt terribly at the time, because it allowed you to find the one person you never want to live without.

POTS was heartbreaking, scary, and life-changing. My arms hurt while I am writing this, and I wish I could sit at my computer and pour out my heart on paper all day long. I want to travel without feeling like I’m high-maintenance, I want to run again, and I want to chase the dreams I had in college still without having to change them because of my illness. If I hadn’t gotten sick with POTS, though, there’s no way I would have really met Robert. I would have moved to New York City and continued to write for a magazine, and I wouldn’t have been in the area before he went on his deployment. I would have missed out on so many great memories with my family, and I would never have seen just how many people love and care about me. My heart may not work like a normal one anymore, but it’s grown several sizes larger to hold all the love that is in my life. People are absolutely the most important thing to me, and getting to hold so many hearts close to mine means infinitely more to me than any job or amount of money ever could.

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God works in mysterious ways, and although I am not sure why He hasn’t decided to give me back the body I used to have, I still have faith that I will have a joyful and fulfilling life. As my sweet friend Sophia often said, “The best is yet to come.”


After I wrote this post I happened to stumble upon this article by Forbes. Optimism is a life changer. Create it one step at a time and I promise you won’t be sorry.

Timeless Life And Love Advice

“Love is patient, love is kind. It does not envy, it does not boast. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil, but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.” 1 Corinthians 13: 4-7

There is a reason this Bible verse is read time and time again at wedding ceremonies. Not only is it incredibly romantic, but it is God’s advice to humans about how we are to love one another. If we could all learn how to love like these four small verses suggest, the world would be an incredibly different place to live in.

I want to dissect 13 Corinthians this week. I have always said this is one of my favorite Bible verses, and I would love to share with you why. Whether or not you are a Christian, these posts will give you a greater sense of who I am, and maybe offer a few tips on how to love those in your own life even harder than ever before.

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Love is patient.

Patience is a virtue.” This is a quote most of us have heard at one time or another, but have you ever worked on creating patience in your own heart? I would say patience is one of the most difficult things human beings can cultivate. Whether you get frustrated about little things like traffic or slow walkers, or are impatient to fill the big things in life like finding the right person to spend the rest of your life with after years of dating around, patience isn’t a value that is just handed to you — you really have to work for it.

I would say I am a super-patient person in many ways, but there are still some areas that could use great improvement. I don’t mind waiting around for a friend who is running late, although traffic annoys me, it doesn’t usually affect my mood, and I am a very good teacher to people who want to learn something new. I am a great listener and would never snap at a friend for telling me the same thing over and over again. A big reason I feel like I have become a lot more patient in the past few years is that I have become a lot more empathetic. Getting sick with POTS has forced me to choose whether I should be patient and gentle with myself while working to get better or be frustrated and angry at the things I cannot control. To me it’s been a lot easier choosing to enjoy the little blessings that come about every day, and learn to deal with the crummy things that come along with a chronic illness without being bitter about them. When people ask me how I’m doing I often find the answer is, “I’m very slowly getting better.” Like, very slowly. I do sometimes feel frustrated with how much work I put into my health and the sometimes microscopic results that come from it, but I also realize that any progress is still good. Slow and steady wins the race, right?

Something I really struggle with is being patient with God’s plan for me and not understanding His timeline. I constantly question Him and whether or not He knows what’s best for me. I have so many desires that aren’t being filled, and I just want everything in my life to line up and be great now; I don’t want to have to wait for it. Impatience is definitely manifested differently in each individuals’ lives, but for me it’s just the desire to be a normal twenty-something. I want to be able to run, hike, play volleyball, drive thirty minutes to DC to visit friends, and write for hours on end without any pain. I want my freedom back so badly, and I want it now. I’ve grown so tired of the weekly doctor appointments, stretching and mobility exercises, and redundant work on the recumbent bike. I feel frustrated that despite working out, eating well, and taking care of myself better than most people my age do, I am physically not able to do as much as my peers. I can’t tell you how many times I’ve wondered why God doesn’t choose to just heal me — I know He can — and how often I do believe I know what’s best for myself. The only thing I can really gather from this is that God isn’t finished with me yet. He is still working on me and has a greater purpose for me than what I have planned for myself. This is where faith and patience become really important components of my life, and I am working to be better at both every day.

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Today’s lesson: Anger and frustration are two feelings, but that doesn’t mean they have to manifest into an action. I think the beginning stages of working on patience is going to include a lot of inner dialogue with yourself and learning how to think and rationalize before reacting. One of the coolest things about humans is that we do have the ability to think and then act, while most other creatures just follow their heart’s desire without weighing the consequences or repercussions of their actions. Patience isn’t easy, but it sure makes life a whole lot better when you do learn how to integrate it into everyday life.

The ER And My Heroes

Hello, blog family, I’m finally back! I had a pretty rough week. I haven’t really gotten much of a cold/flu/virus sickness since getting POTS because I am so incredibly careful with taking care of myself and not hanging out with people if they’ve been sick recently. My cardiologist has always emphasized the importance of a flu shot and taking preventative measures with POTS because being sick makes my chronic illness a lot more difficult to manage. Now I see why.

My parents took me to the emergency room just over a week ago because I kept getting sick and passing out on my way to or from the bathroom (Or the bucket next to my bed). That night was weird because I had decided to sleep at 8:30 due to extreme nausea. I had been in the car for eight hours on our way home from Boston that day, and hadn’t felt well most of the trip home. I typically get a little nauseous on car rides — particularly long ones — so dismissed it as a POTS thing and ate a few ginger chews in hopes of feeling a little better. There weren’t any signs of having any sort of bug, except for the fact that I almost fell asleep while we were driving a few times, which is really not a typical Krista move.

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My Instagram story that night. Yikes!

Anyway, despite going to bed early, I woke up every hour with really bad abdominal pain and couldn’t fall back asleep for more than a few minutes at a time. Finally, around 10:30, I started getting sick. As most of you know I still live at home, so my poor mom had to come in and check on me a million times to make sure I wouldn’t faint and hit my head on the hard bathroom floor. Finally, she came in and told me to get dressed because we were going to take a trip to the emergency room.

Surprisingly I didn’t put up a fuss. I slowly walked back to my room and threw on my Nike sweatpants and “Army Girlfriend” sweatshirt. My mental state was in tact, as I debated putting on my engagement ring. I quickly decided against it, and grabbed Robert’s dog tags instead. I figured just on the off chance something was really wrong I wouldn’t want my ring to get lost during any hospital drama, and that the dog tags would be pretty easy to wear throughout any procedure.

My dad helped me to the car as I clutched a big, white plastic bucket in my lap. Luckily I didn’t need it, as I had cut myself off of food and water an hour prior. Not drinking made me feel sick, but it also left my stomach empty, which was just what I needed.

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Five long hours, two IVs of saline solution, and a couple of Zofrans later, I finally began to feel better. A few different things ran through my mind as I sat on my little white hospital bed. First, it’s crazy that nurses work all hours of the day. Like, we got to the hospital at 1-something, and didn’t leave until a little after 6 in the morning. There were people running around doing their job like it was a normal hour. Second, these people put their own health at risk by being around people who are sick with a lot scarier things than just the stomach bug that I had. Even towards the beginning of my visit I tried to stay far away from the people who were caring for me because I didn’t want to spread my germs. I quickly realized they weren’t afraid of getting my virus when they poked and prodded at the EKG  electrodes I am all too familiar with. It was hilariously comforting having some normal medical procedures done when I felt like hell. I knew they weren’t going to help me feel better, but it was nice having something that made it feel like a normal trip to the doctors. Lastly, all of my nurses were kind and made me feel comfortable — at least considering the circumstances. It makes a world of difference when someone takes care of your feelings along with your symptoms. I always think back to the nurse who told me I’d have to endure my awful POTS symptoms for the rest of my life and that it wouldn’t get better, and I am so grateful that she was wrong. Hope and comfort are both such healing things, and I’m thankful for each and every person who decides to be encouraging and kind to the people they come into contact with.

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Mom snapped an update for everyone when I was all taken care of and on my second IV.
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One hilarious thing I noticed was that I was in such a dazed state when we left the house that I put a sock on inside-out. Oops.

I am completely better now, and am looking forward to resuming my normal life, writing schedule, and wedding planning — which I will have a million updates on in my next few posts! I am also going to keep pushing forward in my journey get healthy again. I have a few exciting diet updates I’ll be writing about on here, and I will continue to work hard at PT and the gym to keep my symptoms at bay. Here’s to the beginning of a new week!

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.

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. 

Love And Pain

Pain and sickness are really difficult things to write about. Trying to describe things you’re feeling but  many people have never dealt with before is essentially attempting to put pen to paper about the way butterflies feel in the beginning of a relationship to someone who still has yet to experience it. You can use the right words, but they won’t really connect until they have something to relate it to.

For example, think about the way some of your first crushes felt, versus how actually being in love feels. They both have the same warm and fuzzy feelings as a base, but feel drastically different. That’s how I would compare temporary short-term pain, such as an injury or a broken bone,  to chronic, long-lasting pain. I’ve experienced both, and before getting sick I wouldn’t have had anything to draw from to compare to the new exhaustion chronic pain brings. You don’t ever get a break from chronic pain. Even when you can kind of ignore some of your problems on your good days, the bad days are right around the corner. I do a great job of not thinking too much about that when I am well, and I’ve gotten really good at living in the present when I can. Then, the bright side is that on bad days I know a good one just has to be right around the corner. Chronic pain is a vicious cycle, though, and wears you out to your core. Not only does everything hurt, but you also are always so incredibly tired from not being able to sleep. Whether your body is annoyed from being tense and having your muscles screaming at you all day long or your brain keeps you up thinking about the pain you’re feeling, you don’t get good rest. I don’t remember the last time I got in bed and just fell right asleep. It’s been years.

I’m constantly sending articles and trying to pull up scientific findings about my conditions to people I love because I want them to understand how I feel. God, I want to be understood. I hate feeling cranky because of my pain or having days where I can’t stand it anymore and just break down and cry. Granted, the latter are few and far between, but sometimes my body just can’t take anything else and needs some sort of outlet. Talking isn’t my best one because I want to help other people feel happy and good, so I don’t like to complain — or maybe I don’t know how to complain properly; I haven’t quite figured that one out yet. I love to write, but I don’t always have the strength, and frankly I don’t want to leave behind troves of essays on how much my body hurts.

I just don’t feel like anyone I’m incredibly close to has been in a situation quite like mine, and it’s minorly heartbreaking knowing that yes, I always have a shoulder to cry on, but I don’t have anyone who really gets it and can tell me that they know how I feel. That’s why I am motivated to write about my struggles. 

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Don’t get me wrong; I don’t want anyone I love and care about to ever understand chronic pain or any other kind of difficulties in life. One thing I’ve always been thankful for is that I’m the one with this problem. I would gladly take every pain away from the people I care about if it meant they didn’t ever need to face it themselves. Not only do I feel like God gave me a strong heart and will to keep pushing forward, but I think He gave me a beautifully optimistic outlook on things, and I’m really grateful for that. I think I’m handling the hurdles I’ve been thrown the best I possibly can, and I actually think that despite being a painfully average twentysomething, I am exceptional in accepting the negative things in life as a reality and then figuring out how they can turn into a blessing — or at the very least, something that doesn’t consume me. I have always said that I may have POTS, but POTS doesn’t have me. The same goes for my chronic widespread pain; it’s a big part of my life, but there’s no way in hell that chronic pain is going to take my entire life from me. I will count my blessings until the day I die, and today those are my loved ones, dogs, chocolate, Taylor Swift, Brad Paisley, and each and every one of you. 

Life As A Burden To All

I would be lying if I said I wasn’t sometimes insecure about having a chronic illness.

I often try to hide my pain and symptoms, even from those I love most. First and foremost, because I want to try to ignore the fact that my life isn’t the way I wish it was. A part of me feels like if I try to shove all my frustrations with being sick deep down that some of them might disappear. Maybe if I close my eyes and pretend I’m not dizzy or hurting one day I’ll wake and that will be my reality.

Second, I hate sounding like a broken record. I’m in pain every day, so if I voice my discomfort people will get sick of being around me really, really fast. It’s kind of like when someone runs a race and keeps talking about how sore they are; it’s completely valid and understandable, but after being reminded for the fifth time that their legs hurt you wonder if they think you are hard of hearing. No one wants to hear about how I have sharp, painful triggerpoints in my shoulders or can’t load the dishwasher because it hurts my forearms to grip anything for more than a minute or two.

Third, I feel broken. I sometimes wonder why people still care about me since I can’t go out and have fun like a normal 26-year-old. I can’t give the acts of service to my friends and family that I’d like to, I don’t have a normal 9-5 job, and I need help with things that others do mindlessly on a daily basis. My parents have taken care of me since I got sick, and it’s been really hard to rely on others to do things that I want to be doing for myself. I’ve always been pretty independent, so giving up control in my life has been one of the toughest tasks.

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My heart hurts because my head isn’t affected by this illness. I want to be able to run, dance, and crank out dozens of pages of words at a time. I want to be pressured by the journalism deadlines that were once the bane of my existence, and I wonder why my body has betrayed me and doesn’t allow the vigorous work ethic I once prided myself on. It hurts feeling like this illness hasn’t just taken some of my hobbies, but it has also stripped me of having a purpose on this earth. 

That’s lie #1 I was fed when I first got sick. Deep down I know it isn’t true; I actually believe this is Satan’s disgustingly twisted game of trying to make a very complete and beautiful soul feel worthless. Worthlessness is a dangerous feeling because it’s based on a lie that only seems real to the person feeling it. I strongly believe every single person placed on this earth has a purpose they are here, including myself. I think each human being can add invaluable love, kindness, and strength to the world if they choose to give it. Each individual has some sort of special “X factor” that they can offer people in their life.


God wrote in Psalm 139:14 that each and every one of us was fearfully and wonderfully made. This means that we were made with His very own heart taking an interest in us, and that He made us different than anyone else. It means He cares about us more than we could ever understand.

That being said, I know so many others who are also different in one way or another and have had this feeling on some level. The next several weeks I am going to be completely smashing this fabrication and showing that the feelings of worthlessness are based on a complete lie. Whether or not you are a regular reader or you’re new here, I would love if you would be patient and stick around until I get to the main point of these posts. This message is so important, and I want to connect to your heart and help it listen to how I have begun to debunk the lies that the evil in the world wants us to believe.

In case you don’t come back, just know that you are a valuable part of society and you can make a much greater impact than you even realize. God gives incredible blessings to those who keep pushing forward and He can create a really beautiful masterpiece from brokenness. You just have to stick around to see what the beauty in your hardship is. Sometimes it won’t be as obvious as you might hope, but He sprinkles light into even the darkest of stories.