This morning I wrote about how shockingly well I am handling all of this. Tonight, I’m crying about it. I think this is kind of typical of everyone right now.
I’m sick of being stuck inside and am dying to go on a normal date, missing my family and friends, and would love to be able to look forward to the beach this summer — or even just spending some time outside. I am scared for the health and well-being of loved ones and strangers alike. I am dying to go to Trader Joe’s to get my usual favorite snacks, and I don’t want to keep seeing how different life is by watching the news. It all feels like a weird dream. The beginning of this feels so long ago now.
All of this is incredibly confusing. Like, how did we get to a point where people can’t go outside? Anyway, this morning I wrote a much more lighthearted draft, and want to still offer some of that sentiment, even as a comfort to myself right now.
First, I have done the whole quarantine thing before — or at least it felt similar to me. When I first got sick with POTS I could barely sit upright, much less go do my normal activities. I created a new normal that gave me as much joy as I had in my 22 years before getting sick. It wasn’t always easy and I often missed things about having a healthy body, but I was still able to be happy, despite the earth-shattering change. This change was actually even bigger than the pandemic feels because I was so used to being an athlete and out in the world, but literally could not leave the couch or go from floor to floor in the house more than once in a day. Now I at least can stand up to cook, go to the basement to exercise, and play hide and seek with my dog. Lesson one, you can have joy in the face of adversity.
Another thing POTS taught me is that circumstances change. That’s lesson two of learning to deal with a life-shattering change. The first year I was so sick even going to the grocery chore was a difficult to impossible task (read: me lying on the aisle floor until I could stand again without passing out). Over time I was able to run errands. Then I could go out to dinner. Then I worked my way up to doing things like trips with friends or walking around the beautiful city of DC. I still can’t run or anything, but I can walk for an incredibly long time without feeling dizzy, my pain is decreasing astronomically, and I can drive for an hour at a time! I’ve really come a long way. My new normal did keep changing, and I’ve been able to work with it every step of the way. Things change, and even if they’re slower than you’d like, you learn a lot of lessons along the way and can still be joyful.
Finally, the most important thing in life will always be your loved ones. For this I am sure (Insert Nunzio voice here, Robert).
I’ve always known this, but having any kind of health scare definitely changes your outlook. It’s funny because I do definitely think taking things for granted is in our nature. When I was really sick I always thought I would never take little things for granted if I was lucky enough to get better, but sure enough, things like going out on walks with my dog weren’t aren’t appreciated and I haven’t taken advantage of the fact that I can do yoga now. It’s weird being so separated from everyone, and I think this experience will change the way we spend time with others. I hope we are more present and cut more time out of the day to be with people, and take the time out of the year to travel and visit our long distance friends and family.
Anyway, I think we all need to remember that this is going to ultimately be just a blip in our lives if we can all come together and support each other. I pray that we can get things under control sooner rather than later, and that we can all be tough together. I know this isn’t easy, but I feel like it will be similar to my past experience in that we will appreciate more in life, worry less about trivial things, and learn to be joyful through every stage in life. There are a few things I’m incredibly grateful for right now, and I know I’m being looked out for and taken care of, which is really comforting in this strange time. I hope you can find some things you’re thankful for in this transition time, too!
One of the hardest parts about having a chronic illness is feeling like I have less value because I am not contributing as much to the community as my peers. Before I got sick I was working toward pursuing a career in journalism. I took internships, worked part time at a newspaper, and was excited to continue my journey working at Seventeen magazine to hopefully impact young women in a positive way. I have always felt that words are one of the most powerful tools we have, and all of us have a wonderful opportunity to lift others up and make them feel less alone in this big world.
I always dread the question, “So, what do you do?” when I meet someone new. I hate explaining right off the bat, “Well, I got sick when I graduated from college, so I’m trying to get back on my feet and am working on getting my health in line.” Over five years later now I have made leaps and bounds in progress, but I still am figuring out how to manage what I’ve begun to accept as my new normal. Not only is my answer incredibly awkward, but I also just feel so lame not having a cool job or anything to show for my life. I worked so freaking hard before I got sick and have absolutely nothing to show for it anymore. The internship I had at a national news company isn’t relevant anymore, and my job at Seventeen wasn’t able to materialize into what it could have because I couldn’t even walk down the driveway to the mailbox when I first got sick. My illness didn’t just take my body away from me; it took away every sense of normalcy I had ever worked to create. I have nothing to be proud of, and feels like I can’t make an adequate contribution to society anymore. I have relied on others to take care of me, when all I have ever wanted to do was be able to take care of others.
If anyone who had a chronic illness told me they felt worthless, my heart would feel completely broken and I would try as hard as I possibly could to show them what an enormous, ugly lie that was. People shouldn’t feel like they don’t have worth in this world just because their body doesn’t work the way it’s supposed to. Our value does not reside in what we do — or don’t do — for a living, and people can still change lives when their bodies don’t work properly.
Whether or not you are a Christian, I think the Bible has a really beautiful sentiment about our worth as human beings. Psalm 139: 13-14 says, “For You [God] formed my inward parts; You knitted me together in my mother’s womb. I praise You, for I am fearfully and wonderfully made. Wonderful are Your works; my soul knows it very well.” This doesn’t say that we have value because of our job or what we do; it says we were born having value. We are made in God’s image, and He only creates beauty for the world. I think it’s very powerful knowing that even before ever doing anything in the world we have irreplaceable value. Just ask a mother of a newborn baby; she will say that her child means absolutely everything to her, and that is merely for existing, it isn’t anything he has done to make her feel this way.
I am a firm believer that everyone has a purpose in the world and can make a difference in a way that no one else could. Just because you are bedridden or need to be taken care of absolutely does not mean you don’t have value in the world. You have qualities to offer people that make you absolutely irreplaceable in their lives, so we need to stop telling ourselves the lie that we aren’t as valuable because we are different.
On the other hand, I understand the ache that is in your heart for the opportunities you have missed and feeling like some of life has passed you by. I don’t have the resume I would have had if I hadn’t gotten sick, and there are a lot of experiences I missed out on. It’s weird listening to my friends all talk about what they’re doing at work and how comfortable they are there. I still remember working at the magazine’s office like it was yesterday, but I also think that experience was so different because you’re the lowest on the totem pole. Dealing with an illness does teach you what is important in the world, though, and gives amazing perspective people often don’t have until much later on in life. It teaches you to hold on to all the amazing blessings you are given, because sometimes they can be fleeting, and to be thankful for the people closest to you. It teaches lessons of patience, hard work, and resilience. You learn what it’s like to be empathetic with people, rather than just offering sympathy, and you are given an opportunity to be a light for others who go through the exact same things you deal with on an every day basis. Chronic illness builds beautiful warriors who have such important lessons they need to share with the world.
I understand questioning your worth as much as anyone else with a chronic illness, and I am right there with you trying to find my own purpose. The words I wrote on this page make sense to my brain and I know that my life has incredible value, but my heart sometimes has a hard time making the connection. I feel lost in a big world that doesn’t understand me, and I am getting swallowed up in the lies I tell myself at night. Being sick has taught me I’m a fighter, though, and I’m not going to stop searching until I figure out what I’m here for. Deep down I know I have an important role in the world. I just might take a little longer to figure out what it is and that’s okay.
Each period in my life has had something memorable that I can pinpoint and think back to. Except when I got sick with POTS. I remember very vividly how scary the first few days and nights were, but I don’t remember some kind of big details that were during that time period. Other than my family knowing what was going on from being there, I don’t remember telling anyone that I got sick overnight. I don’t recall even sending out one message saying I felt like I was dying and that I had gone into some sort of shock; I don’t think I did. I was so focused on how my body was completely giving up on me that I didn’t think to message anyone about it. Looking back, that was really strange and unlike me, but I think I was just too focused on the problem at hand to think straight. I’ve asked people who were close to me at the time what they remember about me getting sick, but I don’t think there was a monumental moment that anyone could recall. I don’t think the people who were really close to me understood how big of a deal this was until a few months later when I was still somehow sick.
I decided to do some digging and show you a little bit of my life pre-POTS, and then few things after getting diagnosed. So much of this time is so foggy to me because I was just in survival mode and trying to navigate life with a new collection of health problems. I don’t really remember living the first few months, with the exception of some pretty life-changing doctors appointments. Even those are a little bit foggy, though. I couldn’t stand very long when I went to my appointments, and often had to retake my blood pressure several times because I couldn’t stand very long without passing out.
One thing that is absolutely crazy to me is that my husband, Robert, never knew pre-POTS Krista. He’s heard about what I used to be like and the hobbies that I had before getting sick, but he didn’t experience going running with me or seeing my hilariously serious work ethic in school. He never held my hands before they were always hot or cold, and didn’t get to see how vicious I was in even a casual game of volleyball. This is something I wish was different, and that I feel sad about on occasion. It’s a big enough deal that my best friend Audrey included this tidbit in her maid of honor speech at our wedding — though she said the kindest things and that he didn’t need to know what I was like before I got sick to love me for my heart. It’s weird feeling like there are parts of me that are just gone completely now that I can’t be as active as I once was.
That was the Krista I felt proud of, and miss a lot of the time. Don’t get me wrong, I still think there are so many wonderful traits I have after getting sick, but work and sports are not a big part of my life anymore, and these were such a large part of my identity for so long that it’s been hard trying to recreate myself and figure out what I can do with my new restrictions. Since getting sick I lost so many things that brought me joy, and am still trying to find a balance between having experiences and continuing in my journey to getting better.
I got sick with POTS in August of 2013. Up until then, I loved working. In college I always had some sort of job in writing, and made money babysitting a few days a week after school. I worked for the school newspaper almost every semester as a columnist or editor, had several in the journalism field, and was involved in a few different clubs on campus. I loved being busy and whenever I had free time, I tried to find something new to occupy my time with.
2013 started off getting a phone call from my number one internship choice. After several interviews, I had snagged the editorial job at Seventeen magazine in New York City — my favorite place in the entire world. I was on top of the world, and although I wished a little bit that I had been able to enjoy the previous semester at college knowing it was going to be my last, I knew this was the step I wanted to take. I was ready to get out into the real world and start working. It had always been my dream to be a journalist, and I would finally get to do what I loved! Granted, I had a full course load I had to take online, but I knew it would all pay off when I could move to New York and continue working for a magazine with the Hearst corporation after completing my internship there. I was confident in my writing, and I knew someone would want to hire me full-time when I was done working for free. It turns out they would, but I wouldn’t be able to accept an offer to my dream job just two months after completing my time in the city.
Rewind to 2012, right before I got the phone call and moved to New York City. This was my last year without having POTS.
I celebrated my 22nd birthday at a Japanese steakhouse that had the most hilarious birthday ritual. They kicked the night off by bringing a balloon and a flaming shot. Then, all the lights in the restaurant went off and a disco ball came down from the ceiling. Five servers with different instruments began to play, and sing “happy birthday” at the top of their lungs. I cried I was laughing so hard. They spoiled me for the rest of the night and kept bringing little free dishes in between our stay there. I got sorbet, cheesecake, drinks, and little appetizers throughout the meal. Every time someone different came over and said, “happy birthday!” and delivered some sort of new surprise. They ended the night by putting a $3 charge on the bill titled, “Birthday Party.” It just made the night that much more funny, and this experience was what prompted me to take Robert to this exact restaurant after just a few dates with him to “celebrate his birthday” there too (Please read that link; to this day it’s one of my favorite posts on this blog. Thanks, babe!).
A few days after that, I ran my first half marathon. I had been training for it several months prior and was excited to set a new distance record for myself. Running had always been an activity that I loved and was a big part of my routine. I ran at least 4 days a week, usually more, for all of my adult life. I miss feeling my lungs burn from the cold, and running until all my thoughts just evaporated into the wind behind me. Running was one of my favorite stress-relievers, and I wish more than anything I could feel what it was like again.
I got the time I had hoped for and finished the race without having to stop. I was exhausted, but proud of myself. I wanted to run another one to see if I could beat my first time, but I was happy to be done for the day.
A couple of weeks later, I spent the new year out of town, and got an a call from one of the hiring managers at Seventeen saying that I got the internship I had interviewed for. It was a little bit of a shock having to pack my things, find someplace to live, and move to the Big Apple in the span of a week, but I always loved adventure and was so giddy with excitement that I didn’t really have enough time to think about anything else.
I packed up my life into a few suitcases and took the bus with my mom to move me into my new little 9X11 apartment and explore the city that was going to be my new home for the next several months. Lugging my bags up and down the stairs across town and learning how to use the subway is a memory I’ll never forget. It was so much fun moving to a place filled with so many of my dreams and endless possibilities.
The Hearst Building was the home of the Seventeen magazine office. We worked on the seventeenth floor, and I loved every day of work — so much that I often stayed late into the evening to keep working on projects because I enjoyed what I did and wanted to take on as much as my boss would allow. I was an editorial intern, but ended up being able to do some of my own writing for the magazine. My work involved a lot of research, interviewing, editing, and even helping pitch ideas to the executive editor. I got to go to business meetings all around the city, and had a few errands to run on occasion, but it felt a lot more like a real job than it did an internship. The better I did, the more they trusted me with real assignments, and I thrived in the high pressure, short-deadline world of journalism. I loved it so much that I knew I had picked a career where I wouldn’t hate going into work every day.
One of my favorite things about New York was that it truly is the city that never sleeps. Barnes and Noble became one of my favorite places to spend my free time because it was just the right amount of chaos to get work and studying done. My apartment was so tiny it felt like there wasn’t enough room to set up my books and laptop along with the rest of the things I had taken to the city. I took my textbooks and a snack to the store, and read and worked on papers for hours at a time. I enjoyed the classes I was taking, and only had 13 credits to complete that semester since I had packed my schedule the previous year.
New York offered the kind of life I loved. I was independent and worked hard at my job, and exercised regularly. In the past I hadn’t enjoyed being alone a lot, as I was an extreme extrovert, but I felt really comfortable being my own company in the city that felt so alive. I loved going on adventures, exploring, trying new things, and meeting new people. My favorite thing about New York was that every day was so drastically different, even if I began with the same route. I never knew what adventure would happen next, and I loved my life that way. It was exciting and fun learning how to constantly adapt to new things.
Going back and reading through my Tweets, Facebook posts, and journal entries from that time makes me so happy. Living in New York was truly one of the best times of my life, and I feel so thankful that I was able to experience it before I got sick. I used to often feel frustrated that I would never get the taste of working overtime in the big city again, but I am incredibly grateful for all the memories I have from that time. I have a million different things I could post on here, but will just share my favorites.
I found a Trader Joe’s across town and enjoyed “cooking” microwaveable food for lunch and dinner. I would walk if it was nice enough out, despite being almost 2 and a half miles from my apartment each way, and always stocked up on my favorite things. It’s actually kind of shocking looking at how much I could carry back then (and it wasn’t a difficult task for me either!).
Living in New York was so surreal. I always looked at the new world around me and would daydream about what it must be like to get to stay there forever. Valentine’s Day — my favorite holiday — was so much fun because I saw so much joy and happiness around me.
Some of the funniest moments happened in New York and I wish I had documented them better. Friends came to visit and we would go dancing on the weekend, our favorite place being “Turtle Bay,” a dive bar with an impromptu dance floor and crazy bartenders. I loved that I made new friends everywhere I went, and that they all seemed excited to see me too. I talked to anyone and everyone, and to this day I think New Yorkers get a really unfair bad rap.
I loved all the random people I met, but I also made some lifelong friends at my internship and in my apartment building. We still talk on a regular basis, and I feel so blessed to have those memories to share with such great people.
Fast-forward a few months after graduating in May and then leaving the city, this post was made two days before I got extremely ill overnight and began my journey with POTS. We were taking our last family vacation to the beach, and it was one of the final days there. I remember this night vividly, and the meteor shower is still one of the most beautiful things I’ve ever seen.
August 14, 2013 was the day I really started being terribly symptomatic. I’ve described that night in great detail before, but I don’t think I can put to words exactly how I felt. A few weeks later the doctors had an idea of what was going on, but it took several months to really get into a rhythm of realizing what my new life was like — and that it wasn’t just something I was going to get over quickly.
I’m someone who always minimizes things. I am not the best communicator sometimes because I hate inconveniencing others, and I don’t ever want anyone to pity me. When people feel bad for someone I feel like it makes them seem less of a human being, but I want people to understand. This is why I have always been very vocal about what’s going on in my life — even if I do make light of it all.
The tests I had to take since I got sick with POTS were awful because it took all week to recover afterward. I still have to prioritize things on my to-do list, and decide whether or not something is worth the energy and recovery time, but luckily I am able to do a lot more and a doctors appointment won’t keep me down for the rest of the week.
I’ve always loved writing, and blogging was a really nice way to get to express my frustration about the lack of knowledge people have about POTS — including doctors. I am so lucky to have a wonderful cardiologist who specializes in Dysautonmia close by, and have coping tools to enhance my quality of life. It’s amazing what a difference lifestyle changes make, but there is still so much for people to learn about this not-so-rare, but rarely diagnosed condition.
During the first couple years when my POTS was a lot worse, I consistently posted about my adventures on the recumbent bike, dogs, and television shows I enjoyed watching. Other than having friends come over, there was a time where I remember not being able to go anywhere I couldn’t elevate my feet. I went out to a movie night with a big group of my girl friends, and had to get driven home because I couldn’t sit upright without blacking out. I had to raise my feet above my head at the grocery store sometimes because standing upright to shop was often impossible for my autonomic nervous system to handle. Basically, it was really hard to even just get out of the house at one point.
Dogs were a huge part of world — and let’s be honest, they still are. Gracie and Macy were some of the most healing little creatures, and brought me joy every day, even when I felt my worst. I really do think dogs are little angels God sends to the world to bring us comfort, joy, and much more love than we even deserve.
I tried to make the most of everything I had to deal with. Some of the best advice I’ve been given is that even in my most trying times, I should write about my experiences. It gives me a more concrete reason of why something unpleasant might have happened, and more life experience. It also brings more of a purpose to this illness by helping spread awareness for other people suffering with Dysautonomia or invisible illnesses. My writing and ability to connect with others are the two things that keep me positive throughout all of this.
A lot of my writing about chronic illness is to educate people who maybe haven’t had to deal with anything like this before. It’s so weird looking like a completely normal, healthy twenty-something when your body isn’t working properly. I think there are a lot of people who mean well, but maybe just don’t understand that there is such a thing as invisible illness and you wouldn’t know someone was feeling terrible unless you talked to them.
It’s crazy thinking about all the time I’ve spent in the life of having a chronic illness. When I first got POTS I was terrified hearing that I would have it for the rest of my life. Then, I was optimistic that I would be better within 5 years because of some studies I had read about the condition. I reached the 5 year mark this August, and have felt frustrated at times that things still aren’t where I want them to be, but I am going to keep fighting to get a more normal life back, and I so appreciate how much I have improved since August 2013. It hasn’t been easy turning my everything upside down and learning to be positive though pain, but I have more faith that God has a plan for my life and will make something beautiful out of even unpleasant circumstances. After all, if I hadn’t gotten sick with POTS there is no way I would have met Robert, so I trust that God knows what He’s doing, even when it doesn’t always feel like it. I just might not know why everything is happening the way it is right now, but maybe one day I will.
Thanks for reading if you made it this far! I know this was a much longer and more informal blog post, but the old versus the new me is something that I think about often because it is just so freaking weird having this as my life. I still feel weird sometimes telling people I have a chronic illness, and it isn’t anything I ever imagined would happen to me — especially at such a young age. I just think it’s important to remind people that I have had a really normal life up until getting sick with POTS, and despite being different now, I still can relate to so much to normal people as well as the “new” community I’m a part of.
The more I’ve loved, been loved, and felt broken, the more I’ve learned about the five different love languages and how important they really are. I’ve always known I’m an in-between and don’t have a primary LL, but over the years I’ve noticed that I need at least a pinch of each to make my love tank feel full. The more love that comes in and warms my heart, the more love I feel like I have to give away.
I need words of affirmation to feel like I mean something to other people. Whether it’s telling me that the words on this site matter or that my company is a joy, words of affirmation are currently tied for the lead of what I need coming into my heart. They’re also headlining what I strive to give every day. I’ve always been a big fan of pen and paper, and I write notes for even the newest of friends. I don’t think there will ever be a time in my life where I don’t write to those I love, and if there is, please come find me to make sure I’m okay.
At our wedding, I decided to write each and every one of my girl friends a letter telling them how much they mean to me and how happy I was they could share that day with me. It took hours of work to finish the pile of notes you see at the top of this picture, but every single one of the girls who came to support us means the world to me, and I wanted to remind them that. I wrote most of my notes well ahead of time — before I even knew what color I wanted our bridesmaid dresses to be, what vendor we’d use for flowers, or what flavor we wanted our cake to be. As with several other things I had imagined, I didn’t actually have the time to put these around at all the tables the day of the wedding, so I’m still slowly handing out the notes, but this was one of the top things I was excited about while planning our wedding.
Physical touch has also been an important part of my life, and having a hand to hold or body to hug is really vital for my heart to feel cared for. It is tied as my most important love language right now. I don’t talk very much about my pain with even my closest friends and family, but I’ve felt like I’ve needed more hugs lately. Something about someone giving you a squeeze makes the world feel like it’s going to be alright, even when you feel like nobody could possibly understand how you feel. For just a moment I forget about anything that is hurting or bothering me and remember how much love I have in my life.
Gift giving used to be my top LL. Even as a kid I loved going to the store to buy presents for birthday parties, Christmas, and even small “just because” gifts with my allowance. I think I learned this language of love from my mom because she was so great at leaving little notes and stuffed animals on my pillow or under the covers for me to find when I crawled into bed at night. This practice carried on into college, which was where I reached far and wide to friends for birthdays and almost every single holiday in an attempt to make people around me feel special and cared for. I spent hours shopping for goody bags to make every Valentine’s Day because I wanted other people to love the holiday as much as I did, even if they were single like I often was. I bought chocolates, cards, nail polish, giant bags of pink and red confetti hearts, and topped the presents off with a mix CD made special for each friend. It’s funny to this day how many people tell me they remember my goofy little playlists. Gift giving is something I find really fun and I think most people feel pretty loved when they get a present that was chosen just for them. It isn’t about the thing, rather it’s the fact that someone spent the time and energy to think about you and do something about it that makes this LL special.
We have two more love languages left. Quality time, and acts of service.
Quality time will always be important to me, but I’ve learned just how necessary the beautiful, magical adjective “quality” is. Time, though a really valuable thing to give someone, is only special if it’s attentive and caring. Electronics make it worlds more difficult to get quality time, and a lot easier to give the excuse that you’ve filled this part of the tank in a friend, family member, or partner. I feel tired a lot and am guilty of plopping down on the couch, only to turn on a repeat episode of Friends or the newest Judge Judy case. Although that time can be spent bonding and laughing over the silliness that ensues, it only fills the “quality time tank” so much. The amount this fills for me lingers around the 15% line, because with a big black box in front of my face, there is only so much I am going to learn and connect with someone else.
Quality time is perhaps the most difficult of the love languages to manage because it does depend heavily on the activity and how present each person is with one another. To one — perhaps with physical touch as the highest of the love languages — snuggling up on the couch and catching a game might be something that really fills up their tank. To another person, however, with words of affirmation being important, talking has to be a larger part of the time spent together to actually be quality enough to fill the tank. Hallmark Christmas movies make me feel more connected to another person than anything else on television because I tend to talk through them and bond over how many errors the producers missed or storylines that don’t make sense.
Finally, acts of service. I tend to write about this love language last, because I understand it the least. This is arguably one of the most practical languages that I absolutely need, but it just doesn’t fill me up the way the other four do. It doesn’t give me a warm and fuzzy feeling or make my heart leap from my ribcage the way everything else seems to. I need this love language desperately, though, to keep my health maintained and feeling good. Mentally I notice all of the acts of service that are performed for me every day and I feel thankful for them, but they don’t offer the same powerful effect that a hug, love letter, or tasty dessert brought from my favorite bakery do. It registers to me that this is love, but it doesn’t fill my heart the way other languages do.
I encourage my friends and family to keep learning about their love languages, as well as their partner’s, family’s, and friends’. I talk about them so much on here because I truly believe knowing more about the five love languages is a fantastic base of any relationship, and they can drastically change how loved a person feels. It really is interesting how all of the languages work together and how much easier it is to love someone when you truly understand them. The most complicated thing about relationships is that none of us are the exact same, and we all need different things to make us feel content and secure at the end of the day. People are dynamic and what they need might change as they grow, so loving someone is a never-ending task. Love is the most worthwhile thing in the world, though, and means so much more when you’ve worked to make it more special.
Do you have any book suggestions for me to read? I’m always plugging The 5 Love Languages by Gary Chapman, so it would be great to hear what y’all enjoy too!
I just looked at my blog and the last time I posted was almost a month ago on November 13. The last time I posted something I really kind of cared about was in October. I used to write all the time and have a hard time figuring out which things were and weren’t share-worthy. I often decided to not really filter myself, and posted everything, which meant you had a few things to read every week.
Lately I’ve had a hard time feeling motivated to post. I have a bunch of things I’d like to write about, but I’m having a few issues. First, I have a problem with women not supporting other women. I will likely write a post about this one day, but I struggle with the fact that not everyone wants the best for others, and that there are people out there who would be absolutely fine hurting me in one way or another. Second, I always want to be 100% authentic and real with y’all. I have a difficult time doing this and also maintaining an amount of anonymity for those in my life who didn’t ask to be written about. I want you all to know that with the beautiful things in life there are still struggles, but I also don’t think the Internet is a productive place for each hurdle life throws at me. Lastly, I have realized that oversharing can help so many people, but it can also cause a lot of pain. I am trying to find a balance of sharing important life lessons and details with you all, but still protecting myself and my loved ones.
Luckily I have some old drafts I am going to work on until I want to start writing again. I really want more than anything to be the open book I love, but I’ve also grown wiser and more jaded with releasing my most inner thoughts to anyone in the world to read. I hope. I can get out of this funk and start writing from my heart again! In the meantime, if you’re still following this little blog, thank you. I hope to start offering more to you again soon.
It’s so funny how much web traffic I got on September 22 and 23. I guess a lot of you guys must have known our wedding date! If you’ve ever gotten married, though, you also know just how crazy the time leading up to the wedding is, and then the week or so after.
I am finally back and have lots and lots to write about! I’m excited to share some of my stories about wedding planning, offer advice on what I’ve learned through the experience, and most of all, share what it’s like being a newlywed! So far it’s been really great and so much fun, but it’s also been a lot busier than I expected. I can’t wait to share more with you all! In the meantime, here are a few pictures our photographer, Katie Nesbitt took.
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 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.
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.
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.
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.
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.
“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.
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.
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.
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 Broadsideoffice 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.
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 sobeneficial 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.
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.