It’s funny how the days go by slow, but the years just seem to fly. The last time I wrote here was before we even moved. Now we’ve been in our house for over a year.
I have writer’s block. Which bugs me, because I love to write. I have become more private as I have gotten older, and I don’t know what to write about. I love my job, but it offers very little creativity. I always wanted to be a journalist. Like, when I was in the second grade, my mom would buy me editing workbooks because I wanted to edit in my free time. I would finish my homework, only to go open a nice, fresh proofreading workbook to see if I could find all of the mistakes. I wrote mini newspapers and magazines and truly enjoyed doing my English homework. It was always my favorite class, right beside gym. I was always the kid who came in with the longest essay because I could not say enough. That is, until I learned that a good journalist can get their point across with brevity. Then my new challenge became writing a piece just long enough to give all the details I wanted to convey, but short enough that people would read it. The only part I have always hated about writing is coming up with a good title. I still never know what to name these freaking posts, which is part of the reason I have upwards of 200 drafts just sitting there.
I have things I am passionate about and would enjoy posting on here, so I’m going to start tonight. I want to continue to raise awareness about POTS. I have something written about this already. I forgot what hell it is to lose the ability to protect your body from taking you captive. We NEED to find a cure. Want to learn more about it? Check out Dysautonomia International for some statistics, but you would think that an illness that affects millions of people would have more funding. Many people with POTS don’t feel well, but can still function. About a quarter of cases are so debilitating that patients cannot work. Experts compare the quality of life to someone with congestive heart failure or kidney failure. Most of those affected are young women. I have a lot to say about this, so we’ll be circling back to it; I have been thankful to see POTS taking the news by storm the past year, but I want to keep raising awareness and trying to do my part. It is easy to step back and live my life without giving it a second thought since I have been feeling well. That isn’t right. I am lucky to be doing well, but isn’t that more of a reason to advocate for those who can’t? I have absolutely failed in this regard.
This isn’t my “Chronically POTSitive” blog, though. This is the blog that I enjoyed sharing my life on several years ago, and I want to talk about other things I think are important. I will always lead with empathy and know that I’ll make mistakes if I keep writing, but I think that’s a problem right now. People are afraid to talk because opinions are all so very different. We hear the loudest people and the most argumentative people, but many of us have been silenced. We are in an age that doesn’t always like things or people who are different, but I think that’s probably more of a reason it is important to speak up.
I want to talk about women’s self defense because I know more about the world we live in. I can confidently say that every woman reading this knows how it feels to be home alone and wonder what the bump in the night could be. We know what it is like walking to our car alone at night, and are cautious around men because frankly, most of them could overpower us. Now I know what it’s like to be able to defend myself and it is empowering.
While we’re on the subject of women, I’ll be talking about my relationship with my body. To the few men who read this — you can skip these posts. They’re not really for you, and I’m not sure how I feel about you taking a deep dive into what it’s like in this space of my mind. While we’re there, we can chat about what it’s like being in our thirties and all the pressure society puts on us. I cannot attest to the struggles men face (I can think of several, though), and this blog is all about my own feelings. I assure you that if you feel my posts are lacking in any way, another part of the internet will have the content you are looking for.
I’ll be talking more about love, life in my thirties, and what makes a house a home. There might be some true crime sprinkled in here and there, or romance novel-inspired writing. I know many of you started this journey with me to read funny dating stories, but if you’re reading this, you stayed to see my relationship with Robert blossom into a beautiful marriage. This will be very different than Single in the Suburbs, but hopefully we’ll figure out what I will write about together.
To be a good writer you absolutely need to be honest. Something I seem to have forgotten, though, is that to be a good writer, you need to actually write. We’ll see how everything goes this time around, but welcome back to my corner of the internet. I hope you’ll stick around to chat.
Hi! Who are the ten people who visit this site every day? I was really surprised to see my blog still gets views, despite being super inactive this year.
I’m sitting here with an everything bagel and glass of water, thinking about how fitting it is to have such an unappetizing pair for breakfast. I feel like, as a writer, I should embellish and talk about drinking something more beautiful like a hot cup of coffee — water just doesn’t sound as poetic as the power couple of coffee and a bagel. It’s very 2020 to just be real and not try to make things seem better than they are. This was a very real year, and I have appreciated all the honesty we’ve seen.
2020 has clearly been super weird, with lots of highs and lows. As someone who does have a chronic illness to monitor, I have been conservative with COVID stuff, following the CDC’s guidelines, and embracing *~social distancing~* for what it is. I’ve acquired new hobbies at home, and decided that since cooking and eating go hand in hand, I want to be the best darn cook possible. I even mastered risotto last week, which was a major pain in the butt the first time I tried it.
Let me catch you up to date on where I am now. This year has been busy, despite spending it at home. We sold our house recently, and are full force shopping for a new home. Our dog, Jax, recently had surgery to remove what we now know is a stage 2 low grade mast cell tumor. I seem to have sympathy pains for Jax, as my Eustachian tube is blocked (seriously, tell me how to unclog a blocked Eustachian tube because it is driving me up a wall!) and just won’t go away. Jax has my heart and I would do anything for that pup. I am moving forward now and just doing all the practical things that need to be done for a dog with an issue like this. It’s funny how I can handle my own health problems better than my dog’s, but anyone who has had a pet understands I’m sure.
I turned 30 this year, and despite always saying that I didn’t think 30 seemed old, it feels weird. I can’t write about how I’m a “twentysomething” anymore, and it does feel like a new stage in life. Part of that is probably the nature of laying low this year, though.
2020 was hard, but I am grateful for health of myself and loved ones. Life becomes a lot simpler when you know what it’s like to lose something as basic as your health. It makes it easier to be thankful for little things, and not sweat the small stuff. There is a light at the end of the tunnel, even if it’s still a little ways away, and one day we’re going to remember some of the fonder memories from this year. We’ll remember trying new things to entertain ourselves at home, lots of quality time with a select few loved ones, why it’s important to cherish every moment we have on earth, and finally, that 2020 was the year of figuring out the secret to the perfect banana bread.
I usually do a “word of the year,” along with some small resolutions, but this year I am going to skip doing anything, and continue to take each day as it comes at me. Happy new year, and let’s hope that despite Netflix taking The Office away from us, we can make the most of our circumstances this year. I’m going to go make some coffee now, because it’s all I’ve been able to think about after rambling about my glass of water earlier.
2019 really got away from me. New Year’s Eve feels like it was forever ago, but I kind of can’t believe it’s about to be a new decade.
This year has been crazy and filled with lots of new adjustments, but I haven’t felt like writing about much of it on here. My journals are filled, though, so one day maybe some stories will eventually make the cut. I have a very boring one today, so it’s unfortunate I don’t post on here more often, but I’ll do a very exciting (and kind of funny) Trader Joe’s post on Tuesday to make up for it.
I went to the dentist recently and he told me my teeth looked beautiful and were cavity-free. Great! We did see, though, that my teeth are shifting. Apparently that can happen over a decade after getting your braces off? Since I was about 14 when I got those suckers taken off, I didn’t really consider that at 29 years old I would be revisiting how to straighten teeth. Apparently this is a common problem for people my age since they weren’t doing a lot of the permanent retainers until a little more recently…? I digress.
I went home and jammed my retainers in, per the dentist’s recommendation, and they still kind of fit. The lower one is more comfortable, which is shocking because those are the teeth that look a liiiiitle more shifty. The truth is, I was always great at wearing my retainers until I got sick with POTS. Ask any of my college roommates — I had a lisp every night when I went to bed because I wanted to take great care of the expensive smile I had received as an all-too-unappreciated middle school graduation gift. POTS makes me very dehydrated, which made it very difficult to wear retainers that made my mouth feel even more dry. I stopped wearing them regularly, and I kept letting it slide for six long years.
The point of this post isn’t to bore everyone to death — though I’m really sorry if you’re already there. It’s to make the very important point that some New Year’s resolutions should be habits that you plan on forming and keeping as healthy lifestyle changes. This year I am going to create very realistic, doable resolutions that I want to carry through the next decade. I started with a vague, “I want to start doing yoga,” to making the resolution that I will work out 3 times a week, whatever that looks like. I’m already 1 workout down for this week from a Pilates class I took at home this evening.
Another resolution was going to be, “blog twice a week,” kind of like the 2019 resolution I broke. Instead, I am making myself write every single day, but in whatever form I’d like. Whether it’s writing even just a sentence or two in my journal or doing a long essay on here, I want to keep my creative juices flowing and keep recording my memories. I tend to write either when I’m really happy about something or upset in one way or another. I would like for my writing to reflect more of my everyday life, which is probably more of just boring old contentment.
I have a million other things I’d like to do this year, but I’m keeping my resolutions simple and realistic. I am still formulating my realistic goal for “eating better,” but I’m going to figure something practical out that will still make it easy to enjoy life while being a healthier version of myself. Maybe I’ll sub a few salads into my weekly meal routine or cut back on processed foods for special occasions only. I’ll figure it out.
The new year always feels like such a beautifully fresh slate, but I don’t want this year to be like my Planet Fitness membership and only get used at the beginning of the year when I’m excited about all the new promise it offers. I want to keep my goals, continue to find new adventures to go on, and create a healthy lifestyle, rather than have an enormous bucket list of things I’ll forget about come March. That way, instead of waking up one morning with shifty teeth, I’ll have settled into good habits that keep my body and mind sharp for the long run.
Happy New Year everyone, and I can’t wait to hear about all the other goals and ideas people have for the new decade!
I’m in so much freaking pain right now I don’t know if I want to throw up or cry. Preferably both would probably make me feel better. I don’t feel like this nearly as often as I used to, as my health is improving, but it still feels like it’s going to last forever. I can’t focus on anything else and just want the day to be over so I can have a clean start with refreshed muscles.
I always try to figure out why I’m in more pain than usual so it won’t happen again. Often, there isn’t a big cause — it’s just maybe the weather (I SWEAR I get bad headaches more often on rainy days) or the fact that I was standing too long in a day my POTS was acting up. There are other times, though, that I know I’ll feel bad the next day. Taking an airplane or sitting down for long periods of time, being much more active than usual, or staying out late are all things that can cause pain. Writing causes pain for me. I wrote a lot today. I didn’t focus on my ergonomics the way I should have. That might be a big reason I’m at an 8 and want to cry now.*
Some people might take this as a sign from God that writing may not be their thing. After all, my hands become stiff and my pain creeps up my arms and shoulders the longer I’m writing at a computer, so the writing does quite literally hurt me. It isn’t comfortable the way it used to be, and you’d think if it was my calling I wouldn’t have to take breaks to pace myself so much. Writers can sit down at a computer and churn out words for hours on end without taking so much as a bathroom break. This thought has crept into my mind before. Why can’t I do what I love and what my heart desires most as a full-time job? Why did my trajectory change so drastically? Is it because it isn’t my destiny to be a writer and I should look for something else to dig in deeply?
I am reading a book right now that talks a little about “signs” and Christianity. It talks about how sometimes things that happen are not as monumental as we want them to be — they’re just little blips in the grand scheme of things. Not everything in the world is a sign from God, even though He is always here with us. My pain that is linked to writing is not a sign from God that I need to stop. I know I am supposed to be here in this little space of the Internet, and it isn’t some big selfish desire my heart has. It’s just a deep-rooted yearning I have to connect with others, share my stories, and help each of us feel less alone in the world. The chronic pain I’ve dealt with might just be yet another way to connect with people, but it isn’t a sign that I need to stop writing. Sometimes people wait too much to try to listen to what God wants them to do, rather than just strapping on their boots and trying. I think we sometimes underestimate God and don’t realize that if we’re going in the totally wrong direction, He can find ways to pull us back on track. The most important thing is to get up, and go for what we think can change the world. If we’re wrong — which people often are — we can keep trying until we get things right. After all, that’s an enormous part of what it is to be human, right? Learning from our experiences and making ourselves better from them.
Hopefully tomorrow I’ll be feeling all better. Like I said, I was a little alarmed to feel this bad because I’ve had so many good days lately. I am grateful for that, and I hope to continue getting better and better.
*Those of you in the chronic illness community know we often rate our pain on a scale from 1-10, 1 being pain-free, to 10 being unbearable. It gives doctors a better way of seeing improvement and knowing how bad — or not — it really is.
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.
Today happens to be a very POTSie day. Luckily, dizzy spells are much fewer and further between, but I hate when they decide to come around with a vengeance. I have been doing a new exercise protocol lately that is supposed to make me feel worse before I feel better, but I am optimistic about how much it could help me in the long run.*
Anyway, I am currently working on a post about what my POTS timeline has looked like, and the improvements I’ve made, as well as the things that are still different in my life post getting sick. It’s been so interesting for me to look back at different things I wrote throughout the years, but is great to have something tangible to look at regarding my life.
Certain things are becoming more normal, and I am pulling off looking like a normal human being like a pro. I have looked pretty normal since getting sick with POTS, since it’s an invisible illness, but I used to have to ask for help much more often. Now I think people around me often forget completely that anything is wrong with me! I hope one day this will be true. Despite being sick for over five years now, I will never stop hoping to get back to complete normalcy. I have a million different things I’m working on for the blog, so today I wanted to just touch on a few things that have been different for me the past half-decade.
1. I can’t enjoy taking showers. Sometimes I hop in a hot shower just because I am in pain and want something to release the tension in my muscles, but for the most part they’re just exhausting. I usually choose between washing my hair or shaving if I’m going to stand the whole time, and have to alternate between the two or rest quite a bit longer after I’m done. Does anyone actually find showers enjoyable? I can’t remember anymore; now they’re just exhausting.
2. I’m not very extroverted anymore. Before I got POTS, I was super extroverted. I was always around people and had an enormous circle of friends. Mentally, I still want to be doing a million things, but my body isn’t up to that. I feel tired and drained from doing too much, so I don’t go out nearly as much as I used to. When I do, it’s usually dinner or dessert with just one or a few friends, rather than hanging out in a giant group. When I first got sick I really couldn’t do anything other than try to stay optimistic, rest, and work as hard as possible to take care of my body so I could hopefully get better one day. I think some of my friends who weren’t around might have felt like I was neglecting our friendship, but in reality I just couldn’t function. I have lost touch with people I sometimes still miss. Getting sick really does show you who is going to be around for the long haul, and makes you see who has unconditional love for your friendship.
3. I miss writing for hours on end. My favorite thing in the world has always been writing, even back in elementary school or high school when writing wasn’t supposed to be fun. I always said English was my favorite subject, even when other kids would say “lunch,” “recess,” or “gym.” I loved learning more about our language and how to write things that people would enjoy reading. It’s difficult for me to sit at a computer and type for hours without feeling it after, and then being in a lot of pain for days after. I am very slowly working on endurance, and hope to be writing more and more.
4. I miss being a helper. Before I got POTS I was independent and strong. I loved helping other people in any way I could, and was always there to do acts of service. There is nothing I hate more than having to swallow my pride and ask others for help. I’ve had to do that a lot the past few years, and it honestly doesn’t get much easier. I hate inconveniencing others, and I have a really hard time telling people I need something. I am still working on communicating better, but in the meantime I use my writing as an outlet.
5. I wish I could have my old dreams back. I dreamt of living in New York City as a magazine editor, and thought about how many lives I would change through my writing. I wanted to be able to support myself, pay my parents back for school, and afford my own life. I wanted to keep pushing myself and training for another half marathon, and I wanted to collect a million new skills from the new people I’d meet.
I have set new and more realistic goals, and am focusing on getting my body in shape so I can reach higher. Despite my life being much more complicated now, it’s also somehow become more simple. I realize how much I value the people who are in my life, and how important they are compared to everything else in the world. I’ve learned to appreciate the many blessings I do have, and how to live in the moment better. I still feel like I’m looking to find my purpose in the world, but I also trust God now more than ever to have better plans for me than I ever did for myself. I’m just trying to figure out what that is now.
*For any POTSies who are curious, I am doing the Levine protocol.
Love is difficult enough on its own, but when you add our little black screens to the mix, things become just that much more complicated. First, let’s talk casually dating. There are a million different apps and websites you can use to meet people. Making a choice — or three — of what you want to use can dictate the kind of people you will meet. There is a dating app for everyone, whether you are looking for a farmer, a fellow vegetarian, or someone who loves Disney just as much as you do. This is great because it takes searching high and low out of the equation and sets you up with a partner who has at least some of the same interests that you do. Even using the more standard dating websites makes finding a partner a little easier because there are usually questions to answer that calculate what percent of a match you are with someone, which saves the smalltalk and goes straight for some of the biggest deal breakers like religion, smoking, or even what kind of family someone wants.
The dating culture now is different than it ever has been before because we have endless options. It is so easy to go out with a person, see a flaw you don’t like, and think, “Well, on to the next one!” when you have access to thousands of profiles online. Odds are there’s someone who fits the bill of exactly what you want, right? The problem with this rationale is that there is no such thing as a perfect person. We live in a time where if something is broken, we don’t fix it — we just get rid of it and upgrade. It isn’t worth the effort of learning how to jump over a hurdle or adapt to a new way of using something; it is far easier to just throw away a broken object than it is to put the time and effort into making ours work again. The same goes in the dating world. Far too often, as soon as someone learns about an issue, they decide to move on to find a different person without said problem. This turns into a vicious cycle in embarking on the search for perfection which, in this world, does not exist.
Now let’s touch on solid relationships. The little black box certainly doesn’t make finding a partner easy, but once you’ve gotten one they work their little plastic butts off to make everything a little more complicated, despite their initial intention of making life easier for us. Instead of reaching to hold their partners in the morning, people reach for their phones. Rather than sitting together at the dinner table they sit on the couch in front of a television. Hours upon hours each week are spent on Facebook and scrolling mindlessly through Instagram. This whole new age of technology has greatly changed the course of our lives — for better and for worse.
At the end of the day, despite what it sometimes seems, we own technology — it does not own us. We can make our own decisions on how to use it to better our lives and enrich our relationships instead of harming them. I like using my little silver laptop to type words onto a screen and share them on here with you all. I like playing Super Smash Bros and Fortnite with my husband, and I like that I can shop no matter how I’m feeling and that there are people who will drive to my house with a piping hot pizza if I use my phone to order one. Technology is great as long as you know when to use it and how to continue to connect with your loved ones in person. This is why I harp so much on the importance of quality time spent with loved ones, rather than just time. It can be so easy to think you are pouring into others when you spend so much time with them, but if that time isn’t spent wisely it won’t really make an impact on their heart.
I still haven’t finished making my resolutions for the year, but one of them is that I am going to be more cognizant of how often I am using my phone and to put it away more when I am with my loved ones. I am going to invest more time in journaling and having heart-to-heart conversations, and be more productive about reaching my goals for this year. What are your resolutions for 2019?
I rarely go out for NYE anymore, but it’s still one of my favorite holidays. I love words and symbolism, so the idea of having a clean slate is such a beautiful thing filled with possibilities. This is my favorite idiom on January 1st, and I take resolutions pretty seriously.
The past few years I’ve been choosing a “word of the year” that I try to keep as the foundation of the decisions I make. 2016 was “perseverance.” It was the year of the deployment and involved a whole lot of patience, sleepless nights, and pushing through the really hard parts. Something I remember so well about this year was running away from my thoughts at the gym. I often rode the recumbent bike and pushed harder and harder to try to escape from the difficult parts of life. As I’ve grown up I’ve found my coping mechanisms for hardship involve either working out, or doing my hair and makeup for no reason other than to feel like I have control over something when I can’t do anything about certain things life throws my way. I have a hard time dealing when people do things that hurt me, and I begin to feel claustrophobic when I know there’s nothing I can do about the way others behave or the fact that my health is declining despite working hard to feel good. Finding things I can control when it feels like things are spiraling has been so helpful to my heart.
I skipped 2017 because I felt too busy and excited for Robert’s homecoming. I wrote all about trying to get Tom Brady to come greet him at the airport, then about what our reunion was actually like. It happened to be perfect, even without the greatest quarterback there with us. We started a normal life together this year, and I focused on being in the present a lot. This past year was supposed to be “Fearless,” but as I’ve said a few times before I failed miserably at this word for 2018. I didn’t leave my comfort zone enough, and I gave up on a lot of my writing because I felt scared of sharing my intimate thoughts with the Internet. One of the reasons Single in The Suburbsreally took off in the beginning was because I was able to candidly talk about my life without much of a filter or fear of being judged. I loved being open about the dating world with everyone because I realized that my dating life was just as uncomfortable, frustrating, and fun as every other twenty-somethings. I embraced the awkwardness, shared my weirdest stories, and ultimately tried to help other people realize they weren’t alone in anything. We all were having a hard time trying to find love and meeting someone who really understood our heart.
My problem now is that I don’t always feel as relatable anymore. I feel like nobody understands the pain that I have (Even though I know they do, and so many have been through so much more), I am more guarded and protective of my relationships, and I am afraid of the shadows of strangers that lurk on the Internet. Instead of feeling like I have a nice space where I can share without being judged, I feel like there are so many people who are cruel to others for having a different opinion, and “different” is a word that seems to define me. I can’t always relate to normal twenty-something’s lives, but I rarely find myself feeling insecure about being different. I was raised to love and be kind to everyone — whether or not they are similar to me — and I don’t understand the culture that accepts being cruel as a way to show disagreement. The Internet is plagued with trolls and people who get a kick out of tearing others down, which makes sharing any sort of opinion frightening.
This year I asked my Instagram friends to help me choose a word. We were either going to focus on “Joy,” or try “Fearless” one last time. The vote fluctuated from leaning heavily on “fearless,” to giving “joy” the lead later in the day. They switched back and forth a few times, and I liked that people seemed interested in both words, but ultimately I landed on FEARLESS for my word of 2019. I chose it for a few different reasons. First, I think it’s more difficult for me. Joy is something that comes more naturally with my personality, and although it’s been more of a struggle through times of hardship, I am always going to try to be joyful — regardless of the circumstances in life I cannot control. It doesn’t matter whether it’s 2019 or a decade later, I don’t see that changing about me. I like a challenge and being fearless this year certainly is going to be just that. I don’t want to lose the part of my heart that makes me kind, but I need to get my edge back that makes me more resilient to other humans.
Finally, I got some words of wisdom from a friend that if I live fearlessly, joy will come along with that. This was exactly what I needed to hear to pull the trigger and choose 2019 as the year of living fearlessly. I want this to impact several parts of my life. I am going to start writing on here more about things that matter to me — even in the areas where I feel like I’m different than the majority. I am going to face my fear of rejection in more than one area of my life, and I am going to pace myself for the dreams I want to chase. Finally, I’m going to teach myself that I am more valuable than what my body can and can’t do. One of my biggest fears since getting sick with POTS has been whether or not I could still be a valuable part of the world, even when I feel like I’m at my worst. Exploring what makes me special is a surprisingly scary thing because what I used to really value and love about myself was different before I got sick. I had very different goals and things I wanted to do in my life, but my trajectory drastically changed five summers ago. This is going to be a year where I take care of myself and learn how to be brave, even when it’s hard. 2019, get ready to be fearless.
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’m kind of terrified to write about anything that could be remotely considered an opinion these days. The Internet is an amazing, but scary place. You can find information on any given topic and no matter how rare you feel like something about you is, 99% of the time you see person after person who has that in common with you. The computer is a fantastic place to connect people with one another, to rally around each other for causes or through hardships, and feel less alone in this big world. It’s a great way to gain knowledge and learn how to be more empathetic, and can be an incredible tool to help others.
I think most people are good and mean well. We all want to make the world a better place, we just sometimes have different ways of getting there. The biggest thing I see people fight about online is politics, but I’ve seen vicious arguments about something as trivial as whether Chips Ahoy or Oreo cookies are better. I see Republicans and Democrats fighting right and left (No pun intended), name-calling and bashing each other for having different solutions on getting to a similar end goal. Each and every one of them thinks their plan is the best way to bring peace on Earth and end great amounts of suffering in the world — they just disagree on the practical steps it takes to get there. Instead of realizing that they are, in fact, on the same team, people yell at each other and resort to name-calling. Rather than wondering why someone might feel there is a different solution, people remain stubborn and set in their ways, and neglect to open their mind to other ideas. It’s really dangerous when we stop critical thinking and forget how to communicate effectively with others.
Politics is the easiest example to give, but I clearly am not going to be starting a blog talking about current political events, so why should I feel worried about being attacked on here?
I am afraid to write about my opinions because people on the Internet can be so darn mean about nothing. I see celebrities bullied on a daily basis just for sharing their lives with their fans, and I see well-intentioned posts by girls in Facebook groups get attacked because someone was offended by the way something was worded. Everyone wants to be a social justice warrior so damn badly that they forget the people they are tearing down are human beings with hearts and feelings too. It’s so ironic. In my mind, these people just have one type of person they feel compassion and empathy toward — those who think the exact same way that they do.
“Love is the only force capable of transforming an enemy into a friend.”
Another great one is,
“Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that.”
If you want to talk about tolerance and love, the first step is to be tolerant and loving. This means loving even those who are wrong.
MLK Jr is someone who truly understands what it’s like to be treated poorly, but chooses kindness anyway. He was a pioneer who changed life drastically for people who were not being treated well. He isn’t known for being offensive, rude, or condescending — rather, he is known for being kind and compassionate, even when he had every right not to be. He was the King of peaceful protests, and fought seamlessly for what was right while remaining calm and respectful. I think we could learn a lot from the way he handled conflict and injustice.
The truth of it is, we live in one of the most unforgiving times ever. A tweet from an angsty teenage version of someone ten years ago can completely destroy a career, a “like” on Instagram can lead to death threats, and voicing your opinion can be one of the scariest and bravest things you possibly do, especially if it is unpopular.
If the world keeps moving this way I think we’re going to miss out on so many creative minds. A world like this doesn’t promote creative thinking, rather it screams that you need to fit into a certain mold to be accepted and loved. I believe bullying is one of the worst things human beings are capable of doing, and I think there are so many online bullies who have absolutely no idea that they’re actually the ones who are being cruel. I’d love to see people ask more questions and find out why someone perceives the world differently than they do. Instead of trying to cram ideas down someone’s throat, find out why they believe what they do and have a civil conversation about it. Agreeing to disagree is what makes America such a great nation, and I hate seeing this notion getting flushed down the toilet with the age of the Internet. Great things will start happening when we learn to work with each other, rather than choosing to focus on and fight about our differences.