Strange Things I Miss

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.

typewriter.png

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.

New Beginnings

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 Suburbs really 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. 

Krista_Reception_Pt2_214.JPG
Photo Credit: Katie Nesbitt Photography

Insurance Is A Freaking Pain

My pain has been really bad lately. I can tell I’m really not feeling well when my nails look like crap — I love having painted fingers and toes, and always do them myself — and I begin forgetting things. Yesterday I had to turn around and drive home because I could’t remember if I shut the door — not locked it, but shut it — I fed Jax a second breakfast, and I can’t remember the third thing I forgot… It will come to me by the time I finish this.

I have decided that our next election I am going to really, really pay attention to healthcare and making it a top priority in how I vote. I’ve changed around insurance plans and being without physical therapy for the rest of the year sucks. The thing that frustrates the hell out of me is that I am in pain and trying to fix the problem by doing something that is good for me. I haven’t gone on medication to manage my POTS (Though I do think some people can absolutely not do without it and need to do anything that helps them have any semblance of a normal life), and I work hard to try to be as pain-free as possible. There are a few things that frustrate me. First, insurance doesn’t cover as much PT as I need in a year. I really have to figure it all out way in advance and go without it for periods of time to make ends meet. At some point my pain is going to go from a managed 3-5 with physical therapy to an 8-9 range without it*. Working out and getting hands-on work done is a key part of having me feel better than I do now. I never feel normal, but my pain is at least being managed. Second, PT is harder to get than medication and that makes absolutely no freaking sense to me. If there is a way to actually manage things without taking six different prescriptions I want to do it. Part of the complication of having a chronic illness is looking at your own symptoms versus what side effects medications will have on you, then picking the lesser of the two evils. You also have to weigh the pros and cons of being on something long-term. It makes absolutely no sense to me why doctors are able to prescribe something that I have to consume that will only temporarily put a bandaid over the problem, rather than trying to chip away at all the issues I have with the natural way of physical therapy. I am very dependent on going in for my visits, as I get terribly stiff and have a lot of pain when I miss more than a session, but I feel like I am making progress in a few small ways at a time. When I can’t go I start deteriorating and taking several steps backwards, even with the programs I do on my bedroom floor and at the gym down the street. I hate being dependent on anything, but having a chronic illness has really been humbling.

I feel like I have more freedom when I am feeling better because I do. I can do more when I feel better, and even at my very best I’m not at a normal 28-year-old level. When I talk to all of my grandparents on the phone, I feel like we relate more than friends my own age when it comes to how we feel. We are all in pain in one way or another, and can’t do as much as we used to be able to. I am scared of getting older and having the normal wear and tear of aging, but maybe they’ll have a cure for POTS by then. I don’t think about that often because it doesn’t do me any good to worry about the future, and I continue to focus on making myself get stronger and managing my symptoms on a day-to-day basis. I figure I’ll just worry about problems as they come to me and try my best to be healthy and prevent anything from deteriorating further.

pain.png

Finally, I am frustrated because by asking to go to physical therapy I am not asking to do something excitingly fun. Sure my PT’s are all so incredibly nice and fun people I would totally be friends with outside the clinic (Shoutout to, Melissa, Hilary, and Jackie for being the absolute best!), but it’s work and it often hurts a lot when I have to get poked at while I am in pain. The benefits are feeling astronomically better, though, while I am going on a regular basis. So, my third and final annoyance is the fact that I can’t go to get help to have a shot at having even remotely close to a normal life. My quality of life when I am in pain is not goodI constantly feel like I need to throw up from the pain, but don’t. My usual level with treatment is a consistent “I just went on a long run” kind of pain, with a few sharp and gnawing pains here and there, but what I’ve been having lately is several times worse than that and blaring a lot louder. I often find myself having a hard time focusing on what people say to me because I can’t seem to get past thinking about the coat hanger pain that consumes me. I can never drive for more than about fifteen minutes at a time without feeling some sort of pain, but now driving makes me want to cry because of how much it hurts to be behind the wheel. I’m back to having a hard time figuring out how to be productive and what I can do every day because everything hurts.

pots.png

I still don’t remember what I forgot before, but maybe once I can get taken care of my brain can start focusing on normal little tasks instead of honing in on how much it hurts to do anything. Speaking of which, I can’t sit at this computer any longer or my shoulders won’t feel okay in time for Christmas. I’m going to go spend some quality time with my foam roller and hopefully be able to get some sleep tonight!


*I think this was obvious, but for anyone who doesn’t know, pain is often measured in a scale from 1-10 in the medical world because it’s a little easier to articulate how you are feeling that way.

You Up?

My arms are killing me right now. I am beyond exhausted, but I can’t seem to fall asleep. This can be a common problem for people with all sorts of chronic illnesses, or even just regular people with stress. My problem is that I am sometimes worn out from just living day to day life.

I don’t complain to people very much in person because complaining isn’t really my thing. I love being positive, and honestly feel like I am a lot happier when I can look at the bright side of things in life. Sometimes you just fake it till you make it, right? This can be a double-edged sword, though. It’s wonderful because I can keep my relationships light, and add more joy to both my own life and the lives of my loved ones. It’s hard, though, because I feel like the less I talk about my symptoms, the more they are just forgotten.

You can’t see when I’m dizzy or nauseous or in pain. I have said it a million times, and I’m sure I’ll keep chatting about it on here — you cannot see signs of invisible illness. If you look closely, you’ll notice the bags under my eyes have become darker and deeper the past several weeks. I look in the mirror when I take my makeup off and can tell there’s been more wear lately. You can’t see the way my arms feel ropey and knotted, or the fact that my thoracic spine is as stiff as a board, though. I went to a Nationals game a few weeks ago and thought I might faint a few times. I stood and talked candidly about my wedding plans and how I don’t know very much about baseball, but I felt the stadium spinning circles around me as I spoke. It felt like I had left my body and was being twirled around and around on an amusement park ride.

Screen Shot 2018-08-08 at 11.38.10 PM.png

When my POTS acts up it starts by slowly tightening everything in my chest and heating up my face, then moves to what feels like my body overheating and getting ready to shut down. In the same way that Robert’s gaming computer’s fans started whirring frantically when it was overheating, my body goes into panic mode to try to keep myself conscious by either getting into a horizontal position or rushing blood back up to my brain in any way it can. Sometimes that involves fainting to facilitate the blood flow, but luckily I have learned the signs of when I need to sit down.

Emotionally, I can feel drained with all of this. The more I write the more I expect people to understand. The less I feel understood, the more I want to scream. “I know I am the exact same person in your mind because I look normal, but how the heck would you feel if you woke up tomorrow and had to give up your job, your independence, your financial stability, and your working body?!” What frustrates me the most is how hard it is to wrap your mind around what life must be like as a young person who is sick. It kills me that I can’t go out with friends and family on long hikes, and that I don’t have the option to turn down camping just because it’s too hot out and I don’t feel like getting sweaty. I miss running, I miss going out dancing until the wee hours of the morning, and I miss competing. I absolutely hate not being able to compete in any kind of sport anymore, which is why I have opted for being a cutthroat board game player instead. It often doesn’t feel fair that other twenty-somethings take their bodies for granted or understand just how lucky they are to go to work every day and walk around pain-free.

I will keep writing because I want so badly for you to understand. I want you to love your own body fiercely for the things it can do, and I want you to realize that just because I am not playing volleyball or tagging along on your wilderness hikes doesn’t mean I don’t want to — it just means I either physically can’t, or it’s not worth how many days I know I will pay for the fun after the fact. I remember when I graduated from college and a friend began having severe chronic pain. I felt terrible for her, but I also didn’t get that her life would be changed forever with her new fibromyalgia diagnosis. It’s easy to move on with your day and forget about how other people are feeling when you don’t understand their journey, but it becomes a whole new ballgame when you meet someone who is struggling with something that you have already been through. Next week I am going to talk some about empathy versus sympathy. I have learned how to be empathetic to others the hard way, but I also think it is one of the most beautiful characteristics I own now. You don’t always have to walk a mile in someone else’s shoes for your heart to really understand what they are going through.

Counting Spoons And Stars

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


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

Screen Shot 2018-07-05 at 10.14.58 AM

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.

stars.png


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.

Still In The Suburbs

I have a lot of new followers in this space, so I wanted to take a minute to re-introduce myself to anyone who is new to my blog, and share a few of my favorite posts for “Flashback Friday.”

First, this used to be called Single in The Suburbsbut now that I am engaged I finally changed the URL to reflect just me. This blog will always have some sort of dating and relationship aspect to it — because let’s face it, dating and love are my favorite things in the world to write about– but instead of sharing silly dating stories I’ll be chatting about a wider range of topics, with the occasional flashback or two.

My favorite things in the world are dogs, chocolate, the beach, my friends and family, and New York City. I like wearing soft T-shirts and sweats, but can’t help but love diamonds now, too. Current obsessions are The King of Queens, Fortnite, and Chipotle queso, but a few months ago I would have said Stranger ThingsMario Kart, and GF pizza, so things definitely change around a little. The Office is a constant in my life, as are chocolate waffle dates with my best friend. I love playing sports more than anything, but since I can’t be that active without passing out now, I enjoy watching other people have fun playing sports on TV. Robert is from Massachusetts, so I officially root for the New England Patriots, Red Sox, and Bruins, but I think my fantasy basketball team made me confused as to who I want to root for. I still am not obsessed with watching sports, though, and can really only handle a lot if I am fed good dessert and given the chance to talk a lot.

Screen Shot 2018-06-01 at 11.33.39 AM.png
Coffee is also one of my favorite things in life, but I can’t have caffeine so I only drink a small amount of decaf.

Now, on to my favorite blog posts. 

Robert and I met six months before he was deployed for ten. This is the most vivid moment I remember from the deployment. To this day I can tell you exactly how my heart felt while he was gone, and how excited I was when he came back. This is one of my favorite posts I wrote about him after we had been dating a little while. Pieces like this still give me butterflies, and I feel so blessed to have written so much about the guy I have decided to spend forever with.

I am an ENFP on the Myers Briggs test, which means I love feelings, and I love writing about them. I think people who are creative sometimes don’t get enough credit for doing meaningful work, too, but if we didn’t have right-brained people, we wouldn’t have great television shows like Seinfeld and Friends! 

This is the most descriptive thing I’ve written about pain. It was real, raw, and this is a day I will never forget. I don’t have as many terrible pain days anymore, and luckily when one does come my way I’m not as claustrophobic, because I know that my body can feel better again.

Lastly, I want to continue writing for my single readers, and this is my favorite piece of advice for dealing with a breakup. I don’t believe it’s typically healthy to stay friends with an ex, and I do think it’s important to move on so you can find the right person. An ex isn’t your #1 anymore for a reason, and until you find that person focus on your friends and family who all love you very much.


That’s all I have for y’all today, and I have a lot of catching up to do on here. Hopefully this gave you some sort of new material to read, and I hope you all have a wonderful Friday!

Choosing A Season Of Joy

I’m baaaaack! A lot has gone on in the week and a half I took off, but I’m ready to write again and update you all on some new developments.

It’s been crazy rainy lately and my POTS symptoms seem to get aggravated during changes in weather. Something interesting about POTS is that it affects a bunch of important organs, and has trouble finding homeostasis when even minor changes are introduced. My physical therapist takes my blood pressure and heart rate every single session — before and after and sometimes during my workouts — and it’s crazy to see that whenever I feel symptomatic my blood pressure is super low, and my heart rate is higher than usual. One cool thing about people with chronic illnesses is that we really know our bodies well. I can almost always pinpoint what is physically wrong with me because of the way my symptoms are behaving. We are going to start looking at the barometric pressure and my blood pressure throughout the day, just as a little test to see how they compare since both of us have noticed this trend. I can’t wait until POTS has been studied better and we can just look up a million and one facts about it, and one day there can actually be a cure.

Which leads me to my next point. I have been trying to be really cognizant of the blessings I have in my life lately. It makes every obstacle a whole lot easier to tackle, and I have felt more peace and joy by looking at the great things God has given me, rather than focusing only on the pain or discomfort. Today, for example, I saw a sweet little bunny outside on our front lawn. He was eating part of our flowers, but I sat and watched him until he was ready to leave before I walked past him. While I was sitting on the porch I saw a little red robin fly into a puddle next to our yard, and he started to fluff his feathers and bathe himself. These two little moments made my heart so warm the rest of the night.

As far as wedding planning goes, we keep making slow and steady progress. Robert and I got our wedding bands this week and they’re absolutely perfect. I keep putting mine on every time I go to his house because I love it so much! I am super sentimental, so I love that he picked everything out for me, but it’s also just so me. I love his too, and I think he looks super handsome with a wedding band. I wrote a little message to him in it so he’ll always be reminded of how I feel when he looks at it. 🙂 Despite all the stress of planning, I keep realizing how fast this time is going by and reminding myself that the primary feeling of this time of engagement should be joy. We have four months to go as of today, and I am so, so excited.

Screen Shot 2018-05-22 at 10.24.21 PM.png

All That Glitters

I haven’t done a ton of updates on wedding planning, mainly because I’ve just been so busy actually doing it. You know how fun and amazing the movies make everything seem? Parts of planning one of the most special days is just like that. Sharing the experience of finding the perfect dress with my mom and best friend was magical. I didn’t cry when I first found my dress — until I stepped onto the pedestal in front of the mirror and my mom started to. It was the only one that made both of us tear up, and that was the moment I knew I had found my dress. Going back to get the final seals of approval and choosing a few accessories was just as much fun. I’ve loved going to wedding expos, touring venues, and being silly and saying, “I wonder what has happened to my fiancée? Oh, I have lost my fiancée!” while I still can. I’ve loved looking at bridesmaid dresses, figuring out what colors will go with my shade of white (Who else knew there are like, ten different words for “White” when planning a wedding?), and daydreaming about what Robert will look like in a tux.

The hardest part of wedding planning isn’t the actual idea of planning, though. I love researching and chatting with people, I love thinking about little details, and I love getting to hear how passionate the vendors are about their craft. The hardest part about wedding planning is all the freaking chronic pain that’s been getting in the way. I hate to complain, but I do want to keep everything as real as I can for all of you as I go through the ups and downs of life. This is, after all, a lifestyle blog. I have so many things to check off of my list every day and mentally I can fly through them, but when I sit down to send emails and scroll through pages of ideas on my Pinterest boards and wedding message threads, my arms fatigue a lot faster than anything else. Ever since I’ve gotten in gear my arms have been bad again. I have knots and tender trigger points, and I have had the burning sensations I haven’t experienced in over a year now. I don’t know if the crunchy stuff in my elbows is still leftover scar tissue or something else, but my lacrosse ball doesn’t ever fully relieve the pain anymore.

I’ve had to take a step back and ask for more help. My mom has been incredible throughout this entire thing, and she’s gotten several of the big things checked off our list. I’m kind of in awe at how wonderfully she puts things together and has researched to figure out what vendors we can use to make our day a little easier and more carefree when it gets here. My mom is a cross between an angel and a superhero; I’ve always known this, but getting sick with a chronic illness at 22 confirmed it for me. She’s taken care of me throughout the entire time of being sick, and always puts my needs above her own. I couldn’t imagine doing any of this without her, and am so thankful that she’s doing this alongside me. If it weren’t for her, I know we couldn’t have pulled off a fall wedding.

I think the frustrating part of planning is that I so badly want to be able to craft and write down every single thing I do and learn. I want to blog about it all, I want to have a really snazzy wedding website to share all the details with all of you, and more than anything I want to be able to create so many special moments for everyone who is coming to our wedding. I wrote a little draft about my dream wedding when we first got engaged, and the most important thing is that I want everyone there to feel really special and joyful too. This is all such a Krista-y thing, and I want every moment that day to be filled with a new surprise and something that will make everyone really happy. There are about seven million things I want to do, but I have to be choosy because of my energy level and pain. Surprises and events take a whole lot of planning to just get the basics done, and I never would have anticipated so much work is put into one day!

Screen Shot 2018-04-13 at 10.13.41 AM.png

So, now that I’ve shared the hard part about wedding planning, I’ll be excited to share all the things that have brought me so much joy. At the end of the day, this date is so much more than just a wedding. It’s the start of the rest of my life with Robert, and it’s just a really great way to celebrate with people we love and care about. I already know that there will be hiccups, I will be nervous to be the center of attention for a short bit, and that not everything will go according to plan. I know everyone says that a wedding is something a girl dreams about her whole life, but my dreams go so far beyond this beautiful fall day. Once September has come and gone, I know the real adventure has just begun. 

Full

First, I would like to start this blog post by saying “Hoppy Easter.” Macy is sitting in my lap right now and wanted me to include a cute animal pun.

macy.png

The change in weather in the DC area has been crazy lately. This is a huge annoyance because it’s made me more symptomatic. Fall has become my favorite season since the temperatures are typically pretty mild, and there doesn’t seem to be as much rain as there is in the springtime.

This summer will be my 5 year anniversary with POTS. Did you know that a 50 year anniversary is called a “golden anniversary?” I guess you’re typically supposed to get your significant other something made out of gold. My brain is a funny thing and works really quickly jumping from one subject to the next, so I somehow got to thinking about that and wondering if a 5 year anniversary had a name. After a quick meeting with Google, I found that silverware is the token gift for 5 years. I couldn’t help but grin since I often feel like I don’t have enough spoons throughout the week. This is a kind of cruel irony.

One of the hardest things about having a chronic illness is just the simple fact that life is more drastically unpredictable than the average human’s. You often hear someone with a chronic condition say that they are having a “good day” or a “bad day,” but either way it will pass and there will be another kind lined up and ready to take its place. POTS has taught me to really enjoy moments, especially when I get to do something out of the ordinary that might cause a lot of joy — and bring with it a lot of pain the next day.

I write about pain a lot more than I ever talk about it because I do want to enjoy my life and have the little moments that make life so beautiful. Regardless of feeling crappy right now, I want to remember that four years ago my life was being lived horizontally. I do feel really blessed that I can walk, sit upright, and enjoy so many amazing things that I do take for granted. A few years ago I couldn’t stand more than a minute at a time without fainting, and the only time I really left home was to go to the doctors office or to the gym for my daily recumbent bike routine.  The thing I find most interesting about this is that I have really fond memories even from way back then. The amazing part of being an optimist and looking at the glass half full is that I do remember how shitty I felt, but it isn’t at the forefront of my mind when I think about being 23 years old. I think about watching Top Chef with my mom and dreaming about being able to cook again one day. I remember making “Dunkaroos” with Goldfish and salt because I couldn’t figure out another way to eat enough, and I remember close friends coming over and sitting on the couch with me and telling me stories about what their life is like post college. I remember sitting with my passenger seat reclined as my dad drove me two miles down the road to do my gym workout, and the stories we would tell each other back and forth. I remember him telling me I would get better one day, and my mom playing “Would You Rather” with me when I couldn’t sleep at night. I still have the memory of lying down in the middle of the movie theater floor so I wouldn’t pass out while waiting in line for popcorn with friends, but I don’t remember the extreme nausea and dizziness from that episode anymore. Now it’s a kind of funny memory, and I wonder how there was a time I didn’t feel embarrassed to be the center of attention for something so out of the ordinary. In fact, I feel lucky that I get embarrassed about POTS things now. This means I am healing and major health complications are not a regular part of my day.

Tonight I am stiff, sore, and ready for sleep. My shoulders hurt from a long week and I am ready for the pain to subside so I can get a good night’s sleep. Instead of remembering this feeling a year from now, though, I know that I am going to remember what it was like going out on a fun double date and reminiscing through old college memories, rather than how badly my shoulders hurt or how tired I am of “working to get better.” I know that one day I will be a lot more normal because I am still making improvements, even if they sometimes feel small.

Screen Shot 2018-03-31 at 11.43.54 PM.png

I don’t know whether looking at the glass half full is something you’re born with, or an outlook you develop, but I am so thankful that I have that ability in my life. I know sometimes it can be easy to feel frustrated or wonder why you got the short end of the stick in one way or another, but the way I see it is if a glass is half empty, it is because you enjoyed something from it, so there is something to be joyful for. Glasses are things that are meant to be filled and emptied, kind of in the same way that life sometimes has its ups and downs. We may not have the ability to control everything that happens in our lives, but we can learn to control our outlook, which is actually one of the most incredible and worthwhile things a person can do. Life isn’t always easy or fun, but there is always something to be joyful for — you just have to learn how to look for it.

Marks In Time

A lot can change in a year.

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

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

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

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

Screen Shot 2018-02-21 at 12.19.50 PM.png
My mom took this picture of me my first month being a New Yorker. I felt so at home rushing around the city in my little dresses and tights, and fit in with all the editors at Seventeen by living on coffee, books, and cupcakes.

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

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

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

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

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

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

Screen Shot 2018-02-21 at 12.16.50 PM.png

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.