This morning I wrote about how shockingly well I am handling all of this. Tonight, I’m crying about it. I think this is kind of typical of everyone right now.
I’m sick of being stuck inside and am dying to go on a normal date, missing my family and friends, and would love to be able to look forward to the beach this summer — or even just spending some time outside. I am scared for the health and well-being of loved ones and strangers alike. I am dying to go to Trader Joe’s to get my usual favorite snacks, and I don’t want to keep seeing how different life is by watching the news. It all feels like a weird dream. The beginning of this feels so long ago now.
All of this is incredibly confusing. Like, how did we get to a point where people can’t go outside? Anyway, this morning I wrote a much more lighthearted draft, and want to still offer some of that sentiment, even as a comfort to myself right now.
First, I have done the whole quarantine thing before — or at least it felt similar to me. When I first got sick with POTS I could barely sit upright, much less go do my normal activities. I created a new normal that gave me as much joy as I had in my 22 years before getting sick. It wasn’t always easy and I often missed things about having a healthy body, but I was still able to be happy, despite the earth-shattering change. This change was actually even bigger than the pandemic feels because I was so used to being an athlete and out in the world, but literally could not leave the couch or go from floor to floor in the house more than once in a day. Now I at least can stand up to cook, go to the basement to exercise, and play hide and seek with my dog. Lesson one, you can have joy in the face of adversity.
Another thing POTS taught me is that circumstances change. That’s lesson two of learning to deal with a life-shattering change. The first year I was so sick even going to the grocery chore was a difficult to impossible task (read: me lying on the aisle floor until I could stand again without passing out). Over time I was able to run errands. Then I could go out to dinner. Then I worked my way up to doing things like trips with friends or walking around the beautiful city of DC. I still can’t run or anything, but I can walk for an incredibly long time without feeling dizzy, my pain is decreasing astronomically, and I can drive for an hour at a time! I’ve really come a long way. My new normal did keep changing, and I’ve been able to work with it every step of the way. Things change, and even if they’re slower than you’d like, you learn a lot of lessons along the way and can still be joyful.
Finally, the most important thing in life will always be your loved ones. For this I am sure (Insert Nunzio voice here, Robert).
I’ve always known this, but having any kind of health scare definitely changes your outlook. It’s funny because I do definitely think taking things for granted is in our nature. When I was really sick I always thought I would never take little things for granted if I was lucky enough to get better, but sure enough, things like going out on walks with my dog weren’t aren’t appreciated and I haven’t taken advantage of the fact that I can do yoga now. It’s weird being so separated from everyone, and I think this experience will change the way we spend time with others. I hope we are more present and cut more time out of the day to be with people, and take the time out of the year to travel and visit our long distance friends and family.
Anyway, I think we all need to remember that this is going to ultimately be just a blip in our lives if we can all come together and support each other. I pray that we can get things under control sooner rather than later, and that we can all be tough together. I know this isn’t easy, but I feel like it will be similar to my past experience in that we will appreciate more in life, worry less about trivial things, and learn to be joyful through every stage in life. There are a few things I’m incredibly grateful for right now, and I know I’m being looked out for and taken care of, which is really comforting in this strange time. I hope you can find some things you’re thankful for in this transition time, too!
I kind of think the definition of “privilege” is worrying about what we can do to be entertained while being forced to stay inside. Trust me, I know it sucks being cooped up inside when there’s a great big world outside to explore, but it will not kill you to stay inside for a few days, weeks, or however long it takes to get a hold of this situation. There are people who are sick, dying, and in a lot of pain right now. There are people who are losing their jobs and livelihood. If you have a roof over your head, food to eat, and are healthy, you are blessed.
I can offer you a little personal experience about being stuck at home for a long period of time. Six years ago when I got sick with POTS I did not go out at all unless it was to a doctor’s appointment or my daily trip to the gym for my rehab. I tried going on small errands, but always found myself lying on the cold tile floor as I propped my feet in the air to pump blood back to my brain. Having the room spin in circles around me while I frantically tried to stay standing or avoid fainting in front of strangers was not fun, so those trips to the grocery store were cut real short.
I spent well over a year in really bad shape and on the severe spectrum of POTS. Research POTS a little and you’ll find that POTS patients’ quality of life is “comparable to patients on dialysis for kidney failure.” Before all of this I was active and played just about every sport, had a very busy social life, and was working hard to begin climbing the ladder in the journalism world. I hated sleeping in, and could rarely be found just sitting around at home. In 2013, my world flipped upside down and I physically could not do anything because I always felt awful. I very slowly got better and better, and now have added many more normal things back into my routine. I still am not “normal,” but am close enough that I am so happy and grateful for all of the wonderful freedoms I do have.
So, what does any of this have to do with the Coronavirus pandemic?
A lot, actually. I know what it’s like to be stuck at home for a long period of time, but the only difference is that now 1) I do not feel insanely sick literally all the time, and 2) we are all in this together. I remember crying when I looked at my Facebook feed because everyone was out in the world pursuing their dreams, and all I could do was monitor how my health was and celebrate the tiny joys in life. Nobody my age could relate to what I was going through, and I couldn’t participate in anything a normal 22 year old would enjoy. I watched friends go out dancing, get promoted at their jobs, and support themselves like a normal twentysomething. I wanted so badly to be able to function normally and be able to take care of myself the way they all were.
Now, we are all stuck inside, and I feel like you can relate to my 22 year old self in a way. I know you’re not asking for advice, but I’m going to share some of the things that helped me be joyful throughout every stage in my life — even when I couldn’t go out or really “do” anything.
The first piece of advice I have is to surround yourself with loved ones. Not physically this time, though — emotionally. We need to take this “social distancing” stuff seriously. A big reason for this is so that hospitals are able to treat every single person who comes to them — whether or not it’s Coronavirus-related. Italy is moving towards 1,000 deaths/day. We absolutely do not want to get to that point, and by staying home we are helping to flatten the curve so that hospitals can treat people who need help. A good option for keeping in touch with people is FaceTime, Zoom, Skype, or even an old fashioned phone call. The biggest thing I enjoyed when I was home for such a long time was just sitting on the couch and visiting with friends and family. That will look different now, as I am staying home and not seeing anyone new until we have gotten everything under control, but I still look forward to chatting with my friends and family every single day I am stuck at home. Experts are now recommending only interacting with the people you have been at home with, so if you’re lucky enough to have someone at home with you, cherish the time you have with them. If not, utilize technology to the best of your ability to have as much — or as little — company as you’d like. Luckily it is not hard to find someone to talk to during this quarantine.
Second, find something little to look forward to every day. During my POTS recovery time, my favorite thing was watching MasterChef and MasterChef Junior with my family. I loved learning more about cooking and having a steady show to watch. Now that I can stand up again, I love to cook and use some of the techniques I learned from the show in my kitchen. I actually have really fond memories from every stage of my illness, whether or not I could actually get out of the house and do anything.
Third, remember that this is temporary. This is not a luxury I had six years ago. I had some doctors speculate that I might grow out of POTS, and others who told me to get used to my new life. It turns out, there was a little truth to each of those perspectives, but it is best to remain positive and know that things can and will get better. One day all of this isolation will be a weird story to tell, and we will all be able to relate to the giant quarantine. In the meantime, finding little things to make you happy is important. There are lists all over the place of ideas of things to do indoors, and we are smart enough to get creative about this. We also have so much technology that being stuck at home is easier now than it would have been a decade ago. The worst thing to do is always self-pitying or constantly complaining about things we can’t control. We are lucky to be alive and healthy, and have access to so much, even from our living room couches.
The reason I keep talking about POTS is also that being at home with a chronic illness is something I wouldn’t wish upon anyone. I don’t think it’s easy for a healthy person who hasn’t ever had complications to realize just how difficult it is to adjust to having a dysfunctional body. I appreciate the fact that this quarantine hasn’t begun to drive me insane because of my past experience, but I wish everyone else could feel this sense of gratefulness too. All I can do to help is say it will get easier, and any of us who aren’t currently sick can really appreciate the fact that we still feel well while being stuck at home.
I know I ranted a ton in this, but I decided my blogging right now just needs to be a little journal of this time spent at home. Not only does it give me another activity, but it will also be interesting to read back on years from now. I encourage all of you to journal at this time so we don’t ever forget what it was like all being in the same boat during the 2020 quarantine.
The Internet is going crazy with things to do while quarantined, and now the quarantine seems to be mainly people who feel healthy but are are trying to *flatten the curve* since they could still be carriers. If you have not heard that phrase yet, please read this article on The Washington Post. It’s a really amazing illustration on why it’s important to use social distancing (another phrase that’s blown up this week) until we’ve got a handle on this. Luckily I am finding more people finally taking this seriously now that it’s really blowing up (WHY couldn’t we have done this a week ago?! You live and you learn, I guess).
In the meantime while we are being careful, being inside and away from our normal activities is incredibly difficult! I think back to when I first got sick with POTS and had to spend months finding things to do in a reclined position, and am realizing that it’s pretty ungrateful of me to be complaining about feeling pretty good and just being stuck in my house. As a former queen of television, here is a giant list I compiled of binge-worthy shows. I should note that you should just skip reading this if you’re not into reality TV, crime, or comedies.
The Office, Comedy
This is a really obvious choice. Whether you’ve seen it a million times like me (It’s the only show I always know
Parks and Recreation, Comedy
If you like The Office, you’ll probably like Parks & Rec. Give it a few episodes. It gets good!
Fuller House, Comedy
I just realized I have not seen the newest season of Fuller House! It wasn’t the best show ever, but I’ll be happy to have something lighthearted to watch. As a side note, if you have Disney+, you should watch Boy Meets World. I never saw it until a few months ago and shockingly think it’s really funny, despite thinking it was going to be a show for kids.
The Stranger, Suspense
The Stranger is such a good show. There are only 8 or 9 episodes out right now, but I thoroughly enjoyed watching it a few weeks ago and 100% regret not saving it for a rainy day like this. If you like all things suspense, you’ll love this thriller.
You is a little gross and super creepy, especially if you’re a girl who might be afraid of something like online dating. The main character, Joe, is
Love Is Blind, Reality TV
LIB has been super popular on all social media platforms the past several weeks. The idea behind it is simple — you go on the show to try to fall in love with someone you’ve never seen before, then end the show with a new husband or wife. A group of men all live together, and a group of women all live together. They take turns going on “dates” with each other in these little things they fondly call “pods.” A pod is basically a personal living room with a wall that divides the opposite sex’s living room from yours. You speak through the wall and learn about people’s personalities to try to fall in love with someone you’ve never seen before. It’s very interesting, has a decent amount of drama (Which I love), and is super bingeable now that they taped both the finale and reunion. No waiting around to figure out whether each couple ends up with one another!
The Circle, Reality TV
The Circle gave me Big Brother vibes, with a Love Is Blind twist to it. Basically, people are all in the same apartment building but can only chat with each other via a Facebook-type app. They have to vote to eliminate someone every couple of days, and the last (wo)man standing leaves with $100,000. Spoiler alert: your favorite person in this show is going to be Shooby.
Gilmore Girls, Drama Gilmore Girls is kinda cheesy, but a good show to binge. I’m not going to watch it yet, because I think it will make me miss my mom, but saving it for a later date maybe!
Hart of Dixie, Drama
I watched this show a little with my parents a few years ago and first, I love Rachel Bilson, second, I liked having a lighthearted show that gave me Hallmark vibes to watch. I think this might be one of my next shows.
Psych, Comedy with a side of crime and suspense Psych was a show on USA when I was a teenager and I haven’t seen it in years, but it is one of the funniest shows I’ve seen. I love that they mix suspense along with two of the arguably funniest characters on television. Shawn and Gus are such a great dynamic duo; you’ll fall in love with their goofy, quirky ways. Plus there are a bunch of seasons, all of which are nestled on Prime!
Law & Order, SVU, Crime
Even though it isn’t true crime, some of the episodes were created after famous cases and I think it’s interesting to see how the detectives on the show deal with figuring out crime scenes. The show is heavily criticized by law enforcement, but being a regular civilian I enjoy watching it.
The Mindy Project, Comedy
PLEASE WATCH THE MINDY PROJECT. I’m telling you; it’s hilarious. If you like The Office and are a female, you’ll love this show. I wasn’t a huge fan of Kelly on The Office, but always loved Mindy Kaling. She has the BEST sense of humor and is so lighthearted and fun.
Nathan for You, Comedy
NFY is one of the funniest shows I’ve ever seen. I haven’t watched it in a few years now, so want to start watching it before I go to bed now. Nathan is super awkward, super goofy, and super funny. He kind of is a mix of Michael Scott and Jim Halpert, but even more extreme. Watch it if you need a good belly laugh.
Wait, Seinfeld is on Hulu?! What?! I always just watch it when it’s on cable, but it would actually be fun to scroll around and find some of my favorite episodes to rewatch. Noted.
The Bachelor, Reality TV
This season of The Bachelor was a little controversial, but overall got decent reviews from viewers I think. Peter was not the best bachelor we’ve seen, and we figure out why in the last few episodes. In my opinion it was the best season we’ve had in years.
Catfish, Reality TV
Guys, I just discovered that Hulu has 7 seasons of Catfish!!! This show is great for a little bit before taking a break to something more lighthearted. I always feel so bad for the people who get tricked online, and sometimes even for those who are pretending to be someone else. It’s fun guessing whether or not someone is real or a catfish, and some of us can even relate to being catfished on a dating app.
90 DayFiance, Reality TV
Still haven’t watched this, but several people I trust have said I would like it, so I’m excited to see the series on Hulu. From what I understand, people meet each other and have 90 days to get married. I don’t know how or where they meet, and if they’re set up with a bunch of people or just one, but it involves love and reality TV, so I’m all for it. Will report back after binging some!
Keeping Up with The Kardashians, Reality TV
Don’t judge. There are 8 seasons of Keeping Up on Hulu right now, and this is great mindless background noise. Plus, there’s something soothing about the show that is perfect for a pre-bedtime routine.
And finally, I saved the best for last,
ON AN APP
Big Brother Canada, Reality TV
Obsessed with Big Brother in general, and BBCan is basically the same as the US version of the show. Big Brother is the best show to start following right now because if you’re not watching the normal episodes, you are able to still watch the live feeds of the show! I will post a link to the show when I find a good way for anyone to watch it. This season is so good so far; I’m only on the 5th episode, but am eager to catch up!
For those of you who don’t know what Big Brother is, it’s a reality show where the contestants are taped 24/7 and all locked inside the same house. It’s kind of like Survivor, but indoors! The players compete for $500,000, and each week they vote someone out of the house. There are a million different strategies, and it’s a great social experiment. The interesting thing about this season is that none of the players have a clue about the pandemic that’s going on in the outside world. They’ll definitely be shocked when they get out of the house. They’re also the safest right now since nobody new goes in to the house!
That should all last you a few weeks. Add video games and board games to your itinerary and you’ll be good to go! I’ll write more about other things to do later, but let me know if you watch and like any of these shows. Stay healthy and safe. Wash your hands and don’t go out unless necessary!
I have a Coronavirus post I wrote yesterday, but first I wanted to share a much shorter sentiment today. I am so thankful that so many people are cooperating and trying their best to stay inside and avoid, not only getting the virus, but spreading it to others.
Every flu season since getting sick with POTS I get the flu shot and wash my hands like crazy to avoid unnecessary complications that could come with the flu. It’s always so freaking annoying when you get together with someone who informs you that they’ve been fighting off a fever or cold all week, and you wonder why the heck they didn’t just stay home and not infect everyone else. This Coronavirus is a small taste of what immunocompromised people* deal with every year in trying to stay healthy.
One of the biggest problems in China and Italy is that people who carried the virus kept going out and contaminating the rest of the community. One person who is carrying the virus can do a heck of a lot of damage if you think about how many people each of the people (s)he affected go contaminate too. If we would all just stay at home for two weeks — the incubation period of the virus — wouldn’t it maybe just stop here?
I honestly am not an expert and not pretending to be. I’ve kept up with some updates from my POTS doctor, as well as followed the local news on Coronavirus cases in our area.
I’m used to seeing people be very nonchalant about getting sick because they’ve never been chronically ill before, but this is a new phenomena. People all across the country are quarantining themselves, only going out to get groceries and the apparently hot commodity that is toilet paper. People who are completely healthy young adults are staying in, not just to avoid the virus themselves, but also to avoid spreading it if they are actually carrying it and show no symptoms. This includes celebrities, politicians, athletes, and people who are in the public eye. My Instagram and Facebook feeds are flooded with posts about being locked up at home and canceled plans until we get through this. People are asking for TV shows to binge, games to play with significant others, and treating this like it’s a big snowstorm in which you can’t leave your house for a few weeks. This is absolutely amazing. I really hope we continue to try to fight this pandemic and end it in America. Stay in, get lots of rest, and snuggle up to a pet, loved one, or fluffy blanket to ride this out with the rest of the country. Here’s to hoping and praying for all of the at-risk people, the amazing doctors and nurses who make a million and one sacrifices for each and every one of us, and everyone else, too. ❤
*The verdict is still out on whether or not Dysautonomia makes me immunocompromised, however POTS patients struggle when they do get sick because our bodies already have a very difficult time finding homeostasis. On a daily basis I try to find the right balance of salt and electrolytes with water so that I’m not constantly dehydrated and battling debilitating headaches that last for days. Ask my husband — when my head hurts I think he has to say something three times to get it to fully process.
I like to write things like this because I also have a bunch of friends now who do have serious chronic illnesses that wouldn’t just cause complications if they got sick — it could be a lot worse. People need to know how their actions affect others, and I don’t think staying in for a few weeks will kill anyone. It could, however, be problematic to those who are at risk.
Man, I’m tired. I am having more pain tonight because I’m a huge goof and haven’t taken care of myself the past few days. I’ve been wrapped up in trying to get work done (Have I mentioned on here I have been working from home? I started it in October and it’s been really great) and been slacking on my mobility work. My neck hurts, my shoulders hurt, and the muscles between each of my ribs hurt.
I got POTS over 6 years ago, which means I’ve had chronic pain for most of that time. It’s gotten better and better the more I’ve worked on it and gone to physical therapy, but it’s still freaking weird knowing that if I’m a 2 or a 3 on the pain scale, that one day it will likely spike, even if for a short period of time. I don’t really know what causes all of my flare-ups, but I feel frustrated when I cause them by neglecting taking care of myself. It annoys me that I have to focus on my health so much while still in my 20s, so sometimes I do rebel and take a few days off. I always regret it, but sometimes I just need a break.
One thing always makes me so so happy, though, and that’s dogs! Here are some of my favorite dog pictures from this month. Hopefully they’ll make you smile as much as they do for me.
Here’s my handsome little man at the P-A-R-K.
I took this picture of Macy right before leaving the house. She was all snuggled up and happy in her PJs, and I always think of her as being my little angel.
This picture of Jax isn’t by any means “good,” but it cracks me up because I pulled out a bag of pretzels at 2 in the morning a few weeks ago when I wasn’t feeling well. It was hilarious seeing how quick he was to lunge onto the bed to steal some of my snack. He had been sound asleep on the floor until then.
Luckily, Jax usually sleeps in bed with me when I’m alone. Here is another favorite photo at bedtime. I typically have to shove him to the side a few times in the middle of the night because he likes to hog absolutely everything.
And here’s a throwback gem to my sweet little angel, Gracie. These pictures all make me so happy. :’)
I started my first consistent normal-ish job and am working from home now! I’m doing editing and publishing for a PR company. It’s been really fun, but has also kept me busy, and I still only have a certain amount of time I can spend on a computer without my elbows or neck beginning to hurt. I am making leaps and bounds of progress, though, and am so freaking happy about that! It’s sometimes funny to think about, but I honestly think I’m more thankful for my body now that still is not working the way it should be, than I ever was for my body pre-POTS. Before I got sick I played just about every sport, could run 6 miles no problem, and a half marathon with just a little bit of soreness after. I had a seemingly endless supply of energy and would wake up early, go to bed late, and made time for work and play almost every day. Looking back I don’t know how I didn’t realize how lucky I was. This is just how life works sometimes, though.
I never in a million years thought writing would ever be difficult. Mentally, yes, but physically I should have been able to write for decades before anything became remotely difficult. I have a hard time finding outlets for my feelings sometimes since running has been off the table, and even writing things down can be painful sometimes.
Anyway, I haven’t been able to write for fun very much lately, but there’s not a lot I’ve wanted to share. I’ve become much more private with my life in the past year or two; maybe I’ll explain why one day, but I’m not ready to right now. In the meantime, I am going to get back to my Trader Joe’s Tuesday posts because I have a very deep love for that grocery store. I’ve loved being a stay-at-home dog mom, and think I’ve become a very good cook this year. I figure I share my recipes with my closest friends each week; why not write about it a little too?!
I hope you all had a very nice fall. I’m not doing a very good job coming up with words right now, so I’ll save all of us some time and keep this post short. Have a great Thanksgiving if we don’t talk before then. ❤
I woke up this morning in a sweat. My heart was racing as I jolted awake from some sort of nightmare. I immediately started thinking about things that make me nervous about the future, and how the heck I’m going to get through it all. My stomach dropped deep down into my abdomen as my heart leapt straight through my chest. Apparently you sometimes can’t even escape anxiety in your dreams.
Anxiety is a cousin of depression. They’re close in the sense they both can be based on fear and uncertainty, but they give two very different feelings. Depression is hollow and dark. It feels like a rainy day in a swamp, with fog as far as the eye can see. You know it’s a wide open space, but you can’t muster up the energy to move around freely. You are curled up in a ball, only vaguely noticing that there is a world around you. I think often with depression, the person in the middle of the fog can really only see a few feet around them and can’t tell that there is light and beauty outside the dark swamp. In fact, there are still beautiful flowers and little glimmers of light while you are there, but they can be difficult to see if you give up and stay curled in your little ball. Rays of light come in the form of good friends, puppies, working out, and helping others. There is always a reason to keep fighting, but everyone understands if you need to take a break for awhile. It is exhausting when you feel like you’re alone and don’t know how to pull yourself up off the ground.
Anxiety paints a different picture. Instead of being a more introverted feeling, anxiety is the craziest extrovert you’ve ever seen. It is wild and red, and hot to the touch. Anxiety makes you feel claustrophobic in your own body, and creates a strong desire to run away from yourself. With depression, you would rather be able to get back in to your own body and figure out how to find yourself again. Anxiety makes you want to forget everything there is about you and run away to create a new life. You want to turn your brain off to stop thinking about anything and everything and find a way to sleep again, but you can’t take a vacation from your thoughts. Both depression and anxiety can create a pit in your stomach, but they’ve often settled there for entirely different reasons.
I have tiptoed along the line of depression sometimes, but I think having some down days is part of the human experience, so it’s very different than it was being in the darkness I have only been in once before. Anxiety is a much more familiar feeling I let sneak into my heart. It starts by catching the door with its foot, then shoves its way in guns blazing. “You’re not good enough,” “You won’t be able to handle the future,” and, “You can’t do the thing” are all lies anxiety screams as loudly as it can. It makes up elaborate and unlikely stories of what your future is going to look like, but speaks them with confidence and as truth. It’s a lot easier said than done to choose not to believe the lies, as a simple, “just don’t worry about it,” or, “calm down” won’t ease an anxious person’s heart. It is possible to find peace, but takes a lot of swallowing your own pride, accepting help from others, and being gentle with yourself.
Anxiety and depression are both so prevalent in today’s world. I don’t know if the age of social media has caused a rise in mental health issues or we’re just more open about them now, but I’d say more people than not have had a taste of these feelings, even if they haven’t been officially diagnosed with anything. I think we underestimate how not-alone we are in the world and how similar our feelings are to one another.
Talking about anxiety makes me anxious. I still think people are quick to judge, label, and make assumptions about people they don’t know. Despite genuinely believing most people have a good headspace about talking about mental health, I know there is still ignorance and confusion in this space of the world. I know that therapy is still stigmatized, and that people don’t always love and support things they don’t understand. So many people, though, who you would never guess are fighting difficult battles by themselves. Sometimes the most beautiful, smiley rays of sunshine have a darkness that is clouding their heart, and I am so thankful that celebrities and people in the limelight who have platforms are speaking up about their struggles more. Emma Stone, Ryan Reynolds, Mindy Kaling, and Stephen Colbert are all people who live to make others laugh, but struggle with anxiety. Jim Carey, Owen Wilson, Ellen DeGeneres, and Sarah Silverman have all been very open about dealing with depression. It isn’t just comedians who struggle with mental health, though. There is an enormous list of people who range from athletes to astronauts who have been affected by depression or anxiety. Even Abraham Lincoln is thought to have had severe depression and anxiety; they just didn’t have a word for it then.
My purpose in writing this is because I think it’s so important that we realize we are never alone in our thoughts or feelings. People need to be taught from a young age that it’s okay for everything to not be okay sometimes. People should realize that we all have battles we’re fighting, that we can share our struggles with our loved ones, and most of all, to be kind to everyone we meet. I am not “Instafamous,” do not have a large group of followers, or a particularly captivating life to share about, but I want to open my heart to the people who do read this in hopes it makes someone feel less alone. I see you, and care about you. We need you here, and you are important. Please don’t ever forget that.
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.
One of my best friends, Nicole, called me from Trader Joe’s the other day because she knows how much of a TJ’s fan I am. She wanted to know about a few of the items there, and after chatting for awhile I decided she would probably love to try my crispy pesto salmon. It is absolutely delicious and has the perfect little crunch over a creamy basil pesto sauce. Hungry yet?
Gluten-free Crispy Pesto Crusted Salmon
Okay, so here are the ingredients:
-Wild Caught Salmon (Boneless)
-Corn Flakes Crumbs
-Extra Virgin Olive Oil
Step 1: Preheat oven to 400°F. I almost always do 400 because it’s just easy to remember and 50° above or below 350° and 450°, so I figure it works no matter what.
Step 2: Chop up the sweet potatoes and broccoli florets and put them on a cookie sheet. I always do the veggies first so I can use the same cutting board and knife for the meat. It makes cleanup so much easier having fewer dishes! I also always use aluminum foil because it’s easier to clean off a pan this way.
Step 3: Drizzle EVOO, salt, and pepper on the vegetables. Feel free to get crazy and add spices like cinnamon or turmeric to them if you’d like! They’re known for regulating blood sugar and helping with inflammation.
Step 4: Pat the salmon dry, and cut it into however many servings you’d like. It doesn’t matter how large or small the fillet is.
Step 5: Put the salmon on the same pan as the veggies. You can drizzle a little EVOO on the pan before placing it there, and then cover in salt and pepper.
Step 6: Make the pesto sauce. Mix 4/5 parts pesto, 1/5 parts mayo. It doesn’t really matter how much mayonnaise you decide to use, but I always like the pesto to still have a very green color. It just looks a little more pale when you put the mayonnaise in. I should note that I hate mayo in everyday life, but it adds a good creaminess to this dish!
Step 7: Spread as much of the sauce as you’d like on top of the salmon filets. I usually make it a little thick so there’s more flavor, but if you want it super-crispy, be more conservative with the sauce. Then, sprinkle as much of the Corn Flakes as you’d like on top of the mixture on the salmon, and put it in the oven to cook.
Step 8: Bake until the salmon is ready (It depends on how well done you’d like it), and the vegetables begin to brown.
Step 9: While your food cooks, make the extra pesto sauce. Mix the same ratio of pesto and mayo, then add a few squeezes lemon juice, a pinch of salt, and a few pinches of pepper.
Once everything is done cooking, take it out of the oven and top with as much of the extra pesto sauce as you’d like. Robert likes it on his veggies too, but I only eat it on the salmon because I think that’s kind of weird and I like the vegetables just the way they are.
Post a comment if you decide to try this how you like it! I didn’t post a picture of the end result because 1) I was too hungry and took a few bites before I realized I probably should have gotten a pretty picture and 2) I don’t know how to make brown things look appetizing. The end of this reminded me of Thanksgiving dinner — it tastes amazing but no matter how hard you try to make your plate look good, it never in a million years will.
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.