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.
Today happens to be a very POTSie day. Luckily, dizzy spells are much fewer and further between, but I hate when they decide to come around with a vengeance. I have been doing a new exercise protocol lately that is supposed to make me feel worse before I feel better, but I am optimistic about how much it could help me in the long run.*
Anyway, I am currently working on a post about what my POTS timeline has looked like, and the improvements I’ve made, as well as the things that are still different in my life post getting sick. It’s been so interesting for me to look back at different things I wrote throughout the years, but is great to have something tangible to look at regarding my life.
Certain things are becoming more normal, and I am pulling off looking like a normal human being like a pro. I have looked pretty normal since getting sick with POTS, since it’s an invisible illness, but I used to have to ask for help much more often. Now I think people around me often forget completely that anything is wrong with me! I hope one day this will be true. Despite being sick for over five years now, I will never stop hoping to get back to complete normalcy. I have a million different things I’m working on for the blog, so today I wanted to just touch on a few things that have been different for me the past half-decade.
1. I can’t enjoy taking showers. Sometimes I hop in a hot shower just because I am in pain and want something to release the tension in my muscles, but for the most part they’re just exhausting. I usually choose between washing my hair or shaving if I’m going to stand the whole time, and have to alternate between the two or rest quite a bit longer after I’m done. Does anyone actually find showers enjoyable? I can’t remember anymore; now they’re just exhausting.
2. I’m not very extroverted anymore. Before I got POTS, I was super extroverted. I was always around people and had an enormous circle of friends. Mentally, I still want to be doing a million things, but my body isn’t up to that. I feel tired and drained from doing too much, so I don’t go out nearly as much as I used to. When I do, it’s usually dinner or dessert with just one or a few friends, rather than hanging out in a giant group. When I first got sick I really couldn’t do anything other than try to stay optimistic, rest, and work as hard as possible to take care of my body so I could hopefully get better one day. I think some of my friends who weren’t around might have felt like I was neglecting our friendship, but in reality I just couldn’t function. I have lost touch with people I sometimes still miss. Getting sick really does show you who is going to be around for the long haul, and makes you see who has unconditional love for your friendship.
3. I miss writing for hours on end. My favorite thing in the world has always been writing, even back in elementary school or high school when writing wasn’t supposed to be fun. I always said English was my favorite subject, even when other kids would say “lunch,” “recess,” or “gym.” I loved learning more about our language and how to write things that people would enjoy reading. It’s difficult for me to sit at a computer and type for hours without feeling it after, and then being in a lot of pain for days after. I am very slowly working on endurance, and hope to be writing more and more.
4. I miss being a helper. Before I got POTS I was independent and strong. I loved helping other people in any way I could, and was always there to do acts of service. There is nothing I hate more than having to swallow my pride and ask others for help. I’ve had to do that a lot the past few years, and it honestly doesn’t get much easier. I hate inconveniencing others, and I have a really hard time telling people I need something. I am still working on communicating better, but in the meantime I use my writing as an outlet.
5. I wish I could have my old dreams back. I dreamt of living in New York City as a magazine editor, and thought about how many lives I would change through my writing. I wanted to be able to support myself, pay my parents back for school, and afford my own life. I wanted to keep pushing myself and training for another half marathon, and I wanted to collect a million new skills from the new people I’d meet.
I have set new and more realistic goals, and am focusing on getting my body in shape so I can reach higher. Despite my life being much more complicated now, it’s also somehow become more simple. I realize how much I value the people who are in my life, and how important they are compared to everything else in the world. I’ve learned to appreciate the many blessings I do have, and how to live in the moment better. I still feel like I’m looking to find my purpose in the world, but I also trust God now more than ever to have better plans for me than I ever did for myself. I’m just trying to figure out what that is now.
*For any POTSies who are curious, I am doing the Levine protocol.
I took a survey on my Instagram last week, and found a lot of people were interested in having me write about what I cook. Let me begin with this: I am not a chef, and before Robert and I got married we joked about how he would be doing all the cooking since I couldn’t even make simple grilled chicken without completely burning it. Like, I would char it completely to make sure it was cooked thoroughly. Now, though, I am all about creating recipes that are super easy, healthy, and tasty. I think cooking is fun, and I am surprisingly capable after learning more about different ingredients. I want to make recipes that literally anyone can do, and without all the work of measuring out ingredients and being hassled with following something exactly.
Today, I want to share my newest creation that I can actually take 100% credit for! I made it last night with some ingredients I picked out from the store, and I was actually anticipating to get a major fail blog post out of it. My coconut curry chicken is now Robert’s favorite dish I’ve ever made, though, and he said he gives it a 9.8 out of 10, which is the closest to perfect he’ll ever get. He said this was comparing it to restaurants and every kind of food he’s ever had. I asked if he’s ever had a dish that’s a 10 before, and he said no. Not to toot my own horn, but I am pretty proud that this was ranked as one of the best foods in his book!
Okay so it’s really easy to make, but before getting started I want to preface this post with something. I cook by eyeballing everything. I compare this to playing music by ear; you don’t need to have measuring cups or any sort of help reading exact numbers for my recipes. I’ll explain how I make everything based on ratios or describing how much flavor you want in a recipe. This, in my opinion, makes things a lot easier and more customizable from person to person. I typically make enough food for 2, so just add more however much you think you need when cooking for a bigger party. Here goes nothing!
Krista’s Coconut Curry Chicken
Chopped Garlic Cloves
Extra Virgin Olive Oil
Step 1: Preheat oven to 400°F.
Step 2: make the coconut rice.
Coconut rice is one of my favorite things and is so easy to make! Literally all you do is dump the coconut milk (I love the organic coco milk from Trader Joe’s) into a pot on the stove, cover, and heat until it begins to boil.
Just a heads-up, if you get the milk with a normal amount of fat in it, it might be partially solid. The first time I made this I threw out the milk because I thought it went bad since it was solid, but it’s supposed to be like this! It will melt into a liquid once it begins to boil.
Once the coconut milk is boiling, add a pinch of salt, and dump in about 3/4 the amount of rice as there was liquid. An easy way to do this is just measure it in the empty coconut milk can.
Once you pour the rice in the pot, re-cover it, turn the heat to “medium low,” and cook without stirring until the rice is fluffy and has absorbed all the liquid.
Now, let’s move on to the main dish while the rice cooks!
Step 3: Put the seasoning together.
Seasoning chicken is surprisingly easy. The only things I used were turmeric, curry, garlic, lime juice (sorry I put a photo with a lemon, but I changed my mind at the last minute and am not professional enough to retake the photo. Plus, using a lemon instead will not kill you, and is a fine substitute I’m sure), salt, and pepper.
Start by putting three shakes of chili powder into a mixing bowl. Then, put in a very generous amount of curry powder. After all, the dish is called “chicken curry,” so we need this flavor to really stand out! Add about half the amount of ground turmeric as there is curry in the bowl. I just eyeballed all of this to be more than enough to season the chicken breast with, that way I didn’t have to make up a mixture again or have a naked chicken.
Add a few pinches of salt and pepper, then stir in enough EVOO to turn the mixture into a little bit of a liquid, but still smell primarily like curry. If it smells too much like EVOO, add more curry and turmeric until the marinade smells like seasoning again. Squirt in as much lime (or lemon) juice as you think seems good. I used one of those premade lime juices that you keep in the fridge, and put in about 6 drops. Chop up a few garlic cloves and toss them in there, too. I really roughly chopped it, which is why you can clearly see chunks of garlic on my finished product. I bet you thought those were peanuts or some sort of fancy topping. Nope, just good ol’ garlic!
Step 4: Prepare the chicken.
I always start off by patting the chicken breast dry with paper towels, and placing it on a cutting board. As I mentioned before, I don’t know a lot about cooking, so I probably hack off a little too much of the chicken. Are those white things veins that need to be gone, or fat that is chewy and gross? Or is it just part of the chicken breast? Regardless, the shape of my chicken sometimes isn’t very pretty because of my lack of knowledge.
Then, cover both sides with salt and pepper. This is a step I only take because I have watched enough of The Food Network to know that it’s an incredibly professional move.
After that, throw the chicken into the sauce and cover it completely. I mixed all the chicken around a ton so it would be evenly coated. Put it on a baking sheet and cook until the chicken is white throughout. You can Google “How long do you bake chicken?” to find more answers on food safety and such. I don’t want to be responsible for any food poisoning, and honestly I just cook it until it seems ready, then cut into it to be sure that it is no longer pink.
Step 5: While the chicken is cooking, you can take care of the carrots. These are literally the easiest thing to make of all time.
Start by chopping up as many carrots as you’d like. I did four for two people, but they were enormous since they weren’t organic and were likely genetically modified. I don’t typically go this route, but the organic bag was way too big and heavy for me to carry, so here we are with these four foot long vegetables.
Then, let some butter melt in a saucepan. Once again, put in as much as you’d like depending on how fattening you’d like this meal to be. You could also use EVOO or some other ingredient to sauté. I don’t think it really matters.
Toss a bunch of cinnamon and a pinch of salt on the carrots. I love cinnamon, so I don’t think you can really have too much of it.
Cook until soft, stirring on occasion. It takes maybe like, 5-7 minutes?
Step 6: Cook everything until it’s all done, then put it all together on a plate. I don’t really know how else to end this, but I think you are capable enough to finish dinner on your own. I certainly have no idea what I’m doing and was able to execute it alright.
I’d give this recipe an 8/10. I really liked it and am craving it again now that I’m writing about it and looking at all the photos. Minus the ones of the raw chicken — raw meat really grosses me out, which made me almost decide to not include those photos. I think they were necessary to break up the steps and make this an easy read, though.
Please let me know what you think of this if you decide to make it, and if you’d like to see more of this! Since I love to cook now I might be doing a few recipes each month, rather than a million Instagram stories that will disappear.
I rarely go out for NYE anymore, but it’s still one of my favorite holidays. I love words and symbolism, so the idea of having a clean slate is such a beautiful thing filled with possibilities. This is my favorite idiom on January 1st, and I take resolutions pretty seriously.
The past few years I’ve been choosing a “word of the year” that I try to keep as the foundation of the decisions I make. 2016 was “perseverance.” It was the year of the deployment and involved a whole lot of patience, sleepless nights, and pushing through the really hard parts. Something I remember so well about this year was running away from my thoughts at the gym. I often rode the recumbent bike and pushed harder and harder to try to escape from the difficult parts of life. As I’ve grown up I’ve found my coping mechanisms for hardship involve either working out, or doing my hair and makeup for no reason other than to feel like I have control over something when I can’t do anything about certain things life throws my way. I have a hard time dealing when people do things that hurt me, and I begin to feel claustrophobic when I know there’s nothing I can do about the way others behave or the fact that my health is declining despite working hard to feel good. Finding things I can control when it feels like things are spiraling has been so helpful to my heart.
I skipped 2017 because I felt too busy and excited for Robert’s homecoming. I wrote all about trying to get Tom Brady to come greet him at the airport, then about what our reunion was actually like. It happened to be perfect, even without the greatest quarterback there with us. We started a normal life together this year, and I focused on being in the present a lot. This past year was supposed to be “Fearless,” but as I’ve said a few times before I failed miserably at this word for 2018. I didn’t leave my comfort zone enough, and I gave up on a lot of my writing because I felt scared of sharing my intimate thoughts with the Internet. One of the reasons Single in The Suburbsreally took off in the beginning was because I was able to candidly talk about my life without much of a filter or fear of being judged. I loved being open about the dating world with everyone because I realized that my dating life was just as uncomfortable, frustrating, and fun as every other twenty-somethings. I embraced the awkwardness, shared my weirdest stories, and ultimately tried to help other people realize they weren’t alone in anything. We all were having a hard time trying to find love and meeting someone who really understood our heart.
My problem now is that I don’t always feel as relatable anymore. I feel like nobody understands the pain that I have (Even though I know they do, and so many have been through so much more), I am more guarded and protective of my relationships, and I am afraid of the shadows of strangers that lurk on the Internet. Instead of feeling like I have a nice space where I can share without being judged, I feel like there are so many people who are cruel to others for having a different opinion, and “different” is a word that seems to define me. I can’t always relate to normal twenty-something’s lives, but I rarely find myself feeling insecure about being different. I was raised to love and be kind to everyone — whether or not they are similar to me — and I don’t understand the culture that accepts being cruel as a way to show disagreement. The Internet is plagued with trolls and people who get a kick out of tearing others down, which makes sharing any sort of opinion frightening.
This year I asked my Instagram friends to help me choose a word. We were either going to focus on “Joy,” or try “Fearless” one last time. The vote fluctuated from leaning heavily on “fearless,” to giving “joy” the lead later in the day. They switched back and forth a few times, and I liked that people seemed interested in both words, but ultimately I landed on FEARLESS for my word of 2019. I chose it for a few different reasons. First, I think it’s more difficult for me. Joy is something that comes more naturally with my personality, and although it’s been more of a struggle through times of hardship, I am always going to try to be joyful — regardless of the circumstances in life I cannot control. It doesn’t matter whether it’s 2019 or a decade later, I don’t see that changing about me. I like a challenge and being fearless this year certainly is going to be just that. I don’t want to lose the part of my heart that makes me kind, but I need to get my edge back that makes me more resilient to other humans.
Finally, I got some words of wisdom from a friend that if I live fearlessly, joy will come along with that. This was exactly what I needed to hear to pull the trigger and choose 2019 as the year of living fearlessly. I want this to impact several parts of my life. I am going to start writing on here more about things that matter to me — even in the areas where I feel like I’m different than the majority. I am going to face my fear of rejection in more than one area of my life, and I am going to pace myself for the dreams I want to chase. Finally, I’m going to teach myself that I am more valuable than what my body can and can’t do. One of my biggest fears since getting sick with POTS has been whether or not I could still be a valuable part of the world, even when I feel like I’m at my worst. Exploring what makes me special is a surprisingly scary thing because what I used to really value and love about myself was different before I got sick. I had very different goals and things I wanted to do in my life, but my trajectory drastically changed five summers ago. This is going to be a year where I take care of myself and learn how to be brave, even when it’s hard. 2019, get ready to be fearless.
My interest in blogging so much happened a year or two after I got sick with POTS. I’ve always loved to write and have had several different blogs or online journals throughout the years, but this is the first one that is really here to stay.
Despite today being Halloween, it is also the last day of Dysautonomia Awareness month, which is something I haven’t been able to touch on a ton since I was gone for much of October. Instead of writing about my own viewpoint, I am going to post some fun facts from the Dysautonomia International Facebook page — along with a few little comments about some of them. Also, Dysautonomia is an umbrella term for autonomic nervous system disorders, and POTS is my specific disorder.
Brain fog is perhaps one of the most frustrating symptoms of Dysautonomia because not only do you feel like you’ve lost a working body, but your brain gets riled up and confused. I am able to manage this one pretty well these days, but can always think better when I am laying down on the couch and have a normal amount of blood pumping to my brain.
It took me about a week and a half to get a proper POTS diagnosis, mainly because it just took time to get into the doctor who is now my cardiologist. The first doctor who saw me speculated I that had POTS since he could see the drastic changes in heart rate and blood pressure when I changed positions, but we did more extensive testing when I went to a second doctor who is an expert in Dysautonomia. Which leads me to this little fact:
No wonder every single person I meet in this area goes to the same doctors office and knows about the little red leather chairs. It’s crazy to me that something as widespread as POTS still has so few people who are considered experts in it. I think this will be changing drastically in the next few years.
My biggest issue these days is pain. It fluctuates greatly from day to day or month to month, but the coat hanger pain and arm pain is the worst. It is difficult to sit at a computer and just type as long as I want to because my arms, shoulders, and pecs have lots of trigger points. I am still going to physical therapy, and hope to work my way up to using a computer for a normal amount of time.
This makes me FUME. Anyone who tells a person that their chronic illness is in their head clearly has no empathy and has likely been blessed with good health for their entire life. Like, come to any doctor with me and they’ll tell you something is off with my autonomic nervous system. Come to my cardiologist and he’ll tell you every single thing that is going on, and why my body behaves the way it does. I may not always understand why I am having certain symptoms, but there is a logical explanation behind each and every one of them.
POTS is not a rare illness, it’s just rarely diagnosed or talked about. I happen to have a more severe case of POTS, however I guarantee if you are friends with a couple hundred people on Facebook that at least a few of them have been effected by it in one way or another. Since the number guesstimating how many people have it is so high (about 1 in 100 people), I speculate many of these POTSies have infrequent fainting spells, some unexplained vertigo, or a little handful of symptoms they are able to tolerate enough that they don’t go searching for answers. As the graphic mentioned earlier, it is only about 25% of people with POTS who are disabled from it.
Whether or not this is something close to your heart (no pun intended!), please take a minute to check out the foundation and educate yourself a little more about Dysautonomia. It will definitely be something you will notice at some point in the future, whether it’s with a friend or an acquaintance. POTS is a very easy thing to test for, as long as a doctor knows what to look for — which can be the hardest part of any chronic illness. Hopefully we will have a cure soon!
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.
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.
To say I’m not self-conscious about my chronic illness would be like saying I didn’t care what other people thought of me when I was in high school. Neither is true, but high school was a lot easier because at least everyone else felt the exact same way — and I knew it. Despite feeling self-conscious about the shape of my body or being worried about my future, I knew all of my classmates felt the same way I did. That brought a little glimmer of comfort even in all the confusion.
What’s frustrating about POTS now is that I feel so alone in it. I don’t have a close knit group of friends who are chronically ill, and frankly, that sounds exhausting. We would never be able to make plans with each other because one of us would always be feeling sick, and it would be a whole lot more difficult getting from point “A” to point “B” without having someone who could carry two water bottles or still think clearly even if it gets really hot outside. If I had known in college that one day I wouldn’t be able to carry a Smart Water bottle around for myself I would have been terrified for what my life was going to become.
I freaking hate having a chronic illness. I hate how it makes me feel, I hate that it’s so unpredictable, and perhaps most of all, I hate that I ever have to rely on other people to take care of me. I have always been super-independent, and despite being sick for almost five years now I am nowhere close to being used to all of this. Let that sink in. I have been sick for almost 1/5 of my life now, and I am still not even close to being used to it.
Every morning I wake up and want to be able to do everything for myself. I want to cook, then clean up the mess in one sitting. I want to be able to drive to meet my friends for lunch without worrying about where they want to go geographically because my arms might hurt terribly from driving too far. I want to have enough energy and strength to go to work, think straight with no interruptions from dizziness or brain fog, and get through an entire day without hurting and becoming stiff — then do it all over again five days in a row. I don’t understand why all of these things that feel like very basic human rights have been taken away from me.
I miss my independence so much I want to scream. I push myself to limits that I know are going to hurt me because I don’t feel like asking for help with little tasks. In my mind, people are going to get annoyed if I keep asking for help with so many seemingly easy things, and it’s not worth losing all of my relationships to feel decent. My brain understands that the people who love me are happy to take care of me, but my heart feels heavy and tight with frustration. I often feel like a burden — not because anyone has told me that I’m one, but because I can’t take care of myself the way I used to. I want to be the one to take care of my parents and repay them for taking care of me for more than just the 18 years they expected to. I want to be able to support myself financially, and I want to feel like I can give acts of service to my loved ones more than I am able to. I want my friends to understand the way that I feel and to know what it’s like to lose every sense of normalcy your body has grown accustomed to — but only for a day so that they can know what my every day is like and why I’m often so tired. I want people be able to feel my frustration so they can really understand how much small things impact me in my day-to-day.
I could write a book on all the things I miss that are really normal. I miss being able to make chocolate chip cookies from scratch all by myself, and I miss doing my own laundry (Seriously!). I miss going shopping without eventually feeling nauseous and dizzy. I think what I miss most is going places by myself. Whether it’s being able to drive into the city to walk around and explore by myself, or taking a mini road trip to see a friend, I wish I could drive myself around without having to rely on loved ones to chauffeur me around. I am 27 years old and want nothing more than to be able to sit in traffic by myself to see my best friend just one a state away whenever I want. I either have to wait until someone can drive me, or have her make the hour-and-a-half trip by herself to come and see me. Both the little and big things about being sick bother me, and I honestly don’t know if I’ll ever fully be used to being different this way. I hate asking people for help, and haven’t gotten a lot better at it over the years. POTS has made me realize that it isn’t always a person who can break your heart. There are other things in life that can take a little piece of it away, too.
131. That’s how many pieces I have written and that are waiting to be posted, but I just can’t find the heart to share. Most of my writing is really pretty simple. I write about dating when a friend comes and asks for advice, because I love giving it and trying to help other people feel confident and secure in the dating world. I write about POTS when I am having a particularly bad — or sometimes good — day, and I write about the way other people treat me with this problem that is so misunderstood. Then, I have a couple deeper posts that I am just waiting to work up the guts to publish.
Part of the problem is going back and editing through everything. Several of my entries have general ideas and thoughts in them, but aren’t completed. They are skeletons of blog posts, and need some meat on their bones to help them make sense and tell a story. Others just feel hollow and my heart doesn’t feel up to working on them. Two, though, pierce deep down into my heart and make it beat fast when I think about opening up. Using the words that are deep down in your soul can be scary because they expose your darkest secrets or insecurities people would never guess you are dealing with. Luckily, I don’t have that many “secrets,” as I am a pretty open book, and there isn’t a lot of darkness in my life, so I’d file my posts under “Insecurities” in the glaringly obvious ways I am different.
Today, though, I’m tired. I still don’t feel like working on my writing, and I have been so wrapped up in wedding planning and health stuff lately that I have only posted on here two times this month. I want to write and share every single detail of the little and big things that happen in my day-to-day, but I’ve also seen the dangers of speaking loudly for all to hear online. Tonight I am going to work on a post about POTS that I drafted a few weeks ago after a Taylor Swift concert. I’ll share something that can be really hard on my heart, because I think so many people with all kinds of disabilities will be able to relate. Sometimes the most meaningful thing in the world is to feel like you are actually understood — and that you aren’t alone. As much as it sucks sometimes, the Internet is really cool because you can always find someone with the exact same things you struggle with. I still think writing is something I am meant to do, so I’ll stop being selfish and start sharing again, even if I’m feeling worn out. I think today I just needed to write and feel like I am creating again, even if it’s a silly, rambly blog post.
My life hasn’t been normal for a twenty-something living in the suburbs of Washington, DC. Just 18 months after I could legally drink, I found myself stripped of all the independence I had spent time gathering while traveling across Europe for a summer program, working and taking care of myself at college, and moving to New York City even though I didn’t know anyone there. Instead of gathering more life experiences that would shape me into who I was becoming after school, I was thrown into learning the importance of appreciating even little moments in difficult days, and I was facing health issues that most people twice my age hadn’t even begun to deal with yet.
I would switch around a few of these. For example, I think taking a shower and shaving or washing my hair takes more than 2 spoons, but going shopping only takes 3, depending on the task (as long as I don’t have to push a cart or carry a lot). I have always been a really big fan of a nice, hot shower, but I honestly don’t even remember my pre-POTS showers. I don’t remember what it’s like turning the dial to the “H” without knowing that my heart is about to start racing like I’m running a marathon, and allotting some time to lie down after I’m done shampooing. I do remember the days I couldn’t wash my own hair, though. I remember first getting sick and not being able to stand in the shower because I would pass out. I remember sitting down in the bathtub in my pink paisley bikini so my mom could shampoo and condition my hair for me since the room was always spinning around me and I couldn’t stand by myself for more than a few minutes. In hindsight, the way my hair was washed is really similar to the way my dog, Macy, gets her hair washed now. We both just sat there and let someone else do a task we are less than thrilled about, but need to have done. I was 22 years old, had just graduated from college, and could not take care of even my most basic needs.
Despite making slow improvements with POTS, I still always look fine, so people usually cannot tell if I’m having a “good day” or “bad day” just by looking at me. Nobody else can see the way my vision blacks out whenever I stand up too quickly, or when my pain is acting up. Whenever I see someone pop right out of bed when they wake up on television I laugh to myself and think, “That’s so unrealistic!” then I quickly realize that it’s actually most people’s reality. Most people can jump right up from laying down to a standing position and not feel repercussions from their body. I don’t remember ever being able to do that, but logically I know that five years ago I would have been able to. Actually, come to think of it, it probably would have really freaked me out if I couldn’t pop right out of bed all of a sudden!
There are many things that I don’t remember from my pre-POTS life. I don’t remember what it’s like living with a “0” on the pain scale, I don’t remember being able to be low maintenance when traveling or going out with friends, and I don’t remember what it’s like feeling like you’re in the same boat with all your peers. College is so great because even though you are all doing such different things, you are all working toward some sort of career goal. I get sick of explaining what POTS is over and over again, and I hate the look of pity in someone’s eyes after I get done telling them about how even though I am still young, I ended up with a life-changing health condition at the very beginning of my twenties.
There are a lot of things I do remember so well from my old life, though. I remember going outside and finding out it was a beautiful day, so going for a long run. I remember deciding on a whim to train for a half marathon, and bumping up my mileage with ease. My brain remembers going to work and sitting at a computer all day long and all of the projects that I did, but I don’t really remember how it felt. I think about it now and wonder how I was able to do all of that without feeling stiff as a board and paying for it for the rest of the week. I have no idea how I ever survived without a foam roller or physical therapy. Did my body really once not hurt? Why didn’t I take advantage of that more?
I have been blessed, though. The crazy thing about POTS is there isn’t a lot of treatment that helps you get better, other than hard work in the gym (Which is done on the recumbent bike and with tiny hand weights), a good diet, and a great deal of luck. Getting sick has made me learn that there is no doubt in my mind that God does exist, and He has so much power and love to give. I still can’t believe how much more clearly I can think without all of the dizziness and brain fog, and I feel blessed to have good days mixed in with the bad. I actually think that most of the time I am probably on the higher end of the “happy scale” than a lot of twenty-somethings because I have learned to find the joy in the little things in life. I feel happy when I get to meet a new dog, I love being able to go outside for long and leisurely walks, and I really feel at peace every night when I look up at the stars. It’s really amazing to realize that even with so many planets and heavenly bodies so far away, my Creator still loves and cares about me. I always feel small when I think about how far away the stars are and how many other people there are in the world, but it really is amazing that God has a plan for each and every one of our intricately detailed lives.
I still don’t know why I got POTS or what my life is going to look like with it moving forward, but I am going to continue to share my journey and what I’ve learned with people, and I am going to keep working toward a more normal life. I’ve used a few spoons writing this and am getting dizzy because I really need a salty lunch, but I will be writing about The Spoon Theory again on my blog in the next week or so. I want you all to know what I use my spoons on, and how stealing a spoon from another day can be great because I am able to enjoy outings with friends, but it makes playing catch-up difficult the very next day. I, as well as all my other spoonie friends, just want to feel like everyone in life just gets it. That won’t happen unless we begin speaking out about our chronic illnesses, though, so I am going to continue being vocal about what life looks like on the inside for someone with a chronic illness.
Please take a minute to read this article by Christine Miserando about how she created The Spoon Theory. It is explained so darn well here, and I — along with every other person with a chronic illness — would give anything for people in my life to actually understand what it means to use spoons throughout the day.