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.
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 pain has been really bad lately. I can tell I’m really not feeling well when my nails look like crap — I love having painted fingers and toes, and always do them myself — and I begin forgetting things. Yesterday I had to turn around and drive home because I could’t remember if I shut the door — not locked it, but shut it — I fed Jax a second breakfast, and I can’t remember the third thing I forgot… It will come to me by the time I finish this.
I have decided that our next election I am going to really, really pay attention to healthcare and making it a top priority in how I vote. I’ve changed around insurance plans and being without physical therapy for the rest of the year sucks. The thing that frustrates the hell out of me is that I am in pain and trying to fix the problem by doing something that is good for me. I haven’t gone on medication to manage my POTS (Though I do think some people can absolutely not do without it and need to do anything that helps them have any semblance of a normal life), and I work hard to try to be as pain-free as possible. There are a few things that frustrate me. First, insurance doesn’t cover as much PT as I need in a year. I really have to figure it all out way in advance and go without it for periods of time to make ends meet. At some point my pain is going to go from a managed 3-5 with physical therapy to an 8-9 range without it*. Working out and getting hands-on work done is a key part of having me feel better than I do now. I never feel normal, but my pain is at least being managed. Second, PT is harder to get than medication and that makes absolutely no freaking sense to me. If there is a way to actually manage things without taking six different prescriptions I want to do it. Part of the complication of having a chronic illness is looking at your own symptoms versus what side effects medications will have on you, then picking the lesser of the two evils. You also have to weigh the pros and cons of being on something long-term. It makes absolutely no sense to me why doctors are able to prescribe something that I have to consume that will only temporarily put a bandaid over the problem, rather than trying to chip away at all the issues I have with the natural way of physical therapy. I am very dependent on going in for my visits, as I get terribly stiff and have a lot of pain when I miss more than a session, but I feel like I am making progress in a few small ways at a time. When I can’t go I start deteriorating and taking several steps backwards, even with the programs I do on my bedroom floor and at the gym down the street. I hate being dependent on anything, but having a chronic illness has really been humbling.
I feel like I have more freedom when I am feeling better because I do. I can do more when I feel better, and even at my very best I’m not at a normal 28-year-old level. When I talk to all of my grandparents on the phone, I feel like we relate more than friends my own age when it comes to how we feel. We are all in pain in one way or another, and can’t do as much as we used to be able to. I am scared of getting older and having the normal wear and tear of aging, but maybe they’ll have a cure for POTS by then. I don’t think about that often because it doesn’t do me any good to worry about the future, and I continue to focus on making myself get stronger and managing my symptoms on a day-to-day basis. I figure I’ll just worry about problems as they come to me and try my best to be healthy and prevent anything from deteriorating further.
Finally, I am frustrated because by asking to go to physical therapy I am not asking to do something excitingly fun. Sure my PT’s are all so incredibly nice and fun people I would totally be friends with outside the clinic (Shoutout to, Melissa, Hilary, and Jackie for being the absolute best!), but it’s work and it often hurts a lot when I have to get poked at while I am in pain. The benefits are feeling astronomically better, though, while I am going on a regular basis. So, my third and final annoyance is the fact that I can’t go to get help to have a shot at having even remotely close to a normal life. My quality of life when I am in pain is not good. I constantly feel like I need to throw up from the pain, but don’t. My usual level with treatment is a consistent “I just went on a long run” kind of pain, with a few sharp and gnawing pains here and there, but what I’ve been having lately is several times worse than that and blaring a lot louder. I often find myself having a hard time focusing on what people say to me because I can’t seem to get past thinking about the coat hanger pain that consumes me. I can never drive for more than about fifteen minutes at a time without feeling some sort of pain, but now driving makes me want to cry because of how much it hurts to be behind the wheel. I’m back to having a hard time figuring out how to be productive and what I can do every day because everything hurts.
I still don’t remember what I forgot before, but maybe once I can get taken care of my brain can start focusing on normal little tasks instead of honing in on how much it hurts to do anything. Speaking of which, I can’t sit at this computer any longer or my shoulders won’t feel okay in time for Christmas. I’m going to go spend some quality time with my foam roller and hopefully be able to get some sleep tonight!
*I think this was obvious, but for anyone who doesn’t know, pain is often measured in a scale from 1-10 in the medical world because it’s a little easier to articulate how you are feeling that way.
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!
We are over 4 months into the new year and I decided to reevaluate how I am doing on my resolution to fear less in my everyday life. I wouldn’t quite say I am failing, but I’d give myself a “C” on this front, and I am not okay with that.
Having a lifestyle blog for anyone in the world to read is a little nerve-wracking, but the fact that any of my friends, family, and acquaintances can read about some of my deepest feelings and thoughts is a whole lot scarier than strangers following along my journey. My best friends know what kind of beautiful, fearful, and thoughtful desires are in my heart, but putting it on paper for those who don’t know me very well makes everything feel a whole lot more intimidating. Ink is permanent and words are sometimes interpreted by readers differently than the writer intends.
I know people like to talk about what others are up to sometimes. I do think about 99% of my readers are kindhearted amazing people who genuinely want what’s best for me, so despite having a good number of readers on this little online space, I believe it’s safe to share my heart with you all. I also know how easy it is to make snap judgments about others on social media, though. This blog showcases a small piece of my life, despite my best efforts to share meaningful things with y’all, and it can be difficult when friends make an assumption based on one, three, or a dozen little posts from a couple days of life. Feelings can be long and drawn out or incredibly fleeting, and I write a lot about both.
After thinking about it a lot, I’m not going to say I’m done with being afraid — because I’m totally not, and there will be times I won’t share a lot of what’s going on in my life — but I am going to use the next few months to put a lot out there and cross off some of my goals without worrying so much about what other people might think. I will continue to work to “fear less” every day so that one day I might be able to call myself “fearless” in pursuing my dreams.
I haven’t done a ton of updates on wedding planning, mainly because I’ve just been so busy actually doing it. You know how fun and amazing the movies make everything seem? Parts of planning one of the most special days is just like that. Sharing the experience of finding the perfect dress with my mom and best friend was magical. I didn’t cry when I first found my dress — until I stepped onto the pedestal in front of the mirror and my mom started to. It was the only one that made both of us tear up, and that was the moment I knew I had found my dress. Going back to get the final seals of approval and choosing a few accessories was just as much fun. I’ve loved going to wedding expos, touring venues, and being silly and saying, “I wonder what has happened to my fiancée? Oh, I have lost my fiancée!” while I still can. I’ve loved looking at bridesmaid dresses, figuring out what colors will go with my shade of white (Who else knew there are like, ten different words for “White” when planning a wedding?), and daydreaming about what Robert will look like in a tux.
The hardest part of wedding planning isn’t the actual idea of planning, though. I love researching and chatting with people, I love thinking about little details, and I love getting to hear how passionate the vendors are about their craft. The hardest part about wedding planning is all the freaking chronic pain that’s been getting in the way. I hate to complain, but I do want to keep everything as real as I can for all of you as I go through the ups and downs of life. This is, after all, a lifestyle blog. I have so many things to check off of my list every day and mentally I can fly through them, but when I sit down to send emails and scroll through pages of ideas on my Pinterest boards and wedding message threads, my arms fatigue a lot faster than anything else. Ever since I’ve gotten in gear my arms have been bad again. I have knots and tender trigger points, and I have had the burning sensations I haven’t experienced in over a year now. I don’t know if the crunchy stuff in my elbows is still leftover scar tissue or something else, but my lacrosse ball doesn’t ever fully relieve the pain anymore.
I’ve had to take a step back and ask for more help. My mom has been incredible throughout this entire thing, and she’s gotten several of the big things checked off our list. I’m kind of in awe at how wonderfully she puts things together and has researched to figure out what vendors we can use to make our day a little easier and more carefree when it gets here. My mom is a cross between an angel and a superhero; I’ve always known this, but getting sick with a chronic illness at 22 confirmed it for me. She’s taken care of me throughout the entire time of being sick, and always puts my needs above her own. I couldn’t imagine doing any of this without her, and am so thankful that she’s doing this alongside me. If it weren’t for her, I know we couldn’t have pulled off a fall wedding.
I think the frustrating part of planning is that I so badly want to be able to craft and write down every single thing I do and learn. I want to blog about it all, I want to have a really snazzy wedding website to share all the details with all of you, and more than anything I want to be able to create so many special moments for everyone who is coming to our wedding. I wrote a little draft about my dream wedding when we first got engaged, and the most important thing is that I want everyone there to feel really special and joyful too. This is all such a Krista-y thing, and I want every moment that day to be filled with a new surprise and something that will make everyone really happy. There are about seven million things I want to do, but I have to be choosy because of my energy level and pain. Surprises and events take a whole lot of planning to just get the basics done, and I never would have anticipated so much work is put into one day!
So, now that I’ve shared the hard part about wedding planning, I’ll be excited to share all the things that have brought me so much joy. At the end of the day, this date is so much more than just a wedding. It’s the start of the rest of my life with Robert, and it’s just a really great way to celebrate with people we love and care about. I already know that there will be hiccups, I will be nervous to be the center of attention for a short bit, and that not everything will go according to plan. I know everyone says that a wedding is something a girl dreams about her whole life, but my dreams go so far beyond this beautiful fall day. Once September has come and gone, I know the real adventure has just begun.
Hello, blog family, I’m finally back! I had a pretty rough week. I haven’t really gotten much of a cold/flu/virus sickness since getting POTS because I am so incredibly careful with taking care of myself and not hanging out with people if they’ve been sick recently. My cardiologist has always emphasized the importance of a flu shot and taking preventative measures with POTS because being sick makes my chronic illness a lot more difficult to manage. Now I see why.
My parents took me to the emergency room just over a week ago because I kept getting sick and passing out on my way to or from the bathroom (Or the bucket next to my bed). That night was weird because I had decided to sleep at 8:30 due to extreme nausea. I had been in the car for eight hours on our way home from Boston that day, and hadn’t felt well most of the trip home. I typically get a little nauseous on car rides — particularly long ones — so dismissed it as a POTS thing and ate a few ginger chews in hopes of feeling a little better. There weren’t any signs of having any sort of bug, except for the fact that I almost fell asleep while we were driving a few times, which is really not a typical Krista move.
Anyway, despite going to bed early, I woke up every hour with really bad abdominal pain and couldn’t fall back asleep for more than a few minutes at a time. Finally, around 10:30, I started getting sick. As most of you know I still live at home, so my poor mom had to come in and check on me a million times to make sure I wouldn’t faint and hit my head on the hard bathroom floor. Finally, she came in and told me to get dressed because we were going to take a trip to the emergency room.
Surprisingly I didn’t put up a fuss. I slowly walked back to my room and threw on my Nike sweatpants and “Army Girlfriend” sweatshirt. My mental state was in tact, as I debated putting on my engagement ring. I quickly decided against it, and grabbed Robert’s dog tags instead. I figured just on the off chance something was really wrong I wouldn’t want my ring to get lost during any hospital drama, and that the dog tags would be pretty easy to wear throughout any procedure.
My dad helped me to the car as I clutched a big, white plastic bucket in my lap. Luckily I didn’t need it, as I had cut myself off of food and water an hour prior. Not drinking made me feel sick, but it also left my stomach empty, which was just what I needed.
Five long hours, two IVs of saline solution, and a couple of Zofrans later, I finally began to feel better. A few different things ran through my mind as I sat on my little white hospital bed. First, it’s crazy that nurses work all hours of the day. Like, we got to the hospital at 1-something, and didn’t leave until a little after 6 in the morning. There were people running around doing their job like it was a normal hour. Second, these people put their own health at risk by being around people who are sick with a lot scarier things than just the stomach bug that I had. Even towards the beginning of my visit I tried to stay far away from the people who were caring for me because I didn’t want to spread my germs. I quickly realized they weren’t afraid of getting my virus when they poked and prodded at the EKG electrodes I am all too familiar with. It was hilariously comforting having some normal medical procedures done when I felt like hell. I knew they weren’t going to help me feel better, but it was nice having something that made it feel like a normal trip to the doctors. Lastly, all of my nurses were kind and made me feel comfortable — at least considering the circumstances. It makes a world of difference when someone takes care of your feelings along with your symptoms. I always think back to the nurse who told me I’d have to endure my awful POTS symptoms for the rest of my life and that it wouldn’t get better, and I am so grateful that she was wrong. Hope and comfort are both such healing things, and I’m thankful for each and every person who decides to be encouraging and kind to the people they come into contact with.
I am completely better now, and am looking forward to resuming my normal life, writing schedule, and wedding planning — which I will have a million updates on in my next few posts! I am also going to keep pushing forward in my journey get healthy again. I have a few exciting diet updates I’ll be writing about on here, and I will continue to work hard at PT and the gym to keep my symptoms at bay. Here’s to the beginning of a new week!
This month I’ve had a very rude awakening about just how much physical therapy helps me. As someone with POTS and EDS, I have lots of chronic pain, particularly in my upper body and limbs. Whenever you go to the doctor or physical therapist, they ask if you can rate your pain scale from 1-10, 10 being completely unbearable. I’ve had very wide ranges, but the more I am able to go into the office and have hands-on work done, as well as doing my monitored strength and mobility exercises, the better I typically feel.
This article about exercising and living with EDS is well written and super-relatable. My insured PT visits ran out this month and I’ve only been a little over a week without care, but my pain levels have quickly shot up to an 8. I can’t focus on anything entirely because of how much everything hurts, and I can’t do the activities I’ve worked up to because of how much it hurts my shoulders and arms. Sleep is the only thing that relieves my pain right now, and I need to get back to my therapy sessions as soon as possible so that I don’t lose the progress I’ve worked so hard to get. It’s so frustrating living in a body that depends so heavily on doctors and working out the right way, but the thing that is the most difficult isn’t the time or effort put into all of this; rather, it’s the expense and toll this unwanted illness takes on myself and my family. I’ve always tried to remain positive and focus on the good in my life without allowing myself to dwell on the fact that it’s not fair for a young twentysomething to be sick, however it’s a lot more difficult when I feel like everything in the healthcare world is working against me. I don’t want to debate politics on this blog — ever — but one thing I do want to touch on is that I very strongly believe that people with disabilities should be cared for and given as much help as necessary to have as much of a chance at normalcy as possible. “Normal” hasn’t been attainable to me yet, but I feel blessed enough to not constantly have sharp, intense pain that I am grateful for the help I do get through physical therapy.
In the meantime, I’m going to continue to do the best I can by doing my gentle stretches, mobility exercises, and managing the pain the best I can until January comes when I can get back in a normal routine. I have a pretty big doctor’s appointment today, and am hoping to get some relief from my pain tomorrow, so if you could say a little prayer for me that would be amazing. I’ll be back on this little corner of the Internet soon, but wanted to write a quick update about what’s been going on lately since I haven’t been great at keeping y’all updated. Love and hugs to you all.
I would be lying if I said I wasn’t sometimes insecure about having a chronic illness.
I often try to hide my pain and symptoms, even from those I love most. First and foremost, because I want to try to ignore the fact that my life isn’t the way I wish it was. A part of me feels like if I try to shove all my frustrations with being sick deep down that some of them might disappear. Maybe if I close my eyes and pretend I’m not dizzy or hurting one day I’ll wake and that will be my reality.
Second, I hate sounding like a broken record. I’m in pain every day, so if I voice my discomfort people will get sick of being around me really, really fast. It’s kind of like when someone runs a race and keeps talking about how sore they are; it’s completely valid and understandable, but after being reminded for the fifth time that their legs hurt you wonder if they think you are hard of hearing. No one wants to hear about how I have sharp, painful triggerpoints in my shoulders or can’t load the dishwasher because it hurts my forearms to grip anything for more than a minute or two.
Third, I feel broken. I sometimes wonder why people still care about me since I can’t go out and have fun like a normal 26-year-old. I can’t give the acts of service to my friends and family that I’d like to, I don’t have a normal 9-5 job, and I need help with things that others do mindlessly on a daily basis. My parents have taken care of me since I got sick, and it’s been really hard to rely on others to do things that I want to be doing for myself. I’ve always been pretty independent, so giving up control in my life has been one of the toughest tasks.
My heart hurts because my head isn’t affected by this illness. I want to be able to run, dance, and crank out dozens of pages of words at a time. I want to be pressured by the journalism deadlines that were once the bane of my existence, and I wonder why my body has betrayed me and doesn’t allow the vigorous work ethic I once prided myself on. It hurts feeling like this illness hasn’t just taken some of my hobbies, but it has also stripped me of having a purpose on this earth.
That’s lie #1 I was fed when I first got sick. Deep down I know it isn’t true; I actually believe this is Satan’s disgustingly twisted game of trying to make a very complete and beautiful soul feel worthless. Worthlessness is a dangerous feeling because it’s based on a lie that only seems real to the person feeling it. I strongly believe every single person placed on this earth has a purpose they are here, including myself. I think each human being can add invaluable love, kindness, and strength to the world if they choose to give it. Each individual has some sort of special “X factor” that they can offer people in their life.
God wrote in Psalm 139:14 that each and every one of us was fearfully and wonderfully made. This means that we were made with His very own heart taking an interest in us, and that He made us different than anyone else. It means He cares about us more than we could ever understand.
That being said, I know so many others who are also different in one way or another and have had this feeling on some level. The next several weeks I am going to be completely smashing this fabrication and showing that the feelings of worthlessness are based on a complete lie. Whether or not you are a regular readeror you’re new here, I would love if you would be patient and stick around until I get to the main point of these posts. This message is so important, and I want to connect to your heart and help it listen to how I have begun to debunk the lies that the evil in the world wants us to believe.
In case you don’t come back, just know that you are a valuable part of society and you can make a much greater impact than you even realize. God gives incredible blessings to those who keep pushing forward and He can create a really beautiful masterpiece from brokenness. You just have to stick around to see what the beauty in your hardship is. Sometimes it won’t be as obvious as you might hope, but He sprinkles light into even the darkest of stories.