Yesterday I felt really proud of myself. I don’t often think about “me” as a person — other than maybe self-improvement or things I want to learn to better understand why my brain works the way it does.
I just started up physical therapy again. I have a goal of getting off my muscle relaxants, which is a real B* if I’m being honest. POTS is an autonomic nervous system (ANS) disorder. This means that everything that a body does for you automatically, mine does not. Or, sometimes it does — but it royally screws me. Like, on my second date with Robert when he thought I was head over heels for him because he felt my heart racing when I was sitting up against him on the couch. OK — maybe I had a little bit of a crush and totally wanted him to kiss me, but my heart always races when I feel any kind of emotion. Most people probably have a slight change, but my ANS is a freaking drama queen.
Anyway, the purpose of taking muscle relaxants for Dysautonomia (umbrella word for POTS and EDS) is that it tells me, “HEY, I am going to sleep, let’s relax like a normal human being.” My body is dispositioned to respond to my chronic pain by always being tight and trying to hold my muscles and joints together for dear life by tensing up. This is especially not good when I am sleeping, as it doesn’t give my body the chance to have a normal recovery. Things just keep getting tighter and tighter, which is really painful. I don’t think anyone in the medical field will appreciate the way I am describing this, but hopefully it kind of makes sense to those who know much more and less than me about what’s happening.
So. Back to my goal. I want to get off this medication I have been taking for years now. When I first had issues with pain I was prescribed Tramadol. I was told it would help with the pain I was experiencing — but upon some quick research, I saw that I was given an opioid. Yeah, nope, too scary. I think some people need this kind of relief, but I was determined to have something so serious be an absolute last resort. So I did vigorous physical therapy. I remained in a great amount of pain, but I eventually made it to a neurologist who specialized in pain management and was a well-known POTS expert. This is how I found the treatment that has worked for me for years now. The only medication I have taken for POTS is a muscle relaxant. I want to see if I can manage on my own, though. I tried by myself and it was a shit show. Lots of pain and managing work felt impossible. I am working with a team to do this now, though. I think we have a good plan, but we’ll see how it all goes.
Now that you have some background, I will get to my recent experience that prompted me to write. I am getting dry needling done right now. It really hurts. I am incredibly tight, have a lot of trigger points, and writing at a computer all day just aggravates everything. After a few sessions, my PT told me that I have a high pain tolerance. I thought this was funny because I felt like I was going to either throw up or pass out during one part of the treatment, but I wiggled my toes to distract myself until everything was over.
I’m proud of myself for never giving up. I’m proud of myself for trying. I’m proud of myself for not complaining and for genuinely loving my life, despite the weird adversity I have experienced. I have been really good health-wise lately, but it is really difficult trying to manage my pain. Everything is so temperamental and I’ve found something that generally works, but I feel like I want better. I am proud that I always made the most of every stage of life. I worked a few hours when I could, then moved to a part-time job, and am working full time now. I gave myself time to cry and mourn the loss of a normal life. I still miss running any time I think about it. It’s been almost 10 years since I last went out for a normal jog. This actually feels crazy, because I so vividly remember how much I loved the feeling of the cold air burning my lungs as I pushed to run just one more mile. I honestly am not used to being in pain, but I don’t remember what it was like having none. I don’t think you can understand this unless you have experienced it yourself.
I have adjusted my whole life to this, but I also haven’t taken a great amount of time feeling sorry for myself. I know people all have things they deal with and I hope I can keep sharing my journey with you. A health diagnoses is a heartbreaking thing, but like in love, hearts heal and adjust. Almost ten years in, I still feel like life with POTS is my “new normal,” but I have healed a lot and plan to continue to do so. I am excited for the moment I can tell you I have made more leaps and bounds. It’s happened before, so I’m optimistic that I still have more that I can improve on. Not sure what this will look like yet, but we’ll figure it out.
It’s funny how the days go by slow, but the years just seem to fly. The last time I wrote here was before we even moved. Now we’ve been in our house for over a year.
I have writer’s block. Which bugs me, because I love to write. I have become more private as I have gotten older, and I don’t know what to write about. I love my job, but it offers very little creativity. I always wanted to be a journalist. Like, when I was in the second grade, my mom would buy me editing workbooks because I wanted to edit in my free time. I would finish my homework, only to go open a nice, fresh proofreading workbook to see if I could find all of the mistakes. I wrote mini newspapers and magazines and truly enjoyed doing my English homework. It was always my favorite class, right beside gym. I was always the kid who came in with the longest essay because I could not say enough. That is, until I learned that a good journalist can get their point across with brevity. Then my new challenge became writing a piece just long enough to give all the details I wanted to convey, but short enough that people would read it. The only part I have always hated about writing is coming up with a good title. I still never know what to name these freaking posts, which is part of the reason I have upwards of 200 drafts just sitting there.
I have things I am passionate about and would enjoy posting on here, so I’m going to start tonight. I want to continue to raise awareness about POTS. I have something written about this already. I forgot what hell it is to lose the ability to protect your body from taking you captive. We NEED to find a cure. Want to learn more about it? Check out Dysautonomia International for some statistics, but you would think that an illness that affects millions of people would have more funding. Many people with POTS don’t feel well, but can still function. About a quarter of cases are so debilitating that patients cannot work. Experts compare the quality of life to someone with congestive heart failure or kidney failure. Most of those affected are young women. I have a lot to say about this, so we’ll be circling back to it; I have been thankful to see POTS taking the news by storm the past year, but I want to keep raising awareness and trying to do my part. It is easy to step back and live my life without giving it a second thought since I have been feeling well. That isn’t right. I am lucky to be doing well, but isn’t that more of a reason to advocate for those who can’t? I have absolutely failed in this regard.
This isn’t my “Chronically POTSitive” blog, though. This is the blog that I enjoyed sharing my life on several years ago, and I want to talk about other things I think are important. I will always lead with empathy and know that I’ll make mistakes if I keep writing, but I think that’s a problem right now. People are afraid to talk because opinions are all so very different. We hear the loudest people and the most argumentative people, but many of us have been silenced. We are in an age that doesn’t always like things or people who are different, but I think that’s probably more of a reason it is important to speak up.
I want to talk about women’s self defense because I know more about the world we live in. I can confidently say that every woman reading this knows how it feels to be home alone and wonder what the bump in the night could be. We know what it is like walking to our car alone at night, and are cautious around men because frankly, most of them could overpower us. Now I know what it’s like to be able to defend myself and it is empowering.
While we’re on the subject of women, I’ll be talking about my relationship with my body. To the few men who read this — you can skip these posts. They’re not really for you, and I’m not sure how I feel about you taking a deep dive into what it’s like in this space of my mind. While we’re there, we can chat about what it’s like being in our thirties and all the pressure society puts on us. I cannot attest to the struggles men face (I can think of several, though), and this blog is all about my own feelings. I assure you that if you feel my posts are lacking in any way, another part of the internet will have the content you are looking for.
I’ll be talking more about love, life in my thirties, and what makes a house a home. There might be some true crime sprinkled in here and there, or romance novel-inspired writing. I know many of you started this journey with me to read funny dating stories, but if you’re reading this, you stayed to see my relationship with Robert blossom into a beautiful marriage. This will be very different than Single in the Suburbs, but hopefully we’ll figure out what I will write about together.
To be a good writer you absolutely need to be honest. Something I seem to have forgotten, though, is that to be a good writer, you need to actually write. We’ll see how everything goes this time around, but welcome back to my corner of the internet. I hope you’ll stick around to chat.
Hi! Who are the ten people who visit this site every day? I was really surprised to see my blog still gets views, despite being super inactive this year.
I’m sitting here with an everything bagel and glass of water, thinking about how fitting it is to have such an unappetizing pair for breakfast. I feel like, as a writer, I should embellish and talk about drinking something more beautiful like a hot cup of coffee — water just doesn’t sound as poetic as the power couple of coffee and a bagel. It’s very 2020 to just be real and not try to make things seem better than they are. This was a very real year, and I have appreciated all the honesty we’ve seen.
2020 has clearly been super weird, with lots of highs and lows. As someone who does have a chronic illness to monitor, I have been conservative with COVID stuff, following the CDC’s guidelines, and embracing *~social distancing~* for what it is. I’ve acquired new hobbies at home, and decided that since cooking and eating go hand in hand, I want to be the best darn cook possible. I even mastered risotto last week, which was a major pain in the butt the first time I tried it.
Let me catch you up to date on where I am now. This year has been busy, despite spending it at home. We sold our house recently, and are full force shopping for a new home. Our dog, Jax, recently had surgery to remove what we now know is a stage 2 low grade mast cell tumor. I seem to have sympathy pains for Jax, as my Eustachian tube is blocked (seriously, tell me how to unclog a blocked Eustachian tube because it is driving me up a wall!) and just won’t go away. Jax has my heart and I would do anything for that pup. I am moving forward now and just doing all the practical things that need to be done for a dog with an issue like this. It’s funny how I can handle my own health problems better than my dog’s, but anyone who has had a pet understands I’m sure.
I turned 30 this year, and despite always saying that I didn’t think 30 seemed old, it feels weird. I can’t write about how I’m a “twentysomething” anymore, and it does feel like a new stage in life. Part of that is probably the nature of laying low this year, though.
2020 was hard, but I am grateful for health of myself and loved ones. Life becomes a lot simpler when you know what it’s like to lose something as basic as your health. It makes it easier to be thankful for little things, and not sweat the small stuff. There is a light at the end of the tunnel, even if it’s still a little ways away, and one day we’re going to remember some of the fonder memories from this year. We’ll remember trying new things to entertain ourselves at home, lots of quality time with a select few loved ones, why it’s important to cherish every moment we have on earth, and finally, that 2020 was the year of figuring out the secret to the perfect banana bread.
I usually do a “word of the year,” along with some small resolutions, but this year I am going to skip doing anything, and continue to take each day as it comes at me. Happy new year, and let’s hope that despite Netflix taking The Office away from us, we can make the most of our circumstances this year. I’m going to go make some coffee now, because it’s all I’ve been able to think about after rambling about my glass of water earlier.
This morning I wrote about how shockingly well I am handling all of this. Tonight, I’m crying about it. I think this is kind of typical of everyone right now.
I’m sick of being stuck inside and am dying to go on a normal date, missing my family and friends, and would love to be able to look forward to the beach this summer — or even just spending some time outside. I am scared for the health and well-being of loved ones and strangers alike. I am dying to go to Trader Joe’s to get my usual favorite snacks, and I don’t want to keep seeing how different life is by watching the news. It all feels like a weird dream. The beginning of this feels so long ago now.
All of this is incredibly confusing. Like, how did we get to a point where people can’t go outside? Anyway, this morning I wrote a much more lighthearted draft, and want to still offer some of that sentiment, even as a comfort to myself right now.
First, I have done the whole quarantine thing before — or at least it felt similar to me. When I first got sick with POTS I could barely sit upright, much less go do my normal activities. I created a new normal that gave me as much joy as I had in my 22 years before getting sick. It wasn’t always easy and I often missed things about having a healthy body, but I was still able to be happy, despite the earth-shattering change. This change was actually even bigger than the pandemic feels because I was so used to being an athlete and out in the world, but literally could not leave the couch or go from floor to floor in the house more than once in a day. Now I at least can stand up to cook, go to the basement to exercise, and play hide and seek with my dog. Lesson one, you can have joy in the face of adversity.
Another thing POTS taught me is that circumstances change. That’s lesson two of learning to deal with a life-shattering change. The first year I was so sick even going to the grocery chore was a difficult to impossible task (read: me lying on the aisle floor until I could stand again without passing out). Over time I was able to run errands. Then I could go out to dinner. Then I worked my way up to doing things like trips with friends or walking around the beautiful city of DC. I still can’t run or anything, but I can walk for an incredibly long time without feeling dizzy, my pain is decreasing astronomically, and I can drive for an hour at a time! I’ve really come a long way. My new normal did keep changing, and I’ve been able to work with it every step of the way. Things change, and even if they’re slower than you’d like, you learn a lot of lessons along the way and can still be joyful.
Finally, the most important thing in life will always be your loved ones. For this I am sure (Insert Nunzio voice here, Robert).
I’ve always known this, but having any kind of health scare definitely changes your outlook. It’s funny because I do definitely think taking things for granted is in our nature. When I was really sick I always thought I would never take little things for granted if I was lucky enough to get better, but sure enough, things like going out on walks with my dog weren’t aren’t appreciated and I haven’t taken advantage of the fact that I can do yoga now. It’s weird being so separated from everyone, and I think this experience will change the way we spend time with others. I hope we are more present and cut more time out of the day to be with people, and take the time out of the year to travel and visit our long distance friends and family.
Anyway, I think we all need to remember that this is going to ultimately be just a blip in our lives if we can all come together and support each other. I pray that we can get things under control sooner rather than later, and that we can all be tough together. I know this isn’t easy, but I feel like it will be similar to my past experience in that we will appreciate more in life, worry less about trivial things, and learn to be joyful through every stage in life. There are a few things I’m incredibly grateful for right now, and I know I’m being looked out for and taken care of, which is really comforting in this strange time. I hope you can find some things you’re thankful for in this transition time, too!
Man, I’m tired. I am having more pain tonight because I’m a huge goof and haven’t taken care of myself the past few days. I’ve been wrapped up in trying to get work done (Have I mentioned on here I have been working from home? I started it in October and it’s been really great) and been slacking on my mobility work. My neck hurts, my shoulders hurt, and the muscles between each of my ribs hurt.
I got POTS over 6 years ago, which means I’ve had chronic pain for most of that time. It’s gotten better and better the more I’ve worked on it and gone to physical therapy, but it’s still freaking weird knowing that if I’m a 2 or a 3 on the pain scale, that one day it will likely spike, even if for a short period of time. I don’t really know what causes all of my flare-ups, but I feel frustrated when I cause them by neglecting taking care of myself. It annoys me that I have to focus on my health so much while still in my 20s, so sometimes I do rebel and take a few days off. I always regret it, but sometimes I just need a break.
One thing always makes me so so happy, though, and that’s dogs! Here are some of my favorite dog pictures from this month. Hopefully they’ll make you smile as much as they do for me.
Here’s my handsome little man at the P-A-R-K.
I took this picture of Macy right before leaving the house. She was all snuggled up and happy in her PJs, and I always think of her as being my little angel.
This picture of Jax isn’t by any means “good,” but it cracks me up because I pulled out a bag of pretzels at 2 in the morning a few weeks ago when I wasn’t feeling well. It was hilarious seeing how quick he was to lunge onto the bed to steal some of my snack. He had been sound asleep on the floor until then.
Luckily, Jax usually sleeps in bed with me when I’m alone. Here is another favorite photo at bedtime. I typically have to shove him to the side a few times in the middle of the night because he likes to hog absolutely everything.
And here’s a throwback gem to my sweet little angel, Gracie. These pictures all make me so happy. :’)
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!).
December 2012
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.
December 9, 2012
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.
I had a bad obsession with Pinkberry for a very long time. The only thing that made me stop going was the fact that they all closed down in our area.
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 made sure to always try new things that were presented to me while I was there… Which included eating some Larvae when a sample was offered to me.
Despite it tasting faintly of cashews, I did NOT like it.
Taking the subway to go out dancing.
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.
Note: it was 100% not worth it, and I am SO happy that I know what my body needs to keep my blood pressure up and don’t faint anymore.
Those were my Halloween nails, haha!
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.
My childhood dog, Gracie, brought me so much joy.
My first time meeting Macy
She brings me so much joy and brought so much healing when I needed it most. She learned a lot of helpful tricks along the way, like taking things from one room to another in our house. We still send her around with little notes!
Such a sweet little angel. ❤
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.
I was a little nervous to travel alone, but Southwest Airlines is amazing at checking in on people who need some extra help. The only bad part about my trip was the fact that I felt out of it most of the trip and spilled Cheetos ~all over~ my seat and down the aisle.
It’s crazy noticing now that my chronic pain issues have been going on for more than 4 years now.
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.
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.
All photos credit of DysautonomiaInternational.org. Check it out!
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.
Krista Lauren 