Scary Statistics

October 31, 2018October 31, 2018 ~ kristalauren ~ 9 Comments

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.

Screen Shot 2018-10-31 at 10.51.16 AM — All photos credit of DysautonomiaInternational.org. Check it out!

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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.

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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.

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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.

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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!

Counting Spoons And Stars

July 5, 2018 ~ kristalauren ~ 7 Comments

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

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

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I would switch around a few of these. For example, I think taking a shower and shaving or washing my hair takes more than 2 spoons, but going shopping only takes 3, depending on the task (as long as I don’t have to push a cart or carry a lot). I have always been a really big fan of a nice, hot shower, but I honestly don’t even remember my pre-POTS showers. I don’t remember what it’s like turning the dial to the “H” without knowing that my heart is about to start racing like I’m running a marathon, and allotting some time to lie down after I’m done shampooing. I do remember the days I couldn’t wash my own hair, though. I remember first getting sick and not being able to stand in the shower because I would pass out. I remember sitting down in the bathtub in my pink paisley bikini so my mom could shampoo and condition my hair for me since the room was always spinning around me and I couldn’t stand by myself for more than a few minutes. In hindsight, the way my hair was washed is really similar to the way my dog, Macy, gets her hair washed now. We both just sat there and let someone else do a task we are less than thrilled about, but need to have done. I was 22 years old, had just graduated from college, and could not take care of even my most basic needs.

Despite making slow improvements with POTS, I still always look fine, so people usually cannot tell if I’m having a “good day” or “bad day” just by looking at me. Nobody else can see the way my vision blacks out whenever I stand up too quickly, or when my pain is acting up. Whenever I see someone pop right out of bed when they wake up on television I laugh to myself and think, “That’s so unrealistic!” then I quickly realize that it’s actually most people’s reality. Most people can jump right up from laying down to a standing position and not feel repercussions from their body. I don’t remember ever being able to do that, but logically I know that five years ago I would have been able to. Actually, come to think of it, it probably would have really freaked me out if I couldn’t pop right out of bed all of a sudden!

There are many things that I don’t remember from my pre-POTS life. I don’t remember what it’s like living with a “0” on the pain scale, I don’t remember being able to be low maintenance when traveling or going out with friends, and I don’t remember what it’s like feeling like you’re in the same boat with all your peers. College is so great because even though you are all doing such different things, you are all working toward some sort of career goal. I get sick of explaining what POTS is over and over again, and I hate the look of pity in someone’s eyes after I get done telling them about how even though I am still young, I ended up with a life-changing health condition at the very beginning of my twenties.

There are a lot of things I do remember so well from my old life, though. I remember going outside and finding out it was a beautiful day, so going for a long run. I remember deciding on a whim to train for a half marathon, and bumping up my mileage with ease. My brain remembers going to work and sitting at a computer all day long and all of the projects that I did, but I don’t really remember how it felt. I think about it now and wonder how I was able to do all of that without feeling stiff as a board and paying for it for the rest of the week. I have no idea how I ever survived without a foam roller or physical therapy. Did my body really once not hurt? Why didn’t I take advantage of that more?

I have been blessed, though. The crazy thing about POTS is there isn’t a lot of treatment that helps you get better, other than hard work in the gym (Which is done on the recumbent bike and with tiny hand weights), a good diet, and a great deal of luck. Getting sick has made me learn that there is no doubt in my mind that God does exist, and He has so much power and love to give. I still can’t believe how much more clearly I can think without all of the dizziness and brain fog, and I feel blessed to have good days mixed in with the bad. I actually think that most of the time I am probably on the higher end of the “happy scale” than a lot of twenty-somethings because I have learned to find the joy in the little things in life. I feel happy when I get to meet a new dog, I love being able to go outside for long and leisurely walks, and I really feel at peace every night when I look up at the stars. It’s really amazing to realize that even with so many planets and heavenly bodies so far away, my Creator still loves and cares about me. I always feel small when I think about how far away the stars are and how many other people there are in the world, but it really is amazing that God has a plan for each and every one of our intricately detailed lives.

I still don’t know why I got POTS or what my life is going to look like with it moving forward, but I am going to continue to share my journey and what I’ve learned with people, and I am going to keep working toward a more normal life. I’ve used a few spoons writing this and am getting dizzy because I really need a salty lunch, but I will be writing about The Spoon Theory again on my blog in the next week or so. I want you all to know what I use my spoons on, and how stealing a spoon from another day can be great because I am able to enjoy outings with friends, but it makes playing catch-up difficult the very next day. I, as well as all my other spoonie friends, just want to feel like everyone in life just gets it. That won’t happen unless we begin speaking out about our chronic illnesses, though, so I am going to continue being vocal about what life looks like on the inside for someone with a chronic illness.

Please take a minute to read this article by Christine Miserando about how she created The Spoon Theory. It is explained so darn well here, and I — along with every other person with a chronic illness — would give anything for people in my life to actually understand what it means to use spoons throughout the day.

Chronically Positive

June 27, 2018 ~ kristalauren ~ Leave a comment

Who all remembers when I had my “Chronically POTSitive” blog?

I initially created it for a class I was taking for my Master’s, but it was also a really fun way to start blogging and connecting to others with chronic illnesses. I have long given up writing on that — this blog is where my heart lies — but I have kept the mindset of being chronically positive. I’m not going to link any of that content because I wrote much of it lying dizzily on our living room couch so I’m a bit afraid of the errors that are surely scattered throughout my posts, but that is what initially made my heart feel open to the world and to share so much of my journey with others.

There are a few reasons I choose to be an optimist, and always try to look at the glass as being half full, rather than half empty. First, I’ve found that it’s actually a lot easier living as an optimist. Knowing that life is going to get better, even if it’s not necessarily there yet is such a powerful thing. I strongly believe in the power of positive thinking, and I think dreamers often get some of their wildest desires by putting them out into the world and fighting for what they want. Second, it is far less exhausting to be excited about the future than dreading it. Whether it’s with a job, dating, health, or anything that affects your quality of life, it’s always a lot easier getting through a bad day knowing that things will eventually take a turn for the better — even if it’s not that same week or year.

I got sick with POTS almost 5 years ago now, and I still remember my parents telling me every single day that I was going to get better and I would be able to walk around without fainting again, spend time out with friends, and live a beautifully joyful life. My dad told me that things would get better every single day when he drove me to the gym to do my 20 minutes on the recumbent bike after his long work day in the city. My mom hugged me while I cried on the bedroom floor because I was tired of not being able to stand on my own or go to the bathroom in the middle of the night without calling to wake someone up because I might pass out on my way there. We played “Would You Rather” late into the night when I couldn’t sleep because of my heart palpitations and chest pain. I looked forward to our little games despite the circumstances, and we always made it a point to laugh every day, even when I felt like the world was crashing and burning around me. I got sick with POTS overnight with no warning, but despite being bedridden and feeling sick 24/7, we still managed to find joy in my life.

Glasses are used to be filled and emptied. You end some days with a completely dry glass, but remembering that you can still fill it with something even better is so important to continue moving forward. Let’s say you have a full glass of lukewarm water that gets knocked over and empties completely on the floor. It sucks that you don’t have a drink anymore, but now you have room to fill it with something better — like chocolate milk or iced tea. Getting rid of the water made room for an upgrade. Sometimes life isn’t fair and doesn’t go the way you hope it will. Your heart gets broken by the wrong guy and it feels like the end of the world until you learn you’re better off without him. Then you meet the love of your life, and you realize that getting dumped was actually the best thing that ever happened to you, even though your heart hurt terribly at the time, because it allowed you to find the one person you never want to live without.

POTS was heartbreaking, scary, and life-changing. My arms hurt while I am writing this, and I wish I could sit at my computer and pour out my heart on paper all day long. I want to travel without feeling like I’m high-maintenance, I want to run again, and I want to chase the dreams I had in college still without having to change them because of my illness. If I hadn’t gotten sick with POTS, though, there’s no way I would have really met Robert. I would have moved to New York City and continued to write for a magazine, and I wouldn’t have been in the area before he went on his deployment. I would have missed out on so many great memories with my family, and I would never have seen just how many people love and care about me. My heart may not work like a normal one anymore, but it’s grown several sizes larger to hold all the love that is in my life. People are absolutely the most important thing to me, and getting to hold so many hearts close to mine means infinitely more to me than any job or amount of money ever could.

God works in mysterious ways, and although I am not sure why He hasn’t decided to give me back the body I used to have, I still have faith that I will have a joyful and fulfilling life. As my sweet friend Sophia often said, “The best is yet to come.”

After I wrote this post I happened to stumble upon this article by Forbes. Optimism is a life changer. Create it one step at a time and I promise you won’t be sorry.

The ER And My Heroes

March 20, 2018March 20, 2018 ~ kristalauren ~ 14 Comments

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.

Screen Shot 2018-03-20 at 9.43.00 PM.png — My Instagram story that night. Yikes!

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.

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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.

Mom snapped an update for everyone when I was all taken care of and on my second IV.

One hilarious thing I noticed was that I was in such a dazed state when we left the house that I put a sock on inside-out. Oops.

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!

b l a c k o u t.

February 17, 2017February 17, 2017 ~ kristalauren ~ 2 Comments

Vrrrroosh.

My pulse is racing and I feel the floor beneath my bare feet become colder, harder.

Have you ever fainted before? It’s scary.

I’ve become kind of a pro at passing out, mainly because I have had a lot of close calls, rather than eating the floor on a regular basis. Ever since I got sick with POTS three-and-a-half years ago I’ve learned what it’s like to faint.

My heart can’t stop. It keeps speeding up and feels like I’m going downhill in a car and my brakes just failed. Instead of being able to pull an emergency brake or slow the car’s roll, it speeds up at a terrifyingly alarming speed.

Thudthudthudthud.

Shit. I crouch to the ground as soon as my brain catches up to the rest of my body and realizes that I am going down, whether I want to or not.

This is what I’ve trained for.

My body has been trained for fainting. I have done it so many times that I know how to respond. Everything always happens so fast. Racing. Dizzy. Blackout. Nausea. Sweating. Falling. Ground — always in that order.

Ground.

As soon as I am down on the ground I feel the cold tile behind me. I’m cold and wet, but don’t really notice until my hand slips. The bath was a bad idea. It helps with the pain, but my heart can’t handle the heat. I feel around behind me, blind, just to be sure my head won’t hit the hard floor when I lie down in my postural position. I close my eyes and brace myself. There’s no change in my vision yet, but I hope it comes back soon, as my spatial awareness isn’t so great. This can pose for a dangerous problem when I’m on hard ground. Usually I black out on the plush carpet when I get out of bed too fast, but sometimes it happens in places that are a lot scarier than that.

screen-shot-2017-02-17-at-6-44-08-pm — This is what blacking out looks like. It starts off looking like a crackly television, then turns to this.

My hands slide slowly behind my body as I sit on the floor and ease the rest of myself to the ground. I close my eyes, praying I won’t vomit and reminding myself to take deep breaths until it’s all over. I don’t know if one ever really throws up when they’re about to faint, as it’s never happened to me, but it always feels like I will.

Ten seconds go by. Twenty. An hour?

It feels like my time on the ground before my vision finally starts turning slightly colorful and blurry again is lasting a lifetime, though I know it couldn’t be more than thirty seconds. First it’s as if I’m wearing high prescription glasses that my 20/20 vision isn’t used to. Then everything gradually comes in to focus. I can finally see again and the blood rushes back to my brain.

Stupid, stupid, I think to myself as I realize what I had done. The water in the bathtub was too warm for a POTS patient, and I stood up way too quickly when I made my move to get a razor. I had hurt myself on accident by taking a high risk for a minimal reward. I hate not being able to shave my legs in the shower (because of the postural change that occurs when I do), and all I wanted was to have a smooth finish after my bath. I should have known better than to stand up quickly from a warm bath, but I want so badly to be normal again and not to think about every little move I make and how it’s going to affect me for the rest of the week.

Sleep.

Any time I have a close call with my heart acting up it makes me incredibly tired.

As soon as I gather the right amount of energy to safely stand up, I shut my eyes tightly and push lightly with my hands to lift the rest of my body up. I throw on a robe — not bothering to dry off — and walk with a blank mind and body into my bedroom and ease into my warm, soft bed.

Soon I am out again, but this time the darkness isn’t scary — it’s peaceful. My brain feels like it can’t function again because it needs rest, but that’s okay. I’m finally safe; I’m in the least likely place for my body to attack itself again.