Scary Statistics

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.

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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:

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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. 

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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!

The ER And My Heroes

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.

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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.

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

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.

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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.