What is POTS?
I struggled with POTS a lot as a teen, and took midodrine three times a day at 10mg a pill. Morning, noon, and night. I needed to have a tilt table test at Strong Memorial Hospital in Rochester NY, to get midodrine prescribed to me by an adult cardiologist, back in highschool. I had a 504, because I was sick in highschool, and I am not ashamed of it. I looked blue or grey sometimes, or pale as a ghost. You get up and do the best you can, that’s all that matters. Good days, bad days, and attainable goals. One thing at a time, until everything falls into place. That pill stopped me from fainting and gave me a normal life again, so I can run a lot. Run and raise a lot of money for lots of different charities, depending on the day. Losing it all, and getting it back made me so much faster. I did a lot of things early, because I felt like I was running out of time, and then I had to make up for lost time. My run book is going to have a lot about overcoming my health obstacles, becoming a marathon runner from a strong xc runner, and drinking a lot of water. So happy that I feel better nowadays! 45/20 was my all time low in life (Is that my opening sentence for my autobiography of myself?).
https://rarediseases.info.nih.gov/diseases/9597/postural-orthostatic-tachycardia-syndrome
http://www.dysautonomiainternational.org/page.php?ID=30
https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots
https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots
I went through everything that I did, and somehow figured out how to run 26.2 miles very fast.
I wore a monitor like this, for six months, and everytime I took a shower it would beep like I was coding. The telemetry reading company would call the house to make sure I was just in the shower, and after a while I knew to call them whenever I took the monitor off, so there was no panic. I used mineral oil to take my electrodes off, everyday. Still, I am unsure if what my heart did or monitoring it was worse. My skin became so raw and bled sometimes, the oil helped, and my cardiologist started giving me the pediatric electrodes that were thin, clear and had animal patterns of ducks or rabbits. It hurt too much to put the electrodes back on my raw skin sometimes, but I had to, as I had run out of new places after a while. My chest also hurt too much, and so did my legs which is why I could not move, even if I could have stood without fainting. Nothing helped my pain, and I was in so much pain all the time; beyond tears(CBD oil did not exist back then, and I was never given pain meds). Pain medication lowers your heart rate, which is why I could not have it, my blood pressure and heart rate dropped very low. There was a touch screen, where I plugged in my symptoms when my heart did certain things, it looks almost like an iphone. One time a girl giving me an EKG at Strong Hospital started crying on top of me, telling me that she was so upset about my age and my health issues, it was an upsetting day.
My sisters were in college, my friends called me ‘gross’ and never came over to visit, my fat chihuahua puppy and porcelain dolls were my only friends sometimes. Of course, no one ever admitted to bullying me and I did not want to destroy all their lives over it just because I could have, but my morbidly obese chihuahua puppy was always happy to sleep on my blankets snuggling away my heartbreak. The only power move I ever had my cool aunt make, was getting the student doctors away from me, especially boys. I enjoyed looking at my pretty doll when I could not move, brushed her hair and tied her satin ribbon into the perfect bow, well into my teenage years whilst being sick. The porcelain dolls in my room not only have pretty hair and ribbon, but also a built in music box on their backs. It would have been too flashy to bring them to college with me, so I let my nieces play with the porcelain dolls and take my spot at the tea party; sometimes I still have the luxury of playing with the girls and the dolls together. My chihuahuas actually have special dresses to play tea party, with the porcelain dolls and my nieces; all of us girls just adore playing tea party.
My least favorite thing was taking off my top and having echocardiograms, for really long times, everything exposed for the nurse and student doctors to see. That is the reason I think it is so cool that they make custom medical gowns, nowadays. It would have been nice to have something soft and my own, with all my wires, electrodes, and sonograms of my heart happening, or being strapped to the tilt table test. You need a soft bathrobe, gown, soft hoodie, and nice socks when you’re sick; that’s for sure. My medicine made me cold on the inside and have chills, blankets did not help, but I pretended that they did. Heating pads and blankets, soft fabric items, to make me feel comfortable were a whole thing. If I know someone who is sick, I always give them an oversized soft sweater to wear, open in the front, because that is all I wanted to wear whilst being sick. Being cold was like torture, with my pain, that’s why I like the sauna, and sitting outside in the sun every chance to this day. My skin was purple/blue/grey, freezing, and being pulled off until raw from using all those electrodes, I went through a lot. Being freezing and blue back then, presently, I truly appreciate not being in pain or cold after everything that I went through with my heart. All of this happened to me because of a virus, it came out when I collapsed during lacrosse practice suddenly, took a trip to the emergency room in an ambulance.
A cool aunt of mine, needed to make a phone call so I would never have student doctors around me ever; I snapped into a snob, and it instantly fixed anything inappropriate in my life. Med students looking at my boobs during echos is the reason I had to switch cardiologists. After a while of being sick, I felt like a body and I needed a therapist to tell me that I was not a body, and everything would heal someday. Honestly, after going through such living hell with my heart, I have no idea how I ended up being an elite marathon runner, but I’ll take it as progress working with my body! At least, I could hide all those wires under my shirt, and put the monitor in my bra. That’s why I always wear sports bras, that’s all I had when this all went down. That’s why I wear sweaters all the time, it’s all I was ever comfortable in. It was a very big deal, all these heart things happened in my life, because I was very sick, I really could have died from health obstacles I faced. Those health obstacles I faced in the past, motivated me to fundraise through running events, and help others who are enduring health obstacles achieve a happy life. I have this website so everyone going through what I did, or something similar, can look at how I can run entire marathons now, it all worked out later on; there is an attainable goal for everyone. I do these interviews with so many, because I want to inspire readers, and relate in life; you’re never alone. I felt lonely, and I want to be inclusive so somebody else does not feel lonely like I did. Throwing myself out there, trying to help, because I can. In a way, I went from not being able to stand up and walk, to being an elite marathon runner, I worked hard for that progress in this lifetime.
One of my best friends from college, Emma, actually went through a medical issue similar. We went through funny stages together, debating about whether or not we wanted to talk about our medical history or act like it literally never happened. Both of us were back and forth about it, mutually. Sometimes, our phases were conflicting, and it ended up we needed to have it out in the open all the time; we did in fact have medical conditions. This is not something to cover up, it’s something to talk about and accept, even after you feel completely healed. Never feel like it’s something to cover up, and act like never happened, we even told our boyfriends too. Be proud, because you are a stronger person from overcoming all the health obstacles. Discovering there are no secrets, is literally the reason I have had my essay on this blog nonstop for almost ten years! However, there are times that I go undercover, and everyone is shocked when I reveal my truth. Now, I run fast as if all my medical problems literally never happened, and no one knows how I do it.
The only time I was weird in college, was when they had medical bracelets to enter Spring Fling, I was not in a state of mind after everything I went through to wear a hospital bracelet on my wrist to a dance. Just, because I went through trauma when I was sick, and I don’t mix business and pleasure. My friends brought me to a movie, God’s Not Dead, and we ate an entire tub of popcorn, instead. It was really nice of them to do that for me, because I had an embarrassing panic attack in front of all the cool kids, and none of us were popular after that. Just kidding, everyone’s popular. There was also an issue of people reading my diary, getting into my laptop, and looking at my permanent record with transcripts and financial information. I wish I commuted to school and never talked to anyone at one point, buy a safe for college because there is nothing you can do if someone steals all the cash in your purse. One time, someone stole my marathon packet in my mailbox and never gave to back to me, probably sold it to someone to run the race or kept it to be funny. That school sure did have me screaming out of horror at times, but that is how you find true friends. Like when I became elevator buddies, whilst on crutches with a stress fracture, and my friend who was also injured always took the same elevator to class on the second floor freshman year; I made all the other girls in school jealous they weren’t in the elevator, because he was more popular than me. They should have had a cooler theme for the party, like making mannequins become married to each other in a lodge or something. Then, I would have gone to the party and not a movie, upon cooling off from a panic attack, being told to wear that bracelet.
I get to have all my cliché power songs, smile like all the pop stars in these videos when I run marathons, and eat cupcakes!