Day four of the Teddy times
How nice of Pie was is to take my third day? I was already tired of hearing myself write. I wanted to start off by saying how much I miss and love her, she makes me a far, far better person than I am on my own. If you haven’t noticed by now, she’s genuinely kind and her humor is off the charts. So you are all pretty blessed to get to read posts by her : )
I wanted to talk to you about something important. World changing important. The POTS online community and what POTS people are doing to expand awareness. I stumbled across an article a while ago that made me smile, how a horse helped a POTS girl be able to start on her road to recovery.
This story made me happy because I love my horse so much, and he has definitely brightened my life considerable. I wouldn’t attribute my recovery to him, just because I tend to become overly athletic when we ride and exert myself. Roping does that, it makes me way too competitive.
This is Raider, I have better pictures but this is the best I could scrounge up on my latop. Isn’t he a handsome brute? He knows it too, so I make sure to braid his forelock in retaliation. He’s incredibly intelligent and likes to smash me into trees and the like whenever he gets the chance. Just wanted to show you a person (he totally is) that is responsible for another piece of my heart.
But back to business. Inspiration
Everyone has something that makes them feel like they have a purpose. Mine is writing and thinking, but each person’s is different. I wanted to show you how people are using their gifts and passions to bring awareness to our syndrome. People need to know about POTS. They need to know how to feel for people that are going through it, and how to help. Ignorance is not their fault, it’s ours. We have a responsibility to be more compassionate people after going through what we have and helping those that are going where we have already gone.
One thing that is really easy to do is become a member of the POTS community on the web. Most people have Facebook profiles, and liking POTS pages are a good way to connect with other people. Don’t worry, people aren’t going to think that you’re a pothead. They might even click on the page itself. Some good ones that I’m a part of are:
Dysautonomia: Postural Orthostatic Tachycardia Syndrome (POTS)
Change In Life With Postural Orthostatic Tachycardia Syndrome
There’s also a kids one. They’re a great place to share how you are working to get better, and how to help other people. People often ask questions because they want to understand their diagnosis (or that of their child’s) better. This is a tangible way to help people.
I thought about being a research doctor at the Mayo clinic for awhile, but realized that my talents lay elsewhere. I still think that it’s an awesome way to participate in finding cures and diagnosing people (the first step to healing). So if any of you are thinking about becoming doctors when you’re older, you should think about it!
Oh, if anyone ever asks you what’s wrong with you, I wanted to give you some resources to direct them to.
http://www.huffingtonpost.com/barbara-hannah-grufferman/postural-orthostatic-tachycardia-syndrome_b_1019879.html?ref=fb&src=sp&comm_ref=false#sb=2094337,b=facebook POTS was in the Huffington Post, how cool is that???
http://www.nytimes.com/2011/10/18/health/18brody.html?_r=1&emc=eta1 And the New York Times
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf This is an awesome response to explain why you can’t always hang out with people even though you look “fine”. Plus, it’s sort of an intimate and tender piece. It makes you step outside of yourself and feel as someone who is ill does.
This is kind of embarrassing, but I actually wrote an essay about The Misses Pots, and what we’re trying to accomplish. There’s a contest for “Social Innovators” that Forbes and Harvard started. Gah I feel pretentious…. but I thought any opportunity to spread awareness is a good thing. If you would like to read it, I enclosed it below. I don’t expect to win, or even place. But maybe someone will read it and be touched by it. That’s what I hope for at any rate.
Social change begins when the ache of injustice is finally realized. My change is small and ignoble, but important nonetheless. It is ignoble because I have felt the need for it myself; it is not done for a friend or companion. I now work for those others because I understand what emptiness they dwell in. I was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) when I was 17. It is a serious illness that wrecks havoc upon your autonomic nervous system (which controls your heart, blood vessels, everything that you consciously do not). My diagnosis led to the diagnosis of my little sister who had been seriously ill and undiagnosed for five years. Nobody talks about this syndrome because it was unknown until about ten years ago. This makes little sense because it affects up to one out of ever hundred teenagers. How can it affect so many and simultaneously so few? The symptoms are misleading because it appears to impact a number of seemingly irrelevant body parts. To be dizzy, have a racing heart, and numb extremities, is completely mind boggling to the average teenager. But when this happens to you every day, combing with crippling fatigue, you begin to wonder if it is all in your head. This is an invisible disease because no one can see your heart or how your hands tremble. You are told that all teenagers are tired. On paper you are healthy because no blood test can properly show what your nervous system is trying to tell you. This syndrome affects mostly high achieving females. I was very fortunate because I had a supportive family that believed me when I told them something was wrong.
Not only did they believe me, I also had a little sister that was going through the same thing. We supported each other in our unconventional medicine and workout regimes. We teased each other when we had to drink noxious liquids to increase our sodium intake. Together, we made the best of it. As we began to recover last year (a 2-5 year process, sometime much longer), we started a blog. There are very few bloggers out there that talk about POTS. And when they do address the issue, they can only convey the crippling depression that the syndrome has reduced them to under an onslaught of symptoms. We decided to do something different. We write about the happiness we find in every day life. We blog about the popsicles we make out of pickle juice for the salt, and the rainbow socks we wear to cover our ugly anti-embolism stockings. Our name is The Misses POTS, whimsically named after the Disney character in Beauty and the Beast. Our goal is to bring awareness and foster a sense of community on the internet with others that are struggling through this. We know we are not the only teenage girls dealing with this problem. There are others searching for a sense that someone is going through the same thing. Our hope is that this will grow into a movement (not just our blog, but together with every other writer who discusses invisible illnesses), that together we can educate the public and support those going through this alone. This does not affect just us. It affects families. It affected my mother as she watched both her daughters wither away for no reason. It affects the siblings that are suddenly neglected because their parents are frantic with worry for their sister or brother. It affects all of those cursed with compassion because they know that chance alone separates the healthy from the sick. Change will not occur unless we support one another. My sister and I are going to be success stories. We are not our syndromes and neither is any other POTS kid. Maybe we are a little too tired to start a marathon for Postural Orthostatic Tachycardia like the Susan G. Komen movement. But with our laptops, we can change the world sitting down.
If you find a typo, don’t tell me. I don’t want to know! And the picture above is the gelaskin I use for my ipod, kinda sorta love it. I was inspired to do something about this because the creator of “To Write Love On Her Arms” came to my university and gave a talk. I just suddenly realized that I could do something. That it wasn’t impossible, and that The Misses Pots was trying to accomplish something. Why do we hide our illness? Why do we lie and say it’s not that big of a deal? Why can people run marathons for cancer (which is awesome, don’t get me wrong), but we can’t be bothered to support ourselves? If you’re interested in the speech I heard, it was a lot like their Vision page on their website, except way more inspiring and charismatic
So today was kind of packed with information. But I think that’s ok once in awhile. I think it’s ok to think that we’re worthy of accomplishing something, and having dreams and ambitions. That we could help someone, even if it seems simple. How do you guys think we should help? I personally think we should band together and support all invisible illnesses, mental or physical. Because it’s important. Because you’re important. So that’s all I have to say. Thanks for reading! Tomorrow won’t be as heavy, I promise.