Month: January 2014

The Faces of Dysautonomia

I am a hopeful dreamer and a strong believer. I am an advocate, a supporter, a fighter, an awareness raiser. I am not defined by any of my struggles, rather strengthened by them. I am filled with faith and uniquely created. I strive for equality and stand for others. I am Merideth and I am a Face of Dysautonomia. As my project Support The Potsies comes to a close I can’t help but plan for my next project. I’m more than excited to introduce to you ‘The Faces of Dysautonomia’ an effort to raise awarennes and acceptance for Dysautonomia. Dysautonomia is any malfunction in the autonomic nervous system. As there is no exact number of how many people suffer from Dysautonomia it is estimated likely in the tens of millions. With that being said there is also no cure…. With ‘The Faces of Dysautonomia’  I am excited and hopeful that it will provide information, stories, and eventually provide you with the opportunity to help make a difference for one if not a handful of fighters. As the project is not fully planned out yet but is somewhat outlined. Every week a different person with Dysautonomia will be featured on this blog. As you read about the featured person you will learn who they are as a person, moreover not how Dysautonomia has defined them but how they’ve learned to fight it. It will give you an insight into what life is like for them and how they’ve turned their fight into something beautiful. As each person is featured they will be added onto a collage/canvas. I hope that at the end of the project it will have turned into something wonderful and you will have been able to connect to at least one of these amazing people. A fund will be set up where you can donate and you will receive a ‘I support the Faces of Dysautonomia’ wristband. As many of you know raising awareness has become a big part of my life and I’m eager to help out and make a difference in any way I can. I’m excited to start this project and look forward to bringing it to you early February.

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I find “flawless” to be such an ugly word.

After living in a body for the past year that seems to have a mind of it’s own I’ve learned self worth and value more than I ever thought I would. I’ve learned how to be confident. I’ve learned how to be strong. Most importantly I’ve learned to value others. Some of the most self conscious people on this earth are those with Invisible Illnesses. They struggle with worry of being accepted by the “normies”. They strive to feel beautiful in the body of theirs that seems to be constantly failing them. And they bear the weight of knowing they aren’t seen like everyone else in someones eyes. I’ve learned over the past year that an illness can only define you if you let it. When I started my blog I thought I was insane for calling it “I have Postural Orthostatic Tachycardia Syndrome” talk about defining me huh? However I’ve learned better than I ever will that although I do have POTS it will never be who I am. I was born Merideth and always will be Merideth. I often struggle with accepting the fact that it is indeed a part of me as it more than often feels as if it’s consuming my life but then I have to look in the mirror and tell my self how stupid that is. In the mirror there is a girl staring back at me and that girl isn’t POTS but is indeed me, Merideth. It’s hard to find people that will accept you as that and who are able to look past your illness and it’s a shame that it is that way but that is the world we live in. I look at all the amazing people I’ve met this past year with invisible illnesses and my jaw drops in awe as I realize how truly beautiful they are. I find beauty in the way you deal with what you’ve been handed in life. I wish I could tell you about each and everyone of them but I’m afraid I’d be here for eons as I have so much to say about them, I’m also afraid my fingers would fall off from typing! So like I said these are some of the most beautiful people; feeding tubes, scars, lost hair, ports, wheelchairs, and all. They’re beautiful. It’s hard to accept yourself when your life has been so altered by an illness. You see yourself as this sort of distant creature, you lose the sort of “connected with your body” feeling, and become this person so lost in what they’ve been living in their whole life. I think that’s what’s the scariest about it all; coping, accepting, and living again. Every day life for someone with an invisible illness is like a whirlwind of it’s own but then you throw in people or what my friend Suzy likes to call “normies” the healthy people that don’t necessarily understand. I will say over and over again I will never expect anyone to understand what it’s like but I will however expect you treat people with respect just as you would anyone else. It’s honestly appauling how gutsy some people can be when it comes to judging others. I’ve never understood how someone who is in fact a human just like everyone else on this earth, no different thinks they are entitled to put someone else down in such a way. I will never stand for bullying but when it comes to bullying others because of an illness that’s when it becomes a big issue. You will never even slightly feel the pain that person goes through, you will never fight their battle, or understand the struggle and it WILL NEVER be okay for you to put someone down because you haven’t even begun to understand. Quite honestly if you’ve ever judged, stared, laughed at, or bullied someone because they are different or have an illness you should be ashamed. I know I’m just a human like you and we all make mistakes but this is a mistake that effects someone in ways you won’t ever know, and could potentially even push that person over the edge. it’s never anyones choice to have an invisible illness so why should it ever be your place to judge them? I’m a huge advocate for awareness and support and always will be. We live in a world where technology is at it’s highest it’s ever been and it’s easier now than it ever has been to bully someone. You can send a text, comment on a picture, and even do it anonymously in a way that person will never know who you are. We live in a world where people are judged everyday for their differences but do you realize that if you and I weren’t different from each other we would all be the same? I find “flawless” to be such an ugly word. What makes you the judge of what is and isn’t flawless? We are gifted with uniqueness; something we should embrace each other for, not judge.What defines Beautiful? What defines Perfect? People who are insecure turn to bullying, People who seek attention, People who want to be noticed. By not feeding them attention or by complimenting them we do in fact kick or rid that negativity. By fighting back with them the tension grows and they realize they’ve gotten to you and only continue to do so. What if we compliment those people instead? What if we change the negativity to positivity, we don’t fight back with nasty words, or harsh judgements but we fire back with love. When you learn to love yourself and accept that people judge because they don’t understand, or are jealous that is when we in fact become happy. When we rid ourselves from being affected by negative words. Might I remind you that a word is a word it’s something spoken, a couple of letters but that word will never amount to anything. That word doesn’t define you, that word doesn’t mean a thing. Just like an illness when we learn to accept it we become these beautiful, these strong, powerful people full of opportunities. By embracing the negativity and changing it into positivity we begin to see a life of opportunity. However when we take those negative words, those stupid letters spoken to heart we stoop to this level of such negative self worth. We begin to believe what is said and the beauty in us begins to fade. The most beautiful part of us is uniqueness. What a boring world this would be if we were all the same. Learn to love yourself and embrace the beauty which does indeed lie in you. 

Dear Dateline,

Dear Dateline,
While sitting here watching your episode on Asthma I can’t help but feel the need to contact you. Asthma fits into the category of Invisible Illnesses, and in that category asthma seems to be one of the tiny ones in the big picture. I myself suffer from an invisible illness called Postural Orthostatic Tachycardia Syndrome,  I’m 15 years old and have had it for over a year now. As my own invisible illness POTS isn’t life threatening, as it doesn’t have a way of being cured but can be treated there still isn’t enough information or education out there for POTS and many other illnesses! I myself went 3 months without being diagnosed and had to leave my state to find a doctor 5 hours away that could actually diagnose me. None of the doctors in my own state were educated enough to understand what I have. Because POTS can be treated doesn’t mean it isn’t dangerous however as it’s main symptom is fainting due to change of heart rate and blood pressure when changing positions, something many of us take for granted. I think if you’re going to broadcast Asthma as one of a deadly illnesses you have to take into consideration all the other illnesses too! Asthma can easily be treated with an inhaler or Nebulizer as my own sister has asthma and I’ve seen and stood by her side and know that with the right treatment and under a doctors supervision it can be controlled. Look at Mitochondrial disease though which keep in mind also falls under the category of Invisible Illnesses and Chronic Illnesses. Mitochondrial Disease kills more kids a year than childhood cancer yet our TV screens are filled with St.Jude and donating money when you merely mention Mito many people don’t even know what it is. Don’t get me wrong Childhood Cancer is awful and needs as much funding as we can get yet we have to keep in mind all these other illnesses that dominate children and change their lives some of which end theirs. As having an invisible illness myself I’ve connected with some of the most amazing people, their humbleness, their ability to wake up every day even though many of them know that this might be the last day they do awake here on earth! Although my Chronic illness isn’t life threatening and does in fact have ways of treatment many of my friends I’ve made in the Invisible Illness community do have life threatening illnesses. For example my friend Michaela (15) who has Gastreoparesis (paralysis of the stomach) her 7 year old brother Tyler is fighting Mito and had his first surgery when he was only 36 HOURS old! As I type this e-mail to you now Tyler is in the hospital.  Every 30 minutes in the US a child is born who will develop Mitochondrial disease by age 10, and most with it don’t even live past their teenage years. So how do you cure it? You can’t. How do you treat it? You can’t. You just have to learn to live with it knowing that in this vast world of medicine their still isn’t a way to fix it. Let’s look at another one Mastocytosis. Take my friend Brynn she’s 20 when asking her to some it up she told me this: “Mastocytosis is deadly because it’s hard to diagnose. Anaphylaxis is one of the most dangerous symptoms. One of the most dangerous parts of Mastocytosis is is it’s unpredictability- patients allergies change from day to day basis, making it nearly impossible to be completely safe in any given environment.”  Let’s consider Fibromyalgia, there’s over 100 different symptoms people can have when experiencing it! Fibromyalgia is it’s defined often as widespread pain that often occurs in all four quadrants of the body! Not one single person can have the same case, and the human body is affected entirely by it; cognitive, physical etc. As talking to my friend Kirsten, who is 23 and currently living with Fibromyalgia she says she went from “a very athletic person, to someone who couldn’t even walk around her own home.” She also says it’s caused her to lose jobs, quit school, and even lose friends.”  Meet my friend Ellen she’s 21 and she has a brain tumor that can’t be removed. She’s had 15 brain surgeries and is undergoing 2 more in the next upcoming months. Every time Ellen gets Meningitis she has to have all the hardware in her head taken out. She’s more prone to meningitis and other illnesses because she has such a fragile immune system! Ellen has even had to relearn how to walk, lots of short term memory problems, speech problems, balance problems, and many more.  So in the big picture I guess I’m emailing you to ask that you realize not only is asthma an invisible illness but so are all of the ones I’ve mentioned above to you plus so many more. You take people with invisible illnesses and you realize that they’ve formed this community. This community of people they can lean on, when faced with an invisible illness you realize that in the blink of an eye your life can be flipped upside down by something going on inside your own body that’s out of your control. You have to learn how to deal and live life everyday in your new body. What’s so amazing about this though is that people have come together to help each other out. To build each other up when so many times they’ve been shut down by doctors, and so many other things. Wether you take this e-mail to heart or not I ask that you realize how much awareness is needed for these other illnesses and that us kids and young adults can only do so much before we have to rely on others to donate/lend a hand to help us fund research, find cures, and in the big scheme of things make a difference for those who will eventually be born into the world of invisible illnesses who will someday face what we would never want to place on others. Many look for attention with their illnesses but few attempt to make a difference and actually set things in motion. Going out and e-mailing all of you at Dateline is indeed a very big shot as I am just one person with a few teamed up behind my back to help make an impact. If nobody makes an attempt to change things then everything will stay as it  is, the same no difference. After starting a fundraiser called Support The Potsies I’ve begun to sell t-shirts to raise money for something called Dysautonomia International that raises money for Dysautonomia a category that POTS fits into. With $450 dollars raised so far I consider it a start as in the medical field it’s not a whole lot but with effort it will someday be a bigger amount providing more research opportunities and treatments! Thank you for taking the time to read this and giving me the chance to voice my opinion as I consider it one of the greatest things we have; opinion it provides us with uniqueness and a difference between each of us. I hope that you take something away from this wether it be big or small and realize that there is a big world full of other deadly illnesses as well that could use just as much awareness if not more. I’ve attached my blog link for further reference on POTS and other things related to it. 

Thanks for your time,
Merideth Brooks