National Dysautonomia Awareness Month

Hi guys. First and foremost, I want to apologize for not having uploaded my first post on my birthday as originally stated. I was blessed to have spent my birthday weekend in Red River, New Mexico, with little-to-no service and not a care in the world. It was by far the best birthday I’ve had to date, and there’s a rather large chance you’ll someday be back here reading about it. But for now, I’d like to focus on the purpose of this blog, which is to educate and raise awareness on behalf of Dysautonomia and its’ associated conditions, one of which I suffered from for over 10 years before receiving a proper and correct diagnosis.

With that being said, October is National Dysautonomia Awareness Month, so what better time than now to finally share my story of how I managed to survive over 10 years with a misdiagnosed condition, leaving me to suffer from a multitude of wide-ranging and debilitating symptoms.

But before getting down to the nitty-gritty and sharing the events and details of my life with you, I’d like to take the opportunity to drop some bombs of knowledge on those of you who may not fully understand or at all know what Dysautonomia is. Dysautonomia is not a single disorder, it’s an umbrella term used to describe a number of different conditions that are affected or caused due to dysfunction, or complete failure, of the autonomic nervous system. The autonomic nervous system is responsible for controlling the majority of all involuntary bodily functions, such as heart rate, blood pressure, body temperature and perspiration, just to name a few.

The onset of my symptoms began in 8th grade, shortly after following a 6-week time period of being ill and bedridden due to viral meningitis. After that, my body never quite felt the same. Instead, my symptoms continued to progress and worsen over time, to the point that it not only stole my youth, but also continued to control every aspect of my life. I was always in and out of the doctor's office, constantly missing school and not ever feeling well enough to participate in my most favorite hobbies, such as power tumbling and competitive cheerleading, let alone anything else. I became widely known as a hypochondriac to almost everyone in my life: my doctors, my friends, my classmates, my teachers and even my own family. But looking back now and considering the circumstances and frequency of which I complained, I still can’t blame them for believing so.

There are numerous forms of Dysautonomia, almost all of which are invisible to the eye and share a number of the same symptoms, making it incredibly difficult for doctors to pinpoint and diagnosis. It was frustrating enough that I couldn't understand why my body felt and functioned the way it did, let alone attempting to explain it to others. I was referred to several specialists, all of which either came up with nothing or chalked it up to psychological disorders such as anxiety, depression, ADD and OCD. I spent so much time working with psychiatrists, participating in therapy and taking every drug known to man-kind in hopes it would treat or at least relieve the outrageous amount of symptoms I had been experiencing. Yet, nothing ever truly worked. In fact, some of the medications I was being advised to take were exacerbating the symptoms of my misdiagnosed condition, ultimately making it worse and that much harder to treat and diagnose.

I grew up very well educated, athletic and in great shape, with a very sociable personality and a strong sense of who I was and wanted to be. I knew what it felt like for my body to feel “normal” and it became incredibly detrimental to my mental stability as I was left confused and frustrated in regards to not understanding why my body was functioning the way it was. It wasn’t until February of 2015, at my best friend’s wedding, that I experienced by far the most violent and severe flare up to date. I had experienced one too many of these situations, whether it was out at a public event or alone in the comfort of my home. I had been told my entire life that the symptoms I was suffering from were all psychologically induced. But to me, it just wasn’t adding up. It was such a beautiful and happy weekend, at a secluded and relaxing cabin in Southeast Oklahoma, with no reason as to why I should have been or felt anxious.

So I, like the majority of most Dysautonomia patients, went to the Internet to begin my search of what might possibly be the cause of such life-altering symptoms. It didn’t take long for me to find and familiarize myself with Postural Orthostatic Tachycardia Syndrome, most commonly referred to as POTS. The more I read, the more I wholeheartedly believed that this was the condition I had been suffering from for over ten years. I was so confident that I self diagnosed myself and further continued searching for a doctor or specialist that could either verify or deny my suspicion. Within six months of that, my self-diagnosis had been confirmed by not one, not two, but three different doctors. Due to the lack of knowledge and amount of wide-ranging symptoms, it can be very difficult to correctly diagnose. As a relatively new disease, POTS is still considered as somewhat of a phenomenon to most doctors, so much that there are many who still refuse to acknowledge or believe the condition is at all real.

So, here I am to share my story and hopefully provide some insight on such a debilitating condition that is not only very much real, but can be forever life-altering if not correctly diagnosed. For those of you I grew up with, I hope this provides somewhat of a better explanation as to who I was and what I was going through. With that being said, I would also like to take this opportunity to clear up the rumor that I was shitfaced drunk at my high school graduation. I was not at all drunk: I was 100% sober. What you witnessed was a full fledge POTS episode, and that is why I collapsed to the ground, profusely sweating and violently vomiting.

Luckily, I grew up loving to write. I found from a very young age that my words sounded better coming from my hands than they did my mouth, so I'm thankful for having documented basically my entire life. I can't say I'm 100% proud of everything in my past, but I sure as shit don't (and won't ever) regret it. Everything I've ever gone through has made me who I am today, and I'm proud of the person I've become. But before releasing anything else, I would like to thank the select handful of people who have helped get me where I am today.

Mom (Melinda Colson) – There will never be enough words in the world to describe just how grateful I am for you. As my Mother and having raised me alone, you have watched this debilitating and life-altering condition take over and spiral out of control since I was fourteen years old. You have seen every aspect in which it has affected me, and as hard as it was to watch me suffer, I can’t thank you enough for having never given up on me. From homeschooling and transferring high schools to my most violent episodes that left me helpless on the bathroom floor, you were always there to take care of me. For as frequently as I complained about my overwhelming amount of symptoms, I can’t imagine how insanely frustrating (and annoying) that must have been for you. Far before my suspicion and official diagnosis, you were just as confused and oblivious as me, yet you never doubted or stopped supporting me. You always knew and understood my frustration, and that all I wanted in life was to feel like myself again. You went out of your way to attend every single doctors appointment that led to my official diagnosis, as well as every pertinent one to this day. I’ve recently been told how brave I am to be facing such a significant health condition with the amount of grace that I have. I always kindly smile, but in my head I’m like, “grace? I run into walls on the daily and have the mouth of Kanye West and Nicki Minaj, combined. There is nothing graceful about me.” But any bravery or grace I may have, I without a doubt got from you. As Beyoncé once sung, you are my saving grace, as well as the most phenomenal, strong and hard working woman I know. Thank you for never giving up on me and forever putting up with my batshit crazy shenanigans. I promise to never again take psychedelic drugs, or at least not call you while I’m on them. (Yes, this really happened… Bless my Mother’s heart) You’re the real MVP.

Dr. Sumeeta Nanda – As my OB/GYN (and now Primary Care Physican), you have gone above and beyond in regards to my health, both physically and mentally. Most Dysautonomia patients spend years fighting for a diagnosis, as most doctors are either uneducated on the condition or refuse to believe that the condition even exists. But sometimes, all it takes is one doctor to make a difference. Thank you for being that doctor for me. Thank you for believing me. Thank you for ensuring that I was not going crazy, and that the symptoms and episodes I had been experiencing were very much real. Thank you for arranging further appointments and procedures to confirm our assumption, as well as keeping me mentally and physically stable to this day. You saved my life, and I will forever be grateful for that.

Natalie Bass – Wow, where to even begin? I think it goes without saying that I don’t know what I’d do or who I’d be without you. For the past ten years, you have been the most consistent part of my life. From traveling non-stop and living out of our suitcases, to the unbelievable opportunities and life changing events, you were always by my side. With that being said, you have seen and witnessed nearly every episode, breakdown and health issue that led to my diagnosis. I can’t even count the amount of times in which I bailed on you at an event or concert due to the severity of my symptoms. Or the amount of times I fell ill while on the road together. But as the kind hearted, genuine and caring person you are and have always been, you never gave up on me. You never let my health stop me from living my life. And looking back now, I realize just how grateful I am for that. We’ve been through hell and back together, and there’s no one in the world that will ever know me quite like you do. Watching you grow into the woman, wife and mother you are today has by far been one of the greatest pleasures of my life. Thank you for sticking by me all these years, for always loving and supporting me, and for dragging me out of the dark when there was no light left. Most importantly, thank you and Blake for the blessing of Dylan and the role I get to have in her life. She’s the most beautiful, breathtaking soul I’ve ever met, and I will forever protect and love her as if she’s my own. Life with you has been one hell of a ride, and I’m happy to say there’s nowhere to go but up. You are the Ann to my Leslie, my ride or die, copilot and music controller, my soul sister and my best friend. You are my sanity, and I love you so very much.

Granny – Thank you for being the most graceful, loving and understanding woman I know. It took a very long time for me to make peace with my condition, almost as long as it took to diagnosis. Yet, regardless of time or physical distance between us, you’ve remained just as understanding and supportive of me as the day I was born. I love you so much, and I’m so proud to be a Colson.