Finally, a diagnosis.

It’s been five weeks since I’ve been officially diagnosed.

Well… five weeks plus years of cycling through doctors, countless blood testing, asthma and allergy tests and specialists, EKG’s, wrong diagnoses and being ignored or dismissed - having been told that my symptoms could be cured by drinking more water and or it’s “just anxiety”. Years of me asking doctor after doctor endless questions, seeking some kind of answer and hoping that someone would finally listen to me. It wasn’t until last fall when I finally met the one doctor who actually listened and gave me some direction at last. I still remember leaving her office, simply elated that I was finally heard. She set me up on a course of more tests and referred me to specialists but with the focus of getting to the root of all that was going on. And here I am, months, years, decades later…with an official diagnoses.

I’ve been officially diagnosed with Familial Dysautonomia and POTS. Dysautonomia - a disorder of my autonomic nervous system (ANS) function. You know, the one in charge of all my involuntary functions like breathing, heart beats, regulating body temperature…just a fun old fashion failure of my sympathetic and parasympathetic parts. Fun times! And POTS - postural orthostatic tachycardia syndrome, a condition that causes my heart to beat faster than normal…when I’m doing anything upright. I like to call this, my cartoon heart.

For years, I’ve suffered from overheating when it’s 35° outside, (overall heat sensitivity and always susceptible to heat stroke), getting dizzy from just standing up or when my heart rate jacks up and constantly struggling with my sleep patterns. The headaches. Ugh, the endless headaches for no reason or the debilitating migraines that come out of no where. And my heart rate, my cartoon heart, well that puppy has been getting up to 187, 192 …just from skiing downhill, hiking up minimal incline, riding my bike down mountains or grinding up minimal elevation. For years I have battled these things and more. For years, I truly believed that every adventure or activity I embarked on was just destined to be a true blue Type II Fun sufferfest. I continued to push myself, continued to climb mountains, trail run, climb multipitches, backcountry skied and mountain biked every chance I could. And somehow, I still love it. I love being in the mountains and seeing what my body can do, but I’ve suffered every time. I don’t think I’ve ever had an adventure where I didn’t suffer or struggle in some regard. It has made me feel inferior and only adds to my trauma/baggage that, clearly, I am “not good enough.” My anxiety becomes crippling at times, stopping me in my tracks or even turning around. I would constantly make up excuses that I was slower than most or that I “didn’t feel good”, or my asthma was acting up, or that I was affected by the heat (which, duh, I was!). I made myself believe that I would never be an athlete, I would never be strong enough, I would never be in shape like my friends, my husband or those I aspired to. I just would have to continue to struggle, try to control my anxiety and hope that my body would someday turn the corner and make my dreams of never suffering come true. And until then, I would fully embrace the pain and suffering every time.

But now, I have reasons why. I have the true reasons why I have been struggling this much, this long. My cardiologist was the one who official diagnosed me with both. At first I was fully triggered by his diagnosis, thinking he was just another jabronie telling me it’s all in my head and to “drink more water.” I broke down and sobbed after that appointment, feeling so anxious and dismissed. Thank god Brett went with me, my voice of reason, helping me sift through the emotions and find the facts. When in reality, he hit the nail right on the head and one of the ways to treat Dysautonomia is indeed to increase your water intake. It took me some time to dive into research and learning more about these disorders for myself, as well as talking at length with my doctor. In the beginning, I came about this understanding very matter of fact. But every once in a while, the emotional impact would hit me like a ton of bricks. So many times in the last few months I have broken down and cried. Mad at myself for not listening to my body and pushing myself no matter what, overcome with emotion that I’m not the problem…it’s my nervous system that’s the drama, not me. The emotional side of acceptance ebbs and flows in me still, weighing heavy on me at times, not allowing myself grace. However, there are times in which acceptance of it all engulfs me and determination takes hold. Knowledge is power, after all. And I finally have the answers and knowledge I need to move forward.

There is no cure for either of these disorders but there is a way to control it all. After meeting with my cardiologist and my ND, I was set out on a course to build my tool kit to right my ANS and try to maintain it all. And boy howdy, it’s work. But I am here for it all. I’m actually sitting here writing this post from a medical center, getting my second infusion - an eight week prescription series of an electrolyte and hydration cocktail. I’ve gotten to work over the past five weeks, doing everything I can to reset this clock so to speak. I’m on very specific supplements to support my mitochondria, inflammation and my ANS, as well as a new medication. I’ve been drinking 100oz or more of water a day, and increasing my electrolyte and salt intake…(yes, I drink SO MUCH WATER NOW! My skin better look amazing here very soon!) I’m working to regulate and retrain my heart by doing HiiT style workouts, chugging water in between peaks of my heart rate - doing this five or more times a week. And cold plunging. Yup, I’ve been purposefully dipping my entire body up to my neck in 46° water for 4-5 minutes each time, so that I can attempt to reset my nervous system and focus on my cardiac health. It’s insane, and so cold, but it’s worth it. It’s brutal but I’m thoroughly obsessed with cold plunging now, there are way too many benefits not to love this stupid “white people thing”, as my best friend calls it.

I’m not gonna lie, it’s been a fuck ton of work and I’ve only just begun on this journey. But I’m here for it all. I have fully accepted and embraced the amount of work and dedication it will take to level out this mess because it’s not going to happen over night. This will take time, but I will stop at nothing to kept progressing further. It is exhausting at times. Somedays I don’t want to drink water anymore, or workout or jump into freezing ass water. There are some days I wake up and instantly feel terrible - dizzy and light headed, feeling every thump of my heart and I just want to wallow in my suffering and be a big ass whole baby about it. There are days when my heart rate peaks to 187 just skiing down a groomer or 134, just sitting in the sauna and I want to cry…all this work I’m doing and I’m not seeing any damn changes. But then there are those rare days in which I can actually manage my heart and breathing while I’m climbing up the trail on my bike, or my heart only getting up 178 skiing, (yes, I get stoked on those numbers in the 170’s!). Those days are slowly starting to show up in my life. And on those days, I relish in it all. I get excited about the lower numbers and I feel a sense of pride that all this work I am doing daily may indeed be working. It shows me progress. And for now, that’s all I can hope for. Progress.

I’m laying all this out there not for sympathy or giving my reasoning for being the slow-ass grandma on the mountain. I’m telling my story to remind everyone of you to not ignore your body. I’ve been so focused on my mental health these last 5+ years, working through my trauma, that I forgot to focus on my physical well-being. And it was easy to do, after being dismissed by medical professions so many times, you start to believe that it’s all in your head. You play Taylor Swift over and over in your head, “hi, it’s me. I’m the problem it me.” But we can’t ignore the obvious signs and messages our bodies send us constantly. Listen to yourself, you know you best. Don’t accept the bullshit diagnosis or lame ‘treatments’ given by your doctor if it doesn’t feel right or genuine to you. Stand up for yourself, be loud about it, be your own advocate. Because if you keep pushing it aside and making up excuses for yourself, like I did, it won’t do you any good and you’ll never get to the life you want and deserve. Stand up for your body, be it’s strongest advocate and never let anyone make you feel like it’s all in your head. You’re worth so much more than that. And thank god, I finally figured that out myself.

Okay, drip is done kids. Gonna head home, drink more water and get some work down. Lord knows there’s so much more to come on this journey, thanks for those who are with me for every brutal minute of it!