“You have POTS” (Postural Orthostatic Tachycardia Syndrome) is what I was told, along with what they still assume is Vasovagal Syncope and PVC (Premature Ventricular Contractions). “You have two separate diagnoses, the vasovagal and the arrhythmia and then there is POTS.” We have known about my heart arrhythmia for a few months now but decided to just monitor it for the past few months to see how often it was really affecting me. I have a Loop Implant recorder inserted in my chest that monitors my heart 24/7 so that one is pretty easy to keep track of.

When I first heard this, actually heard a doctor tell me “You have POTS”, I was so excited! Now, I know that sounds CRAZY to hear! But I was actually calm, relieved, and yes, excited to hear the news that I so longed for. The reason I was excited was because FINALLY I have an answer that explains why I feel the way I do everyday. I wasn’t crazy, I wasn’t making it up. It was real. WOW.

 I always felt like I was crazy, or that it was always in my head. I justified things by accepting the fact that I was too “lazy” to do everyday activities, or play with my son, or spend my weekends doing family activities. I constantly told myself there isn’t anything wrong with you, its all in your head, just push through it and you’ll feel better later. I couldn’t help to feel this way because for so long I was constantly told that there wasnt anything wrong with me, or they couldn’t find anything or they just didn’t know. So I accepted those answers and carried on with my life.

If you were to meet me today and look at me you would ask yourself the same question. Are you sure you don’t feel well, because you look great?! To the outside world i’m not sick. I look just like everyone else, alive, healthy, walking, talking etc. What people don’t see is that behind closed doors it takes me about 20 minutes to crawl myself out of bed, stopping to sit at the end of it until the blurriness and head rush and dizziness subside before I can even walk. Or that I have to give myself a “pep talk” before taking a shower because washing my hair takes a lot of my energy. Or that most days I don’t get dressed or leave the house before 11am because my body just takes that long to start working. I’m 25 years old and I feel like I’m 50. My body hurts and aches and trembles because its just weak and brittle. I struggle walking up a fight of stairs. I have to take two breaks in-between before getting to the door of my apartment. When I finally do get upstairs I usually have to stand or lean against the wall until the dizziness and head rush go away and catch my breath. Most days, I also have to do that while holding a 25 lb toddler in my arms. ( Don’t worry, were looking at first floor places in the coming months) Take the worst flu bug or infection you have had and think about how you feel. Kinda like you were just run over by a truck, right? Where your body hurts to even breathe sometimes? Thats how I feel ALMOST EVERYDAY.

What the outside world doesn’t know is much greater than what they assume they do know just based off an appearance. They assume you are fine when in fact you are struggling everyday on the inside. I’m tired of being judged on the outside for how my body truly feels inside. I long to feel normal again. It is devastating to me that I can’t do everything I want to with my toddler. It makes me sad when I can’t pick him up whenever he asks, or constantly play with him or take him to museums and parks and zoo’s. Granted, I do have good days where I can do those things, and it makes me so so happy. But, there are also days where I can’t do much except lay on the floor next to him. On those good days, I am limited to one big activity a day, such as going to the zoo. I love going and so does my son, Jacob. We usually can only stay a couple hours before I start to get tired and we have to leave. When we do get home I have to lay down with my feet up and Im pretty much useless the rest of the day. My body aches and is physically exhausted from walking that it hurts to move.

I do consider myself lucky, because I am still able to do at least one activity every single day. Some days are harder than others to accomplish things and I sometimes don’t ever do anything so my body can recover. I am just happy knowing that I still can do those things. And I am finally able to give people an answer as to WHY those things happen to me, and that answer is POTS.

POTS affects my everyday life. I struggle with some type of symptom from it on a daily basis. That is why I was absolutely shocked and devastated to learn that I was rejected from a clinic here in Seattle that works with POTS patients. When we first read about this clinic and their amazing work with POTS patients I couldn’t wait to get an appointment and get some answers and some help. I received a phone call about two weeks ago from the clinic saying they reviewed all my files and that unfortunately they were not accepting me as a new patient into their clinic. The nurse advised me that I DID NOT meet the requirements to be seen there. My heart just sank. I felt like we were so close to getting answers and that my life could potentially start to change. And it all just slipped away from in a matter of seconds. Disappointed I hung up the phone and told my husband with tears in my eyes the news. He told me not to worry, we would get into the clinic and we will find answers for you. Very doubtfully, I agreed.