Keep Fighting (first post)

There is a special group of people out there that completely understand the challenge of having this disease we call POTS. These unique individuals will FULLY understand your pain and your struggle. When you try to explain the suffering, the rollercoaster or the madness of this syndrome....a certain group of people will immediately just  'get it' - without judging or dismissing your pain. Not only are they the most understanding, but they are the *only* people who will fully understand. Who are the members of this secret, empathetic club? Other POTS patients. And they're the only ones will will ever truly get it.

Kind of a sad way to start out this blog, but I want to iterate a very important point here: without fully experiencing POTS themselves, normal people simply won't fully understand it. After all, it is as many others have called it, an invisible illness. 

To make matters more challenging, there are many in the medical community who don't take POTS seriously at all. Some Cardiologists, neurologists, and family practitioners don't have a clue about this thing and simply tell patients to quit worrying about it so much. (Thankfully some of them do, but the pattern seems to be that many POTS patients feel that their words in the doctors office fall on deaf ears) 

Does this sound frustrating? Impossible? This is precisely where, as patients, we must freeze time and take a good objective look at the situation. 

So you have a horrible disease. You didn't win the pots expert lottery so you doctor doesn't seem very understanding of your situation. They don't seem to know much about it either. You have emotional stress that is causing tachycardia, and that same tachycardia is causing more emotional stress. On top of this, you've waited months to see a doctor... and now you feel more hopeless afterwords. All the while, your disease doesn't care about any of this and people don't seem to take your suffering seriously---and you don't have any answers. So what do you do?

Well fortunately there are a million things you can do. And you will conquer and triumph over this -you will regain your life. But before you formulate the specifics of your attack-plan (Ie. medicines, exercises, daily routines, etc) there are some universal hacks will help you win this fight.

-Stay in control. This is about survival and you can do it. Why? Because you are a brilliant and badass scientific and biological marvel. Your DNA may have some faults but it has been hand crafted over the course of countless centuries. People throughout time have conquered worse scenarios than the one you (or a loved one) is in and have come out stronger afterwords - maybe even laughed about it in the end. Additionally, theres a chance that brilliant POTS experts are close to massive breakthroughs in POTS treatments - so giving up now might just be silly.

-Have an open mind and cherish others who also have open minds. This is important because you are going to have to self educate. and THEN... oh man ...this is the craziest part of it all.... If you want to get out of this mess, you will have to do the impossible and..

-If you have the disease POTS in 2015, you may have to actually educate your doctors. This is simply the unfortunate state of POTS right now, and you know what? That's totally OK! Because patients and doctors are just human beings doing their best. And as human beings we must learn from each other. If you have a doctor who listens, cherish them and never let go. If you have a bull-headed, stubborn doctor who is not there to learn new things (this is probably the typical scenario) then you should find another doctor... and if you can't, then you will learn to get through to these people. Trust me, you can. As far as what we need to communicate to them, I'll try to take a crack at that later, but the ultimate authority on POTS (besides the brilliant minds trying for a cure) would be the good people at Dysautonomia International. (dysautonomiainternational.com )

-Above all, love yourself, find strength and cherish those who understand.

These are just some of the key elements that will help you win this war.

For now, just remember that POTS is beatable. It might take a combination of therapies, lifestyle changes and difficult hoops to jump through, but it is beatable. You will live a POTS-free life again, so keep fighting and hang tough. Life is a long journey, and the battle with POTS may prove to be a relatively short one in the grand scheme of things. Either way, in the year 2015, POTS is running out of places to hide. So whether you are suffering from this illness or you're forced to watch helplessly as a family member struggles-- you will win this fight. Stay strong!