As of today, November 20, 2014, I have been sick for 6 months. Now, in the general scheme of things, that’s not too long. But, in the agonizing day in and day out, it’s a hell of a long time! In this timeframe I have seen: 3 emergency room doctors, countless nurses, 6 cardiologists, 2 primary care physicians, countless phlebotomists, 4 X-ray technicians, 1 MRI imaging specialist, 2 physical therapists, 1 ear nose and throat specialist, 1 naturopath…and a partridge in a pear tree. My point to this rant is this…when so many people are involved in a persons health story, how do you know who to trust? Obviously the cardiologists are concerned with my heart and it’s size and function, that’s awesome, but there is more to this illness. The ENT is concerned with my nasal function and inner ear, that’s again, awesome, but there is more to this illness. The list could go on and on and on and on. Being struck down by such a rare and complicated syndrome has made it virtually impossible for me to know which end is up sometimes. How do I know what the priority is? It feels like I’m floating through a sea of doctors who are all concerned about their area of expertise…but who is concerned about ME? ALLLLLL of me. Why doesn’t the medical community look at an entire person? It’s so frustrating to go to all of these appointments and have to re-explain my story to each person I meet. For one, POTS is such a weird condition that people look at me like I’m nuts. And secondly, why can’t we all get on the same page people?! Why should it be up to the patient to educate the doctors about what is happening?
A few weeks ago I decided to take matters into my own hands around this very frustration. I hopped on Google (a girls best friend when you have an illness no one has heard of!) and I searched for holistic doctors with POTS Syndrome experience. I decided that maybe I was tired of being pumped full of prescriptions that weren’t causing the change I wanted to see, I wanted to take a different approach. Then, BOOM! My options were numerous. There were doctors all across the state of Maine that were familiar with POTS Syndrome, and some had even *gasp* treated them! I emailed several providers back and forth and finally found someone who clicked with me. Thus far I’ve had two appointments and let me tell you, this woman is AMAZEBALLS! (yes, I said amazeballs…) She asks me questions about ME. My whole being. How I sleep, what I eat, what my symptoms are, what my goals are, where I work, how my pregnancies played out etc etc etc. She reviewed every bit of data that was out there about me. All my labs, scans, reports and write ups. She was looking at the whole picture…FINALLY!
She ordered another round of blood work, it felt like 100 tubes worth, but I’m hoping to have some more answers soon. If there is anything left out there to uncover about me, she’s going to find it! POTS is a condition that people typically get after something else has happened to their body. I am confident in her because she’s treated this before, and made people feel better. She’s treating me like a person who matters, and she cares about all of me. I’m just glad to have her on my team!
I’d also like to say that I do love and respect all of my caregivers and my team of doctors. The post isn’t meant to slam them or what they do. It’s the way western medicine and insurance companies work, and I understand that. I just wish it worked a bit differently. Holistic medicine is something that isn’t for everyone, and there are lot’s of people who believe it’s just a bunch of hocus pocus. But, the body does have an incredible way of healing itself if it can, so why not explore every avenue out there? That’s my plan! As my mom so eloquently posted, POTS spelled backwards is STOP and that it exactly what I’m going do, make it…STOP!