Hi.

Welcome to my blog.

My goal is to help provide EDS & Dysautonomia patients with resources to discuss with their healthcare team.

Watching Patch Adams

Watching Patch Adams

While watching Patch Adams, I'm reminding myself that it's possible to make a major change in healthcare. It can be done and I'm making steps toward that change.  Some day I will open a hospital that puts patients first and takes the time to treat people, not just a list of symptoms. 

I'm an entrepreneur at heart seeking to change the way patients are treated. From the moment you walk into a hospital, you should feel like you're in a place of healing, a place where people truly care about you. Doctors and nurses should look forward to the work they do. They should be reminded of why they got into healthcare. All of the healthcare professionals I've had the honor of talking to, had the same answer - they wanted to help people or make a difference in people's lives. 

The current system of healthcare gets in the way. 

From the moment I walk into an ER (because I can't get IV fluids anywhere else during non-clinic hours) I know I'm going to wait around in an uninviting ER waiting room that is decorated with hotel meeting room furniture, hotel hallway style paintings, and boring paint on the walls. I will wait for 2-3 hours before I'm seen (because my needs aren't top priority). I will be treated like a drug seeker because I know what I need (even though I'm not seeking pain medication). All I need is 3-4 bags of IV Saline and I'll be on my way. After waiting for 3-4 hours they'll insist on a pregnancy test - even though I've told them at least 5 times that I'm a lesbian and there is ZERO chance that I could be pregnant. I'll be forced to change into a hospital gown - that I never know how to tie properly. Why can't I wear my own clothes? They're just putting an IV in my arm. I'll lay there uncomfortably for the next few hours while the saline slowly drips (and my friend has to sit in an uncomfortable chair that is barely a step up from a metal folding chair). I cannot move my left arm because the IV is inserted into the crook of my left elbow and I can feel its every movement. I won't be offered numbing spray (like they do for kids) before the IV is inserted. I will get cold because the IV bag wasn't warmed up. I will leave the hospital, after 6 hours, feeling exhausted (physically and mentally)...taking the next day to recover. Was this really a better option than staying at home and doing nothing? Is this really how patients should be treated? Is this what healing is supposed to look like? My answer is that there is a better way, there must be. I want to advocate for other patients that feel this way. I want to help. 

My First Support Group Meeting

My First Support Group Meeting

Functional Tips for EDS/POTS

Functional Tips for EDS/POTS