Introduction

A beautiful morning outside my house.

Hello and welcome to my blog “Putting Up With POTS.” This blog was started in the hopes that it could be a resource for people living with chronic illnesses and conditions. When I first became sick It was hard to find help navigating everything. I wanted information, tips, stories from other people who had been through this. I wanted to know I wasn’t alone. And I wasn’t. And you’re not either.

My name is Jess and I live in Pittsburgh PA with my husband and our five chickens. I have had various symptoms (undiagnosed until fairly recently) for as long as I can remember. As a small child I experienced a pretty high number of injuries, most of which didn’t make much sense to the doctors I saw. As it turns out I have Hypermobility Spectrum Disorder, which in very simple terms means that my collagen is too relaxed. The reason my injuries didn’t make sense to doctors was because they were dislocations or subluxations (partial dislocation) but by the time I was seeing the doctor they had already slid back into place. I was diagnosed at age 28.

As a teenager I started having symptoms of what I now know is POTS. POTS stands for Postural Orthostatic Tachycardia Syndrome. It’s an autonomic nervous system disorder. You’re autonomic nervous system controls all the things you normally don’t have to think about: breathing, blood pressure, heart rate, digestion, etc. One of the most common symptoms of POTS and the first one I had as a teenager was lightheadedness, especially when changing position. Lots of people occasionally get light headed when they stand from being seated for a long period of time but I would nearly faint pretty much every time I stood up. I even blacked out sometimes just moving from slouching to sitting up straight. I’ve also learned in recent years that my anxiety symptoms are related to my POTS. Often when gravity is a factor, i.e. when I am upright, there is not enough blood and oxygen getting to my brain. This leads to the lightheadedness of course but it can also lead to a fight or flight response and therefore anxiety. It took me 14 years to get diagnosed with POTS, in no small part because until very recently it was rare to find a doctor who had even heard of it before, let alone one who knew how to treat it.

Lastly I have IBS and depression, just like everybody else.

I've learned over the last several years in particular that there are lots of people dealing with chronic illnesses, there are even lots of people dealing with the exact same chronic illnesses as me. If you are facing challenges relating to the chronic health journey this blog is for you! I hope you find it helpful!