Hi.

Welcome to my blog.

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

When Your Friends/Family Just Don't Get It.

When Your Friends/Family Just Don't Get It.

I've found that my friends and family try to be understanding when I explain my conditions to them. But there are still things I could work on when it comes to helping them understand.

Shortly after my POTS diagnosis, I purchased a Polar Heart Rate Monitor (with chest strap because they're more accurate), they've really dropped in price since I bought mine 4 years ago. Initially they were around $160, now I found the same one for $69.99 at Walmart. I bought one because I wanted to know what was triggering my symptoms (exhaustion/tachycardia/dizziness) so I could figure out how to lessen them. The chest strap is NOT meant to be worn all day...the electrodes on the chest strap will wear out quickly if you do (I learned this the hard way). Polar will replace it once or twice, but after that, you'll have to buy a new chest strap. 

Wearing my HR monitor helped friends and family to see what my heart rate was doing in real time. This was the biggest thing that helped people understand my POTS symptoms (that I needed to sit down, slow down, or that I was having a hard time). Despite being a broke college student, this HR monitor was worth every penny. I was able to track my symptom triggers and my family members finally had 'proof' of what they couldn't see happening.

Here are some basic resources that helped me explain what chronic illness is like:

Technical/Medical Items to Share

Patient Perspective - What Ehler's Danlos is Like

Patient Perspective - What POTS is Like

Articles/Blogs - Helping you explain your chronic illness to others

Things to Share with Friends/Family 

EDS Edition - Laughter is the best medicine, right?

EDS Edition - Laughter is the best medicine, right?

I overdid it

I overdid it