Ignorance Isn't the Bliss You'd Like It to Be

        I'm not usually one to directly share links to other entities, here on this blog, partly because I am very aware that there are a LOT of "awareness" days, weeks, months, etc.; but this one is different. This one is important to me, in a very personal and unique way.

Here is the link, and an image to kinda sorta show what it is:

http://www.rarediseaseday.org/

        Because nothing is quite like the kind of awful of bringing up your illness with your doctor, in order to get information and hopefully some options for hope, and having to teach said doctor what the illness is while (s)he looks it up on the internet. And then, after realizing there are only one or two doctors in the state (province/small country/etc.) who know anything about it, finding out insurance (or whatever medical system/plan is in effect where you live) doesn't cover their specialty... I'm guessing because the specialty is expensive, because the illness is so rare?

        There are so many reasons this worldwide awareness day is needed. The more I learn about all the ways the human body gene blender can mess things up, the more I realize how precious and fragile this life is, and how miraculous being healthy and whole can be, and how little people seem to care about that fact.

        You know of someone who has a rare, genetic disease. In fact, you probably know more, personally, and don't even realize it. Some people don't even find out they have one til they are significantly impaired or have an illness or injury no one can figure out. I found out because of an injury, the story of which makes people wince and marvel, at the same time. In five years, I went from seemingly normal to continual pain, weakness, weird injuries, and chaos, and I'm one of the "lucky" ones who got to spend over 30 years oblivious to the time bomb. I'm happy to discuss it, if requested, in the comments section below*, or in the comments of the post where this article will be shared on the PB Facebook Community Page.

        I'm not telling you so you'll have pity. I'm telling you because the reason nobody, including doctors, know about these illnesses, is because nobody talks about them. I squirm talking about some of the effects of my disease, and those of my autoimmune diseases, too, but I'm willing and happy to, if it helps people who honestly want to make a difference in their lives, and a host of others, to understand things better. As is the premise of the PB Project: I want people to know that they don't have to face the things they face, alone, even if they aren't the same things I face. Because people accomplish a lot more together than they do apart.

        Better days ahead, my friends!

*Update: Blogger isn't very kind to me when it comes to posting comments to the blog posts, and I've never figured out how to fix it, so I've had to give up the fight when it comes to those.  But you're always welcome to contact me via The PB Facebook Community Page, Google+, or via email.