Monday, January 22, 2018

Rheumatoid Arthritis - Collective Knowledge Campfire

Let us leverage the collective knowledge of our stories!


So begins my journey...

As an educator, I love to research everything! I know that I drove my husband crazy when we bought our 1st 5th-wheel. With four girls, who can afford to fly anywhere for vacation...much less pay restaurant bills (yes...girls can eat almost as much as boys). I combed the internet, looking at floor-plans and reading through comment boards to see what others liked and disliked. I spent in total about 40 hours and 6 months before filling purchasing a Jayco bunkhouse. The camper has provided us with 12+ years of memories, as well as many shared stories and philosophical discussions.

So that is what got me to thinking...

I have spent countless hours researching Rheumatoid Arthritis, as I was diagnosed after my first flare in 2013. I started with the basics like Mayo Clinic and the Arthritis Foundation. From there I began looking at some of the top bloggers on RA, such as From this Point Forward (Mariah), the RA Warrior (Kelly), and Carla's Corner. I have read countless medical documents on RA research and still, I have unanswered questions. For example, what is considered a high RF level? I know that anything over 20 is considered high, but I have seen numbers from 40 - all the way to 300. What about the effectiveness of treatments? Research can be bias when it is coming from the pharmaceutical companies. Are there other homeopathic treatments that seem to be effective? 

Now it is time to harness the power of technology and collective knowledge...

Using Google Forms, I have created a survey to collect RA information without collecting anything personal. When filling out the form, you can put a fake name, alias, or even use your real name...BUT DO NOT put your last name! The survey will not collect the city in which you live but will ask for the state. Everyone will get to see the data so that you can look for patterns and trends in helping you advocate for your own best treatment plan with your rheumy. Absolutely no personal identifying information will be asked or revealed through this survey; we are simply harnessing the power of technology to gather our stories. This will allow us to become our own best advocates!





Rheumatoid Arthritis - Collective Knowledge Campfire

Let us leverage the collective knowledge of our stories! COLLECTIVE KNOWLEDGE CAMPIRE - RA: please fill out this survey. So begins...