The following article really spurred me to want to write this post.

http://www.aarp.org/health/conditions-treatments/info-06-2011/what-to-do-when-your-doctor-doesnt-know.html

I was reading it when Brad looked over at me and said, “What are you doing?  I didn’t even notice it but I was nodding my head repeatedly as I read the article.

I have been through some crazy times in my short 29 years, but nothing has ever compared to the extreme amount of stress I felt last year when the doctors could not figure out what was wrong with me.  When I think back, I wonder how I got through it still standing.

I read this letter this morning, which was written by a fellow POTSy friend.  It is beautifully written, honest, and REAL.  I found that it reflected a lot of what I have also tried to express to others this past year about having POTS.  I encourage you to read Susan’s letter if you have the time.  As tears streamed down my face as I read, I just kept thinking, “Thank you, Susan,” for putting into words the emotions that come with redefining life after being diagnosed with this crazy thing called Dysautonomia. 

http://dysautonomiadetour.blogspot.com/2011/07/with-me.html

The heat can break any time now.  I have been experiencing a whole new level of fatigue lately and I am convinced that it is because of this ungodly heat.  It’s really weird because even when I am in the air conditioning, it feels like my body still knows that the heat index is 105 degrees. 

Just something else I am learning.  Extreme heat + POTS = Bad combo for me. 

So glad to see relief is in sight by Monday. 

Since I have been spending a lot of time in the AC, I have been trying to work on a few pretty exciting projects, as well as immersing myself in music.  Here’s a few of my favorite tunes right now…

Last Monday, Brad and I traveled to Toledo to see the infamous Dr. Grubb.  When I was first diagnosed with POTS, I researched Dysautonomia like crazy.  Dr. Grubb’s name kept coming up over and over again.  From there, I read many of his research papers about POTS and other types of Dysautonomia. 

I made it my mission to see him after I was diagnosed, so I called his office back in November, and the very nice nurse explained that I would have to wait more than a year for an appointment.  However, she explained that I could see the NP, Beverly, in about 4-6 months.  I told her I was totally fine with that.  Therefore, at the beginning of December I faxed the office all of my test results and diagnosis paperwork.  In March, I was called to set up my first appointment with Bev for April.  On April 20th, I saw Bev for the first time. 

It seems I come across a lot more articles about POTS that are written in the UK, than the US.  I wonder why that is…Anyways, here’s the latest POTS article I found.  I tend to look for more info about POTS when I am struggling with it more myself.  I really hope that articles like this can continue to spread awareness.  Yay, Dr. Grubb!

http://www.telegraph.co.uk/health/8596450/How-gravity-can-knock-you-sideways.html