Thanks Uncle Steve for letting me know about this article.  It is crazy that since I have been diagnosed, I have actually read two articles in the news about girls with POTS.  This is encouraging to me because hopefully the more POTS is out there in the media, the more (hopefully) will be learned about POTS, and therefore researched about this little known disorder. 

Now that I know I have POTS and Ehlers Danlos, the question has transitioned from what is wrong with me to why is my body doing what it is doing because of these disorders?  It is ironic to me that I searched for a LONG time for answers, and when I found them, I received answers without answers.  Do not get me wrong.  It is a relief to know my diagnoses.  And it is a relief not to have to go to another specialist only to be treated like a crazy hypochondriac, while being handed a depression scale.  But to be honest, I like things black and white.  I like to know that if I do A, B will happen.  I like to have problems (or disorders) where a “one size fits all” kind of approach tends to work.

So, I think this merits it’s own special blog post.  After I got home from Fort Wayne today from getting a T9 nerve block, I had a message on my phone to call the famous Dr. Tinkle’s office. 


To back up, when I thought I was going to be diagnosed with Ehlers Danlos, I got back to hard core researching, and realized that Dr. Brad Tinkle is pretty much a God to EDS patients. 

When I was on the diagnosis path and was beginning to think I had EDS and POTS, I would look on the Internet for hours at a time to try and find what people were doing to manage both disorders.  So I have decided to document the process that I am going through to figure out what works for my own records and for anyone else out there who may also be looking for more information on the management of either disorder.

I have come up with a beginning schedule of ways to try and help manage my POTS and EDS until I can get more treatments going such as physical therapy, prolotherapy, chiro/massage, water therapy…Of course this schedule does not take into account day-to-day happenings such as appointments, errands, housework, etc…

1.  Allie came home for less than 24 hours for a wedding. It was kind of a tease but at least she’ll be back in a week.  We had enough time for a picture though.