Forgive me, I’m a day late.  Had a yuck day yesterday-all hurricanes going at once; POTS, neck, Migraine, GI…Was on the massage pillow and heating pad most of the day and in bed at 8:30…Hopefully today will be a better day.


1.   Larry had me meet with a doctor from Minnesota who was in town for the weekend teaching at the MSU College of Osteopathic Medicine, Principles of Manual Medicine Course.  He spent an hour Sunday and an hour Monday doing visceral manipulations on me.  AND, his wife and daughter both have EDS! Visceral Manipulation is a type of gentle manipulation that helps relieve imbalances and restrictions in the interconnections between the motions of all the organs and structures of the body. (I took that from http://www.jeffreyburch.com/home/jb1/visceral_main.html).

Well, I have been putting this post off because I knew it was going to be a long one.  One with a lot of information; some of which I honestly did not want to hear.  Since my appointment last Thursday, I have been mentally processing a lot of the information I learned at my appointment with Dr. Tinkle. This “processing” has led to a few mental breakdowns emotional moments, and I felt it was best to blog about it when I was feeling much more positive and ready to break it all down in writing. 

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.

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…