Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Thursday Bragging

Written by Katie. Posted in Physical Therapy

I’m sitting…ok lying here after PT trying to get my body to move but not having much luck.  I guess that is to be expected with my first PT session after prolo.  I did surprisingly well during therapy but I am definitely feeling it now.

On the Dysautonomia POTS FB page this morning, this status caught my eye:
“It is important that you recognize your progress and take pride in your accomplishments. Share your achievements with others. Brag a little. The recognition and support of those around you is nurturing.”  ~Rosemarie Rossetti


This quote was very timely today. 

Physical Therapy Week Two

Written by Katie. Posted in Physical Therapy

This week I feel I like I finally hit my stride with physical therapy.  I felt like I was an actual athlete again for a moment.  That feeling is a high, let me tell you.

This time around, it is comforting that there is a plan in place.  It is comforting that we actually know what is wrong. 

In my first round of PT from July to October, I would go to each session and we would try so many different things, not understanding why I was getting so sick with standing up exercises, and why it felt like my body just kept breaking down and falling apart no matter what I did.  I was living in a fear-gripped bubble at each session, as I was being tested for MS, ALS, other neuromuscular diseases, nutrition deficiencies, vasculitis, etc (throughout the same time frame of these therapy sessions)…

It\’s a Start

Written by Katie. Posted in Physical Therapy

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…