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

Posts Tagged ‘Ehlers-Danlos’

\”In the End Some of your Greatest Pain Becomes your Greatest Strength\”

Written by Katie. Posted in Ehlers-Danlos Appointments, Prolotherapy

Prolotherapy, round #Ihavelostcount.

Thursday marked nine weeks since I had my last prolotherapy injections.  That is the longest I have gone since I started, and I think it was a couple of weeks too long.  The two weeks leading up to my appointment, I was dealing with some major neck and shoulder pain…to the point that I was sleeping with my trusty rice heating pads again.  Needless to say, I was ready to get in the car and make our way to Dr. Cantieri’s office.

Q & A: My Current Exercise Regimen

Written by Katie. Posted in About Me, Ehlers-Danlos Awareness, Physical Therapy, POTS Awareness, Questions

I recently received an email from a Mom whose daughter has just been diagnosed with EDS and POTS.  She had questions about my exercise routine with POTS and EDS.  It made me think about how I have really neglected this blog the last few months.  I am honestly having trouble finding the time and the energy to keep everything updated, but I am going to try and do better.  I feel it’s important; especially for awareness and documentation sake.  When I think back to why I started this blog in the first place, one of the reasons was to document my journey for learning to live with EDS and POTS.  When I was really sick, I remember looking all over the Internet for blogs that did the same. I found such comfort in reading about other people’s stories that were so similar to mine. 

The 2nd Annual Invisible Illness Benefit Concert Launch Day!

Written by Katie. Posted in Ehlers-Danlos Awareness, Family, Fundraisers, Invisible Illness, Memorable Experiences, Music, POTS Awareness, Thankful

Dear friends, family, supporters, and fellow zebras,

Finally.

After months, and days, and hours, and hours…and more hours of planning, we are finally ready to launch ticket sales for our 2nd Annual, “An Evening with Chris Trapper to Benefit Invisible Illness Research.”

Fate, Family, Answers, & Genes

Written by Katie. Posted in Ehlers-Danlos Awareness, Family, Memorable Experiences, Questions

Ehlers-Danlos Syndrome is genetic.  Of the genes. Often inherited (though not always). This, I get.

What I have always wondered is if my EDS was in fact inherited, where in my family did I get it from?

My siblings don’t have it.  My parents don’t have it.  For three years, I have not known of anyone on either side of my family who has EDS.

Five For Friday 2/1/13

Written by Katie. Posted in Five For Friday

Happy February, friends!

1.  Medical Stuff:

  • 2 Days of Home Rehab.  I should have worked another day in there.
  • My OMM doctor had to cancel my Tuesday appointment due to sickness.  I am rescheduled for later in February.  Right now, my thoracic is in major need of some gentle manipulative medicine.  While I wait, I will rely on heat, strengthening, foam rollers, and my physical therapist.