All posts filed under: Life

13 Years Ago Today ….

You can never be prepared for certain things to take your breath away, but memories like this sure do. They also leave you permanently attached to the people who were with you at the time – both family and new friends you had only recently met. I wasn’t initially sure why this picture showed up on my FB memories – especially as a memory from 3 years ago, and because my mom passed away over 10 years ago. And then I realized why – my mom passed away 13 years ago today – I had just found out 10 days earlier that I was pregnant with my first baby, Johann, who we named after his Bedste.

Love my babies – no matching outfits, unshowered, sandy and sunkissed. Best kind of pictures. 

Before I was knee-deep in launching a 501(c)(3) nonprofit, planning wellness retreats for patients and holding physician learning conferences, or before Sisters Media branched out into print and digital publishing for medical and health field, my main love other than working out, was photography. Still is by far one of the things I love the most – especially when I actually use my good camera. 😉 

The Constant Whooshing in My Head …..

When you have constant, non-stop whooshing in your head (no, not just tinnitus), you’ve been diagnosed with Classical Ehlers-Danlos syndrome (CEDS) 3x, but genetic testing came back negative, and the EDS world really doesn’t know what you have – other than you have some kind of connective tissue disorder that’s not Marfan Syndrome, VEDS, or other more common mutations …… They do know that you have 2 CBS Gene mutations and a few other genetic mutations, but they haven’t determined how any, if at all, play a role in a type of EDS, or a connective tissue disorder that “looks like” Classical/Vascular/Hypermobility-types of EDS. And there’s no identified genetic marker(s) for Hypermobility type Doctors and genetic testing has also determined that you have 2 CBS Gene mutations and a few other genetic mutations, but they haven’t determined how any, if at all, play a role in a type of EDS, or a connective tissue disorder that “looks like” Classical/Vascular/Hypermobility-types of EDS. And there’s no identified genetic marker(s) for Hypermobility type EDS, unless you count TenX. …