Meet the face
behind the posts

Hello there, thanks for popping by. My name is Rebecca. Well I'm the face behind the posts. My journey started back in 2018 when I started to notice my legs getting a little weaker. Which is not like me! I went from being suspected of having MS to being diagnosed with peripheral neuropathy to a genetic condition called Ehlers Danlos Syndrome (hypermobility type), which then lead me on the road to being diagnosed with a lot of other rare and complex medical conditions. Things I kinda blew off in the back of my mind as being nothing or normal which then blew up in my face as being something much bigger or something that wasn't actually normal at all.

 

In 2020 the year the Coronavirus decided to show it's lovely self it's also the same year I was diagnosed with respiratory failure.  Thanks to covid my testing was pushed for months into the year as things progressed further for me. In August 2020 my respiratory muscle  function was 40%, my ABG blood gas warranted me to need oxygen. I did also have a moderate airway obstruction as well, but no wheezing, allergies, etc. I was retested in December and my respiratory muscle function dropped to 11%! Things progressed rather fast. 

​

I am currently on oxygen and a ventilator and figuring out where to go from here. It's only human nature to want to know what it's like to be so close to death and how it feels, what goes through our minds, our bodies, spirit, and how do we cope during such hard times. Follow me on this journey to find out with me.