Autonomic Dysfunction, Chronic Illness, Dysautonomia, Invisible Illness

an update on where I’m at in the journey

I think I’m starting to lose my “umph” when it comes to raising awareness about the conditions that we are living with. Some of it, I believe, is the platform I’m on (Facebook) and I need to make a permanent move over to Instagram where the action and interaction seems to be for the audience that I am trying to reach.

I changed my personal profile a few years ago in the direction of only raising awareness for our warrior, and place almost everything to do with our journey into an album called “a journey with POTS”. most of my friends on there have stuck with me, and I’ve picked up some new friends who share a very similar journey as us. Doesn’t Facebook “feel” different these days? It sure feels like there’s been a mass exodus and it is not the same experience. I do love it for staying connected to family and friends afar. Not a fan of maintaining multiple platforms, so we’ll see what happens.

anyway…..anyone who is still with me – please know that I am very thankful for all of the love and support that has been given this far. thank you to the friends and family who have shared my awareness posts and graphics with your friends. It is not easy to put yourself out there and share such intimate details about our life. But on our end, we are living what I share on social media every-single-day. My daughter’s conditions do not care about the Holidays, or Birthdays, Anniversaries and vacations. (she hasn’t had one in years!) Sometimes a little break will come, but a flairup (or emergency) is always, always on the horizon.

I’ve reached this “fork in the road.” I’m at a point where I’m feeling defeated with my efforts and just want to completely stop altogether. It’s if we have made no progress with getting the word out there to the masses about this hidden enemy. Patients, locally, are still being treated horribly in the ER’s. Nothings changed! It is never going to matter. It’s never going to reach the right people.

  • But then I hear from someone who knows someone who’s daughter has just been diagnosed with POTS, and I realize this is being heard
  • or someone heard the word “EDS” on TV and told me
  • or I remember all of the obstacles we are starting to face as she starts to “age out” of our insurance and the work that needs to be done within our system.

Where do I find those groups of people?!!! The ones that are already established in these missions of change within our systems – in addition to Rare Disease Legislative Advocates.

I do think I’m going to step away from journaling until after the new year. I need a clearer vision. Personally, I have been in trauma therapy (EMDR) since July and have been taking some much needed quiet time for reflection, self-improvement, inspiration and home improvements. ❤️❤️

Many wishes for a warm holiday season 🎄and an awesome 2022!


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