It's transformation Tuesday & today is one like no other ,for it's a transformation of knowing.
You see many pictures below. With the bottom right being yesterday. But only in one of this pictures did we know, that something just set us apart from most others.
We both have dysautonomia . Which I like to call the special gift of chronic illness lottery, not that is funny in any sense.But somehow finding humor in the entire process brings me comfort.
Though it no laughing matter at all for it is one of the most frustrating sometimes debilitating things to deal with for there is no cure. & management is tricky for everyday is so different.
October is the month to spreading awareness. So to be clear Dysautonomias come in many forms, but they all involve the autonomic nervous system (ANS). So in my terms I like to explain it as my body and others with dysautonomia literally miss fires and doesn't send the right signals.
Symptoms of dysautonomia, therefore, generally manifest themselves as problems in those particular body systems with no ones symptoms showing the same. And that would be a huge list to post here. As you can see why this is so hard to diagnosis if drs have never seen it before.
My dr is certain that I have had dysautonomia most of my life and looking back now boy do things make sense. For my Paigey girl , just diagnosed this year.She so far only has one forms of the dysautonomia which I have been able to help with her diet & give her comfort through the process. Thankfully thus far hers has been mild compared to mine.
Brad and I know without a doubt that if it wasn't for me walking the path before her she wouldn't have gotten her diagnosis so soon. But I saw it and even though I didn't want to believe it .
It's been a long bumpy road but I truly believe that this journey was sent our way to help others. I know it is. For so many things can't be fixed with just writing another prescription. But what can be fixed it getting the education out there. So that many dysautonomia divas just like us... don't have to go through years of thinking it all in their head. For your body does crazy things #truestory
One of the most important things I hope anyone holds onto from us sharing our journey is.:. You have to be you own advocate. And we have to learn to listen to our bodies so that even when things are incurable.... we can somehow keep the faith and keep fighting to make them beatable.
Though I wish my baby girl didn't have to experience this with me. I am thankful that I had to walk the path first for what better person to know what it's like than someone who lives it.
We have many storms ahead of us no doubt be we will show the world that despite it all knowing what is wrong has brought us comfort so we can ... no sitting around waiting for the storm to pass but yet instead learn to dance in the rain. #keepfighting #dysautonomiadivas