I know I’ve talked about being “out and proud with familial dysautonomia (F.D.)” and made it sound oh so determined, but I mean that wasn’t a written contract, right?
Now, I’m not at all saying that I’m ashamed of it or anything, I’m just saying that some days are harder than others? In all honesty, I feel like F.D. for the most part doesn’t really stop me from doing anything, I’m luckily pretty high-functioning as they call it. But then comes in this tiny little fact that F.D. is progressive, meaning that things change over time. Like my doctor once told me, everyone’s body changes as they get older, so really this is a pretty normal thing. But, for those of you who need a better explanation (like me), I hunted around on Google for a definition of the word ‘progressive’. Here’s what I found:
“happening or developing gradually or in stages; proceeding step by step.”
Anyways, what I’m trying to get at with all this rambling, is that things aren’t the way they used to be… F.D.-wise that is. My most recent change is that I now need to do more tube feeds. Why? Well, it’s a whole long explanation that involves a CT chest scan and a little bit of coughing… won’t bore you with the details. The bottom line is, to be able to drink my 2 liters a day, I now need to use my Mic-key button for some help with this. This is something I used to do all the time when I was a kid. Up until my teens I think, I did these tube feeds regularly. Then started a phase where I drank everything by mouth all the time. Now, this phase is ending. The good part? I absolutely hate drinking so much water by mouth, so this is actually kind of a relief! That being said, this is taking some adjusting.
Let’s just say, I used to always pride myself in being able to “live life like everyone else”. This started when I was a kid of course, because what kid wants to stand out and be stared at?
– A kid in elementary or middle school + tube feedings at school = Yikes!
I’m sure you can see where I’m going with all this. Since then, I always wanted to avoid that feeling, even as an adult. So, this whole ‘doing tube feeds again’ is definitely a change! I can’t imagine doing it in public… would be interesting! Might happen one day, though. I keep telling myself that I can still feel proud and all that… blah blah blah… and I’m positive I will actually fully believe it one day, too hehe. I guess I just need time to get there. I mean really, what on earth do I have to hide?! Being proud of taking care of my health in public? Most definitely not a negative thing!
One day, I hope society will become more accepting and less likely to starenat people who are different! 🙂
Want more facts about F.D.? You can read this 🙂