Please don't stare.

Did you know that while my type of dystonia is very rare that dystonia itself is the 3rd most common movement disorder? But most people have never heard of it, crazy right?

If I go into a doctor and they ask me how to spell it, then say they have never heard of it.. (and this has happened) I am polite but I immediately find a new doctor.  Or if I can sit there and whatch you google it... Yeah finding a new doctor.  Its sad but these things have happened.

Last night was difficult for me.  My chest was really tight my heart rate was at 145 and my o2 was down to 94 at points, but I feel much better this morning compared to then.

Things I want to talk about today are my experiences when strangers don't know whats wrong.  MOST people stare.  Some make sarcastic or nasty comments.   When I was in school people would call me a drug baby, or tell others that I myself was taking drugs.   Please don't stare.  It makes it SO terrible.  You feel ashamed of yourself and it makes anxiety so much worse, and the quick change in emotion can make the movements so much worse.

When I was in college I was in a library studying and my movements were particularly bad that day.  I had a guy come up to me and he said: "I don't mean to be rude so I hope I don't offend you But I have been watching you a few minuets and I was just curious as to what is wrong?"  A few years later I was in a restaurant eating and the same thing I was having a particularly bad day and a waitress stopped and she just asked if I was okay.
I don't know about anyone else.. But to me these were kind acts. You asked instead of just staring..or assuming, or being freaked out.  I felt grateful for those people.

I am self conscious, but far less then I used to be.  When I was younger it was HARD for me to make friends because I came across as rude or standoffish.  I preferred not to speak.  Sometimes the M-d makes my speech VERY hard to understand.  I just didn't want people to stare.  I preferred to not be noticed, to not stand out.   As I get older I care a little less about what people think because if they are going to be that not understanding they probably shouldn't be a part of my life anyway.  I love the invention of texting.  I HATE talking on the phone.  Most people have a hard time understanding me.  Automated systems don't even pick up what I am saying.  Those closest to me have learned to speak "Casey", and know what I am saying.  My partner can even sometimes just determine hand gestures LOL and will make most of my calls for me or talk to people on the fly after I hand her the phone because someone has asked me what for the 3rd time. At my old Doctors office I there was a receptionist there that could NEVER understand me and it never failed she would just eventually hang up on me.

I don't do well in large social situations they make me uncomfortable.  Anxiety is a beast especially with things like M-D because you are always worried what people are thinking about you.
I try now not to care so much but there are still days when I just can't be out in public.  I can't even watch videos of myself because I hate what I look like.  My partner and I took a trip and swam with sea lions I loved the pictures because they looked pretty and I looked normal.  I didn't want the video though because I can't stand to watch myself.  It's painful.  These are things I am still working on.  One of my best friends had a wedding back in August, and that was also difficult. While I thought I looked nice, I had no self confidence issues about that. I had a very hard time being part of the wedding party because Of my movements.  I wanted to cry because I felt like I ruined parts of her beautiful wedding.  I didn't want to miss out on such a huge part in her life though so I did it. As I got up to the front of the wedding party My dear friend who has always accepted me just as I am from the start told me just to breathe I did great and I was with her now so I was fine. It was painful and I had a moment of self hate afterwords. Eventually I would get over myself and realize it doesn't matter.. I was there for a beautiful moment for people I loved, and that is all that needed to matter.  I am lucky I am blessed with so many people that love me so unconditionally.

This is where I end today. Everyone be Blessed!