Friday, August 12, 2016

Well...hello...again...

Yeah, yeah, yeah.  I know.

I have't posted in forever, but why post when you don't have anything to say?

Well, I do now.

Family can really do a number on you sometimes.

I've got a cousin who I only see maybe once a year, if that.  Everyone in the family knows I have HSN, and usually, it's a non-issue.  Not this time.

While working at a local festival, this cousin comes up, looks at my feet, and tells me "your braces are too tight".  What?  And then proceeds to tell me that I "have to get the other braces."  The 'other' braces being these molded plastic braces that go under your foot, up the back of your leg, and are secured with a wide velcro strap just under your knee.  My current braces?  There's a picture of them on this post.  Those are the braces my OT recommended because I'm so active.

Anyway.  This cousin tells me that I'm being selfish, and only living for today, and that I NEED to give up doing things I love, and think about tomorrow.

Excuse me?  For anyone that doesn't know, with this disability, it's use it or lose it, and I'm not willing to lose anything else at this point.  And as for living for today, what else do you have?  Tomorrow is never promised.

The thing is, until you know, you don't know.  You can see, sympathize, but until you've actually been in the situation, you can't really understand.  I don't care how many people in the family have this particular disability, you can't know my situation.

***Tiny bit of backstory:****
I was diagnonsed 5 years ago, and got braces early.  Why do I have the braces I do?  I told my OT how active I try to be, and that I didn't want anything that was going to slow me down, or make me lose muscle mass/tone in my legs.

Fast forward 5 years - my core strength has gotten better, I'm a licensed Zumba Instructor, and I teach at LEAST 3 times a week (although, admittedley, I'm not teaching during the summer...but I swim,  go for walks, and I'm learning new routines to do when I pick my classes back up).

****

I'm the most active person in my family with this damn disability....I'm doing my level best to stay that way for as long as I can.





So there.  

-CT