Accepting My Disability

If I had to pin down when I accepted my disability, I couldn’t say, because it took me a long time to realize what was happening to me and to force myself out of denial once I did.  There were usually comparisons or excuses like:  I’d only passed out/blacked out X number of times in X amount of time.  Or I’d only fallen down the stairs X number of times in X amount of time.  I’d tell myself at least I could still walk, until sometimes I couldn’t.

I finally had to ask myself what I was so afraid of and what it was I was avoiding.  I was already in this state.  Nothing was changing for the better.  It was all mounding up and I was becoming depressed.  If I didn’t accept it, I was going to remain stagnant and go nowhere while waiting for something to happen.

Wait…who am I to wait around?!  I have a life!  It’s right here!!  

As a person with control issues, this was extremely hard for me to let go and accept so much help from people, but it’s what I had to do in order to accept things and move forward.  It’s still hard to do so little when I want to do so much.  Sometimes, the simplest things seem to be the things I need help with and that can be annoying but at the same time I am so thankful that I have people in my life who are willing and able to help me.

It might seem like a strange thing to be thankful for, but this acceptance has been incredibly freeing and continues to become more so as I am more able to find comfort with my new self.


Dr. He-Who-Must-Not-Be-Named and My Amazing New Robot Legs

I have gotten so incredibly lucky in having found such a wonderful new rheumatologist (who humbly requested to remain anonymous, thus the name).  He just “gets” what’s going on with me.  That’s not an easy task.  He also understands EDS in general, which isn’t something I can say about any other rheumatologist I’ve seen, and I’ve seen quite a few.  So, when I brought up how often my hips had been dislocating recently, he excitedly responded, “I have an answer for that!”  He pulled up a picture of these braces on his computer and wrote me a prescription.  Meanwhile, we joked about how I will look a little like Robocop and how I am aspiring to be the newer, updated version of the Bionic Woman.

These aren’t really robotic-they are just kind of like an exoskeleton to keep my hips from dislocating and to keep my legs from rotating.  For the first time ever, my knees and feet face forward and are parallel instead of pointing inward.  It is pretty amazing for a person who has had problems with her legs her entire life and has been dislocating her hips for 33 years to finally have some stability!  Years of physical therapy have done nothing to correct it.  I am so thankful for my new braces and so very thankful for Dr. He-Who-Must-Not-Be-Named!

Bob is for Awesome

It isn’t easy being married to a honey badger, but this guy handles it well and then some (at least most of the time).  I like to tease him and give him a hard time because that is the nature of how we work but the truth is he is pretty darn great.  I’m not just saying this because yesterday he painted my toenails and cooked me beignets and beer-battered fish.  I’m saying it because don’t know if anyone else would be cut out for the highs and lows that come with me (and my “issues”) and be able to somehow help me make the best of them when I can’t.  Sure, he is lucky to have me and all, but that isn’t what this blog post is about.  This is a shout out to Bob, because Bob is for Awesome.

My Partners in Crime

Sometimes there are things you need to do and you just can’t do them by yourself.  Well, perhaps you can, but you just won’t.  Times like these call for those people you can count on (or force into) going along for the ride.  Today was our first day using our new “sports facility.”  Love It or List It watchers, you may get my reference–yeah, it’s our basement with some exercise junk in it.  Even Nacho and Petunia got in on the act (walking in circles trying to figure us out).  They get confused when we are all upright and off the couches/out of the beds at the same time, so they were downright baffled by what all of this movement was.

We busted out the SAD lamp to get our rays, turned on some tunes and got in a good 45 minutes of giggle-inducing exercise.  No way I could have done that by myself.  Nor would I want to.  💛


My Precious

You might be picturing a golden ring, but I am actually referring to a delightful, golden yellow yoga ball chair.  I have a very hard time with chairs.  They all seem to hurt either my back, my neck, my SI joint or my legs.  But this yoga ball chair is different.  Somehow, it seems to rotate my hips to keep me in a good (correct?) posture and does so without putting too much pressure anywhere.  It is fantastic!  I had never tried one before so I was very excited to get such great results.  My daughter had used a yoga ball to sit on for core strengthening in PT before so I thought I’d give it a shot.  So glad I did!  I can do some of my own exercises on it and use it in the art room too!  I haven’t been able to do much with art in years because of the inability to sit for long but this chair is really helping.  So happy!!