Thursday, October 10, 2013


Most of the people in my personal life know that I have a syndrome known as Ehlers Danlos.  At the most basic it means that my connective tissue is defective.  Connective tissue is pretty important.  It holds joints together, it holds your teeth in, it covers your body with skin, it keeps your vertebrae in place, it's what your organs and veins are comprised of, and the brain and spinal cord are covered in it.  Your body would not be your body without it.  If you want a more detailed explanation, you can click here.  There are other issues that go along with Ehlers Danlos, including something I have called Postural Orthostatic Tachycardia Syndrome.  With POTS, your autonomic nervous system is dysregulated and so your heart rate makes some pretty significant changes when you change positions (specifically laying to sitting or standing, or even sitting to standing).  You can read all about the symptoms if you click here.

I struggle.  Every. Single. Day.  You wouldn't know it to look at me because I do my best to not let my medical issues define me, or make me something I don't want to be.  And I don't want people to feel sorry for me, or think I am weak, or that I can't do something.  It was a huge deal for me to accept that I wasn't ever going to get better.  And it was an even bigger deal when two of my children were given the same diagnoses.  Now more than ever I felt like I needed to work hard to show a balance between taking care of yourself and not letting labels define what you were capable of.  When you have a chronic and progressive illness, especially one with no cure and no definitive treatment, it's easy to focus on the negative.  I didn't want to fall prey to the darkness, and I didn't want to find myself pulling my kids from there either.  This isn't a "suck it up" and "get over it" philisophy.  It's a balancing act.  An understanding that life will be tough sometimes, but you get to choose how you handle the hard times.

I spent the better part of the last year being told that I needed to have my hip replaced.  That once I did my pain would be better.  I became hopeful that this would be the end to years of struggle.  And then the tests came back and they didn't match what the Dr thought.  He didn't know what to do and told me that I needed to find a different Dr who could help me.  So I did.  And that Dr was the first to look at me and say "There are so many good things about you, unfortunately the body you were given stinks.".  He told me that if I had had that hip replacement, I'd have a beautiful new total hip- but my ligaments would never hold it into place.  So where did that leave me?  In tears.  I felt like any chance of things getter better was gone.  I thought I had gotten to a place of acceptance, but I hadn't.  I was still grieving.  I remember telling my Rheumatologist awhile back that there were still so many things I wanted to do, that I didn't want to have to give up who I was and the life I wanted to have with my kids.  I needed to be given a chance at something close to normalcy.   

So, about two weeks ago I went to see an Orthotist to be fitted for a hip brace.  Today I picked it up.  This is my last ditch resource for relief.  If this doesn't work, there are no other options.  When I first put the brace on I was instantly aware of how bad things are.  The brace works like an exoskeleton, it keeps my leg from abducting from my pelvis, and it keeps the hip joint from subluxing (partial dislocation).  This means that when I normally walk, my leg pulls outward from my hip and the ball of the hip joint slides slightly out of place.  My knee and ankle compensates for this.  So, when the brace was first put on, my knee and ankle freaked out.  They wanted to go where they were used to going.  The best way I can help you to understand is to have you think about how you might feel after riding a horse.  Now imagine riding that horse for days, jumping off, and then being told to close your knees and walk.  Not so easy.  The brace is far from comfortable at this point, but I can tell it makes a difference.  And I'm once again hopeful that the chance for some relief is possible.

So why am I sharing this?  Well, for those who know me and see me out and about, I wanted to explain why when you see me I might have on a new accessory.  I am hoping to avoid a lot of "Oh no, what did you do?!?!" moments.  And secondly, I wanted to put it out there that not everything is always as it seems.  While I am an open book, I am typically less vocal about my medical issues. I know my limits and I've worked hard to set healthy boundaries.  But not everyone takes things in stride like I do, and not everyone who hurts finds it easy to look on the bright side.  We are all surrounded by people who have things they carry with them - whether it be a physical, mental or life struggle.  The most amazing thing you can do is to approach each person with the same grace, mercy and love that you would want from them.  There is too much in this world that fights to destroy that it's so important that you do what you can to be a builder.  What if you were the only good thing that someone came into contact with that day?  What if the interaction you have is the difference between hope, and despair?  Let your love be a brace. It will positively affect the other person, and you might just find it fixes something inside you that you didn't even know was broken.   

1 comment:

Rachel said...

That's beautiful, Mandy.