Friday, October 27, 2017

Growth- Part 3

If you missed 
you can click the links so you can catch up.

This post has been a lot harder to write than I anticipated. There have been a flood of emotions as I go back through everything I have been through over these past few months.
However, it's been interesting to think back through the journey, and see how God has been there every step of the way.  
Picking up where I left off...
The physical therapists that I visited for all of my running ailments had an in-service day where they were learning how to treat a particular syndrome. 
All three girls who had been working on me agreed that there was a chance this was what I was suffering from. 
There is a quick test you can do to see if you qualify for further testing. It's called the Beighton Score.
If you look at the picture below, you can see the different things that are tested. 
I scored 9 out of 9. :-(
So that got the ball rolling in forming a diagnosis.
The physical therapists contacted my doctor, who in turn scheduled an appointment with a geneticist. I had to wait three months in order to see this particular doctor, and we had to travel 2 hours to see him.
May 8, 2017, I was diagnosed with Ehlers Danlos Syndrome, Hypermobility Type.
That day is pretty much a blur. 
I was asked all sorts of random questions (or what seemed to be random) which all pointed back to this diagnosis. 
I remember breaking down when he told me I had it.
I remember my sweet babies trying to comfort me because they don't like it when they see their momma cry.
I remember my sweet husband sitting there, being a rock for me. (I love that guy so much!)
Even though this was a tough day for me, it was also the answer to all of my health questions over the years.
There are 6 different strands (I think) of Ehlers Danlos Syndrome. The geneticist told me not to google it because it would scare me to I heeded his advice ;-)
Hypermobility Type is what I have. 
There is also a spectrum for the Hypermobility type, and I am on the top end, thankfully.
Because I have been active my entire life, I have been able to "stay in place" a little better, and stay strong.
I did take a hit emotionally, though.
 I now have to see a cardiologist every year to make sure that my heart looks good. 
In some patients, the heart is effected. I believe the arteries can collapse due to over-elasticity.
That was very scary to hear.
However, my heart is in perfect shape.
I have to have a bone density scan every year...something I knew would eventually know, when I was O.L.D. ;-)
And thankfully my bones look great.
Another praise.
I am no longer supposed to run, due to the impact on my joints. I cannot produce collagen like a normal person, which plays an important role in building joint cartilage. Taking collagen supplements does not make it better.
Not being able to run...Knife to the gut right there. 
I also am not supposed to lift weights, get on a treadmill or an elliptical machine.
I am not supposed to stretch because that makes my symptoms worse.
In order to feel like I get a deep stretch, I have to go further than a normal person which makes the joints looser.
I feel the need to stretch constantly because my body is in a state of constant tension. It's doing it's best to stay together.
So everything I have been doing over the years to stay fit and healthy were taken away from me, and that made me angry.
Two weeks after my diagnosis, I decided I no longer had Ehlers Danlos, and I was going to do what I wanted to do...and as you would have guessed, that didn't work.