What's in a name?

I have spent 20 years chasing a diagnosis.  Trying to get a doctor to say those magic words "I believe you" - I have an explanation for exactly what you are going through, it's not all in your head, it is a very real thing.

I'm still not really there.  But yesterday, I got close.  

I went in for the follow up to my nerve release in my legs.  The doctor asked me how everything was going, and when I told him that the nerve pain was gone, he wasn't surprised.  Not only was he not surprised, he was expecting it.  And he was so convinced, he had already looked at his schedule for when he could do the same surgery on my right leg.  The nerves in my left leg were so badly damaged when he went in to release them, that he knew I was going to have instant relief.'

My problem is, I don't know why my body is doing this.  Why have I needed to have the nerves released in my wrists, elbows, and now my knees?  I think it's because I have all the characteristics of Hypermobility, and my Physio agrees.  Unfortunately, a Physio agreeing isn't the same as a diagnosis.  And without a diagnosis, if I have another flare up in another joint (such as my ankles), I am going to have to go through the agonisingly long process of convincing a doctor that my history shows that it is most likely nerve entrapment.  Each different flare up has taught me more of the right questions to ask, but why do I have to know the questions????

And my next concern, what if this is genetic.  What if I have passed on the way my body is structured to any or all of my kids?  Are they looking at the same path as mine?  How much will being able to say to doctors "my mum had this" is going to help make the doctors pay attention?

So do I pursue a name?

Do I ask someone, my specialist or my GP, to quantify what exactly is "wrong" with me?  Will this give me a sense of closure, knowing that there was a legitimate reason for my pain, that there have been and will be others who have had the same thing?  Most importantly, can I use this name to help others?  Will it help my kids to be able to give an actual medical term if they are having the same symptoms?  And can I then go out and find others, and support and encourage them?

I keep coming back to the same question.  Now that I can see a light at the end of the tunnel (and I'm pretty sure it's not another train), what do I do with this?  This has been too large a part of my life for too long to mean nothing.

How can I use my pain to help others?

I think I have a book in me, it is starting to bubble away in the back of my mind, and I think it may be time to start spending time with it, seeing if it is worth coming out into the bright light of day.

I think I would like to start doing some professional speaking.  I love standing up in front of a crowd and engaging with the audience, whether through song or through words, and I think I may have a lot to say.  I would like to tell people to trust themselves.  To push when they think they know they should.  To not take it when the "experts" try to squish them into a box that doesn't fit.

Most of all, I want to tell people how amazing God truly is.  Every step of the way, I can see His hand all through every single aspect of my life.  

I am reminded of the Footprints poem, and I know so many times there is only one set of footprints in the sand of my beach.  So many times in my life that I couldn't have possibly taken one more step myself, and that Jesus has always been the one to carry me.  I want to tell people that the level of your suffering does not mean that God loves you less, or more, than anyone else.  That suffering just is.  And whatever your level of suffering, God wants to use that suffering to make you cry out to Him.