It's Still a Main Part

It has been 5 months since my diagnosis.  5 months since my life changed drastically.  I know I have had EDS since I was born, but the symptoms got much worse starting around November of last year than they ever had been.  EDS is a huge part of my life right now.  I'm working on not being defined by it or any of my other diagnoses, but because of how it effects me, it is really quite impossible to have it not be a major part of my life.
Today I saw my primary care doctor.  She told me that since she saw me a few weeks ago, she has been doing alot of research on EDS and has learned alot.  She said to me something that unfortunately is very likely, which is, "You will never be pain free.  You can lose weight and it might help a little bit but you will never be pain free.  You will always have pain, dislocations and subluxations."  She then said, "Your pain is very unstable right now and I think it would be a good idea to see a pain specialist so hopefully we can get your pain a little more under control."
So there it is.  I will never be normal.  It's so hard with EDS because it's not something other people can see.  It's not really something that can be measured and there's not a specific treatment for it.  All I can do is try different ways to cope.
Sometimes I may talk about EDS and Fibromyalgia too much.  I will have times where my pain is more under control.  Honestly, I have times where my pain is under control to a certain extent and then something dislocated and it throws my whole body out of whack.  Please bear with me...  Even though I'm trying to cope successfully, I still struggle.  Also, keep in mind that it's been 5 months.  If I was diagnosed with something else, everyone would almost expect the diagnosis to still be a major part of my life.
I love you all! Thank you for reading! It means alot to me.
Gentle hugs