When I started writing on here, I knew I had health issues.... many joint issues and surgeries.  The why wasn't anything I had bothered to even try to figure out.  It was... and still is... my life.  Fall a foot, rip 7 tendons off 2 shoulders.  Yep... that's me.  2 tummy surgeries, 2 prolapses, back issues, fatty tumors, 12 joint surgeries and never-ending joint issues. Welcome to my life.  And then a doctor finally put it all together.  I was diagnosed with EDS... Ehlers Danlos Syndrome.  They affectionately call us "Zebras".  The reasoning behind it is that doctors are taught that when they "hear hoof beats to think of horses - not zebras"  In other words, think simple and common - don't go looking for the exotic.  But we are the exotic.  Misunderstood and misdiagnosed constantly.  People thinking that we "look healthy = we must be faking or we are healthy".  Our pain and issues overlooked and we're called "pain seeking or drug addicts", "hypochondriacs", of just plain "crazy".  We couldn't possibly have the issues that we complain about and how can people hurt in different places by the hour or week.  How can someone who (at that time) hadn't turned 40 yet, be looking at their 10th joint surgery.  How can we do the "parlor tricks" that come with being hyper-mobile and look fine yet be living in never-ending pain and collapse without warning.  

So what is EDS?  It's a genetic disorder.  It is a SYNDROME which is how so many of us go undiagnosed or misdiagnosed.  While there are similarities with people who have EDS there are 14 (currently) sub-types of which the "experts" have changed the number and name of the sub-types as well as the diagnosing criteria several times just in the last few years.  People who were considered to have Hypermobile EDS (hEDS) - some of them have now been dropped down into a sub-category known as Hypermobile Spectrum Disorder (HSD).  Since there's no genetic marker for hEDS - from what I can tell, it depends on the doctor and how he feels you fit the current criteria.  Good luck.  Some people have all kinds of issues with docs and support.  I've been fairly lucky that I've had good luck with finding decent docs.  My doc came to me with a diagnosis and since then, I've had 3 other docs confirm.   There are genetic markers for some sub-types but not all.  Even people with the same sub-type might react differently to the different treatments (of which there are many and differing ideas even within the medical community of what works).  We have different co-morbidities (different other diseases that come along with the syndrome).  Our collagen is faulty.  Some people say ... well, take collagen or collagen substitutes.  I had (what I thought was) a good friend tell me to "just take vitamin C and you'll be cured".  Yep.  Taking vitamin C encourages collagen production.  The problem being... "normal people" who make collagen make cake mix.  People with EDS make brownie mix.  So even if I took a supplement to make more collagen (like Vitamin C), I'd make more brownie mix.  It's not going to change what my body makes.  Adding more flour to a brownie mix doesn't change it into a cake.  Adding more brownie mix to brownies doesn't make a cake.  You just have more brownies.  And what makes it harder is no one knows yet why we're defective.  We just are.  All they can do at this point is manage the symptoms and damage and different docs who are "specialists" can't even make up their minds or come to a consensus as to what works best.  Because for some people PT is king.  You build the muscles up to where you incur less damage.  And maybe that works for the younger ones suffering if they catch it before too much damage is done.  But what about people like me?  People who have already done more damage to their body (unknowingly) than can even potentially be fixed.  Well, sometimes PT works, sometimes it doesn't.  Depends on the joint and the amount of damage that I've already done.  Depends on if the PT has ever heard of EDS before.  Anyone want to do an experiment, just out of curiosity - ask any or all of your docs if they've ever heard of it.  Let me know how many of them have any familiarity with it at all. 

     So the current excitement in my life.... Joy at getting a walker.  One of the ones with a seat so I can get out and about more.   The other joy was finding out I wasn't crazy.  Yep.  Find out I have a syndrome with no cure and a death sentence and be happy.  Because there is a reason I feel like this.  There is a reason I've gone thru all this.  My body is defective... not my mind.  Ok, maybe my mind is a little defective but I wasn't imagining all the hell I was going thru.  Now I just go thru hell wondering when the idiots in charge are going to mess with my medicine and confine me to bed on a permanent basis.  But that's a rant for another time.  I really don't want to dwell on that fear right now.  The more idiots screw up, the more the idiots in charge punish the people they can get at.  They can't stop criminals from breaking the law because by definition... that's what criminals do.  And if they'll break 1 law - they'll break 10.  So since they can't control the criminals, they punish the innocent.  It's disgusting and a shame that this is what the world has come to.  I've lost several online acquaintances.  They committed suicide... They couldn't deal with the pain and the outlook of knowing it will never get better and there's no relief.  Quality of life non-existent.  Nothing to look forward to other than never-ending pain.  And if you've never had to deal with pain like that to where you can't function, can't breathe thru it, can't move, can't sleep, can't function to where it feels like your whole body is going to explode- congrats to you.  Take the worst pain you've ever felt.  Imagine that you live with that non-stop.  Never-ending and that's all you have to look forward to then take away 95%  of the people that have been in your life.  Because that's what happens when you become disabled and can't get out and about to socialize - your friends and even your family do a disappearing act.  You're no "fun".  You're "never around".  You "never want to go out".  FALSE.  We would love to be around.  We would love to go out.  We are simply incapable.  So people just abandon you.  So you're trapped in a pain-filled hell mostly alone. 

Welcome to our world.