It's been a year since I got my diagnosis and what a different place I am in emotionally! A year ago I had never really heard of Ehlers-Danlos Syndrome and had spent nearly 2 decades of my adult life wondering, wondering, wondering why my body reacts so differently than the norm and why I am always sick. Wondering why I have lost much of my strength & have arthritis at 39, why I can't go out in the full sun, why I've never been strong enough to work full time, why my skin tears easily, why i could never lift my own children, why I fight with persistent nausea and infections, why I can't walk across a parking lot anymore and why no doctor ever thought any of that was a big deal. All my bloodwork & testing always came back fairly normal except for an under active thyroid and a couple other vitamin deficiencies.
Chiropractors, physical therapists and family doctors always said I just needed to exercise more and patted me on the back on the way out the door "reassuring" me that everyone is in pain & dealing with something. I adapted thinking everyone was in as much pain as me all the time... until I was in so much pain that a simple trip to the grocery store or a few yard sales would lay me flat in bed for 3 full days.
I switched primary care doctors on 1.1.14 and I'm so glad I did. My new doctor diagnosed me on the spot with Ehlers-Danlos Syndrome and told me to look it up when I got home, do a little research and perhaps find an online support group. So I did. I started with quick EDS searches that pretty much explained nothing to me other than it was a connective tissue disorder... and I thought surely I needed a 2nd opinion since I have SO many other ailments, not just ligament & muscle pain. Then I found multiple EDS Facebook groups and asked to join them all. And after days and weeks of following and reading your candid posts, comments, questions, frustrations and pleas... I came to realize that Ehlers Danlos Syndrome is a complicated and cruel little bugger. Hard to understand at times even to those of us who have it-- it's no wonder that even doctors have a hard time diagnosing it.
As time went on, I learned more about the faces of EDS through those conversations on Facebook day & night. I began to realize... I fit the description exactly and every ailment I have fits into the EDS puzzle piece. I frequently got chills as light bulbs went off in my mind time after time as I began connecting the dots of my past. I realized, the diagnosis was right on and this group of people was where I belong... the support group forums were filled with people JUST LIKE ME! No one I'd ever known before was just like me!! Doctors have called me a "tricky case", a little frail, "never seen anything like it", "loosey goosey", a poor healer, or said I'm too young for this. One chiropractor actually said to me, "There's just a looseness about you that I can't diagnose without an MRI"... to which my husband, Paul, answered later... "I think he just did" ;)
I have never met a single one of you in my support groups face to face, but thank you, THANK YOU from the bottom of my heart for your voices... your beautiful voices. Over the last year I have typed in dozens if not one-hundred questions about the nature of Ehlers Danlos Syndrome and how it affects your everyday lives. I was in a really dark place a year ago, but each one of your responses to me was like a twinkling bright star against a black hopeless sky. One voice of hope would pop in, then another, then another... and for the first time in my life...I didn't feel alone anymore. It's an amazing feeling.
I can ask any random question that's on my mind and usually within seconds... there are half a dozen voices (or more) chiming in to help, encourage or inform. Where in the world can you get relevant medical advice so quickly from a live person and especially about a rare disease? I absolutely love my doctor... but you girls (and the few guys in the group) have taught me so much this past year. To me it's those voices that have turned me from a confused, isolated, crazed, desperate & panicked woman with absolutely no answers and no leads to a confused, crazed, desperate & panicked woman with a few answers and some friends who understand completely ;) We may not be able to be fixed, but we have each other! The motto fits perfectly, "Individually we stand loosely, but together we stand strong!"
Ultimately, I'm so thankful that God gives us what we need to get through and that he's allowed me to live in an age where we can be connected through the age of these fancy computers. What would all of our fates be if we lived with Ehlers Danlos Syndrome 2,000 years ago... or just 20 years ago? Maybe reduced to begging for food or committed to the asylum?? It's hard to know, but I am so thankful that God gives me what I need to get though each day... and many days it's you, the members of my support group. You have helped me more than you know and I have never felt so comfortable in my own stretchy skin.
As time went on, I learned more about the faces of EDS through those conversations on Facebook day & night. I began to realize... I fit the description exactly and every ailment I have fits into the EDS puzzle piece. I frequently got chills as light bulbs went off in my mind time after time as I began connecting the dots of my past. I realized, the diagnosis was right on and this group of people was where I belong... the support group forums were filled with people JUST LIKE ME! No one I'd ever known before was just like me!! Doctors have called me a "tricky case", a little frail, "never seen anything like it", "loosey goosey", a poor healer, or said I'm too young for this. One chiropractor actually said to me, "There's just a looseness about you that I can't diagnose without an MRI"... to which my husband, Paul, answered later... "I think he just did" ;)
I have never met a single one of you in my support groups face to face, but thank you, THANK YOU from the bottom of my heart for your voices... your beautiful voices. Over the last year I have typed in dozens if not one-hundred questions about the nature of Ehlers Danlos Syndrome and how it affects your everyday lives. I was in a really dark place a year ago, but each one of your responses to me was like a twinkling bright star against a black hopeless sky. One voice of hope would pop in, then another, then another... and for the first time in my life...I didn't feel alone anymore. It's an amazing feeling.
I can ask any random question that's on my mind and usually within seconds... there are half a dozen voices (or more) chiming in to help, encourage or inform. Where in the world can you get relevant medical advice so quickly from a live person and especially about a rare disease? I absolutely love my doctor... but you girls (and the few guys in the group) have taught me so much this past year. To me it's those voices that have turned me from a confused, isolated, crazed, desperate & panicked woman with absolutely no answers and no leads to a confused, crazed, desperate & panicked woman with a few answers and some friends who understand completely ;) We may not be able to be fixed, but we have each other! The motto fits perfectly, "Individually we stand loosely, but together we stand strong!"
Ultimately, I'm so thankful that God gives us what we need to get through and that he's allowed me to live in an age where we can be connected through the age of these fancy computers. What would all of our fates be if we lived with Ehlers Danlos Syndrome 2,000 years ago... or just 20 years ago? Maybe reduced to begging for food or committed to the asylum?? It's hard to know, but I am so thankful that God gives me what I need to get though each day... and many days it's you, the members of my support group. You have helped me more than you know and I have never felt so comfortable in my own stretchy skin.
