Hey hey hey hold up I’m not dying here
Ah yes I know many of you can relate to the million times we have heard doctors say “there’s nothing we can do for you , all we can do is keep you comfortable.” I know I always look around the room thinking they must be talking to someone who is terminally ill because last time I checked I’m not going anywhere.
For me it’s frustrating, it’s frustrating on the aspect of I have a genetic chronic disease that seems to sabatoge my life, it’s frustrating because I have chronic pain, not a fan of painkillers but I live in a state that has yet to get on the medicinal marijuana movement. I can’t take Nasaids because of kidney issues, but at the same time I am cockblocked by the new rules for prescribing narcotics and put on all these medications like Lyrica and I’m still waiting for that to work while I pay $60 a month after using the coupon card for this medication, yet damn it’s cheaper for pain pills with my co-pay. Then in order to take the painkillers I have to take zofran and phenagren so I don’t throw up the medication to treat the pain.
I’m frustrated because we get sent to all these doctors who have no clue really what to do with us and those who do well I am on a 2 year waiting list to see a specialist and I finally got into the Mayo Clinic but I am waiting 3 months to actually see someone and it’s a 6 hour drive from me and I have to stay for 4 days.
As for the doctors we see while waiting just to treat our symptom want to continue to inject us with stuff known to break down the connective tissues and ummm well I know you doctors sometimes ask me to spell my disease but last time I checked my connective tissues are already compromised so why would you want to make it worse and inflict more pain for which I can’t get treatment for because of the opioid issues. It’s like a dog chasing there tail here, we never really get anywhere with this disease.
My wrists are rigged with wire, my legs with pins , plates and rods, not sure what they are trying to do, however my body is like me non compliant and it just reverts back to its natural state. We like challenges me and my body, we like to ummm bend the rules, test the limits here.
So here I am after a fun 2 hours of physical therapy in an ice bath calming the burning inside my body thinking about how I can get on American Ninja Warrior or dance with Phillip Chbeeb, or Matt Steffinina all decked out in my white carbon graphite shells I wear to protect me from me. Looking like a bionic mama killing it on YouTube in an epic choreographed dance bringing awareness to EDS and showing what makes us special, what we fight for, and how we earned our stripes, and to never let this disease define our lives. Because how else am I too deal with the stress and frustration with this disease and doctors and literally show them “hello I’m here, I’m fighting, I’m not giving up so stop giving up on us.” And umm Matt and Phillip I’m free when you are!!!!
