The past week has been full of ups and downs. I’ve been insolation because I was sick over the weekend. I think it was just a 24 hour bug because by Monday I was fine. The family asked me to stay in isolation. I haven’t left my condo since last Sunday. Not unusual for me though.
This weather can kiss my royal ass. It’s -30 again today with the wind. It’s also groundhog day, so maybe I’ll have to pop in a couple of Bill Murray movies like Groundhog Day to honor. That means spring isn’t that far away. I hope.
Last night was a pretty bad night. A lot of things went through my mind. I cried. My 45 birthday is coming in a few weeks. My body is literally falling apart and the other night, my rib popped out of place. This happened for the first time about ten months ago. It’s the worst pain I have ever felt, even worse than my knees popping out. That usually causes me to fall – which is likely how I fractured my spine. My left shoulder is pretty messed up too.
I have severe hypermobility joint syndrome. Have had it all my life. My family doctor of more than 15 years dropped me as a patient in the middle of the pandemic because she was sick of all the paperwork my office needed. She didn’t think I should be on disability leave. She told “move out of this hell hole province” and “go get a job waiting tables.”
Like what? I can barely stand sometimes and do my own dishes in the kitchen.
Supportive communities changed my life
I recently joined a support group for Ehlers Danlos Syndrome. I did some research. Took a Beighton test and passed with flying colors. I reached out to the genetics department at the UfoA. They put me on a one year wait list for an appointment.
Meanwhile, here I am, symptoms getting worse. Daily dislocations, migraines and GI issues. I’ll spare you the details. Every day is something new. I can’t walk in the winter for fear of snow and ice.
Out of sheer misery and desperation as my 45th birthday draws near, I reached out to the doctor last night for advice. I asked if he knew any local family doctors I could get in touch with who about hypermobility. To my surprise, he responded this morning.
“It does sound like hypermobility. Probably hEDS (which I have suspected). It may even be osteoporosis as CCD can cause that too. You need a DXA (bone density scan) ASAP and treatment.”
Lordy. Let me tell you. I saw that email and burst into tears. Happy tears. Someone has FINALLY listened to me. Someone is finally willing to order the right tests and get going on appropriate treatment.
For too many years, I heard …
You need to lose weight. You’re too fat.
You need to change your diet. It’s killing you.
You need to take more magnesium. It will stop the migraines.
You can’t get a scan. It’s too much radiation for you.
You need to move out of this shithole province – from a doctor. It’s killing you.
You need to go wait tables or something. You’re too young for disability.
And now finally. I have someone who will listen to me. He’s a children’s doctor but it makes sense. I’ve had these complications since birth. I never had a chance. This disease is also why I can’t have children. It’s too high risk. It’s also why I choose the single life. It’s just easier for me. Lonely sometimes, but easier for me.
And oh my god, guys. I can’t thank all my new readers enough. I reached a 1,000 followers this morning. After three years of blogging and venting. You all made this happen. You inspired me to keep going.
Thank you for letting me use this space to vent and share my experiences with you.
I’m so happy I could cry and hug each and every one of you.
(I’ll write up a Q&A getting to know me to celebrate. Let me know if you have any questions below)