Mid-life crisis and 1,000 followers

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.


Disability Life

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.


1,000 followers

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)


If you haven’t followed my blog, please help me reach the next milestone, to 1500 readers!

8 Comments Add yours

  1. Bloglifenstuff says:

    I don’t know what it’s like with your disability. I struggle socially. I talk too much. I say stupid things at the most in opportune times. I always feel like people think I’m pretty freaking weird. It’s led to several blogs getting deleted and I want to withdraw myself. But the truth is, I can’t.

    I read posts like this and it’s my nature to share care and concern. Which I think people find weird because it’s rare and honest. I’m really sorry you’re going through what you’re going through. I’m never good with words and what I’m saying sounds cliche… but someone does care. And you’re not alone.

    Now I’ll stop bothering you now 😂

    Liked by 1 person

  2. I totally get that. I’m the opposite. If my family didn’t use the group chat, I’d probably go for days without speaking to people. I’m not a social person by nature and so am selective of which parties, events I go to. That was one bonus of the pandemic!

    Liked by 1 person

  3. Bloglifenstuff says:

    I try hard to be social. It’s not easy. My childhood was just me and my parents. School was torture. Selfish ungrateful non understanding brats that picked on me relentlessly.

    The crazy thing is that I want to be social. I’m very selectively social. For some reason on here I can talk almost endlessly about anything. Most normal bloggers aren’t used to this and one told me yesterday I was overwhelming. I felt like deleting again… but I haven’t.

    Liked by 1 person

  4. Bloglifenstuff says:

    I’ve been thinking about this conversation. I feel bad for talking so much. I know you’re probably not up to it much so I’ll try to keep things to a minimum.

    Like

  5. Honestly, you’re better to chat with than the jerk I just blocked. I don’t mind it.

    Liked by 1 person

  6. Bloglifenstuff says:

    I’m sorry about that. I don’t know why some people think that’s acceptable. I’ve had my share of rude and highly questionable people.

    Your blog resonates with me. I enjoy it. I feel like I bother you. And I feel like I have to have an invitation or something to follow you. 😂 I’m weird.

    Liked by 1 person

  7. I don’t get it. The blog is mostly single. Like most people get the point by now. What a creep.

    Liked by 1 person

  8. Bloglifenstuff says:

    I’ve had women tell me I’m handsome though they never seen me. Tried to go to old posts to start private conversations and email me… and I don’t know how they got my email. I fully understand!

    Liked by 1 person

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