Aging out of a system with no plan

I’m putting the cart before the horse as they say with writing this before I finish my series on finishing my “in to the past” series but this came up in Twitter so wanted to write it while it’s fresh.

I’ve not made it a secret that although my mom loves me she was never my advocate in the medical world of our lives. She wouldn’t keep notes, never follow up to go over what was next and as the years went, just pretending things were ok.

Although my early years were spent in hospital with many appointments and surgeries as I got older it seemed to drop off. My last major surgery was June 10th 1996 when they made a second attempt at trying to fix my jaw. After all of that was done that was it until I was I think 18 going on 19 when we got a letter requesting that we contact them. That started a whole new string of appointments as they looked to make a third attempt at fixing my jaw. This meant having to have braces as well as some teeth extracted. My Orthodontist was the spearhead of this attempt and recommended a different type of surgeon. Instead of a Plastic surgeon she wanted to go with an Oral & Maxillofacial surgeon.

I remember one of my visits with him talking about what procedure he wanted to do when another doctor came in. They chatted about me and my case and when the Dr I was there to see had said I had been through two failed attempts one of which was a fully supported bone graft the second doctors response was “that shouldn’t have happened”. That pretty much should be my life’s motto….cause if it hasn’t happened before or shouldn’t if I’m involved it will.

So I had some dental work done and braces put on. The Dr that was going to do this work ended up having his own health issues and my orthodontist never seemed keen on referring me to anyone else, things just kept getting pushed further and further in to the future. My mom never intervened and as I had a job at that point it fell to me to pay the 25% of my braces not covered by our universal healthcare. At this point you are probably wondering why I didn’t speak up. To be honest I don’t know, I was just along for the ride and trusted that everything would work out. They didn’t.

After almost exactly 10 years the braces were taken off. Or what was left at that point as over the past year or so bits had been taken off for various reasons. What I found out later was that my Orthodontist had just been treating me and hoping no one would notice that I was WELL past the age I should be and still being treated at a children’s hospital. Eventually the powers that be did catch on and what was left of my braces was taken off and that was it. I was given the boot from the only hospital that I had ever been treated at.

In most cases as a person with continuing needs if care does need to be continued you are set up with an adult hospital and there is a transition so that you are not just left in the dark. Or so I’m told that’s how it should go but I’d be interested to hear from others how it was for them.

Because I got the boot with no follow up and no plan I’ve just been living my life with what I have. I don’t have any kind of retainers so every so often I can tell my teeth are shifting and it hurts like heck. I have one jaw joint that I’m sure as I get older will start to fail and the only doctor I’ve seen since that was remotely qualified to help said no. He also couldn’t find anyone that would touch my case with a 10ft pole.

I’m the type of person who won’t rock the boat. I won’t go to a doctor for a sniffle or a bad pain that hasn’t gone away in months. I just never see the point. I’ve learned from doctors that there is never anything they can or will do for me so why bother trying. So for now I just keep on keeping on because what other choice do I have?

I can’t afford dental care even with my employer benefits (who has $1,300 to pay up front for a root canal?), I can’t afford the time off work even if they could fix my jaw and my body sure AF prob would just reject it anyways. In other words I’ve thrown my hands up in the air and I’ve given up. I’m 37 years and 3 months old, I’m exhausted.

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