I briefly touched on my fall in my last post but a friend of mine thought it might be good to go a little deeper. She really thought I should make a video but again, the video blogging, TikTok talks just aren’t really my style – even if I do think I’m pretty hilarious.
April 12, 2024 my life changed forever.
I woke up from a nap before my upcoming dispatching shift. I was walking downstairs to start getting ready and the world fell out from under my feet. I’m not sure exactly what happened, if I missed a step completely or if maybe I just slipped. The video footage from our security camera, that funny enough had been recording because we had just hatched a cocoon, shows me completely fall out of frame. As a disclaimer/reminder, I have cataplexy, so falling down isn’t exactly out of the norm for me. So, when I hit the ground, Daylen didn’t panic or seem concerned in the video, because my kids know not to overreact. However, this time was definitely different. After about a minute and a half, I stood up, sore from my hip to my head from the slide down the stairs and continued getting ready for work.
When I got to work, I was limping slightly and had a killer headache, but I was prepared to work my shift. Saving lives one transmission at a time. But then my vision started going black in my peripheral. Supervisors asked me to get checked out by medics, “just to be safe.” Apparently, my pupils were abnormally large, and people were a little worried about me. When medics arrived, they felt more comfortable with me being transported to the hospital for a better work up. Ambulance rides are nowhere near as fun as you would think they are, especially when they make you wear one of those stabilization neck braces. SO uncomfortable. After a CT and X-Ray, I was diagnosed with a mild TBI and told to follow-up with a TBI specialist in the next few days.
A few days ended up being four. I was told to begin PT, OT and speech and follow-up in two weeks. At that follow-up, it was another four weeks. At the next follow-up it went to another six weeks. My time off was becoming longer rather than shorter. And through this time period I was being seen at the Neuroscience center 3 times a week for various appointments. Until I slowly started being discharged from care. Speech first, followed by OT and finally PT. They weren’t able to help me. I was referred to a neurological ophthalmologist who specializes in vision rehabilitation. I was eventually discharged from that as well. She said she would bring my case to her upcoming conference and call me if anyone had suggestions for things we hadn’t tried yet…. she never called. I tried five different prescription glasses and ended up with contacts. My peripheral vision is still not where it’s supposed to be. And I can’t return to the job I love because I am still unable to be on a computer for more than an hour without taking a 15-minute break.
Disability was a nightmare to navigate. At the end of my short-term disability, I was notified that I would have to continue to pay for my insurance out of pocket through COBRA. The expense of that was more than I was making a month from disability checks. I came into work with every intention of quitting my job. It was the only feasible thing I could think of because I was making too much for assistance and insurance was going to make my pay null. Luckily, I have a pretty great place of work, because they offered me a temporary administrative position that allows me to have the flexibility I need for appointments I need to attend as well as the accommodations I need to be able to work at all.
But I still struggle. My eyesight has not recovered. Apparently, I hit my head just right in the occipital lobe that it caused permanent vision damage. I also continue to have daily headaches, which are currently being managed with Botox injections, and pain at the site of impact. I am and forever will be grateful that my side-effects/symptoms are, as they put it, mild. But this invisible disability can be so consuming at times. Doing my best to put on a smile and pretend that I’m not miserable can be exhausting. But honestly, the hardest part of all of this isn’t the constant pain, daily headaches, terrible vision or the fact that I will literally forget words in the middle of speaking… it’s that I found a job that I absolutely LOVED, and I will most likely never be able to go back to it.
My next follow-up with my TBI doctor is coming up at the end of the month. It will be just that though, a follow-up. And then, in June, I meet with my neuro-optometrist. That’s the appointment where I will most likely receive a letter stating that my condition is now “stabilized” and I will not be able to return to my work. It’s a devastating blow. I’ll update more when that time comes.
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