I managed to start a YouTube Live Stream as I was between seizures. I thought about doing it as I felt the seizures starting, but didn’t quite get all the way loaded, as I also took the time to clear my computer off my bed. So, when I came to and recognized that I wasn’t done seizing yet, I finished getting the Live Stream activated and then fell back into the seizure, which lasted another hour-and-a-half.
I felt ok after, a bit loopy, but back to functioning enough to finish getting ready for bed and try to get to sleep again. Yeah, wake up just so I can go to sleep. It was around 10 PM when I woke up from the seizure. Something happening outside woke me up around 1 AM, and I didn’t get much sleep after that.
Next day I woke up feeling more ok than I usually am after a long seizure spell, but too exhausted to go out during the day. Which was very unfortunate, because it was one of the nicest weather days we’ve had so far this year, and I was really looking forward to a warm Saturday on the beach. Even if my car was currently working, I don’t think I was stable enough to drive and definitely not enough to walk the mile each way through the ups and downs of the coastal trail.
Also, it’s been two months now, and I’m still waiting to hear back on Disability, I’ve checked the SSA website and that still lists as Processing. Not unexpected to me.
After two years since moving to Humboldt, I finally had the hearing for my Disability claim that I’ve been working on since 2014 on this round, and since 2006 in total.
It’s taken so long, in part, because I did not have doctors who understood what was going on. And also the constant changing of doctors. I didn’t have a set diagnosis, but this time we do: Conversion Disorder and Psychogenic Non-Epileptic Seizures.
With my not being physically able to remain on task due to anxiety and my body reacting in myoclonic seizure-like convulsions, the vocational specialist flat stated that there would be no jobs within the US that I could perform. So this gives me some hope that it may finally get approved after these 12 years of fighting.
I know when briefly browsing this site, my other websites, perhaps even my YouTube, it looks like I can do stuff, but when you look closer at the dates of posts, or if you could watch my trying to type this, having had three episodes of being spasmed flat to my bed for a few minutes each time, so far this post, it starts to make sense why I can’t actually do this professionally, for someone else. I can put stuff together for me, but a client or employer requires deadlines and reliability that I am not able to meet. And it’s taken me 11 days to post this.
I was able to be put in touch with a local therapist so as to make me more likely to be able to make my appointments, and that if I can’t, she can potentially come to my house.
It was a typical first appointment, discussing the overview of my life history: ADD, Depression, Anxiety, and the “Seizures.” We discussed plans for going forward with Disability, and what we can do in the one month left before my hearing.
We’re going to be focusing more on the triggers (the anxiety sensitivity) and looking at “Conversion Disorder” as the main focus rather than the seizures, since my “seizures” are not epileptic.
I’m feeling hopeful for the help she is willing to give.
I had a couple small spasm episodes, and when a siren went down the highway (1/3 mile away?), my body locked up and I went into some convulsions, but mostly my muscles locked in a weird pose, and it hurt a lot. I give the episode a 5/10 on my scale (cover photo episode was a 9/10, really bad, but not the worst).
Last week I started seeing a new psychologist, finally got one after nearly two years in Humboldt County, and now I’m already done seeing her.
I could not get stable enough to drive. There’s just no way. I’m barely standing.
I had to cancel less than one hour before the appointment. Doctors, etc, usually like to be notified 24-hours beforehand for a cancelation, but I can’t do that.
My health is so variable that I can never guarantee that I will be able to make an appointment, arrive at a gig (with my photography), be able to stay for the whole gig, and definitely not for a steady, regular 40-hour job.
It’s also a long drive to do every week, 40ish mile round trip.
She’s going to help me find someone in my town that can be more flexible in meeting location.
Gist: my health prevented me from being able to make a doctor’s appointment in the last few hours prior. My health is too unpredictable to schedule activities.
(This was actually not written Live at the event, but over two weeks later, on the 31st of March)
Since October 2001, I’ve had a seizure disorder, I’ve spent many years dealing with my body and with doctors, and most of it has been frustrating.
As we enter into February 2018, I’ve decided that I need to get everything organized, share my stories, in hopes of it helping someone else, or even helping me with either getting Disability or support from others.
My plan for this will be to think back to as many events as I can remember and distinguish and write about what those events felt like, what was going on before, and what was going on after. I will also discuss interactions with medical personnel, the good and the bad. I will also share advice that has been shared with me, things that I have yet to try, and things that I have found to be successful.
It will certainly take quite a while to post things, and due to current seizures, and attempts at Living when I’m not convulsing, I might not update regularly, but I will try.
Thanks for visiting my website, check out my posts and if you can Donate, I would be very grateful. Large donations will be rewarded with original stickers or 8×10 prints from my photography website.