Zebra Seeking Spoons

So as if I didn’t already have enough symptoms and problems, lately I’ve been having these what I believe are seizures. I get tinnitus, start twitching really badly, and can’t hold my body up and I end up falling a lot. It’s been happening more and more and it’s really debilitating. I had an EEG done and I’ll get the results for this coming week, but I wasn’t having any symptoms while they did the test so I’m not sure if it will show anything. But I really hope my neurologist can figure out what’s going on because I’m not able to reliably commit to anything living like this. For example, I was so excited to go see a Broadway show tonight and I can’t go because I’ve had three episodes happen since this morning and I don’t want one to happen while I’m at the theater and cause a ruckus

Connective tissue disorders are just so evil because they impact every single part of our bodies from our skin to our organs and more. So I’m back to trying to find out a solution to this whole new twitching thing going on because it really scares me. I don’t wanna end up hitting my head or hit really injuring myself because I fall.

On the bright side, I got accepted into the advocacy training program for the chronic pain foundation! It’s 52 hour classes and then you pick a topic that has to do with Congress chronic pain and work on that for six weeks or so. I already know that I wanna focus on the way that a specific hospital in the area has been treating the private practice pain medicine clinic providers which is limiting the options for those who really need to see this one specific doctor. Unfortunately, he is leaving due to a lot of the bureaucracy and legality of the way things are working out. So they’ll be a period of time where I won’t have a chronic pain doctor which really sucks, but he’s working on setting up his own EDS and Pain Clinic when he has a chance and his plan is to eventually be able to get his old client based back. But learning more about how to be an advocate for Congress and an advocate for chronic pain will definitely help me be more of a forced to be reckoned with and determined to be heard when it comes to things like this.