Neurology Visit

Today, I had an appointment with a neurologist. I spent most of the day yesterday typing up an abbreviated summary and timing myself as I went through it. It was about a 20-minute talk. Surprisingly, the doctor listened to the whole thing and even asked some questions. She was willing to refer me to the Mayo Clinic or the Cleveland Clinic. But, she wants to take her shot at it first. So, she had an EEG done and scheduled me for an EMG of my legs with a follow-up appointment for the first week in January 2023. Honestly, that is probably a bit late given how things are going. But, I feel like I have zero control. Our healthcare system is simply broken.

Today, I'm cold, fatigued, and somewhat nauseous. I know I have to keep going, and I will, but it is not getting any easier at the moment.

Yesterday was the first day in months that I didn't read anything from my Kindle reader. I've read 30 or so books since May when I joined Kindle Unlimited. There are a LOT of great LitRPG books out there for free on the service. I was happy my wife was home from a conference, but I couldn't focus on the book. My son took his PSAT and he said he was "confident." That makes me very happy. However he did, I know he feels like he did his best, and that is all I ever want for him - to be able to say he did his best. That is what I am trying to do with my life, right now. Sometimes, it is a lot harder than other times.

I don't write much here because I really try to forget about it all and making an entry is a large amount of time spent wallowing in my condition. I get reminders all the time, from when I put on my much too-large underwear, to when I walk into my closet with all the clothes that no longer fit, to when I feel any of the various pains this thing inflicts. But, those are usually momentary and don't involve significant self-reflection. In short, I can gloss over them in my day and forget about them. But, putting my thoughts together and typing them out is hard. I want to put my thoughts down. I think someone should know what this is like, but it is a bit of self-torture, sometimes. Getting the original documentation done around everything I've been through before this year was good. But trying to keep up with all the shit that has come my way this year has been impossible. It has been too much, and in the times when things have been good or at least not bad (which admittedly has been at least 50% of the days), I don't want to think about the bad.

I don't know who, if anyone, will ever read this, but I am glad I have someplace to vent. These things I write down can't really be said to anyone. Who wants to carry that load? A therapist cannot relate. I don't need vague statements and someone to ask me questions about things I just told them. I'm quite capable of thinking things through. I wouldn't want a friend that wanted to weigh me down with all of this, either, so I wouldn't lay it all on a friend. Family I see daily. I don't want them to think about how bad I am every time they see me. I want them to have a chance to live their life without me weighing them down. I do share some with my wife and my mother, but only because I don't want them blindsided by things. So, in short, writing this is my therapy, as painful as it is to confront at times.

I tried to figure out where to put this, but it is kinda unrelated to this post - my son's One Act play won their competition getting two 99s and a 92, plus the award for Best Tech. I'm so proud of him for all the work he puts in. He is in the advanced choir, drama, does musicals and plays, plus AP classes and two community college classes - ALL during his Junior year of high school. He routinely is at school (Thanks Life360 App) until after 7pm for these activities, and he still gets his schoolwork done.

Also, I read something yesterday about how to handle terminal illness and it said to continue making plans. I have not been able to do that this year, that was a mistake, but I did make plans a week ago for my wife and me to get out of town for a couple of days this weekend. The forecast is for rain, but that is fine with me. I would not want anyone else by my side for what is to come. I really have no clue what each day will bring or how things will play out - but I know she will be there. I made a deal with her that I would give 100%. I won't wallow or avoid responsibilities. It motivates me. I can be feeling like shit, but knowing I made that deal - I go do things as expected, have and make family meals, and keep on living as normally as possible. I think making that promise was one of the best things I did for my sanity and for her.