A Personal Note from bathrobeDFS


Hello, everyone.

First, I want to say thank you for all the messages yesterday. That kind of stuff means the world to me. I can’t thank you all enough. I’ve been having a rough time lately.

My son has been super excited about Halloween for months. He’s only 4, and this is the first one he can really remember. He got a Raphael costume a few months ago and he’s been counting down the days. Unfortunately, since I have my disability and can’t walk more than like.. 5 minutes at a time.. I couldn’t expect to see most of it, though my wife would gladly picked up the slack.

Unfortunately, on Halloween itself, there were severe thunderstorms in the area and Tornado watches. My town decided to postpone trick or treating until the next night. My wife is an emergency Vet that works evenings, so, with no warning, she struggled to find someone to watch her shift given no notice. Finally, another doctor agreed to come in around 7, giving my wife an hour to take my son around.

That morning, November 1st, she got a text message that the doctor who was going to have to look after her had the flu and couldn’t cover. My wife had to work the whole evening. And my son needed me. So I did what any dad would do – I got my walker outside and we went around for 90 minutes. After 10, I was ready to start crying and head back but with every house that had its light on, my son got more excited to run up to the door and yell trick or treat and get some candy from our too-kind neighbors.

I am still recovering from that. It will probably take me another couple of weeks for my pain to go back down to my normal, which is still agonizing. Because that’s not all, you see…

a couple of days ago, someone got a hold of me with knowledge of my symptoms and directed me to a rare neurologic pain condition that, literally, fit every single issue I was having. I have talked to my doctor briefly and she agrees, although I have to go in to discuss it further.

So, the good news? I may finally have an answer for why this pain has been so bad for the last almost 5 years.

The bad news? The condition I have can’t be cured, as far as they know. All they can do is treat it and try to lighten your burden. And, looking at the pain scale… right towards the top is a pregnancy without practice/training. One notch above that is an amputation of a finger or toe without anaesthetic. A couple notches above that? The pain I have to live with every second of every day for the rest of my life.

So again, thank you for the love and the well wishes. This is going to be a fight I will never give up on. I will keep working, keep hustling, and stay positive. I have no choice. I will have some bad stretches where I am unable to function and unable to provide normal content, and, while that saddens me to no end, it is incredibly heartening to have such an outpouring of people here, and elsewhere, tell me that it’s ok.

I love all of you. I mean that. I hope I show that to you every day, and anyone who doubted me when I first started this nearly a year ago understand that I have never been anything but genuine and honest with you all about everything, especially who I am and what I want