Waiting Games

A quote from someone as something to ponder: "“My uncle committed suicide last May and I am still full of questions. The preacher at the funeral said something that really resounded with me. He said people that commit suicide are fighting a constant battle. You never know how many times they won, how many times that they were at that low point and battled through. You should never remember them for their last action but for all those times they won.”

     By 2014 the Canadian government was expanding its medical marijuana program, slowly but surely. I already had a steady prescription for marijuana herb and cannabis pills. I started thinking about supplementing that with edibles, because I was falling asleep quickly but not staying asleep. The edibles stay in your system far long than vaporized herb. The government hadn't started selling edibles through their licensed producer yet, so dispensaries were my only option. These shops were technically illegal, but the police did not start enforcing those laws until recently. Unfortunately I live in the suburbs outside Toronto and all the dispensaries were downtown. I called the first dispensary that appeared on google and asked them if the prescription on the marijuana bottle is sufficient. They said it was, but after I spent an hour driving down there they said they need a prescription on paper. I simply went to a different dispensary 30 seconds away and never looked back. To minimize the trips back and forth I bought chocolate edibles in big bulks, so they gave me a small discount. It was very sketchy to get hundreds of dollars from the ATM and have to walk up the grimy narrow staircase. I still wonder if they got shut down yet. Since I need to use marijuana every night to fall asleep, we bought the world's best vaporizer. It was called the Herbalizer. This actually saves money in the long run because I have to lose less herb to get the same effect. https://www.herbalizer.com/

    It's hard to remember when it started, but my sleeping situation worsened due to a new problem: waking up in the middle of the night to pee.  I couldn't tell if that was what was waking me up or if it was my pain waking me up which then makes me realize I need to go to the bathroom. To try to find out if there was a problem with my bladder the urologist I started seeing did two very invasive, painful tests. The first was urodynamics. This is a study that measures the pressure of the bladder. This was negative, as that has more to do with incontinence. The other test was a cystoscopy, which was one of the most painful experiences of my life. I'll spare you the details, but if you want to know how that works feel free to look it up. It lets the doctor actually see the structure of the bladder, and it was also negative. This led the doctor to believe that perhaps due to my weak connective tissue my bladder stretches out more easily giving the sensation that it's full when it's not. I tried a bunch of medications for it but none were effective. To make matters worse, this doctor made his appointments with me at 8:30 am and more often than not didn't see me until 3 pm. That's not an over-exaggeration, I once read the entirety of A Fault in Our Stars in one day from start to finish while waiting in his waiting room.

    Over the winter break of 2014 my family went to Cancun, Mexico. My brothers and dad went scuba diving, which I of course could not do, but I was able to go jet-skiing with my sister and parasailing with my brother. The parrots I got to hang out with were a bonus. It was the first time in forever I actually felt relaxed, probably because I wasn't too fatigued to actually enjoy it. Over the last few years I've had several people interview regarding my health issues. The first was a project made by a classmate which you can view here: https://soundcloud.com/aaron-g-95/why-me-a-radio-feature

    After that the Wasser Pain Clinic at Mount Sinai Hosptial interviewed me as part of a study on how vibro-acoustic chairs can help people with Ehlers-Danlos Syndrome. It had already proven to be helpful for those with Fibromyalgia in a different study. It was a big cushion that you leaned on your chair and then lied on. It had different modes for waking up or going to sleep and sent different vibrations based on each mode. At the same time it played music in combination with the vibrations. I found it helps a bit with knots in the back and maybe made me sleep a little more soundly. It's very hard to tell though. Then a group of developers at the Sick Kids Hospital wanted to make an introductory video to an app they were working on. The app will be called ICanCope, and it is a resource for youth living with chronic pain. They got me and a few others to take part in the videos which I saved for future viewing. They thanked us with a $15 gift card. Lastly, just a week ago a musical student at Guelph working on a project for her master's did a 1 and a half hour interview with me on how I use music to cope with my disability. As of now I'm still waiting for the ICanCope app to launch.