Medication Multiplication

Something to ponder: "The so-called ‘psychotically depressed’ person who tries to kill herself doesn’t do so out of quote ‘hopelessness’ or any abstract conviction that life’s assets and debits do not square. And surely not because death seems suddenly appealing. The person in whom Its invisible agony reaches a certain unendurable level will kill herself the same way a trapped person will eventually jump from the window of a burning high-rise. Make no mistake about people who leap from burning windows. Their terror of falling from a great height is still just as great as it would be for you or me standing speculatively at the same window just checking out the view; i.e. the fear of falling remains a constant. The variable here is the other terror, the fire’s flames: when the flames get close enough, falling to death becomes the slightly less terrible of two terrors. It’s not desiring the fall; it’s terror of the flames. And yet nobody down on the sidewalk, looking up and yelling ‘Don’t!’ and ‘Hang on!’, can understand the jump. Not really. You’d have to have personally been trapped and felt flames to really understand a terror way beyond falling." - David Foster

    Although the Ontario Government agreed to open a clinic for those with EDS following the statement we made at Queen's park, there was still more for us to do at the legislature. The clinic will will have specialists that play an advisory role to the rest of the doctors, and there's so much research that still needs to be done. They said they will start research of their own later down the line. They've only found 50% of the genes that cause the Hypermobility Type of EDs. They won't be able to start working on a cure until those genes are tracked down. Article:
http://www.ctvnews.ca/health/ontario-to-set-up-clinic-for-people-with-rare-disease-eds-1.2797357#_gus&_gucid=&_gup=Facebook&_gsc=kcXsPEK

    In the February of 2016 I suddenly started throwing up very frequently. It was violent, and it happened many times a day. We assumed the cause was medication related but I'm on just as many medications now and only throw up about once a month. For awhile we ignored this, but then one day there was blood in the vomit. This can be very serious, so I went to a Gastroenterologist and they did a gastroscopy, which means they put a microscope down my stomach. They also did yet another ultrasound. I was knocked out for this, and I felt no pain for about 15 minutes after I woke up. I had my dad take a video to remember the moment, which I will post below. That was the fourth time since 2009 where I felt no pain. The gastroscopy found a a mallory-weiss tear in my esophagus, and the bleeding from that is what showed up in the vomit. My stomach hurt for quite awhile after, but the medication I was given eventually did their job.

    Eventually the vomiting came back just as violently as before but it had all been blood free. I almost couldn't go be a councilor at the camp which I had applied for months before. I had to lower my medications to avoid another esophageal tear, which brought my sleeping issues back to the forefront. At the same time the Canadian Government began releasing Cannabis oil through some of their licensed producers, so I started buying that instead of getting edibles at the dispensary. My cannabis specialist doctor has quite the grudge against dispensaries, as they steal business from him, someone who actually got regulated the proper way. He also warned their products are far less consistent and you don't really know what they put in there. Quitting dispensaries was fine by me, for I no longer had to go the sketchiest parts of downtown to get my hookup.

   It was around this time that I took up a new hobby: streaming video games. I had finally graduated high school and I was feeling pretty well yet still had to wait a little longer to move out towards my friends again in the fall. Streaming gave me some human interaction and entertainment. It was a challenge too, because you have to be constantly entertaining for people to subscribe to your channel and stay interested. Since coming to university I had no time for it, and when I stopped I had 57 followers. I'm told this is a good amount for only having a couple of months. One of them even reached out to me to have me voice-act in a machinima series they were working on on YouTube. We also co-streamed together, someone I'd never actually met. There were also some weirdos, like a 12 year old that got upset when I wouldn't let him stream with me. You certainly meet some interesting people, and establishing a consistent audience can be a lot of fun. I fondly remember it as a mentally stimulating hobby.

    When we went back to Mexico in 2015 something weird started happening to me. First I would feel hotness in an area of my body, then the skin turns into red dots, then it starts hurting in a strange combination of stinging, burning and itching all over an area, usually my arms or legs. It would sometimes never happen over an entire month, and in other instances it happens almost every day. We still have absolutely no theories on this except for again just blaming it on the large amounts of medication I'm on. It was in this time period that my medication situation became more out of control than it's ever been. A few years ago I was taking 200 mg of the sleeping pill quetiapine. This was enough to both knock me out and keep me asleep. Now, in 2016, I take 2000 quetiapine and yet that often even that isn't enough to knock me out. This isn't a sustainable situation, because taking such huge amounts of quetiapine puts one at risk for diabetes. An ordinary person taking a normal dose of quetiapine has a 5% chance of getting diabetes, according to my sleep doctor. No one can say what my risk is, because no one has seen someone taking this much of the drug. This is why I was desperate for alternatives. I looked online to find any new data on people with EDS solving their sleeping issues. I found a bunch of new medications to try, and an EDS sleep specialist doctor to contact. Unfortunately he lives in the U.S. We emailed him and hoped for the best. We found him through a presentation where he explained that many people with EDS have trouble sleeping due to adrenaline rushes. He recommended beta blockers to solve this problem. I went to my family doctor to discuss trying this out.
http://ehlers-danlos.com/2014-physicians-conference/Pocinki.pd

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.