Mad World

                                                                Mad World

        Out of all the songs that really get to me Mad World was both the first and the saddest. In 2010 when I was on the verge of attempting suicide it was the straw that broke the camels back. If I never came across the song for the first time that day it wouldn't have prevented that attempt but probably would have slightly postponed it. I was already 99.9% of the way there but the depressing song was the only thing I felt I could relate to since at that time since I was seen as having a mental illness rather than physical one and couldn't connect with others suffering like I can now since I never got a real diagnosis. I overdosed with the pills shortly after it ended and so now I of course associate the song with that traumatic event, meaning it can really affect me despite the fact I'm no longer miserable though I still of course have moments of feeling down.. Let me again acknowledge my interpretation of the song is not how the artist intended. Here is the link: https://www.youtube.com/watch?v=4N3N1MlvVc4

All around me are familiar faces, Worn out places, worn out faces: This makes me think about the constant unproductive doctor appointments and the scowl of my teachers when neither understand what I was going through. You see the same unhelpful and accusatory people that were meant to help and support you telling you to try harder.

Bright and early for their daily races, Going nowhere, going nowhere: I was not on any effective medication at this point, so my insomnia was as bad as it had ever been. I forced myself to get to class, a monumental effort when you are that exhausted and in pain. I then fall asleep in those classes; I was bright and early for the daily races that were going nowhere. On the days I wasn't able to get out of bed, my family resorted to dipping my feet in baggies of water filled with ice to wake me up. It got me up and then I of course promptly fell asleep in class again. When I was on morphine I attended more classes but couldn't absorb any of the information, going nowhere.

Their tears are filling up their glasses, No expression, no expression: Tears filling up their glasses is pretty self-explanatory. Lots of tears were shed. Then the morphine dulled my mind and made me apathetic, while also hardly improving my pain. I was zombified, having no expression.

Hide my head I want to drown my sorrow, No tomorrow, no tomorrow: I wanted to drown my sorrow and ensure there will be no tomorrow by dying.

And I find it kinda funny, I find it kinda sad, The dreams in which I'm dying are the best I've ever had: When you're suicidal for an extended length of time you become unable to think about much else. It dominates your every thought and emotion, even when asleep. I would dream of dying, of the pain ending. And it wasn't a nightmare.
            
I find it hard to tell you, I find it hard to take, When people run in circles it's a very very
mad world, mad world: Exhaustion from a rare complicated medical issue can cause a vicious cycle. You need to be able to articulate what's wrong to get proper help, and the more exhausted you are the more crucial the help is. However, the more exhausted you are the harder it is to explain what's wrong. It certainly felt like the doctors and I were running in circles. Bouncing me off each other as each gave up trying to categorize me.

Children Waiting for the day they feel good, happy birthday happy birthday, Made to feel the way that every child should, sit and listen, sit and listen: My pain started when I was infected with swine flu a few days before my birthday. Instead of cerebrating my birthday as I normally would I was instead mourning another year of unresolved pain.

Went to school and I was very nervous, no one knew me, no one knew me, Hello teacher tell me what's my lesson? Look right through me, look right through me: Out of every time period in your life that chronic pain could start the very worst is probably right before high school, as it was in my case. Pain and exhaustion made me miss a lot of classes and when I was at school I was usually sleeping in the hallway or the classroom. I sorta stayed friends with the people I had been friends with in middle school but we hung out a lot less. The larger problems were the people I didn't know who just knew me as the weird kid who always missed class and slept in the hallway. Then when I was hospitalized I even drifted away from my old friends. My social life has only been rebuilt recently when I finally made it to Guelph. The teachers didn't understand what was going on as so just saw me as the kid who never paid attention in class and claimed he was sick but looked healthy. They refused to differentiate me from any other healthy student, looking right through me. 

Therapeutic Music

                                                           Therapeutic Music

       As is common among those with disabilities, I find certain music quite therapeutic. There are a few select songs that particularly evoke strong emotions, for varying reasons. The thing that connects them all is that I find a way to relate them to myself and my experiences. When I associate a specific song with a certain memory listening to the song almost makes me relive it. This can have both positive and negative outcomes, but even when it comes to negativity its cathartic to listen in the same way that crying is. On days when I’m already in a lot of pain, I listen to a song, and relive the memory. It can even make me cry on occasion, especially when I am exhausted from a bad sleep. With all this in mind, I’m going to share the song that currently sits at the top of this list of several songs, The Humbling River. For me it’s not even so much about the quality of the music as it is about the ways I relate to them. I’ll write down the lyrics and explain how they’re connected. Here’s the Youtube video link for the song: https://www.youtube.com/watch?v=O0YxeTjFn70

               

                                                      The Humbling River

Nature nurture heaven and home, Sum of all and by them driven: My motivations are primarily centered on both my family my friends, their support, and simply who I am.

To conquer every mountain shown, But I’ve never crossed the river: I’ve persisted through challenges large and small yet there’s still so much I’m still unable to do.

Brave the forests, braved the stone, Braved the icy winds and fire: This represents the physical side to my pain, especially the fiery burn I often get in my shoulder.

Braved and beat them on my own, Yet I’m helpless by the river: This depends on your perspective. What I mean by that is that I have massive support from friends and family but at the end of the day I’m the one who has to face the pain, no one can share that burden and so there’s again so much I can’t do.

Angel, angel what have I done? I’ve faced the quakes, the wind, the fire. I've conquered country, crown, and throne, Why can't I cross this river: “What have I done” references my suicide attempts and is also a good description of my current thoughts on those attempts in hindsight. What have I done?

Pay no mind to the battles you've won, It'll take a lot more than rage and muscle: It doesn’t matter what I’ve accomplished in the past, securing the future requires new tactics. Before I received my diagnosis I was considered crazy. Before deciding to end of my life I tried to escape my situation in two ways: muscle and rage. First I tried muscle, meaning I thought maybe my pain would go away if I simply got strong enough. I would quite literally run around the block over and over again in a desperate attempt to strengthen my legs. I did this for about a week and it only made my pain worse, so I gave up on that and turned to the only thing I had left: Rage. When I was at my worst point I had a breakdown of fury mostly aimed towards my doctors. It involved screaming and pounding on the ground. My dog came up to me to see what was wrong so my parents quickly moved her away. Simply witnessing this action blew all the fight out of me. I would never in a million years hurt me dog even in that state but the fact others were worried I might even for a second was depressing, and so rage turned to sadness. Obviously these incidents weren’t particularly helpful either, which is when I turned to overdosing.

Open your heart and hands my son, or you’ll never make it over the river: This represents the need for myself to open up my experiences to others, partially so they can help me deal with any future unpleasant experiences. I must also be willing to accept help to make it through this.

It'll take a lot more than words and guns, A whole lot more than riches and muscle: I tried using words to describe my pains with my doctors so we could figure out how to manage them. That also didn’t pan out how I had hoped. As for the gun, as I mentioned in a previous chapter, that was what I decided my next method to die would be. Thankfully I never went through with that plan.
We also tried throwing money at the problem. While there are services crucial for functioning I have to pay for, in general money will only get you so far. I need weekly therapeutic massages to keep my leg pain under control, and insurance only partly covers this. We paid $1000 for a pharmacogenetics test which ended up being totally worthless. The test couldn't explain my medication problems. There's a chance that pharmacokinetics might give us some answers (why I need to take so many pills for such a small effect) but that's  $10 000. We're going to wait to see what the EDS specialists at the new clinic recommend. We tried paying naturopaths, osteopaths, and physiotherapists. Only the physiotherapy made any difference, but in strength, not pain. I need medical marijuana to fall asleep and this is incredibly expensive since I need enough for every night, not to mention the vaporizer. Money has mostly allowed me to maintain the status quo but it can't make my pain any better. 

The hands of the many must join as one, And together we'll cross the river: I won’t survive if I go it alone. I need the help of friends and family and shouldn’t be afraid to admit that.

Nature, nurture heaven and home, And together we'll cross the river: As long as I maintain these motivations and work together with others, much more can be achieved.

           With so many emotions brought out by re-experiencing such strong memories it can sometimes be overwhelming, but I’m determined not to run away from my own memories. It’s a step away from Post-Traumatic Stress Disorder, where sounds or sights associated with traumatic memories can trigger flashbacks; the main difference being that my memories aren’t immersive in the same way as an actual flashback. It’s more about reflecting on my choices and horrible experiences rather than actually fully reliving them.

It'll Take A lot More Than Words and Guns

     A symptom I suffer on occasion that is especially debilitating is costochondritis. "Costochondritis is an inflammation of the junctions where the upper ribs join with the cartilage that holds them to the breastbone, or sternum. The condition causes localized chest pain that you can reproduce by pushing on the cartilage in the front of your ribcage." It feels like something is strongly compressing down on your upper chest. Not only is it quite painful, it makes it hard to breath. That's what I consider the most debilitating part even though this specific issue is not dangerous. When you can't breath properly you always start to wonder, "what if it's something serious this time?" I'm pretty sure this only started happening a few years ago, which makes me worry about additional complications arising over time. 

    I have always been worried about my pain suddenly worsening one day which is why I thought up contingency plans to make myself feel more comfortable by knowing there would always be a way out. At my worst point in 2011 I looked up the least painful ways to commit suicide. Overdose seemed best, but I already tried that twice. Guns seemed like the next best bet but how would a 'depressed' teenager get one? Worst comes to worst I decided I'd jump from somewhere high. That changed in 2012 after a trip to Arizona. I got to shoot a gun for the first time and was tempted then and there out of fear I'd never get better and might continue to get worse. I thought it might be the best opportunity I'd ever get. I decided that if I really degenerated to that point I'd find a way back to Arizona and do it. I don't think I've ever said this to anyone because giving away these plans would have robbed my of my only potential escape. I was miserable back then because it is when I was judged for health issues out of my control. After I got my diagnosis I was no longer miserable, but I certainly wasn't happy. The first few months at university had been the first time I'd been truly happy since my pain started, and I eventually became comfortable enough to reveal these secrets. There were several reasons for my newfound happiness. Since I'd finally made it to university I had a social life again. I started to have more good days than bad but this is only because I'd been sleeping in ridiculously late (on certain days I woke up at 5 pm) along with taking dangerous amounts of pills. I was in the middle of what might have been my favourite book series of all time (there's around 45 books in the series and I'm halfway done and so am ridiculously immersed.) I'm obsessively excited about my appointment at the new EDS clinic. Because of my unique diagnosis confirmed by a skin biopsy there was a good chance they'd test the newest treatments on me, they told me as much over the phone. I was glad I'd probably be able to go back to a summer camp I'd been going to since 2007 for what was probably one last year. Lastly, I'm trying to contain nerdgasms from the prospect of upgrading my computer. I played video games far less often than i used to due to school studies and being in the vicinity of friends but I was looking forward to a little me time over the summer. For the other nerds out there, I'll be able to play in 4k resolution (far better than HD) which allows for truly next-level occasional escapism from pain. This happiness presents as me singing to myself on occasion and having more a spring to my step. I was also really proud of myself for being able to manage getting around campus on a regular bike. I thought I might need to buy an electric one or even a scooter but that had not so far been the case. Biking isn't easy however, it's still very painful, especially when going uphill. Still, it is far less painful than walking. 

    Recently I became ecstatic because I discovered that since September the medical community has been actively working on a gene therapy cure not just for Ehlers-Danlos Syndrome, but for my type specifically (Hypermobility Type.) I was under the impression that they wouldn't start working on a cure until they finished tracking down all the genes that cause it. Even then, I assumed they'd be prioritizing a cure for the vascular type, since half of the people who have that are dead by their 40s. I was wrong on both counts, but I was obviously not complaining. Essentially, the cure would arrive a lot sooner than I originally thought. In contrast to these joyous developments, I was getting more and more stressed about my medication overdosing issue. It didn't help that several people in an EDS group I joined kept trying to convince me I was going to die from the amount of quetiapine I took. I had written a post asking for new medication ideas that I haven't tried yet. When I mentioned my dosage they kept insisting I'm in serious danger. I told them I posted asking for medications, not advice, and that they should let me know once they're done medical school (my many doctors do not think I'm in danger of anything other than diabetes.) A typical high dose of quetiapine would be 300, which is what I used to be on a few years ago. I now take 1950, but the lethal dose for quetiapine is 30 000. Admittedly, I was on many other medication that can suppress breathing. I've been doing this for a long time though. I was hoping the upcoming EDS Clinic appointment at the end of April will be able to give me some answers as to why I need to take such high doses of medication to get such a small effect.

Lying Awake

Something to ponder: The loneliest people are the kindest. The saddest people smile the brightest. All because they do not wish to see anyone suffer the way they do.

    Whenever I try to make some sort of concerted effort on something like reducing the dosage of the medications I'm taking to safe levels my functioning is badly affected for an extended period of time. This can lead to what might be considered moments of (mental) weakness though I don't think that's giving myself enough credit. I think I prefer the term "moments of vulnerability" where I don't just have to contend with pain but with exhaustion. In these moments I can't think clearly and I'm more reckless and uninhibited. This is just a fancy way saying I say stupid shit. At night there's a third issue to deal with, sedation from meds. This is when I'm at my most vulnerable and why I tried to stay off social media after taking my pills. It's also why I sometimes see a message and won't answer until the next day. It protects myself from myself.

    On certain days it's easy for me to realize just how much my mood depends on how well rested I am from the night before. For example, on a day where I got bad news about an exam I took I was still singing and had a skip to my step because I had energy levels a lot closer to a healthy person. The opposite is also true, on days where I'm apathetic about something I was extremely excited about the previous day just because I had as shitty sleep that night. Something you might not think about is that feeling rested is such a rarity for me that it's all it takes for me to be cheerful. There was even a day where I felt great but knew I had to wake up early the next day which I knew would be so uncomfortable I just wished I wasn't alive for that specific day. A time travel machine would work wonders for those days. At the end of that specific great day I actually cried a bit in pure dread of what tomorrow would be like. Part of the reason I was feeling better than usual that day is that I had finally gotten back to my normal weight again after throwing up so much for so long. At one point I had dropped down to 114 pounds, and eventually clawed my way back to 130. 

     The worst part about my insomnia isn't just lying in bed awake for hours, it's not being able to think about anything other than the fact I am totally screwed not just for that night but the following day. Typically, if I'm lying awake for hours, that means I tried to go to sleep too early. In terms of being able to fall asleep it's not just overdosing on pills that makes it happen. I also have to be legitimately sleepy to sleep through my pain. Some of my pills take a long time to work, so a lot of planning goes to when into when I take them each night. If I take my pills too early and am lying awake then it's not like I can just get out of bed and try to get some work down while I'm awake anyways. The pills are too sedating. If I take them too early then I still lose all productivity for that night since I can't work or sleep. Of course having a shitty sleep also means I won't be productive the next day either. This kind of trap was the main reason I was unable to take more than 2 university courses at a time, at least for the time being.

   
    At the beginning of the winter 2017 semester I contracted either strep throat or the flu. This would not be a huge deal for a normal person, but if you happen to have an already excruciatingly painful condition the experience becomes a catastrophe. At first I was pretty sure I had the flu because my throat wasn't so bad at the beginning. I went to the campus clinic and they gave me tamiflu to be safe because of my fever/typical flu symptoms and the fact I have EDS which puts me at higher risk for complications. Then things got worse. I couldn't eat anything without immediately throwing it back up. My throat got worse and worse, to the point where I completely lost my voice for days. I mean that literally, I was totally inaudible. Whenever I get sick, even with just a common cold, my pain gets significantly worse. When I'm very sick it gets far worse. On average I would rate my pain an 8/10, but understand I have developed a very high pain tolerance and that average is only accurate when I am inactive. If I walk or stand for more than a few minutes the pain goes up to 8.5. As I learned, if I have the flu/step throat, the pain goes up to a 9. Realize that I didn't dish out 9s lightly. The last time my pain was a 9/10 was when I tried to kill myself in 2011. It was so agonizing I literally could not stand up without using my arms for support. That's only happened a few times since my pain started in 2009. Aside from my leg pain being horribly debilitating my throat kept getting worse. This made us suspect strep throat over the flu and so my sister's friend drove me to the emergency room along with said sister. My lack of voice prevented me from speaking to the doctor so we got some lozenges and sucking on them helped slightly so that my sister was somewhat able to translate what I was trying to tell the doctor. He didn't swab me but suspected strep throat so he prescribed antibiotics. I kept taking the Tamiflu just in case he was wrong. Over the next few weeks my pain started to recede back to "normal" levels. Being at university with a chronic illness is rough. Being at a university when you have both chronic and acute illnesses at once is simply the worst. It's lucky my sister is at the same university as me because when I can't even stand unsupported it's obviously hard to take care of yourself.

Graduating Into Torture

   Throughout the last couple years of high school most of my classes were taught by a teacher I had built up a good rapport with, especially since some of the classes were private. She genuinely cared about me and teaching and was one of the ones who were outraged when the veterinarian during my co op said he thought I could do more physically. After that I was part of a 9-ish person class with lots of people who don't give a shit academically. To be honest I was the only one keeping the teacher sane in that class. When I finally reached the graduation ceremony teachers were getting up to introduce students for certain awards. Eventually she got up and started talking about a student who she admired and who worked very hard and didn't let his health problems stop him yada yada. I obviously quickly realized she was introducing me but she broke down in tears before she could get to saying my name. I quickly got up to hug her to give her time to recover, and that worked. She was able to finish the introduction and handed me the award. It reads: "Award of Distinction Literary Arts and Humanities. In recognition of your dedication and growth in the study of literary arts and humanities with respect to both academics and motivation towards personal success." I also got a $3000 scholarship to go to Guelph for achieving a 90+ average. I accepted Guelph's offer and started preparing my health situation for university. This period would be my only opportunity to try out a new sleeping medication called Xyrem, which is literally the synthetic version of the date-rape drug.

    My experience with Xyrem was pure hell. Since it's the date rape drug it's extremely dangerous and easy to abuse. Getting our hands on it took a solid year, and I had all my hopes riding on it. It simply didn't work. I learned that even this supremely powerful sedative isn't enough to allow me to sleep through my pain. Since it suppresses your breathing I couldn't just raise the dose willy-nilly. We started at an extremely low dose and eventually tripled it but it didn't make much of a difference either way. To try Xyrem I had to reduce the rest of my meds and since Xyrem didn't work that essentially equates to a first class ticket to hell. I used a Fitbit to track just how awful a typical night was. Posted below is two readings from the same night. My sleep was split up into two segments. Note that the bedtime is not when I fall asleep but when I go to bed. It took me many hours to fall asleep so I ended up with a few hours of sleep each night and I woke up at 5 am. Eventually my sleep schedule got so distorted I was pretty much nocturnal. Sleep deprivation amplifies pain and amplified pain causes sleep deprivation. To make matters worse I kept throwing up because xyrem tasted absolutely awful. Seriously, it might have been the worst thing I ever tasted. It wasn't a huge issue at first but as we raised the dose I had to gulp down more and more of it. Since I took Xyrem after my other meds (you're warned to to got to bed immediately after taking it because it's supposed to knock you out quickly) when I threw up that means I was throwing up all the other medications I had just taken. This means I had to retake them which caused a medication shortage crisis. I tried adding sweetener to the Xyrem but I still threw up more often than not, the sweetener tasted like shit too. It was a veritable cycle of torture. It was the third most stressful period of my life at the time, after the obvious ones. It lasted weeks. As I mentioned before, the levels of medication I was taking before starting Xyrem had a high risk of resulting in diabetes This is why I tried everything to get Xyrem to work. I was heartbroken when it didn't. I waited a year to get tortured for a few weeks with no positive results? Apparently so. We stopped Xyrem and re-raised the other meds. I had run out of time, university was starting.

 It's hard to have a social life when all your friends have gone off to university and you're a 21 year old stuck in high school. A big part of the excitement was knowing I'll be seeing some old friends and finally having a great opportunity to make new ones. In terms of accommodations, Guelph gave me everything I asked for.  A private room with no stairs to sleep in, the ability to take exams later in the day, getting a medical parking spot closest to my residence, and extensions when necessary, permitting the use of my medical marijuana. To start off I only took 2 classes, a history and political science course. My plan was to be a political science Major. I was hoping to go up to 3 classes next semester but constant sickness ruined that. I had 3 main goals: get decent grades, take safe levels of medication, and wake up at a reasonable time. Unfortunately doing all 3 of these goals at once is impossible so I temporarily gave up on the waking up early goal. This resulted in me sleeping in sometimes as late as 6:30 pm . However, I was successful in lowering medications for a little while. The medication that can cause diabetes (quetiapine) was lowered from 2000 to 1350. My doctor told me I should be safe if I can get down to 1200. The reason I had to take less courses in university than high school is that much of my leg pain threshold and energy is taken up by living on my own. I did my own laundry and learned some basic cooking. I have to pick up my own medication. When I lose something I sometimes have to look for it alone. No one can drive me to class if I'm feeling crappy, and having to get around campus to get to class and food joints is far harder than a 10 minute drive to high school. All of this takes legwork and increases pain levels.  I primarily used my bike to get around campus because it was far less painful than walking since it's low stress on the joints. I'd say it was 80% less painful, which means it was still significantly painful. There are inevitably places I can't bring a bike which means lots of walking. It only started snowing a few days before I left Guelph for winter break but those few days were awful. Biking in a snowstorm results in a lot of falling down and a lot of windy snow clouding your vision. I started considering getting one of those scooters for those with disabilities. I needed all the downtime I could get to rest my legs so as soon as my situation improved I would raise my course load. There was real hope for that because I was on the priority wait list to see an EDS sleep specialist in Washington and booked an appointment to see a neuropsychiatrist to evaluate my medication situation. This news lifted my spirits greatly and there was a real chance of my life changing for the better in a significant way.

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.