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.

Moves and Counter-Moves

    There were specific experiences that made me remember things I'd rather not remember. For example, opening a new pill bottle will take me back to my extended stay in the hospital. That signature sterile smell gets me every time. Hearing a sad song I listened to a lot back then causes a similar response. These haunting memories are yet another instance of me feeling like my problems keep getting compounded. It's bad enough these things had happened to me at all but now every time I take new pills I have to relive the memories. It often makes me feel like I'm playing a game of chess against my own body. It attacks, I make a counter-move. It doesn't let me sleep, so I take sleeping pills. I sleep a little better, but then the pills have side effects. I take other pills to deal with the side effects of the original pills. But then uh oh: the pills that you just spent 2 years perfecting the dosage of stopped working because they built up tolerance. So I take more pills to get the same effect. But uh oh again, now I'm taking too many pills. My new pills start interacting with the old ones to the point where I could have died (remember my shpeel on Serotonin Syndrome?) That made me have to stop those pills and start over, while I was at summer camp I might add. Years later, I'm taking so many pills that it puts me at risk for diabetes. Uh oh there too because university is right around the corner so I have to either take the pills and go which risks diabetes or don't go for yet another a year and fall even further behind all my friends. Moves and counter-moves, just like a game of chess. Only one thing's for certain: whoever wins in the constant chess struggle between myself and my body, it always ends with pieces of me being knocked over.
 
   Sometimes it feels like there's a god who gets sick pleasure in reminding me it could always be worse. One of the more painful occurrences I put with with are tendon slips. They come and go from time to time and while it's happening I can feel the little tendon ball in my wrist moving around out of its proper place. The last time it happened I tried reading a book to distract myself. Unfortunately, moving my arm even in the slightest possible manner brought the pain back in full force. I dropped the book and hit my head on my desk trying to pick it up. I finally resigned to myself to the shitty situation, put the book down, and closed my eyes leaning back into my chair. Even that was denied to me because as, I'll, closing my eyes voluntary resulted in them twitching non-stop. That was a sudden development. One day my eyes just start twitching like that, triggered by seemingly nothing. I saw a neuro-ophthalmologist who said he couldn't explain it but that it was benign and not dangerous. I never found a medical professional who could offer a hypothesis. It goes away temporarily after I use my medicinal marijuana so I assume it's some weird side effect from that.

     In June of 2015 I was still mopping up my last few high school credits. At that point I still wanted to be a veterinarian so I did a co op at my local veterinary clinic. I got to assist with surgery, meet the clients, and inject vaccines into the cat and dog patients. I had a great time, learned a lot, and got along well with the staff... except for one incident. I managed to find the actual message I sent a few days after this incident happened so I'll just quote it here.
"So I had an incident at the vet clinic a few days ago. I asked the veterinarian about his thoughts on me being one in terms of my health issues, and he said he didn't think I would be able to work in a clinic but there are plenty of other tasks for veterinarians to do. So that was fine, but then he when on a tirade about how he doesn't think I'm pushing my limits in terms of my legs. I said I've had this for 6 years but he persisted, essentially saying I could be trying harder. That hurt to hear, so I replied by saying something I'm not sure i should of said. I told him that the pain is so bad I had attempted suicide in the past, and he said people don't care. This is true but I wasn't saying it to get sympathy or pity, I said it defend myself from accusations of laziness. He said sorry for being blunt and I said I appreciate his honesty. I told my teacher and guidance counselor about it and they reacted more aggressively than I expected them to, saying it was harassment and discrimination and asking me if I want to pursue legal action or stop the co op. I said no because it is a great test for me to be working closely with someone I don't like and also just because I don't think it warrants an alarmist response. Both the veterinarian and I have put it behind us and essentially have pretended it never happened, so it's not impeding my learning or working in any way."

This should never have happened but I was happy with the way I handled this situation. I eventually decided working in a clinic was unrealistic for me and consequently turned my aspirations into becoming a lawyer. 

   Due to the fact that I seem to need four times as many medications as an average person to get the same effect we did a $1000 enzyme test that proved absolutely freaking worthless. It showed that I should be metabolizing the medications normally, at least from an enzyme perspective. The theory was that I didn't have the proper enzymes to digest the medicine. As the test showed, this is not the case. To this day we still have no real explanation as to why I need so many pills. It's known that people with Ehlers-Danlos Syndrome are both less affected by medications yet have more side effects from them. To know more than that I suppose I'll just have to wait for future advancements in medicine to find out what's really going on here.

To Queen's Park

   It was the spring of 2015 and I was still trucking my way through finishing high school. I busied myself with other things as well, such as seeking out others with Ehlers Danlos Syndrome. I got a tip from the neurologist who diagnosed me that every few months people gather at a Toronto library for a support group meeting. I was extremely excited to meet others going through the same thing as me and was hopeful that trading tips would help improve my situation. Interestingly enough, I was the only male attending these events. This is funny in a way because I faced a similar situation at summer camp, being the first boy to go for my age group. Whereas that was just happenstance there is a good explanation for the women with EDS. First of all, women are naturally more flexible and so it's more obvious when they have EDS. Then there's the fact that women are simply statistically more likely to seek out a diagnosis and treatment for their health issues. Lastly, the disease is just slightly more prevalent in females statistically for whatever reason. The plot thickened when I realized that everyone had some sort of trigger for their chronic pain in the same way Swine Flu triggered mine. The difference is that for most of them the trigger was childbirth, since that puts so much stress on your body. The rest suffered viral illnesses in the same way I did.

   Everyone at the meeting was pretty excited when a guy showed up and they immediately got to work on integrating me with their organization called EDS Canada. They asked if I'd be willing to create and administrate a Facebook group specifically for men with EDS. The idea was providing a safe space for men to express their difficulties and discuss gender specific questions and concerns. And just like that I became an advocate for both EDS and invisible illnesses in general. I built the group and it now stands at 20 members. That might not seem like a lot but that's almost every male within the EDS Canada community. Apparently we are a rare breed.

  I had helped in a small way but I certainly didn't stop there. I thought: what else could be done to advance the collective interests of all those with this debilitating disease? I realized I was in a somewhat unique position being the son of a Member of Provincial Parliament. The position of an MPP has inherent power that can be used for good or ill. Something all MPPs are able to do is read out statements within the legislature bringing aid and recognition to various causes. Working together with EDS Canada we wrote a speech that my mom would read out in the legislature. Virtually everyone on all sides of the political spectrum were happy we were there and applauded us for fighting the good fight. Some of my companions with EDS were moved to tears during the speech because they were finally witnessing the recognition of their struggles by the government. Little did we know that the best part was yet to come. Months later the provincial government announced plans to open an entire clinic for people with EDS! This is exactly what we needed as patients since the vast majority of doctors don't know or understand EDS in any substantial way. For most (as my doctor dad and brother can attest) they were given a single lesson on EDS in medical school and it was never followed up on again. What we need is specialists who can advise regular doctors on matters concerning EDS. That's exactly what we got. For those within the EDS community this has development has been viewed as a direct result of the statement in the legislature I planned. This means a lot of people are giving me much of the credit for the clinic opening, which is the biggest honour I can imagine. Later I would become one of the first patients to visit the new clinic. I couldn't have asked for a greater reward. Here's the link to the news story: http://www.ctvnews.ca/health/ontario-to-set-up-clinic-for-people-with-rare-disease-eds-1.2797357#_gus&_gucid=&_gup=Facebook&_gsc=kcXsPEK

Itty Bitty Cysts

    The neurologist who diagnosed me offered me the chance to participate in a case study to test the efficacy of what he called a vibro-acoustic chair. You put it on your chair and then lie your back on it which lets you feel the soothing vibrations. As a little side feature the chair also plays music in time with the vibrations. There was a more energetic mode for mornings and a more relaxing mode to be used before bed. The music didn't really accomplish anything and I didn't expect it to, but the vibrations helped undo the knots in my back and aids me in falling asleep. The chair had already been tested and deemed effective in the treatment of a similar condition known as fibromyalgia. This made them want to compare the results to those in people with Ehlers-Danlos Syndrome (AKA me.)

    The same neurologist refereed me to a physiotherapist who sort of specializes in managing EDS. He has 16 other patients with EDS all with varying types and severity. (He claims I'm on the severe side but he's seen worse.) He told me one hopeful story of a girl with EDS who was out of school for 4 years because she was plagued with horrible fatigue and pain. This is a similar situation to the one I'm in, and eventually her fatigue symptoms simply worked themselves out. We got to work right away on strengthening the muscles that surround my joints. My joints would never be able to stabilize themselves, so the most effective method is simply getting your other muscles to do the extra work. Trouble is, this causes the muscles to be very tight so he also pressed on many trigger points to help solve that even just a little bit. I have to say this is one of the most painful things I have had to go through. The muscles are always so tight that they're pressing on all kinds of nerves and so when he pushes on my shoulder the pain radiates all the way into my head like a splitting headache.

    We tested my walking ability to give us a point of reference for improvements in the future. I had a horrible stumbling gait and heavily leaned on one side, but it didn't stay that way for long. Week by week we documented my progress and now my gait has normalized except during localized pain spikes. It wasn't just during appointments that I did physiotherapy, it was something I worked on every day. Eventually I progressed to the point where my physiotherapist decided we should no longer focus on joint strengthening and should instead simply do our best to manage whatever symptoms pop up. This means entire appointments are now dedicated to pushing trigger points on my shoulder which still pops out (subluxates) constantly. Once my family got a pool in our backyard I was encouraged to swim as much as possible since this type of exercise is very easy on the joints. My legs were too bad to do effective kicks so I pretty much stuck exclusively to breast-stroke and back-stroke. I would never stop swimming because of muscle fatigue, it was always the increasing levels of pain that stopped me. Meanwhile I couldn't get the idea of my Tarlov cysts growing and causing future problems out of my head. It would be even worse if I forgot about this though because it might one day explain new symptoms that could pop up if it grew.

The Nose Knows

    I was very hopeful that the medical marijuana would work. You can't help but hear all these stories of those with chronic pain extolling the virtues of marijuana, and so I knew I had to try it for myself. The process didn't end with the prescription though. The doctor who is a canabanoid specialist insisted on raising the dosage very slowly. We started at 8% THC (street purity is around 23-27%) and at that dose I felt absolutely no benefit. At 16% I started feeling improvement and with that encouragement we raised once again to 22% THC because we'd rather I use more marijuana and less of other prescription drugs.

 


















     Shortly before I was prescribed weed it was time for me to work on improving my sleep through what is called sleep restriction therapy. The doctor said to imagine that you're putting peanut butter on bread. The longer you do it for the more it spreads out and weakens. To counter this I would have to set my alarm at 8 am every day and was not allowed to go to sleep regardless of how tired I was until late at night. Yes, this strategy made my sleep cycle more efficient, but it was not able to make up for the lost total hours of sleep. This dragged on for months and was truly one of the most torturous segments of my life. I didn't feel even anywhere close to well enough to hang out with friends. I was constantly missing family dinners. Even video games were denied to me again because I was simply too tired to play. For the most part I watched TV which of course I felt too crappy to enjoy. The doctor also dictated that I should partake in light therapy. This sounds nice but in reality I had to buy a fucking giant, expensive lamp and shine it full in my face for an hour every morning. The idea of this was to force my body to quit using Melatonin (the horomone that makes you sleepy) in the morning and to encourage it to release it in the evening when I'm going to bed. This helped move my sleep schedule to more normalcy, but the continuing poor quality of sleep left me unable to function. Then came the marijuana. It helped me fall asleep so we could orient the other medications to focus on staying asleep. I was finally well enough to go back to school!

    I was back at the new small private school (classes starting at 11:30 am instead of 2 pm) which felt great but that is not to say it was all smooth sailing from there. You see, while I'd been dealing with my renegade body parts I was neglecting attention to my nose. Yes, my nose and I have been through a lot together. About six years ago I was at summer camp and was playing a game called "Mosh Ball." To give you an idea of what we're talking about here, this game is a combination of football, kickball, and maybe basketball; I forget the rules. Anyway, I was chasing after the ball and someone on the opposing team was doing the same. The problem? The problem was that he was a councilor twice my height and weight. We both dived for the ball at the same time and my face collided with his shoulder, breaking my nose for the first time. Later that summer someone accidentally jabbed their soldier into my nose accidentally while dancing. It didn't end there either, at winter camp someone running through the hallways accidentally smashed a door into my face, breaking my nose again. That third time I simply reset the nose myself. So you see, my nose is a trooper. He was a little crooked, sure, but that just added character. Unfortunately I eventually realized my breathing at night was problematic due to the way the nose broke. Why is being able to breath through my nose so important? Well, at night I have to take a lot of sleeping medications which all have the side effects of drying me up. Opening my mouth to breath makes this worse and I would wake up at night with my tongue feeling like sandpaper. I was sent off to a nose doctor who then preformed septoplasty surgery to fix my deviated septum. Recovering from that surgery was another extremely uncomfortable period of my life, because my nose was constantly bleeding and stuffed with gauze. This meant my nose was now completely blocked which of course made the dryness issue fifty times worse. On the bright side my breathing slightly improved and my nose looks much better now.

Slang Saviour

   I remember one summer at camp well before I got my diagnosis I was sleeping in like I did everyday because my sleep was so shitty. While that was going on a couple of friends decided to wake me up by pouring shaving cream on me. It was more than just annoying because when I don't wake up naturally it essentially means the rest of my day will be awful. I was angry enough to chase after them but with my legs I of course couldn't catch them and then the pain made me regret running at all in the first place. If I remember right I got my revenge by putting shaving cream in their shoes, but it's just an example of something lighthearted that can be made worse by the situation you're in. I also remember being verbally jabbed at when I was lying down and listening to Eminem's Till I Collapse song but as that person's own health issues developed they understood why I did it. As my situation worsened though, I started listening less to Till I Collapse and more to Beautiful. The music I listened to depended on my mood and Beautiful is a depressing song. Speaking of my mood, at some point still before my diagnosis (we had no idea what was wrong) I reluctantly agreed to try another psychologist. She was probably the worst health care professional I've seen to this day. She literally gave me homework to do. They were little exercises where I answer questions and write about how I'm feeling. That's absolutely all she did. We never really talked. I don't think I saw her more than 3 times.

   I was finally 18, which means it was time to get my wisdom teeth out. The procedure went fine, though my jaw hurt as part of my joint issues since it's kept open for a long while while they are poking around. The interesting part is that the anesthesia for the operation got rid of my pain completely, temporarily of course. This was the second time since my pain started in 2009 that I was pain free even for just a few minutes, the first time being when I intentionally overdosed on painkillers and sleeping pills. It's not a nice memory to attach being pain free to, so I'm glad I've had more opportunities of respite. This occurrence would take place one more time, bringing the total tally to 3 occasions.

   Then it was summer, which means, you guessed it, camp again. This year was defined by one hectic, terrifying, stupefying, and nightmare inducing incident that we realized had occurred while I was literally stepping on the bus to leave for camp. I had been having severe stomach issues, a feverish feeling, strange nightmares, and irritability. It all felt too familiar, and so I eventually realized I was suffering from serotonin syndrome again! As you might remember, serotonin syndrome is a life-threatening drug interaction that occurs when you have too much serotonin in your system. We never realized that the medication I had started a few days earlier (the opioid Tramadol) had serotonin it as did the Mirtazapine medication I had been taking for months. Mix 'em together and you've got a real crisis, especially considering I was about to head to camp. Due to my familiar symptoms I looked up if Tramadol had serotonin in it and it did. We emailed my neurologist doctor who prescribed it asking what's going on and he confirmed it was serotonin syndrome. That meant I had to stop taking Tramadol immediately, which meant I would be going through opioid withdrawal for the beginning of camp. I was out of commission for a few days but thankfully my co workers were very understanding. This is a prime example of when you have "too many cooks in the kitchen," as the saying goes.

  At this point my sleeping problems were still completely out of control. We had managed to shift my sleep cycle to more normalcy (waking up at 11 am rather than 2 pm) but I was not waking up rested in the slightest. Sleep studies showed my sleep was very fragmented with multiple arousals (no, still not the sexual kind) and waking up earlier isn't helpful if you can't function while doing it, but then... it happened. The secret sauce, the holy grail, the blunt bomb, the dank dope, the hippie lettuce, the herbal refreshment the... the weed. Yes, since the Tramadol experiment was a fantastical failure we needed something new to treat my pain so I can do important stuff like maybe sleep and go to school. Since we had legitimately tried everything there is to try, he refereed me to a cannabanoid specialist. I had purposefully never used weed before because I thought it would help my case in getting a prescription to demonstrate I'm no stoner. The things I had heard made me pretty hopeful. Having something to deal with the pain at night so I could sleep would make all the difference in the world. Better yet, the side effects were almost non-existent, at least relatively so. This referral would be my first step in the newest journey of recovery.

Cysts and Sleep Cycles

   It was the summer of 2013 and that meant it was time for another year of camp. My sleeping situation was far less than optimal so this year I decided I would apply to be one of the Heads of Environmental Programming. Our camp had chickens, sheep and rabbits and we'd harvest the chicken eggs and vegetables as part of the job. The reason I chose this job despite my my love for having kids as a counselor is because the schedule is far more flexible and there's less legwork. I got a little stool that I would sit on while gardening and was less tempted to try to chase after kids. It still wasn't easy though, because sometimes I would sleep in all the way until 2 pm. To harness this we essentially said I was in charge of the gardens and animals in the afternoon and my co worker was in charge for the morning. With this system and my less stressful job I was able to get through the summer without too much difficulty. The only snag I ran into was getting stung by a wasp and then over the next hour realizing I was allergic with anaphylaxis. My tongue slowly started swelling in size and my throat started closing (according to the doctor, not just me.) The nurse used an EpiPen on me for the first and only time. Interestingly enough, the allergen tests I did afterwards all came out negative.

  Although camp went well, the following months did not. Not very far into the school year my sleep stopped becoming anything even close to resembling restful. No matter how long or how little I slept, I would wake up exhausted. I could either nap to feel better but make the problem worse or go completely insane from sleep deprivation. I tried both and neither worked. My doctor tried many things as well, alternating with every medication we could think of. Nothing even made a dent in my problems. It took hours to fall asleep, and when I did fall asleep I woke up throughout the night. If there's one situation where you're most likely to lose your mind it would be lying awake at night for hours for your sixth month in a row. Eventually my sleep specialist ran out of ideas and suggested I see a new doctor. Since I was seemingly out of other options, I did so and never saw that original specialist again.

   My new sleep specialist is considered a world class expert in the field. He took one look at me and decided we needed to do a total overhaul. I would put school on hold for many months while we worked on making my sleep restorative (this was one of several factors in how I fell so far behind my age group in school.) He said the way to do this is through sleep restriction. I was still waking up at 2 pm, so he told me to set my alarm for 8 am. Obviously this was very brutal for me and I spent many months exhausted as we worked on shifting my sleep schedule. I felt too crappy to spend my time hanging out with people. Even reading and playing games took too much energy. I pretty much alternated between watching movies and banging my head on my desk repeatedly. This was also a period of time where I drifted away from many friends. I learned that the phrase "use 'em or lose 'em" applied to friends as well. Eventually my sleep schedule did indeed shift. Instead of waking up at 2 pm without an alarm I woke up at 11 am. The problem was I couldn't function at 8 am but if I got up at 11 I wouldn't be able to fall asleep on time that night because the pain made it so I could only fall asleep when completely exhausted. My neurologist wanted to see if there's a fixable problem that is the source of my pain so I got another spinal MRI. The MRI showed some Tarlov Cysts which are associated with EDS. They were really small at the time and so unlikely to be symptomatic but they do often grow, which gave me yet another thing to worry about.



    Although the source of the pain wasn't a cyst, we were still determined to try to treat that pain. Unfortunately, all the pain pills we tried were either completely innefective or were slightly effective but had unbearable side effects. My neurologist wondered if medical marijuana might be a potential solution (relatively little side effects, good pain reduction) and so he referred me to another doctor who is a cannabinoid specialist. He would asses me and determine if I'm a good fit for a prescription of medical marijuana, something I purposefully have never partaken in before. I thought it would help my case if I didn't come off as someone who was already as stoner, which I wasn't anyway. It was something I wanted to try to help my pain for awhile and my patience had finally been rewarded.