You'll Be In My Heart

It's been a while since I did a music post. For those who are new to the group, with these posts I take songs that have special meaning to me and explain why I relate to the lyrics. The song I chose this time is linked below.

                                                          You’ll Be In My Heart

https://www.youtube.com/watch?v=git6DCXSqjE

Come stop your crying it will be alright. Just take my hand, hold it tight. I will protect you from all around you, I will be here don’t you cry:
I see this song from the perspective of my parents trying to console me. This line says that I shouldn’t despair because we’re in this together.

For one so small, you seem so strong. My arms will hold, keep you safe and warm. This bond between us can’t be broken:
This translates to the fact that I may be fragile physically, but my will to persevere is anything but weak. I try not to think about myself as simply the runt of the litter who needs extra attention.

You’ll be in my heart, no matter what they say. You’ll be here in my heart, always: 
People who don’t know me may see the fact that I still haven’t finished undergrad as evidence of laziness. My family knows better and would never give up on me.

Why can’t they understand the way we feel? They just don’t trust what they can’t explain:
A disturbing amount of people believe my illness must be some sort of karma for being a bad person or even just for being an atheist. Some people can’t explain how a good person can be so afflicted, and so they mistrust the whole situation and are reluctant to give the benefit of the doubt.

I know we’re different but deep inside us. We’re not that different at all:
Our situations may be different but at the end of the day we’re all just trying to deal with the curveballs life throws at us.

Don’t listen to them, ‘cause what do they know? We need each other, to have, to hold. They’ll see in time, I know:
It’s unsurprising that people outside of your immediate circle will be judgmental about invisible illnesses and disabilities. One day an invention is going to be made where pain can be objectively measured and I’ll expect a lot of apologies.

When destiny calls you, you must be strong. I may not be with you, But you’ve got to hold on:

If your destiny is to struggle, your only choice is to be strong. Parents may not always physically be there, but their support never dissipates.

Always, I’ll be with you. I’ll be there for you always. Always and always. Just look over your shoulder:
Looking over your shoulder means looking backwards into your past. Doing this allows you to see what you’ve been through and more importantly: what you’ve overcome.

Ears, Teeth, and Virus, Oh My!

   Ears. We take em for granted. For something attached on our head, we don't pay much attention to them. We go to the dentist, we get our eyes examined, we get nose and lip jobs. But if you've ever experienced your ears getting completely blocked because your traitorous body likes to produce obscene amounts of wax... your name might be Mitch. What I'm trying to tell you is a few months back I lost virtually all hearing for a little while. Well, I could hear a loud screeching sound called tinnitus, so I had that going for me. I went to a party but had zero fun because I couldn't hear anybody. By this point Coronavirus was already on the move, so going to some random walk in clinic wasn't a very enticing prospect. I tried everything I could to fix it myself, with the help of my uncle. We put oil softener in and sprayed water into both ears numerous times, to no avail, so off to the clinic I went (wearing a mask.) The doctor tried spraying himself and that didn't work either. He told me to go home and keep using the oil for a few days to come back and try again. That didn't make any sense to me given my many previous efforts of doing exactly that, so I asked for a referral to go to the audiologist who happened to be in the same building. The walk-in doctor refused.

     Frustrated, I went to the audiologist anyway. Due to the lack of referral I had to pay them $60 to fix it... but fix it they did! They used this kind of sucking machine that just removes everything with brute force. As you might imagine, it was not a pleasant experience. My eardrums were already extremely tender from the previous attempts to clean it, but you can't put a price on being able to hear again! Basically every doctor says not to use q-tips but whenever I forget to this is inevitably the result. I've heard some others say the same, so oh well.
  In great news that did wonders for my general mood, my ketamine doctor indicated he'd be willing to consider more ketamine infusions every half year! Up until now I've only been able to get them once a year. After a few months it starts wearing off and after 6 months it's always completely worn off and so I get trapped in a cycle of entirely losing my functioning every 6 months. Due to that I had to completely drop out of school for the fall 2019 semester, which is the first time I had to do that since 2011 in high school. As soon as I got another infusion I went back to school next semester, so hopefully getting them every half year will break the cycle. Getting a summer infusion would also make going to camp again a possibility, but Coronavirus isn't playing ball when it comes to that this summer. Here was the letter I got from my ketamine doctor:

    Yes, things were going relatively smoothly. Until, oh no, disaster struck! Dun dun dun. I got a toothache. Quite a bad one, and for the first time. As I was quickly told, toothaches can be quite serious. If it's an infection and you leave it alone you could lose the tooth, or it can spread up your face into the brain. True story! I could barely eat anything. I couldn't see the dentist the next day because I was going to be asleep all day. Luckily, my doctor dad has a lot of doctor friends, including dentists, so that very evening I went to see one. They thought I had the very beginnings of a root canal infection. They said that having braces can actually cause damage leaving you vulnerable to infection, even 10 years after the braces come off. They also said such dental issues are associated with Ehlers-Danlos Syndrome. They gave me antibiotics and said it's very important I start them ASAP, so I went straight to a pharmacy. Not only did the pain interfere with sleep, but pre-sleep vaping was quite painful as well. Thankfully the pain got 70% better overnight thanks to the amoxicillin. My gums were still pretty sore so I went to my usual dentist to get x rays. The x rays didn't show anything but they said that a new infection could take months to show up.
    Throughout all this, progress on the documentary about my illness continued. In the end the fundraiser raised $3125 which is really awesome, so thank you to everyone who donated. Many hundreds of people are following us on Instagram. You can do the same here: https://www.instagram.com/_bend_or_break_/?igshid=1th8auxd73nst
Since I've been asked, no I'm not being paid anything for this. The funds go straight to the budget of the movie. It's purpose is to spread awareness, not to make money. Almost half of that money has been spent on hiring a professional contortionist to be featured in the film. I haven't seen this footage, but have been shown pictures which I'll post below. The sad thing is that the coronavirus pandemic has of course put these things on hold, but they are able to continue doing some final editing. Even if it was finished it wouldn't be released until film festivals are safe again.  Something really cool is that the University of Guelph heard about the film and shared it on social media! Didn't see that one coming. There's a few scenes left that they need me to film but I have to stay away from everyone.

    This pandemic is probably the scariest period of my entire life. Given that my chronic pain started
when I had swine flu in 2009, and my health is far worse now compared to then, who the hell knows what kind of damage this far more severe virus would do to me. The sleep deprivation I experience alone massively compromises my immune system. Whenever I get what's supposed to be a minor illness, like a cold, it shuts me down for weeks. This issue only gets worse the longer I go without my treatments. I can't get my ketamine infusions or weekly therapeutic massages, so my pain is spiraling out of control. It's usually 8.75/10 now and I'm back to being awake 26 hours everyday. Before I figured out that I suddenly needed to stay awake several hours longer than usual, I'd try to go to bed too early (too early for me meaning 22-24 hours of being awake). My sleeping pills would then wear off before I fell asleep and I couldn't take more. This meant I'd consistently sleep only 5 hours when my body needs 18 after being awake that long. Even after being more exhausted than I'd ever been in my entire life, I'd be awake 22 hours. This extreme deprivation led to me constantly being sick, which of course just made it all worse. You'd think that with such little sleep at least my REM % would be high, but it wasn't. In fact, it was so low that my fitbit wouldn't even give me an exact percentage, but it was around 5% when I need at least 20% in a super long sleep. If I got sick with coronavirus sleep would be even more destroyed because since it's a lung infection I wouldn't be able to vape to help sleep. That means if I got coronavirus I'd go back to being awake 33 hours everyday, which means my sickness would be very severe. Plus, my frequent vaping probably means my lungs aren't amazing. With the combination of being awake 26 hours, pain being unbearable, and having lots of risk factors for the virus, every night I get quite depressed. I have to vape for sleep but while I vape I think about how it makes me more vulnerable to the virus and all this shit piling on causes something like panic attacks. Usually I could read books to distract myself and help to fall asleep but my pain is so bad after being awake that long I can barely read now. I'm told by doctors in my family that I'd definitely need to be hospitalized so I can be given sedatives to allow rest to boost my immune system. Except, as you know, I don't absorb/metabolize medications properly so who knows what lengths they'd have to go to. As soon as the virus started spreading in Toronto I started thinking about fleeing to my family cottage in Peterburough. When my uncle who I'd been living with got sick after returning from France (which was being hit hard with cases) it was the last straw and I left. In the end he probably didn't have the coronavirus, but it's good to avoid getting sick with something else anyway. I've been here for almost a month now. At first I was mostly here by myself, but now that the legislature is closed my mom is here with me and taking good care of me. She's the only person in the world who's allowed to go anywhere near me until the danger has passed. I cancelled all my in-person doctor appointments. In other words, we're taking no chances when it comes to my safety.

    Before everything went to shit again I was able to finish my political corruption course. That means I've now done 11 out of 40 courses. Since my pain is out of control I contacted my family doctor to request temporary painkillers throughout the day. Unfortunately since my professor is overwhelmed with the coronavirus fallout I won't be able to start another course for a while. Basically, it doesn't matter if painkillers cause me to be out of sorts mentally during the day since there's no work I can do right now anyway. I plan on going off the painkillers as soon as I have access to my treatments again at the end of the pandemic. For now, the doctor increased my methadone dosage so I can use it up to 4 times a day.

Lastly here's a very important video on what it's like to have illness related chronic brain fog. It helps explain what may seem like strange behavior:
https://www.facebook.com/watch/?v=884440745322184

REM Troubles and Solutions

In the previous post I mentioned that a case study is being done on my sleeping habits where I have to fill out every tiny detail in an excel spreadsheet, everyday. Here's an example of what that looks like. Read the rest of this blog post below the picture.

     I suppose it was good I had something to keep me busy, because around this time sleep issues started to spiral out of control again. The longer it had been since my last ketamine infusion, the worse things got. My functioning dropped down to essentially zero; no matter what I did, I'd wake up with a complete lack of energy to concentrate on anything. On my best days I could continue writing an essay, but that wasn't at all helpful because I couldn't absorb any of the information from the textbook that I needed to have the knowledge to write said essay. Forget the pain, imagine trying to read a dense and complicated law textbook after you've been awake for 2 days straight. No matter how much effort you put in, you won't learn anything useful long term. In essence, I had to completely drop out of school for the first time since 2011 when I was at the hospital psych ward. This didn't exactly help my mood a great deal.

      My doctors sensed my desperation and started getting bolder. The next step was trying a new painkiller, oxycodone. We'd replace my codeine with it. My 2010 morphine prescription didn't go... smoothly (if you don't remember: it didn't help, turned me into a zombie, and so I took lots of it to try and end my life) so I was definitely nervous about trying another powerful opioid. But hey, at least that doctor has gotten to know me and trusted me enough to try this in the first place. This was, after all, the same guy who was initially reluctant to write me a letter for medical parking at university. In his response he simply messaged saying "exercise." He did write it when my dad insisted, and our relationship is great now. Point of clarification though, I had no intention of using the oxy during the day (unlike we did with the morphine.) As it was with every single one of my pain and sedating medications, it was meant to help me sleep. I can handle the pain if I can get rested sleep. Sure, using it during the day would help with pain, but the goal was to get me back to school and being high all day didn't seem conducive to that. I had seen a study on using oxy to treat EDS pain and it said it should only be a last resort. That it was.
   So, what happened? The oxy let me fall asleep 4 hours earlier. You may think that's a good start, but it also completely destroyed my REM sleep cycles. On the first night it dropped by half, 28% to 14%. My sleep doctor, who had nothing to do with the oxy prescription, was not surprised. As with most opioids, he was aware that it can really mess with your sleep, doubly so for oxy. I had one not horrible night where it hit 21%, but with that I can only work for a few hours in a GOOD day as opposed to the 7 hours with the 28% and 12 hours in the aftermath of the first ketamine infusion years ago. Things were mostly bad though, so it was decided that we would double the oxy dose. I was aware it could be counterproductive, but without any alternatives it was worth a shot. And then... regrets.

Fitbit Report

  My REM dropped down to 5% after we raised the dose. After a second night of this, I immediately stopped all of the oxy, and things went back to the also crappy "normal." Essentially, to function, I need REM to be in the 20s, to live I need REM to be in the teens, when it drops down below 10% you simply start losing the will to continue on. You can enjoy nothing, and are just killing time with distractions until something changes. Here's a quote I sent to my family while all this was happening a few months ago: "Now this is just ridiculous. I took double the OxyContin for the first time last night and look at how insanely awful my sleep architecture was. I only got 5% REM. That's by far the lowest I've ever gotten. On top of that I only slept 10 hours so that means I only got 39 minutes of REM and I was awake for over 2 hours of those 10 hours. It was mostly entirely light sleep at 62%. I can't overstate how frustrated I am. Not sure if I should even bother trying again tonight. This crap is why I'll have to drop at least one of my 2 courses. Compare all this to a good night's sleep where I get 28% REM after sleeping for 14.5 hours for a total of 4 hours 35 minutes of REM. And my light sleep is only at 40%. It's unbelievable." I put a lot of effort in manipulating sleep so that'd I wouldn't sleep through my cousin's wedding in Montreal, but noise in the house a few days before from Rosh Hashanna celebrations woke me up and ruined my plan. This caused me to miss 95% of the wedding. I went to the party for 20 mins, then left to go back to sleep. Meanwhile, we were messaging the ketamine doctor about trying another infusion, but he refused saying I'm already on ketamine nasal spray. The spray helps, sure, but it wasn't nearly enough. I felt like I was officially out of options. Such news would usually make me have suicidal thoughts but my family and friends had been so understanding that it made it far easier for me to accept my own limitations.
     I got back from the wedding and so was finally able to return to the family doctor to report the disastrous oxycontin trial and the fact that I had completely dropped out of school. There I learned I wasn't quite out of options, yet. Just like me he was dismayed at how rapidly I lost my functioning, and proposed a few things. We agreed that patches like a Butrans or Fentanyl patch were a bad idea. This was because for those meds to work you have to build them up in your system, and that means wearing them essentially the entire day. As I've already said, being high all day may be more comfortable pain-wise but wouldn't improve functioning. There were two other things to try. The first was changing my codeine pills to slow release forms. Maybe that would help me stay asleep. This meant we had to raise the dose, though. If that failed, we'd try Methadone, a more powerful opioid. Well, it failed. My REM dropped to 8% on the first night and on the second I was only able to sleep for 3 hours. Basically, it was almost as bad as the oxy. It was time to move on to merthadone.

    I told the family doc that we had emailed the ketamine doc again, explaining that I'd lost all my functioning and would be willing to stop the nasal spray if it meant getting another shot at the infusions. The family doc remarked that he thought the ketamine doctor was being too conservative. He said that ketamine only stays in your system for a week so if the nasal spray was preventing another infusion (and infusions have been temporarily amazing in the past) I should just stop the nasal spray for a week and do another infusion. He also didn't understand why the infusions have to be a year apart in the first place. He wished he could prescribe them for me himself. But then, a miracle. At the same time as I was starting the methadone the ketamine doctor responded saying he would in fact do another infusion, but this time it would only be over 1 day instead of 5 days. I'd stop the nasal spray a for a week before it since I didn't have any functioning to lose anyway. With the methadone my REM went back up to 25% but I didn't actually feel rested yet because I needed to stay awake as long as psychically possible to change my sleep schedule to make sure I made it to the hospital on time for the ketamine. A promising start, though. I was actually surprised because I had read that 3 quarters of those who use methadone reported clinically significant sleep disturbances. Figures that that ends up being the one that works best.
    It was time for my third high-dosage infusion. Since it was over a single day they went full throttle right away with the dosage. Balls were tripped. Keep in mind, this is done at a hospital under constant nurse supervision because the dose is dangerously high. If you've heard from anyone who's taken ketamine recreationally, you know you see crazy things, but picture that effect doubled. Sure you do get very high but there's more to it than that. Your vision gets high too, but more literally. I'd describe it as floating through the ceiling into different rooms where the outlines and walls are more like liquid than solid objects. As your brain gets higher, so does your floating consciousness. Each room is more vidid and disorienting than the last as the pain drops to 0 for a while. Then once the IV is stopped it slowly starts morphing back into boring old reality and the pain immediately starts flooding back in. As per usual, in my more lucid moments, I spend a lot of time cycling my legs as if on a bicycle just because of how novel it felt to move them without getting an immediate pain response. The doctor was nice enough to come visit me again, a pleasant surprise. Due to the rapid high dosage the nausea was awful, I couldn't eat or drink a thing for many hours afterward even though you have to starve yourself before each infusion.

    So how did it all end up? It worked! Again! I had my first decent sleep in half a year and right away started doing schoolwork again. It's indescribable how good that felt. To wake up and realize "Wow, I can think relatively straight for the next bunch of hours." Now on good days I can work for around 6 hours instead of 0, and on top of that I'm only awake 18-20 hours instead of 24-26. My REM was 29% and it was over a 16 hour sleep so it makes sense that I finally felt rested. The bad news was the alternating days issue theory still applies. For those who don't remember, this is the idea that I can never have 2 good days in a row. The better I sleep the harder it is to sleep the next night. Being awake longer incurs more sleep debt so it's guaranteed that I won't wake up rested the following day. This all happened 1 month ago from the time of this post and I still basically get a good day once every 3 days on average. It's kind of crazy that we're at the point where that's amazing, but there you have it.
    A few other things of note:
1. My sleep doctor had me start taking multivitamins because he thinks I have a hyper-metabolism. It would certainly explain why I need such high doses of medications to get any effect. Funnily enough, insomnia and hyper-metabolisms have been found to be related. I've also started GABA and Magnesium which some say can help with sleep.
2. They recently updated the diagnostic criteria for EDS. I meet both criteria but apparently only 15% of EDSers can say the same. Most do not meet the new criteria which you can view here. https://onlinelibrary.wiley.com/doi/abs/10.1002/ajmg.a.61459?fbclid=IwAR39ZNmFl-0OBRxkU3DlQJHD6hRFjMUrSpDV5lgOG8nQs1kdfd5ZFO3rE7I
3. The neurologist who clinically diagnosed me was just arrested for sexual assault of his female patients. Most people diagnosed with EDS are with females, I wonder if that's a coincidence. Read about it here: https://toronto.ctvnews.ca/mobile/toronto-neurologist-charged-with-several-counts-of-sexual-assault-1.4739409?fbclid=IwAR1VoDIhtTHxYHgjA-O0qf-9l_PRsm4kkTU1EGNJMx5wanWBRtHotD9NGXU
4. News of the documentary featuring my struggles with EDS is rapidly spreading! The head of the Ehlers Danlos Society, the largest EDS group in the world, posted our doc trailers on her instagram page and said she's very excited. She was the star of the EDS documentary where she ran an entire marathon (With big complications, don't try this at home kids.) Thousands of people have seen the teasers for my own doc and hundreds have commented their excitement. $2420 has been raised so far for making it as great as possible. You can see her marathon doc here: https://www.youtube.com/watch?v=wd6EojcCMDA

Emergency Room Traditions

     It should come as no surprise that working at a summer camp is extremely challenging when you have severe leg pain and sleep problems. Last year I was unable to go for the first time since 2007 because my sleep and heat allergy situation was too awful. Getting around these days is only made possible through constant usage of my bike. When I was a camper I didn't really have the idea to bring a bike with and tried to get by by scarfing down advil. Not a recipe for success, which is why I had to go home for a week's break most summers. I had to go home sooner than expected this summer too, but it was when the campers left so not the worst thing in the world. The problem is that even with my bike I'm extremely dependent on my weekly massages. I had a couple of appointments in Perth but the first one wasn't a registered massage therapist and so refused to push hard for deep tissue work. The second place was better, where they told me that the only other patients they use maximum pressure on besides me are those who weigh 400 pounds and so they need extra strength to get through the fat. Unfortunately, all of the massage places in the area started becoming fully booked. Not having massages brought my pain up to 8.75 out of 10 so I went back home for the summer just to get one. During these pain spikes, it's not so much that I want to die, because the consequences of that would be terrible. More so, even outside pain spikes, I wish I never existed in the first place. This quote does a good job of explaining this perspective:

      Most of my official job this year was essentially being a writer and actor. On most nights counselors would perform plays for the kids and that's what I worked on. I became pretty adept at adapting popular tv shows and movies to work in a kid friendly camp setting. This year we chose Harry Potter, Brooklyn 99, and the Princess Bride. This job turned out to be a great fit for me because it mostly doesn't require standing and if I'm occasionally nocturnal I can just write the scripts at night. Since I sleep through entire days it was definitely a challenge to make scheduling these programs workable but my coworkers did a great job of accommodating me so I didn't miss any of the super important stuff.
     Acting has always been a favourite activity of mine and camp is a great welcoming place for that kind of thing. It wasn't just limited to the plays, though. Interacting with and entertaining the many children is essentially constant improv acting. It's one of the most fulfilling feelings when kids come up to you to say things like "Mitch, you're really nice. You made my camp experience way better. Are you coming back next year? Are you going to winter camp?" I even had kids ask me to take them on their trip counselor-in-training to Israel and had to explain I couldn't even go on my own group's trip to Israel in 2011 because of my health issues. Aside from the great feedback I'd know the plays were good when the cast was too busy laughing at the jokes during rehearsals.
     I loved doing silly things like creating an army of children with water guns at the local splash pad and directing them to attack other counselors. Of course they inevitably eventually turned on me but for awhile they were running around literally chanting my name. One group of little girls figured out I was ticklish and took full advantage of it. The problem for me is my legs are not capable of simply running away like anyone else would. One or two I could handle, but they had an entire squadron. There was one instance where I made the mistake of trying to run away, for just a few seconds, to the staff only area. Even this tiny burst of quickness made me deeply regret that decision because of the extra leg pain over the next few days.
    In the rare instances I got serious about something they'd listen; which allowed me to make rules like "no tickling Mitch while he's eating so he doesn't choke to death." I'd make deals like "I'll tell you what the play tonight is about if I get a temporary break." They'd agree and then gleefully tell me their fingers were crossed. My goals were simply to make sure they had a good time and that certainly happened because when I approached the kids to say goodbye at the end of the summer their parents said they'd already heard all about me, even though I wasn't even a counselor. Other staff would observe my shenanigans and said sent me messages saying things like "You are amazing! The kids love you and you always somehow have the energy for them." This is interesting because the main reason I always seemed to have energy for them is that when I didn't have the energy I'd stay away from camp at an Air BNB in Perth. Usually I'd be sleeping on the camp grounds so I'd be visible even when I'm not well enough to be productive but since this year was different people only really saw me when I was at my best.

     That's right, for my first time ever I didn't sleep on the campgrounds this year. The person in the place I usually slept in was an older guy and not willing to share the space with me. Instead I found a very cheap Air BNB in the nearby town. I had my car with me so I'd drive to camp whenever I happened to be awake. Since my sleep schedules are very random I'd often take over the night watch job if those assigned to it wanted to go to bed. Normally I would have declined a paycheqeue because I don't do this for the money and it's a non-profit camp. However, paying a few hundred dollars for a place to sleep so I can do work isn't the best situation. So myself and those in charge agreed to a compromise. Since I'm awake roughly half the time, I'd take half of what my paycheque would have been and put it all towards partially paying for the rent. That covered around half of it.
     As for the place itself, it luckily had a very loud air conditioner right outside my room which masked all the noise from downstairs where the owner would hang out. I helped take car of his 2 cats and 2 dogs which probably would have been a problem for most people but I didn't really mind. His neighbors were supposed to watch them while the owner was gone but I felt they were often lacking diligence. There were a few weird rules too. When you finish taking a shower (which is also the room where the cat food is) you'd have to make sure the door was propped open enough so that the cat can get in but closed enough so that the dogs couldn't get in and eat the cat's food.
    It's almost tradition at this point that I have to get sent to the emergency room for one reason or another whenever I go to camp. I've had to go every year for the past 5 years except the one summer I wasn't at camp. This year the problem was an unexplained very strange rash. It was a bunch of tiny vescicles that were sometimes white and sometimes red and they appeared all over my body. They could be scraped off but I was warned by the camp nurse not to do that in case they were dangerous pustules. They only mildly stung but was told by doctors to get it checked out quickly. The emergency room doctor said they'd never seen this kind of rash before and didn't think it was related to my heat allergy. They thought it might be inflammation of the hair follicles, but I noticed that they also appear where there's no hair so myself and the docs in my family disagreed. I have inflamed hair follicles on my feet and they present very differently.  They gave me antibiotics but said not to take them unless it doesn't go away in 48 hours. It didn't go away permanently but I started to strongly
suspect it was in fact heat allergy related, so I never took them. The doctor got very excited when I mentioned I have Ehlers Danlos Syndrome and said she'd never seen one of these before either. This has happened to me several times now. Pictures of rash below:

     Eventually I noticed that these vesicles tended to appear in concert with my regular red hives heat rash. It seemed like it was just a sudden new symptom of an old problem. I don't know why it decided to get worse now, but the dots are quite ugly and bothersome. I'm getting quite sick of new symptoms popping up with no explanation while lacking in potential treatments. In contrast, very little seems to be improving. My lactose intolerance is getting better, so there's that. What threw me off about this new problem's causes is that my regular heat rash hives go away quickly once I cool down but these lasted for another 24-48 hours.
   Overall, camp is both an extremely challenging and fulfilling experience. On the one hand, the pain was at times so bad I was in tears. On the other hand, it's a huge mood boost because writing scripts and entertaining kids is something I can excel at despite my health problems. Sure the kids were curious, asking about why I use a cane and bugging their counselors about where I was when I would sleep through the day. Ultimately, they didn't care about my associated baggage, they just cared that I was fun and were upset when I wasn't around. It's almost therapeutic in its own way to be a strong presence at the camp despite everything and expressing my creativity in a productive manner. It's rougher than you can imagine, but somehow definitely still worth it.

Mitch the Guinea Pig

     The most interesting recent occurrence that took place just a few days before writing this was the agreement between my sleep doctor and I to do a research case study on lil' ol' me! The doctor had already been studying me since I started seeing him a year ago when my previous two sleep doctors ran out of ideas to help me. Most chronically ill and seemingly visibly healthy people encounter the problem of doctors ignoring them or, even worse, mistrusting them. I have the opposite "problem", the doctor is so interested in my case they text me to try to book new appointments. It happens so often that he agreed to do tele-medicine appointments, which is kind of like Skype calls. At every appointment I'd be asked the same questions about how I was doing on a day-to-day basis and told to provide sleep data from my fitbit. This showed the doctor how insane my sleep and pain situation is and so his interest only increased and that's when he asked to do a wider official study.
      As exciting as this is, I know it's going to be a tedious process. I have to fill out an excel spreadsheet everyday that would show all the tiniest details about my sleep and pain cycles. When exactly did you take your pills? What dose were they? What was your pain level that night and the next day? How's your mood? What's your energy level? When did you wake up and fall asleep? Did you use the special wakefullness light after waking up? How stressed are you? How well can you concentrate? What does your fitbit say about awakenings, REM patterns, and deep sleep amounts? Did you take any naps? All this information needs to be filled out on a daily basis for the study. The hope is that this data will convey how unprecedented the severity of my issues are. As the doctor put it, we've been sailing in uncharted waters because no one anyone knows of takes the amount of sedatives that I do while still not falling asleep until I've been awake 24 hours. Remember, the maximum dose for quetiapine is 300 and I take 2300. My parents and I were watching a show called Homeland and at one point one of the characters get a normal dose of this medication and are warned "It will knock you out for days." We started laughing because here I am taking 8 times the maximum dose and I still can't sleep, yet this character is totally knocked out.

       What would be amazing is if this study catches the eye of other researchers who will want to know even more. The assumption is that I just don't metabolize medications properly so if we could fund the pharmacokinetics study I mentioned in the past we could find out what the hell is going on in my body. If we can't get it funded we might just pay the $10000 and do it ourselves at this point. At the very least it would tell us when the optimal time to take each of my pills is based on how my body absorbs them. Perhaps it would even show that I can safely take far higher dosages of my medications because most of it isn't actually making it to my brain.
    The next step in this plan is being referred back to my very first sleep doctor from 2010. He still runs a sleep study clinic so I'll get another one done with him to see how things have changed from the previous sleep studies from many years ago. We're also going to do a melatonin blood test for the first time. I'm interested to see if I have low melatonin levels that explain my insomnia or normal levels that are essentially cancelled out by my ridiculous pain intensity. This first doctor is the one I saw before I was diagnosed with EDS and the only one to agree with me that I was miserable, not clinically depressed, so I'm excited to see him again. Unfortunately this sleep doctor is away for the next while so I may have to do this all in the middle of the next semester which will already be a struggle with my horrible sleep patterns. The plan is to keep doing online courses because ensuring I'm awake on time for each lecture with a 24 hour sleep schedule would be impossible, particularly if I have 3 1.5 hours classes in a week instead of 1 3.5 hour class.
     I had to come back from summer camp a bit earlier than I planned because all the massage therapists in the area of the camp were fully booked up and my legs were killing me. I saw one once while there and they said what they all say, that the only other time they use maximum pressure is with 400 pound patients. My muscles are just that tight as a response to the pain.  I became really sick the day after getting back and it lasted for 16 days because of how crucial decent sleep is in getting better. Not only is my sleep and pain bad to begin with, it gets even worse when you're fighting off a virus. My doctor confirmed that the sickness was causing problems when I showed him that my fitbit said I was getting 10 hours of sleep instead of 16, almost literally no REM or deep sleep, with the REM being so low it wouldn't even assign a percentage to it.
     My shoulder problems have also increasingly come to the forefront of things in the past year. It burns a few times every day so I went to see a shoulder doctor about it. He said my trapezius muscles were atrophied and so physiotherapy might help with the pain. I'd seen this doctor many years ago when my right shoulder first started sublaxating and he said my rotator cuff muscles were atrophied and so I did physiotherapy for that and now when I saw him again he said the cuffs are fine. I went to a new physical therapist and my strength has greatly improved; he said I had perfect exercises form when I saw him again. Unfortunately, my pain hasn't been helped much despite the strength improvement. However, I do think I've been subluxating a bit less. I'm seeing the doctor again in October, hopefully we can find ways to avoid another surgery. I had hernia surgery in February so am not too keen on the idea of having two in one year. Note the asymmetry and winged scalpula:

     You may remember the theme of my hopes being built up with different ketamine solutions only to be somewhat dashed soon after. Not only were the infusions not the permanent solution I hoped for, but the nasal spray I was recently given has its own problems. I had to fight to get a second infusion 6 months after the first one when it was supposed to be one year and then that infusion wasn't nearly as helpful as the first one. Then I'm told I'll only be allowed one more infusion next year so it doesn't screw up my brain too much. That's understandable, but I wish I was given this disclaimer beforehand. Then I'm given the ketamine nasal spray, and while it wasn't as helpful as the infusion, it helped. But wait! Cause now it turns out you can't use it everyday or it will stop working and also destroy your brain. Almost every time I don't use it I have a crappy sleep so the impact on my functioning was very much different than what I hoped for and expected. Stop building my hopes up, man! To prepare for camp I stopped using it for the whole week before, which of course sucked. Though this allowed me to use it everyday while at camp, which the doctor said was a reasonable compromise. He had concerns over nasal perforation from the spray but I looked into this and apparently it shouldn't be a huge concern. The worst thing is breathing in the nasal spray too hard and it going down to your throat. It stings and tastes awful. The doctor had never prescribed the nasal spray before but people in the EDS Facebook groups swore by it so I was able to convince him to make yet another exception for me. I quickly realized I could raise the dosing frequency because a day for me is twice as long as a day for regular people so if I use it once when I'm awake it will be around 38 hours until I want to take it again instead of, say, 20.
    Something else kinda concerning only really happens when I take an extra quetiapine in the morning to fall back asleep, which is very rare. I'll wake up to go to the bathroom or whatever and a few seconds after standing up and walking I'll just completely collapse on the ground. I lose complete control of my body for a second and just plop right down. So far I've never fallen into anything but it's a scary sensation for sure. I only ever take that extra pill when I know it will ruin something important coming up that day if I don't get the extra sleep. It's a weird feeling because it's not really fainting, you're fully conscious but lose all feeling and strength in your body for a moment. I should do what people with POTS do and stand up slowly but when I wake up in the early morning after taking all those sedatives I'm not exactly thinking clearly. Hopefully this is all harmless.

The Hernia Surgery

     It was finally time for the umbilical hernia surgery. Remember that we had to keep postponing it until after the ketamine infusions because because of the side effect of constant violent shaking and/or vomiting that would surely rip the stitches. Remember how I said that my hernias from 2005 recurred until surgical mesh was used? Well I was very nervous this time because the surgeon said he wouldn't know if mesh would be viable for me until after he opened me up during the surgery and took a look. Normally it wouldn't be a big deal but having a connective tissue disorder can certainly cause additional problems. It turned out in the end that he couldn't use the mesh but the surgery was over a month ago and it hasn't recurred. It's hard to celebrate yet though because my other hernias didn't break right away either, it was a year afterwards.

  Coincidentally they used ketamine as the anesthetic and for the first few hours after arriving home the wound barely hurt at all. Then the effect wore off and it started getting very bad. I decided to do my best to avoid taking painkillers because I wanted to do everything in my power to avoid ripping the stitches. If that happened my pain would likely become even worse than it was before the surgery and I could not handle that. With my mind cloudy from the painkillers I kept making very stupid movement decisions like sitting on a couch with no easy way to stand back up without using the stitched stomach muscle area. Plus it just makes you way less careful with movements in general. I was given 27 opiate pills for the pain and only took 6 of them over the entire recovery process; pretty impressive I think. As a result, though, at times the pain was right on the verge of unbearable. I kept telling myself I can handle ridiculously high temporary pain levels, it's the thought of worsened chronic pain that terrifies me.
   It took me a very long time to make it up the stairs to my room. I almost couldn't do it even with my dad helping me. Risking going back down was out of the question during recovery so I was essentially trapped in my room. Ordinarily this wouldn't be so bad but my computer chose to stop working at the worst possible time. It added a lot of stress to an already shitty situation and I couldn't easily fix it because I obviously can't bend down to look at it. Thankfully I had family around who could follow my instructions to try and figure it out. Eventually my dad brought it to a computer store for me and they fixed it but by that point I was already mostly recovered.
     My stomach was also very uncomfortable because I desperately needed to go to the bathroom but could not because any pressure use could easily rip the stitches as well. The first night after the surgery was incredibly awful to the point where I'd rank it as one of the worst experiences of my life. The doctor had warned me the pain would be increased due to having EDS and I certainly believe that. As you know I vape every night to fall asleep and could not do that because I was perpetually groaning from being in so much pain. I also sneeze a lot as a consequence of constant sleep deprivation from being awake so long and that first night post-op when I sneezed it hurt my wound so much I started crying. I had to deal with increased leg pain too because I couldn't get therapeutic massage until I was able to lie on my stomach again.
    I showed my doctor the picture below after taking the bandage off and he said it's very swollen and there's lots of trapped fluid but didn't think the hernia recurred. Overall it healed well but we'll have to see what happens when I become more physically active again. I still haven't tried working out, for example.

    I went to see the surgeon a couple weeks later for follow-up and he agreed that it's healing well. He said there's a lot of hard scar tissue which is a good thing. There is, however, a concern for the future. My muscles were sutured together with knotted stitches. He said me being a skinny guy could be a problem in this situation. In skinny people the suture can protrude into the skin causing irritation and pain. For less skinny people it would just painlessly go into the fat instead of the skin. If this issue happened to me they'd have to open me up again to fix it. At least it would be local anesthetic only, not an entire new general anesthetic surgery. Below is what my new bellybutton looks like. I did request they keep it an innie, and they sort of did. I like the old one better but what can you do. 
    Next up on the chopping block was my second Tedx Talk. It was at York University again and I essentially gave the same speech as last time. The speech was received extremely well but there's just one problem: They didn't fucking record it again! Last time they recorded everyone's but mine because I switched spots with a guy as a favour to him when he asked (as you may recall he had an early flight the next day) and it confused the videographer. This time no one's speech got recorded and none of the people in charge can explain what happened, it seems like the people who were supposed to have the camera never showed up. They were aware that the only reason I was doing the speech again is because I wanted the recording yet they didn't even tell me it wasn't going to happen until I went up and asked right before the even was about to start. There were other speakers and since my sleep is unpredictable I requested to have the ability to go either first or last depending on when I woke up. They granted that request and I ended up going first.
    There was also the issue of speech timing. Last year there was also a 13.5 minute time crunch to give the speech but I was less practiced so couldn't go maximum speed even if I wanted to. By this time I was very well practiced and so had the ability to go a bit too fast and did so. At one point before the event they asked if I could keep my speech under 9 minutes and I said absolutely not but I promised it wouldn't go over the 13.5 of last year. I was determined to keep that promise and did so but the problem is no one else did. The last guy to speak gave a horrible show-offy speech about spending a month in Colombia with his buddies he started a company with. He told us it wasn't a good financial decision but that they did it because they could and then encouraged everyone else to act that way, as if it were that easy. Normally I'd just daydream during that kind of speech but it went on for almost 40 minutes! I can't believe I rushed my speech for that kind of crap. Rushing made me lose a lot of passion so at least when I record the damn thing myself I won't have to worry about that issue. So two years in a row I got screwed over for trying to be a good guy. The first time by switching speech spots with the guy who begged me to do so, and now by keeping my promise to keep the speech relatively short even though in the end no one else did.

     Just like last year many people in the audience came to speak to me after the speech to tell me how much they enjoyed it. A couple of people asked to join the blog group these posts are from because I mentioned them during the speech so they'll be reading this (hi). Someone who works for Sheridan college said they're posting my speech online to show their students. Best of all, a couple of amateur filmmakers approached me saying they'd like to make a short documentary about me and EDS. We're recruiting family, friends, others with EDS, and potentially even doctors to be interviewed about myself and my condition. They also agreed to film the Tedx Talk speech for me so I'll post that on Facebook when that happens soonish, hopefully within a month.
   On a random freaky note, when I take an extra quetiapine pill in the morning to fall back asleep after waking up too early I usually collapse after standing up to go to the bathroom or something. I feel faint and lose all control of my movements, like a really severe POTS (postural orthostatic tachycardia syndrome) episode. There's always a few second delay of it happening after standing up so I usually have something around to grab onto to break the fall but I need to be really careful when taking that extra pill somewhere that's not my room.
    Coming up any day now will be me trying the previously mentioned ketamine nasal spray. If I can absorb it better than the pills then it could be life changing. There's no absorption issues with the infusions because they go directly into the bloodstream but since they happen in the morning it's not going to help much for sleep. If I take the nasal spray right before I want to fall asleep and it gives me at least a good partial effect of the infusion that could be a huge deal. The ketamine infusion doctor has never prescribed the nasal spray version before but my dad found a colleague who has and so she sent my doctor the typical dosage amounts and just the other day my doctor asked for our pharmacy information so he can send in the prescription. I'll have my hands on it any day now!

Ketamine: Round Two

    Three months into the heat allergy injection treatments I still wasn't noticing any benefits. Forget about not being able to go on family trips to Mexico, I was having probably going to a theater to see a damned movie. Minutes after taking my seat with my family I started getting a rash and knew it would be far too painful to sit through. I was about to leave but my dad suggested trying to sit in the seat closest to the doorway where it might be cooler. I even took my shoes and socks off which got me tons of weird looks from the people walking in. My dad went to go get me cold water and ice which I put on my neck. All this still wasn't enough but right before I was going to leave my dad asked the theater staff if they could lower the heater and they did so which let me stay for the movie. I've also noticed that upsetting, and especially embarrassing, thoughts can also trigger an allergy attack. This is because being upset also raises your core body temperature. So imagine every time you got upset about something you got an extremely painful rash to make it even worse.

    It was time for the second set of ketamine infusions. I was in essence a test subject because they were doing it after half a year instead of a full year because of my special awful circumstances. Just like the first time the experience was pure hell. This time around they were able to start off at a higher dose and these massive doses would be a horrible experience for anyone. When you have my almost unprecedented level of insomnia it becomes a whole new nightmare. Since the pain keeps me awake for so long and I have to arrive at the hospital by 7 am I had to pull multiple all-nighters. The infusions are exhausting to begin with and since I went into it with zero sleep it was literally the most exhausting thing I've ever experienced. Now throw my constant excruciating pain into the mix and you've got a delicious recipe for super happy fun times 5 days in a row.

     Why stop there though? I was also the most hungry I'd ever been because once again you're not allowed food or drink past midnight. This caused quite the predicament during some of the nights before the infusions. I had to choose between hunger or exhaustion for the next day. This is because after one of the infusions I got home so tired I was ready to go to sleep right away if I took my sleeping pills. The problem is if I did so I'd wake up at midnight and like I said, you can't eat food or drink past midnight. You can't stuff yourself at midnight either because I erroneously did that the previous year and spent the next day constantly vomiting. So if I allowed myself to nap I wouldn't be able to eat for even longer. Instead of not being able to eat from midnight to 4 pm It would be from 4 pm to 4 pm, 24 hours without food to make even the infusions more unpleasant. Of course if I ate instead of napping I'd be as exhausted as can be again the next day. So choosing between extreme exhaustion and extreme hunger, I chose exhaustion because getting the IV on too empty a stomach will cause acid burn. Thirst was also an issue because my many sleeping pills cause dryness and you can't drink so I just sucked on some ice cubes.

Here's a message I wrote to my family while all of this was going on: "I like to think I'm a resilient guy but I just don't know how to handle choosing between doing kertamine every half year or allowing sleep to go untreated. Today it felt like I threw up more than I've eaten in my whole life which isn't that big a deal but handling the discomfort of the infusions in general is so impossible on essentially 0 hours of legitimate sleep 5 days in a row. Thank you everyone for your support, I would have given up fully long ago without it. I'm doing it but I just feel so damaged from the literal and figurative ketamine nightmares that I get when my body can't help finally passing out eventually."

    Like the first time, my pain went away completely during the infusions and immediately started coming back once the IV was out. I did have a few days of significantly reduced pain before it went back to "normal" again. I find that I'm able handle standing for longer in a shower longer than normal due to both being able to easily bend my legs (standing straight is the worst on the joints) and the warm water, but it still hurts a lot. During the few days of reduced pain I had to stop myself from enjoying crazy long showers because I knew it'd just cause the pain to come back faster. I once again had an extremely supportive family and my uncle spent most of the days beside me reading me one of my books aloud. It was very soothing and the mental effects of the medication made me feel like I did when my parents read to me as a child. I also had several friends visit which was really awesome. One of the evenings when I was still buzzed off the ketamine I watched The Girl with The Dragon Tattoo which is the most messed up movie I've ever seen and I chose a horrible time to watch something like that with my brain all fuzzy.

    Unfortunately these second infusions did not at all help with my sleep scheduling. Before the procedures I was awake for 26 hours everyday. Now almost 2 months later it's 28. However, they did help with my quality of sleep. The infusions took place at the end of January and I had lost all my productive functioning since early December which caused me to defer an exam. I now have some functioning again and finished the exam but it's very minimal. With my insane sleep schedule of awake 28 hours then asleep up to 21 hours I doubt I can handle being away at university in the fall unless things improve. I'm about to try a ketamine nasal spray because people with EDS say they absorb it way better than the pills I'm on. I was also told that they won't do more infusions until January 2020 and they usually only do 3. So that would be the last one unless huge exceptions are made. If the nasal spray doesn't work that's a very scary prospect. 

     I decided I'd try to go to camp this summer as a sort of test run for attempting to go back to Guelph but they might not be able to accommodate my sleeping needs this year. Even if I am allowed to go, I'd say there's a 50/50 chance I have to come home early. I bought many boxes of Soylent (a meal replacement drink) because at camp in the last bunch of hours I'm awake I'd be too tired to leave the area I'm sleeping in to go get food and  I can't make meal replacement smoothies instead like I could at home or university. Plus I can't be walking around outside after taking my pills and marijuana since kids would see me.

     I've had to increase my meds back to their maximum doses just to not be awake more than 30 hours and so much of the brain fog I used to experience is back. Even with those doses after the infusions there was a day where I was awake 32.5 hours! Due to this craziness I may not work as long hours in total as others but for me to do my best to catch up I have to spend all my energetic moments on working. Let's say most people have 9/10 energy levels on waking up by default and I wake up with 2/10. Most people will spend 6/10 of their energy on working and end the day with some left for themselves whereas most of the time I spend it all on playing catch-up and can only stop when I have nothing left to give. This whole idea is what a lot of disabled people call "Spoon Theory."

     Due to the entire week of infusions I had to go far longer than usual without therapeutic massage. This meant my pain was even higher than normal following the aftermath of the infusions and since the pain was so relatively low in the first few days after leaving the hospital it was really jarring and overwhelming to go from one to the other so quickly. I couldn't even get a massage booked right away because the increased pain from no massage made my sleep even worse which caused me to keep sleeping through alarms. If I'm sleeping through my alarms I can't control when I'll be awake and so by extension can't book a massage until that stops. It was a horrible cycle that was not easy to break. When I finally made it my massage therapist said I'm their only patient that can tolerate and requests them using their full force of pressure. I do that because the harder they push to undo the knots the less my joints hurt after the fact.

    In case anyone is interested here is a short article that I think is really good and I definitely relate to. It's about mourning who you were before your chronic illness. I definitely miss not being so snappy when tired. When I'm simply in pain I can avoid it (with strong effort) but when you add fatigue into the mix it becomes in possible. Plus I have trouble finding the balance between telling new people about my health issues so they don't judge me for my oddities or sharing too much and scaring people away.

Article Link

    Something interesting took place over winter break. I went to two parties and at both had 13 shots of fireball whisky. Following this when I was ready to go to bed I fell asleep instantly without taking a single sleeping pill. It seems that alcohol is a more effective sleeping aid and painkiller than my 20 (I counted, there's 20) pills combined! Instead of being awake 30 hours I was awake 9 hours and didn't use marijuana either. Without the pills it was a very disjointed sleep but that gave me an idea. Sometimes I'm put in impossible situations where I need to wake up at specific time the next day for an appointment or something but my sleep schedule is all wrong. On occasion I need to pull an all-nighter like with the infusions because if I take my pills I won't be able to wake up on time for the appointment. In those rare situations, what if I took no pills and just had alcohol? This kind of emergency would only happen a couple times a year, so don't worry, I have no intention on becoming an alcoholic. I brought the idea up with my sleep doctor and he of course can't officially condone it but implied it's not a horrible idea if I want to try it on my own. I haven't yet had a reason to do so but I will if needed. With the infusions out of the way next up on the roller-coaster ride was my long awaited umbilical hernia surgery.

This picture was taken on my birthday in 2011 while I was on morphine. It may be less easy for others to tell but to me I looked very drugged up and my smile doesn't reach my eyes.