An Imperfect Storm

Link to part one of this story titled "Disintegrating Trust" if you missed it.

Amid the despair of having to put university on hold when so close to the finish line, I tried to focus on other ways I could maintain a fulfilling life. I've been continuing to ramp up my EDS advocacy efforts. The Bend or Break Instagram page hit 1000 followers today, while my chronic illness game streaming group continues to grow! 

    Where we last left off I had just exited the emergency room but was still staying at the hospital overnight following the diagnosis of Cannabis Hyperemesis Syndrome (CHS). Less than 24 hours ago, I nearly just asphyxiated on my own vomit while unconscious during a disastrous ketamine infusion. Despite having eaten and drank nothing for several days at this point, I was still throwing up bile 30 times per day in the most painful and violent manner. The doctor was going to come visit again in the morning, which put me in a tricky situation regarding my medications. My normal amount is 20 pills before bed, but there was no way I could swallow all of them without throwing them up. I decided to only take one pill out of the usual 20. I definitely had to take gravol too and the nurse suggested that perhaps it would help me sleep. I had to stifle a laugh because the sum of my usual sleeping/pain medication cocktail is about 10000 times more powerful than a bit of gravol and yet even without the painful vomiting, I'm awake 36 hours each day! The one silver lining of my slow recovery necessitating me to stay in the hospital is that I wanted nothing more than to go home and vape again to treat my nausea. Given the diagnosis turned out to be CHS, it is very good I was unable to do so or I would have made myself even worse. 

Refresher on CHS basics

                                          

    On the one hand, with CHS we know eventually I will recover if I stay away from cannabis. On the other hand, this was a massive blow to my long-term functioning prospects, as I outlined to friends and family with this message: "I’ll stop using cannabis for now and see if I improve. But this is huge, guys. I depend so much on cannabis. Remember I said it basically singlehandedly turned me from a high school dropout into a graduate after they gave me the prescription? At the very least, if I have to stop it completely, I think taking 3 courses at a time, like I have been is off the table. Worst case scenario, finishing university becomes impossible and any semblance of normal functioning is just gone. It’s so helpful because I don’t absorb/metabolize things through my stomach properly but vaping works normally. Weed you traitor, I was using you more and more lately because you’re known for helping with nausea. In actuality you have been causing the whole damn thing!"

    Remember how in my last post I said one of the ketamine clinic nurses said "Mitch, can you vomit more quietly? You're disturbing the other patients." As I've said, this is not the kind of vomiting most people experience, it was unlike anything I'd experienced. Now we knew why, as it's specifically noted on the CHS Wikipedia page:

    It's known for inducing a combination of screaming and vomiting, and they asked me to throw up more quietly?! Although it's not ok to say that to a patient in any event, there is the mitigating circumstance that they didn't have any idea I had CHS any more than I did and just assumed it was typical ketamine infusion vomiting, which is a common occurrence. It also turned out that my brother (also a doctor) suspected CHS a day before my doctor did and has managed some of his own patients with it. He confirmed it's not pretty when severe and there's frequently the same story where patients develop nausea and naively use even more cannabis than before to treat it. Sometimes it happens to someone who’s only used weed a few days. But it’s usually like me, where you use it everyday for years and one day it just explodes randomly. I joked, "I'll just self-medicate with Fireball whisky from now on. Much safer!" Extreme cases of CHS can even be deadly because of being unable to eat or drink for so long and constantly throwing up can dehydrate you enough that your kidneys fail! If I wasn't getting IV fluids and Potassium supplements, I could have perished for a second time in that week (the first risk being choking/aspirating on vomit while I was getting unconscious during the disastrous ketamine infusion). Although CHS is a very physical thing, it can be made even more severe from emotional stress. And for those who read my PTSD blog post, my stress levels at the time were extreme. Link to that blog post. This kind of vomiting can also cause esophageal Mallory-Weiss tears which is interesting because I was confirmed to have those after bouts of unexplained vomiting many years ago!  

Always such a kidder, ain't I? 😄

    I was given Pantoprazole which works by decreasing stomach acid production and was going to be sent home but then the tiny amount of soup and jello I 'nommed on had me throwing up again and so I needed to go back to avoiding food and drink. The doctor at least started allowing me to suck on a few ice cubes each day and given my thirst each cube was as satisfying as a meal at a 5 star restaurant! I had a lot of time to ponder matters and this didn't do much to alleviate my stress levels, as I wrote at the time: "I'm so stressed about prospect of potentially not being able to use medical marijuana anymore for sleep; It’s so crucial. When I start to feel sleepy I can start vaping and if I realize I jumped the gun and am not ready for sleep yet, I can take a break and just vape again later. But I can’t take my sleeping pills more than once. Without cannabis, the first step of my pre-sleep routine is taking my sleeping/pain pills. If I take them too early they will wear off before I can fall asleep and it will ruin the night and the following day because I can't take extra pills safely. With cannabis, if I start vaping too early I can simply vape more a few hours later, supposedly safely. This is why I correctly guessed without cannabis my functioning would plummet. And making important plans will be so hard because I’ll constantly screw up pills the night before them and be suddenly exhausted the next day. Also, what's up with most nurses here not closing the door when they leave my room? I am hooked up to an IV machine and standing up to close it myself does nothing to help my nausea. At least one nurse noticed this and scolded the other one! I also just read that even when gene therapy starts curing genetic disorders, Hypermobility Type EDS will be one of the last because it is harder to cure autosomal dominant conditions. So that was a fun read..." 

    As you can imagine, by this point I felt quite disgusting and so thankfully had finally improved enough to make taking a shower possible. The picture below shows my arm from the crazy amount of recent IVs and blood tests AFTER the shower. Without most of my meds I could only sleep for 2 hours per each 30 hour day and I was going through withdrawal of all of my 9 different prescriptions simultaneously, which further worsened the nausea. I couldn't take the pills without throwing up again, so that's an unfortunate catch-22 if I ever saw one. My friends wanted to visit me but I said they shouldn't because of how insanely terrible I felt. Even aside from the vomiting, I could not even bring myself to watch a TV show on my phone because of the insomnia-induced splitting headache I had developed. Conversing with anyone was just not a possibility. 

Zebras are always cruisin' for a bruisin' 

    With a diagnosis obtained it felt like time to reconnect with my old cannabis specialist doctor. The good news was they replied saying they had a small amount of experience dealing with CHS in their patients. The bad news is they wouldn't be able to see me again until over two months later. Her clinic had moved across the continent to the west coast so they tried referring me to cannabis specialists in Ontario, but that didn't work out because none of them had any CHS experience whatsoever. I was still overjoyed when they said they can commonly slowly reintroduce cannabis to their patients after a full several month recovery, but at a far lower dose and perhaps with a different (in my case, less effective) ingestion method. So the hope that I wouldn't lose medical marijuana forever was there, but it was going to be a rough few months without it regardless. With me finally being able to keep a bit of food down, I was permitted to head home. There was still a great deal of nausea so I could only take my usual medications at half the typical dose, but that's way better than nothing at all! I then declared "I'm going to eat a whole pizza like I've been promising myself since this started and no one can stop me! Kidding, I'll have rice." I weighed myself and noted that I had lost 12 pounds since the CHS nausea first started. The doctor who examined me before discharging me verbally said and wrote that I looked fit. Well, he should have seen me before the unwanted weight loss! Working out with EDS joints is far more painful than for a regular person, even given the fact that I completely skip all leg days. Meaning I focus solely on upper body (my worst chronic pain is in most of both my legs to the point where I will never stay standing up a second longer than is necessary). I had no idea how long it would be for my sleep quality to recover enough to get my weight back up, if that would even ever happened given the uncertainty surrounding future cannabis use. These were my most recent personal progress pics taken before the CHS. 

Losing so much weight gain progress after enduring such pain to accomplish it was infuriating! 

    It was unfortunately after I got home that I was told this, but I had thought you were supposed to brush your teeth right after throwing up to get the damaging acid off. This is false; because it just spreads the acid around! Rinse, do not brush. I was able to book a phone call appointment with my one of my ketamine doctors' staff to discuss getting me in for another infusion as he promised, and unfortunately I wasn't going to be naturally awake that day. I was unwilling to reschedule because I desperately needed the infusion before the next semester starts. Taking any courses at all was already questionable without having cannabis for sleep, to not have ketamine too would be a death sentence for my education. This meant sleep depriving myself to shift my sleep schedule to ensure I'd be awake for the appointment, which is pure torture at the best of times, and this time there were the stomach problems added onto it. Compared to the nausea, it took far longer for my extreme abdominal pain to improve at all. The theory was that I vomited with such intensity and frequency that my abdominal muscles had never worked so hard in their life and so were understandably very sore.

    Amid this aftermath, a relative said I need to stop worrying so much about the next semester so I can better focus on the current recovery. At the same time they basically calling me foolish for not cancelling the ketamine infusion due to my nausea. They weren't very wrong, but the contextual circumstance is what led to the whole thing. To explain this to them I wrote: "More self-reflection is inevitable after a traumatizing recent experience. The rationale for me proceeding with the ketamine infusion despite not feeling 100% is that I’ve trained myself to push through extreme levels of discomfort to achieve my goals. I was desperate to get the infusion done before the next semester starts so that I would have a chance to take 3 courses again. It’s nothing new with me. In grade 10 I’d force myself to go to school and then I’d just faint or fall asleep in class. People who don’t know me can accuse me of being lazy for being 26 and not be a graduate but in reality it’s the very opposite. I push myself too hard. It was bound to catch up to me eventually. And I had a few dating app dates planned and wanted sleep to improve before those and so felt time was of the essence. It took me a year to give up hockey, martial arts, and skiing after chronic pain started with swine flu in 2009. Because I thought stopping my exercise would only make my condition worse. In reality pushing myself to do those things probably did more damage to me. I remember long before my diagnosis I would sprint around the block repeatedly thinking that I just needed to strengthen my legs after the 3-week swine flu ordeal, and then I'd be crying in pain as a result for the next week. With recent events, I would have ended up in emergency room regardless. The problem was the cannabis, not the ketamine. The infusion just sped up the process. My hope is the Bend or Break documentary will make more people understand. Because the better I'm doing, let's say, with my workout progress, the less people understand how painful it was to achieve that progress. Catch-22, you just can't win! My therapist really loves the Bend or Break name for the documentary/my memoir. It's kinda funny because I haven't been heeding my own advice when I made that name. I need to be willing to bend more; meaning sacrificing some of my goals, at least temporarily, so I don't break... as I broke last week by not cancelling the infusion.

    The wake-up call from all this was that I realized I needed to stop being such an all or nothing person. Either I'm trying too hard and endangering myself with my determined efforts (my default state) or I've given up on life completely and am suicidal. Since I was conversing with my summer camp friends, I pointed out how when it was our turn to do the dishes at camp I would grab a chair, sit on my knees (which is very painful given my EDS joints) and lean over the sink to help. When I could have just requested I help by insisting on obtaining the role of the person who sits by the building entrance to make sure everyone washes their hands before sitting down to eat. Why did I cause myself that unnecessary pain? What was I trying to prove?

    The following nights were no cakewalk either. As I described at the time: "God damn, I fuckin hate trying to fall asleep without cannabis. It’s not like you get a headache sometimes when you’ve been awake 30+ hours, it’s all the time. The thought of potentially having to do this forever is literally making me nauseous with stress. And now I have to train on how to calm down from that stress to not further inhibit sleep without the stupid cannabis to help with that. Sleep deprivation increases pain sensitivity so all I can focus on instead of vaping is how much my legs and head hurt. Lol… Fitbit says I got 9% REM sleep last night. >24% is a decent amount, >30% up is great. I have no doubt it’s because of my lack of cannabis. And I doubt it’s going to get any better either; there was nothing particularly bad about last night that will be changing. Unless it’s somehow a fluke, next semester isn’t happening unless I take matters into my own hands in regards to trying to gradually get back to using cannabis (as opposed to waiting for oversight from my cannabis specialist in two months time). And now I’ve read that they’re saying a booster covid vaccine is recommended. Don’t make me do it again! I barely survived my two covid vaccine reactions and that was WITH cannabis to help!" 

My Fitbit smartwatch telling me it's time to go to bed at 10 pm. "Shut up Fitbit! You don't know me!     I woke up 4 hours ago silly!

  

The recovery process suffered a major setback as new stomach issues began emerging. There were two theories as to the cause, the repeated vomiting damaged my old umbilical hernia stitches (or even an entire hernia recurrence), or my digestive system was essentially shutting down due to the CHS. I hadn't been able to go to the bathroom in 7 days and so had just begun taking powerful laxatives. On top of the pain there was now acid reflux, nausea, perpetual stomach rumbling, and bloating. The slightest graze of my hernia stitches made me shout in pain and if someone were to actually poke it I knew I would scream! I've had that kind of thing occur and go away many times since my surgery, but the only time it's ever hurt more was right before I had the surgery to fix it, my fourth hernia in total. A general surgeon friend of my dad offered to see me the next day at the hospital I had only so recently left, which was tough because by then I'd have not slept for 23 hours and the sleeps were terrible to begin with. The pain convinced me to go and I brought supplies in case it was in fact a new hernia and I had to stay at the hospital overnight again. The car ride was not exactly enjoyable, because the seatbelt kept hitting my insanely sensitive bellybutton...

I sent this pic with the caption: "F you bellybutton! You've caused me nothing but trouble!"

    The surgeon painfully prodded my abdomen and his ruling was that both theories were true. He could tell my umbilical stitches had gotten damaged from such constant violent repeated vomiting but I'd still need an ultrasound to definitively rule out another hernia if it didn't improve within the next 2 days. As for my stomach, taking laxative pills turned out to be another mistake because the CHS was in fact shutting down my digestive system and so unfortunately suppositories were the way to go, I needed to stop putting so much solid stuff through my mouth for the time being. I especially needed to temporarily stop using my methadone prescription since opioids can worsen these issues. I outlined how "The ketamine infusion disaster, the CHS scare, and the hernia stitches issue are all connected. I just hope there's not more surprises a few days from now, I can't keep this up forever. And not to be gross, but until I go to the bathroom this shit (hehe) ain't resolved." Later that night I was less up for joking, because I had an emotional breakdown and the crying aggravated the stiches' damage even further! I couldn't use my marijuana prescription to help with sleep or the 9/10 level pain, I was several months overdue for a ketamine infusion's help, my digestive system was completely non-functional, I couldn't tolerate food again, and my hernia stiches were damaged. Under my NORMAL circumstances my insomnia is so bad I'm awake 36 hours, imagine how it was with all that going on. Luckily, my dad heard me sobbing while he was trying to sleep and came to check on me with our puppy in tow. I successfully used doggie love magic and deep breathing techniques to stop crying prevent further damage to the stitches. But when I tried to listen to a relaxing song it didn't work so I snapped and threw my headphones across the room which damaged the inner padding. That was the first time I'd ever damaged something in such a manner which just goes to show the extreme sleep deprivation and stress levels at the time. I then decided to move my vaporizer and tasty snacks out of my room, because during the long sleepless and hungry hours I would just be sitting around staring at them longingly. 

Flipping off my traitorous vaporizer for betraying me

    The next day I told my friends how my dad and I were becoming increasingly frustrated with certain doctors' slowness to act and how he was going to personally message them as well to explain the gravity of the situation. This led to a short humorous conversation with my friends:
My friend: "If your doctors don't act fast, you point the way to them and we'll do our worst on them - tickle torture!" (These friends mercilessly subjected me to this when we were kids.)

Me: "Now now, that's way too severe. Let's try to keep our heads on straight here! My friend: "Just know you have it in your back pocket."

Me: "I have something far deadlier in my back pocket, pocket sand! The doctors are blind to my plight so I shall throw it in their eyes to literally blind them with pocket sand! By the way, hey stomach, screw you and do your job, you slacker! You don't even pay rent! Neither do I but you can be replaced with surgery so ya better shape up! I still can't go to the bathroom so this is rapidly turning into another medical emergency. I may not even be able to digest my sleeping pills now so sleep may be impossible. If I end up back at the hospital they can give me gravol and tell me it hopes it lets me sleep... again."

My friend: "You'd think they'd read your medical chart." (Which would show them my unprecedented level of sedative prescriptions not helping much with sleep onset).

Me: "Even if they did, it's known that looking at my chart instantly drives most people insane. The doctor suggests scheduling an enema later today if things don't improve by then, despite EDS zebras being at a higher risk for intestinal perforation, so that's nice. 2 pm is the deadline for my stomach to improve. Hear that stomach?! This is your last chance! Do your job now or I'll do it for you!" [Two Hours later]

Me: "HAHA! My threats seem to have worked! Let's just say the enema is PROBABLY no longer necessary, but we'll see. And with only 3.5 hours to spare too. Stomach you crafty son of a Mitch, you pulled through in the end! I Wonder if I can stop having plain soup for every meal of the day and can finally order the pizza I promised myself 2 weeks ago. I have a lot of weight to regain now."

My friend: "Yay for pooping! I'd probably start with one of your Soylent [meal replacement drinks] for now lol."

Me: "I have MORE fantastic news! My appointment with my old sleep doctor and his awesome sleep lab is now booked for September 2! When the secretary read my file and saw how bad my situation is, like how long I'm awake and asleep, she double booked him for me. Otherwise I would have had to wait an extra month! To explain the double booking she put a note in my file telling the doctor my case is very urgent. There's people that care out there!"

To see my previous blog post titled "Dreaming of Sleep" (if you missed it in September) detailing what came of this world class sleep expert appointment use this link. 

I petition for tickling to be added to the Geneva Convention as a crime against humanity 

    Amid all this I received the first phone call from the ketamine clinic after the whole infusion disaster. It went great! They were very understanding about what happened and said they were down for me to attempt another infusion ASAP, but that first I'd need to resume taking ketamine pills to "prime" me for it. Before ever trying infusions in 2017 I was prescribed ketamine pills, which were basically useless because as I have mentioned, I don't metabolize things through my stomach properly. Infusions, vaping, etc, bypass this issue. They explained to me that they think part of the reason the infusion went so badly is that I had completely gotten off my ketamine nasal spray in the months preceding it, because my previous ketamine doctor insisted I do so! His concern was that too much ketamine for too long can cause permanent brain damage. So I got off it in the middle of a semester with great difficulty (withdrawal after all). I also waited as long as possible before requesting another infusion, meaning 5 months instead of 3. This was a big problem because, as they explained, your body needs a bit of ketamine tolerance if it's going to handle such sudden massive infusion dosages.  It seems once again my sheer willpower to endure discomfort in the effort of achieving my ambitious goals endangered and completely derailed my life. Throughout the phone call I was grunting in pain from the hernia stitches issue and so the staff member offered to end the phone call prematurely and schedule another time to call. But as I said earlier, I painstakingly sleep deprived myself intentionally to shift my sleep schedule so I said "NO! I worked really hard to be awake for this." It ended with me being told they'll call me again soon with an actual date for the supposedly imminent ketamine infusion. I figured given the loss of cannabis but the continuance of ketamine treatments, I could take two courses at a time at best instead of my usual 3. Given the medical state of things it was ambitious, but I'd do my best! 

    To a certain extent, things were starting to look up but a new scare of course just had to come knocking two days later. As I described it then: "While sitting down to eat something now that my stomach is better, this happened: It was a pulsing disorienting waves of dizziness. Not painful like the lightning brain zaps that occur when I’ve been awake 30+ hours. Others with severe insomnia have also reported the electric brain zaps. This new occurrence starts on both sides, goes through the middle in waves that move to the back of the head. It’s very severe for first 3 seconds, then dies off over several more seconds. It kept happening in 60 second intervals, 5 times. At first it did not affect vision much. After several episodes vision began to be affected. Blurry vision, could not focus my eyes. Due to discomfort, disorientation, and dizziness, my eyes started watering. Not sure if from emotion or because of this physical occurrence. Dad helped me upstairs. Since moving upstairs and lying down for a few minutes, it has not occurred again. It happened while I was having my first substantial bits of food after stomach digestion began improving, but I do think this is coincidence." There were so many awful physical and mental things going on at that time it was hard to try to determine a cause. I hadn't truly eaten in so long, that was a likely suspect. Maybe low blood sugar or low blood pressure? Sleep was even worse than usual.  But my body and mind were also under so much sheer stress that it was anyone's guess, I didn't rule out it as being purely psychosomatic. However, this seemed unlikely because when it happened, I had just succeeded in going to the bathroom after a total of 9 days of bowel movements, and had sat down for the first taste of solid food and so was in a celebratory mood. 

    That celebratory mood was shattered to pieces that very same day because as I revealed in the previous Part 1 blog post, this is when I got the highly anticipated phone call from the ketamine doctor's office. The phone call that they had previously told me would be to tell me when they can book me in for my next ketamine infusion, so I could get it done in time to allow me to enroll in the next semester. The phone call that, without any warning, instead turned out to be them calling me to inform me I am banned from their clinic FOR LIFE! They had told me part of the whole disaster was that my body had gone too long without any ketamine and could not handle the sudden huge infusion dose. Why did they never warn me of this issue when they were completely aware it had been 5 months since my last infusion and I had stopped using the spray the other doctor had prescribed? Do they not share any of the blame for what happened to me at their clinic? I had the right to be angry even aside from the ban decision because of the suffering I endured.  Meanwhile, my other ketamine doctor said to minimize my ketamine intake, including getting off the nasal spray in the middle of a semester, to avoid permanent brain damage. Well, which is it?! They knew I was following their orders and getting such huge doses, so why did they not clarify they didn't mean for me to literally minimize, but to cautiously limit my usage even if at great cost?

I did my best with the conflicting information from multiple doctors I was given, and their response is to ban me? The other nearby ketamine clinic closed down literally yesterday from when I write this, so that's not an option even for lower doses. It's not just that that's infuriating, they handled it all in the worst way possible! Initially saying they understood what happened with the CHS, that it wouldn't happen again now that I know CHS exists and so everything is fine (I should have been warned about the CHS too given all my doctors were aware I used a cannabis prescription for 8 years. Then the CHS would never have happened in the first place). Then without warning they changed their mind and didn't even have the doctor call me personally, but sent a staff member to call who was clearly uncomfortable with their decision and expressed she had nothing to do with making it! It all came down to the doctor who cowardly decided not to call himself to break the news and explain his sudden reversal. The several doctors in my family thought this ban was ridiculous and with a bit of pushback the doctor would change his mind. I did not share their optimism and I unfortunately turned out to be correct for it. They wrote letters on my behalf, the therapist who I met through through this ketamine clinic wrote a letter taking my side, all to no avail. With me now looking back to read my message in which I explained this insanity, the sheer anger is still palpable. 

    "I am FUCKING LIVID! At them and at myself. Gotta breathe deeply, in fucking rage mode right now. They’re kicking me out of the ketamine clinic after all. Even though they told me earlier not to worry, that I should be able to get more infusions soon. Even though the cannabis hyperemesis syndrome, that they agree caused all this, will never happen again. They’re kicking me out because I could have died, due to me vomiting while unconscious, could have possibly aspirated and gone into cardiac arrest which I didn’t even know happened until they informed me during that conversation. They think my future infusions need to be done at an actual hospital downtown again, so if I am somehow in danger again they’re better equipped to save me. I was already pissed off about how pushing myself too hard for the infusion when I didn’t feel 100% caused me a ton of additional suffering. Now that mistake gets me fucking kicked out, even though it is almost certainly a one-time event and not entirely my fault due to all the conflicting or insufficient info I was given? Those inconsiderate fucks. It’s been a very fucking long time since I've ever been this angry. Do you know how much harder it is for me to get downtown at 6 am if I get unlucky with my sleep schedule syncing? Trying to hold it together right now. FUCK THEM!" 

    The far away hospital they wanted me to go back to does not allow for anywhere near the same infusion doses I need for significant benefit. And that benefit, alongside cannabis was how I had obtained a 91 average in the previous semester. This blindsiding news was the nail in the coffin for my hopes of taking any courses in the next semester, perhaps the death of any chance at graduating even though I have only 9 courses left. It's insane that by the end of each day I'm too exhausted to be able to follow watching a simple TV show yet not exhausted enough to fall asleep. I am writing about the events of August 2021, it is now March 2022 and I am still no closer to returning to school. All for no good reason. I'm now starting new medications to treat a rare and extreme circadian rhythm sleep disorder call non-24-hour-sleep-wake disorder. All my previous medications have tried to treat standard (but extreme) insomnia, which is known to be unsuccessful without getting to the real underlying circadian problem. That is all to say there's still hope for me, but until I get my life back releasing my rage at my 13 years of consistent medical trauma all coming to a head may be what's a hopeless endeavor. Even so, I'd take anger over despair any day. Anger can be made motivating and useful, despair is never useful. My next blog post will explore this a bit more initially and then move onto other interesting medical/EDS advocacy topics given that the CHS story is nearly fully told. Looking forward to all of your thoughts!