Sunday, May 7, 2023

Bend or Break Psychology Education Letter: Ehlers-Danlos Syndrome Advocacy

The following is a contextual letter from Mitch Martow, the subject of the award-winning and

emotional Bend or Break documentary, which portrays the story of disabled 14-year-old

suddenly faced with a rare invisible illness who had to fight to be believed.

If there is anyone I want to hear the message of Bend or Break, it is those in a position to

provide care for patients like me in the future. I have experienced both the immense positive

impact of the care you may provide, but I have experienced the ways even the best of intentions

can lead to devastating misdiagnosis-based gaslighting and pain. Those experiencing invisible

but nonetheless physical illnesses are most vulnerable to misunderstandings and mistreatment.

Such patients can begin to believe that there is no light left at the end of the tunnel, as they feel

that their own doctors and families have turned against them. My story of pain and hope as told

in Bend or Break can provide a deeper understanding of how ill-equipped the system is to handle

individuals with invisible illness in order to further advocate for meaningful change.

Fortunately, you don’t need to take my word for it! Top administrators at several high schools

and universities have also recognized the evidential value the Bend or Break documentary

possesses for the field of psychology in particular (for more information, see Seneca College

article below).

I wish to give a heartfelt thank you to everyone who makes the effort to watch my

rollercoaster of a medical journey so that you can provide future clients with invisible

illnesses and disabilities the understanding and care I desperately needed!

Link to blog group with a collection of EDS blog posts:

Seneca College Bend or Break Psychology article:




Saturday, June 4, 2022

Something In the Way

His first ever Marathon yet he crushed it! 

    To throw in at least a little positivity I'd first like to acknowledge my amazing friend Jacob Levitt for running the 42km Toronto Marathon in honour of spreading EDS awareness and my own struggles! He plans to run again next year and this time we'll have a fundraiser for EDS causes! Jacob is no stranger to chronic pain because he suffered from a spinal infection for 2 years over a decade ago. We both supported each other during our lowest points and even though his illness got better and mine didn't, he remains a steadfast companion and zebra ally! 

EDS Canada shirt reads "Endless determination ands strength"

    This post isn’t a continuation of the Cannabis Hyperemesis Syndrome disaster story from last August (we’ll return to that another time, I think it will just take one more blog post to wrap that story up). Instead, it will be a lot shorter in length given that it talks about events occurring right now that have yet to be resolved. This whole new series of unfortunate events began around November of 2021 when I began developing what we assumed to be a series of stubborn ear infections presenting as fluctuating levels of ear inflammation. We were very wrong, and gradually began to realize I was being misdiagnosed given the antibiotics didn’t seem to have any impact other than upsetting my stomach. The nail in the coffin for the ear infection theory was the inflammation beginning to appear in both ears simultaneously! My ENT then switched his suspected diagnosis to something far more spooky: Relapsing Polychondritis (RP).

I wish I could say it was just a sunburn...

   This is a degenerative autoimmune condition that causes inflammation throughout the body. In 90% of cases the first place one gets inflammation is an ear, then the other ear, and potentially all kinds of places after that. This is very tricky to figure out because I do have plenty of inflammation in other places, such as my fingers, and costochondritis which is inflammation of the ribs. The complication is that costochondritis is also a common feature of having Ehlers-Danlos Syndrome (EDS). I also have tinnitus (ear ringing) so severe I can barely hear myself think, but that has other possible explanations too like EDS induced Temporomandibular Joint disorders. Further adding to our difficulty is the fact that the nature of this condition means that your immune system attacks healthy cartilage throughout your body.

    There is no cartilage in the earlobes, and so they are typically spared from inflammation. Mine were spared for the first several months this was going on, then that changed. It was only by joining an RP support group that we were informed on how newer research has shown that severe unabating inflammation can eventually spread to the earlobes too. Apparently tons of research such as new diagnostic criteria was just beginning but then, like with so many other important projects, the pandemic put all that on hold. This means much of the information out there on this disease is severely outdated. Plus, the condition is quite rare to begin with, affecting about 1 in 33 thousand. I was only the second case my ENT had ever seen in his long career where the earlobes were affected. 

    When I switched off the useless antibiotics, I was prescribed corticosteroid cream, though I didn’t realize how weak it was compared to other such creams. Thus its positive impact was quite limited. The rheumatologist wanted to do an ear biopsy to find out more. Unfortunately, the newest research that has also not yet been formally published indicates that such biopsies have little diagnostic value (it will show inflammation, but not necessarily what’s causing it) and can make the current flare worse to boot. Given this, the ENT prescribed 50 mg oral prednisone immunosuppressive steroids but we agreed not to actually retrieve the pills until my appointment a few days later where I would consult my dermatologist and THREE of his colleagues.

Just a teeny bit of swelling...

     That was quite the surreal experience, I was examined by four doctors and a fellow simultaneously! I’m just sitting in the room with them, looking up and back and forth between them as they argue with each other about what’s causing me all these problems. Three of them thought I had a nasty skin condition called… wait for it… Chondrodermatitis Nodularis Chronica Helicis. Both a mouthful AND a literal and figurative earful, heh. The fourth dermatologist disagreed with everyone, saying it’s not the skin condition OR RP. The problem is, he had no suggestion on what else it might be. Soooo…

    Regardless of the diagnosis I clearly had rapidly worsening inflammation issues and the mild corticosteroid cream wasn’t cutting it. And so the dermatologists gave me a new prescription for the strongest corticosteroid cream known to man. When I looked it up I found out there are actually seven classes of corticosteroid strength. The first cream was the weakest tier, class 7. The new cream, being among the strongest tier, was one THOUSAND times more powerful than what I had been using. So, I must ask why it took so long for us to give up on such weak treatments? Because as it turned out, the stronger cream still hasn’t been strong enough!

Not even a large slathering of white corticosteroid cream can hide the ear redness! 

    The disease continued to develop in a manner more reminiscent of RP than CNH, even though I’m incredibly young to have either condition. RP is known for occurring to people in their 40s-60s, whereas the skin thing is usually developed by those in their 40s. My doctors theorize that my collagen being inherently weak from my EDS connective tissue disorder is why I am getting this in my 20s. And even worse, they theorize the potential for permanent damage to my body is also higher and we’d already wasted so much time with the misdiagnoses and the incredibly weak cream! 

    Therefore we made the decision to take the very big step of filling the oral immunosuppressant prescription. This was a very big relief, because I’m the type of person who would more likely internalize frustration from hesitating at the right moment to act, as opposed to regretting an action taken decisively. I get stressed holding the gambling dice in my hand waiting for the last possible moment to throw them, but once I start the oral corticosteroids the die is cast and you just have to wait to watch how things play out. Because if we hesitate just long enough to allow this constant inflammation to cause further permanent damage to myself, I know I’d never be able to forgive myself…again. Even typing “again” just now got me emotional!

This was posted almost exactly one month before I caught swine flu, beginning a life of chronic pain. This shows my natural positive attitude state, I had no idea what was coming. 

    The typical maximum prednisone dose possible is 60 mg, and I used 50mg with gradual tapering over a 3 week period. The potential for complications with oral steroids is so much higher given the risk for it entering your bloodstream, as opposed to topical creams. The side effects are also infamous for being far nastier. You think you’re hot shit, eh prednisone? Well my ears are shit and literally too hot to touch, so FIX EM! “These are my pills. There are many like them but these ones are mine.” 

    Oral prednisone has such a wide impact that it can interact with basically all of the other copious prescriptions I’m on, but we didn’t have much of a choice. I had only just felt like I had a new lease on life thanks to a breakthrough with sleep where I’m now awake 28-30 hours and asleep 18-20. This puts me on a 48 hour sleep cycle, and anything that divides into 24 is stable, even if it’s a weird equilibrium where I still sleep through the entire day, every other day. Until last month my schedule was basically completely random, making planning anything with doctors, friends, etc impossible further than 2 days in advance. With this finally changing and me now being awake 38 hours each day, plus me getting the all clear from my immunologist that I can end my years of very strict covid isolation, I was honestly crying tears of joy. Then literally one week later I get an autoimmune condition diagnosis that requires me to reenter isolation indefinitely. I only had the chance to see one friend and my cousin indoors during that glorious week, for now I’ll have to stick to outdoor gatherings only. 

    Imagine our current alarm given that the inflammation is still not under control! If that much immunosuppression can’t get this handled when it’s mostly limited to my ears, what the hell are we going to do if it spreads somewhere far more dangerous? Given this, my doctors said to cease the tapering plan and go back to 50 mg indefinitely. This was devastating news to me, because I was supposed to fly to British Columbia for my brother’s wedding in a few weeks. I can’t fly and risk getting Covid while on such powerful immunosuppressants. And I’ve heard from other people with RP that due to the extent the disease spread they have to commit to being in isolation for the rest of their lives. It can spread to the eyes, impacting vision. To the inner ear, deafening you. To your throat, robbing you of much of your speech capabilities. Even the heart, where it can be life threatening. The fear of the unknown is just so intense.

    The prednisone isn’t working when it really should, which was less surprising than you might think given pills never seem to properly work as soon as they come into contact with my silly body. I take two dozen sleeping pills before bed and I’m still awake 30 hours each day, which is actually an improvement! Therefore I am going to start getting subcutaneous injections of an even more powerful/dangerous immunosuppressant called Methotrexate. They use this stuff for chemotherapy! It has a better chance of helping, but even if it does it will take 6-12 weeks to kick in! I'll stay on 30-50 mg of prednisone in the meantime. The side effects are even more infamously bad than high doses of prednisone. I have a plan, though! It causes extreme exhaustion, so others I’ve talked with who have taken it have to designate one day each week to get nothing done and feel miserable. However, since I sleep up to 20 hours each night, I plan to take my injection right before I sleep so that the exhaustion can actually become a good thing and be worn off by the time I wake up! We’ll just have to see if this pans out. The prednisone and corticosteroid cream treatments are becoming less effective over time, which horrifyingly suggests the degenerative disease is worsening. The inflammation used to calm down for 11 hours after each dose, now it's 6. 

    It’s just so hard for my family and doctors to believe I have so many rare problems largely independent of each other! I myself am plenty used to the incredulous feeling surrounding this. Life threatening Serotonin Syndrome is super rare, it happened to me twice anyway. Cannabis Hyperemesis syndrome is even rarer, it still happened. EDS is a relatively well-known rare disease I have of course. And now this RP autoimmune nonsense. If only they could dissect me and then put me back together. We had our suspicions that RP is connected to EDS confirmed! EDS weakens connective tissues and RP attacks the weakened throughout the body. 

Us zebras encountering each other out in the wild can be quite wholesome! 

    Around the same time I got this new diagnosis I watched the new Batman movie with Robert Pattinson (I won’t spoil any plot, he’s an adult Batman so his parents were murdered way before the movie story begins), and given everything going on it really touched me emotionally. I really related to this portrayal of Batman, it seemed the most realistic we’ve had in film. If both your parents were killed in a robbery while you were a child you probably won’t become a party-loving playboy like in other depictions. More than likely you’ll be pretty messed up mentally and emotionally. A murdering criminal stole his childhood from him, of course he’s going to be filled with rage at this injustice he had to deal with from a young age. My Satan-spawned genetics stole much of my childhood from me given how my chronic pain started at the age of 14. I keep trying to scavenge what remains. So I told myself: “Well I lost my teens and my 20s due to barely scraping by in survival mode, but we’ll catch up in my 30s. Even if it’s mostly in spirit.” But nope, instead destiny decided I would develop this degenerative condition at half the onset age it’s known for. Thanks, Mitch’s genetics. I can always count on you to be the gift that keeps on giving. 

    The theme song they chose for this Batman movie is a song called Something In The Way by Nirvana. Kurt Cobain wrote it about how he kept trying so hard to get his life back on track with his addiction issues because every time he made progress toward that goal there seemed to be Something [else new] In The Way. I’m not failing. If someone born paralyzed was entered in a race and came last did they fail the race? I had one week. One fucking week to enjoy ending my isolation before I was diagnosed with an autoimmune disease requiring indefinite immunosuppressants. I was JUST told I’m not immunocompromised based on my blood tests. There’s always ‘something in the way’, indeed. 

Link to the Nirvana song

    I got worried this week, when my tears and anger turned to sardonic laughter at my track record of if something extremely rare can go wrong, it will.  Especially this past year Murphy's Law has been taken to an insane degree. Though I do like the quote by Victor Frankl: “An abnormal reaction to an abnormal situation is normal behavior.” That night I went to bed with my ears a lot better and dared to hope I was getting a handle on this new crisis, but I woke up in the middle of the night to find the ears horribly inflamed again. They’re far too painful and tender to get a decent quality of sleep, which has already been put out of reach due to prednisone likely adding to my insomnia. It’s not easy to think about all the time we wasted on antibiotics and incredibly weak creams allowing this disease to progress. About how it feels like I’m being targeted by something malicious that caused me to get a brief taste of freedom from covid isolation only to have to reenter it one week later. How my problem with metabolizing/absorbing pills now has the potential to get me killed or more disabled rather than just making it impossible to fully treat my sleep disorder. 

    The conventional treatments are failing, and even if they do succeed a new flare can always come back derailing everything and requiring yet more isolation. I was forced to cancel plans to work at a beloved summer camp for the third year in a row. I want to be able to return to dating while I've still got some youth left but I'm as far away from that goal as ever with the constant need for isolation. I finally got somewhat of a breakthrough with sleep that made life at least bearable again. Yet somehow in no time at all I’m diagnosed with a disease that can take the choice of living away from me if left unchecked. With all these thoughts swirling around, in bed staring at the ceiling, I started crying which worsened my costochondritis rib inflammation pain which caused me to switch to disturbing humourless laughter (crying about this constantly worsening disease ruining everything and the act of crying makes the disease symptoms even worse? what a lovely hilarious feedback loop to have, on my June 3 birthday no less!) which made the pain even worse again! It’s hard to tell if my sanity is finally cracking or if the prednisone is altering my mood, which is a common side effect with it. Regardless, I plan on surviving this and then will have an even more positive story than I originally promised within the documentary! But for now it’s the hard times again, so thank you for your patience. 

Sunday, March 20, 2022

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! 

Sunday, January 9, 2022

Disintegrating Trust

    Anyone who has read my most recent blog post about dealing with almost unprecedented levels of insomnia (link below if you haven’t) knows I like to inject both silly and morbid humour in my blog, the trauma and indignant anger I continue to attempt to deal with when thinking about what happened to me in August 2021 may preclude similar levels of comedy here. I had no warnings and therefore no chance to avoid the catastrophe that I am now finally ready to describe. Although it took months to fully process what happened to me, the other significant issue is that since and as a result of the aforementioned disaster, I have usually not been sleeping well enough to write this blog at a quality that I find acceptable. Sleep Blog Link

    It was a perfect storm of a flawed medical system that allows unconventional patients slip through the cracks, the PTSD I deal with that will clearly never fully heal, and even just plain old bad luck. I was working with the inadequate medical information I was given, and this was hardly the first time that problem has become truly dangerous. My longtime readers may recall my brief 2015 blog post about being afflicted with Serotonin Syndrome; an extremely unpleasant and life threatening medication interaction that if ignored will cause you terrible pain, literally drive you insane due to serotonin overdose in the brain, and then can ultimately kill you. You can read that very short blog post here

    I had to figure out what was going on myself as just a teenager because I had no warning about that interaction potentially happening when there are too many doctors prescribing serotonin medications at the same time with and no communication with each other. You’d think they would have learned their lesson after nearly killing me, but they clearly didn’t given that the same thing happened 2 years later with a different medication combination. My point is that I’ve had to be my own advocate from the very beginning for my own safety. If I didn’t memorize my medication names and dosages while constantly monitoring changes in my physical symptoms and mental state, I could have died due to the mistakes of my many doctors. That concept brings me back to August, where events conspired to cause life changing repercussions that have yet to be solved.

    It began with unexplained nausea. My appetite was low, and so I assumed I was getting sick. It quickly became clear that that was not the issue, so we then theorized that us raising my Dayvigo medication dose from 10mg to 15mg was causing the side effects. Confusingly, even when I lowered the dose the nausea rapidly worsened over a 3 week period to the point where it was far too severe to be explained by a small dosage change. For the past 7 years I had a tried and true method for alleviating any significant on and off nausea: my cannabis prescription. It is pretty common knowledge that cannabis is a safe and effective treatment for nausea. After all, that is why it’s frequently prescribed to chemotherapy patients. If only I had been adequately warned that in extremely rare circumstances this is a misconception… If I had been cautioned appropriately the following events could have been avoided. And if I have learned anything in my life it is that my body gets a kick out of being the rare exception to many general rules.

    Treating my nausea with even more cannabis than I already typically used was one of the biggest mistakes I have ever made in my entire life and a key component of the aforementioned “perfect storm.” Another factor was my PTSD that developed from not being believed for the first 4 years after my chronic illness truly manifested in 2009. The reality of invisible illness is it takes a lot of convincing for people to even consider believing you’re sick to the extent that you claim. To avoid dealing with any accusations of laziness I have pushed myself incredibly hard to achieve some ambitious goals despite frequent and unpredictable medical crises. Frankly, as the August events have proven, it has always been too hard. Graduating from university and attending law school were sensible goals when working under the false assumption that my health would improve over time with new treatments rather than drastically worsen because of complications with those very same treatments I relied on.

    If I had set realistic goals for myself and didn’t hate myself for every setback, I would have cancelled the August ketamine infusion appointment because of the worsening nausea. I didn’t, because I was desperate. Desperate to have a successful imminent Fall university semester. Desperate to at least temporarily improve my insomnia well enough to go on dates in between semesters with the seemingly understanding girls I was having pleasant chats with on dating apps. I felt pressed for time; I needed the infusion before the September semester began. To make matters worse, my random and uncontrollable sleep schedule unluckily did not sync up with the infusion appointment. I was so determined to have this infusion I spent three days painstakingly shifting my sleep schedule by not using any of my sleeping and pain medications even after I had been awake 36+ hours. Without those meds, I would only sleep for a maximum of 3 hours despite the indescribable exhaustion, all because of my terrible chronic pain (and a possible circadian rhythm disorder we’re still investigating). After such measly naps I would wake up and stay horribly uncomfortably awake for 8 more hours and repeat this process until my schedule shifted enough to be awake for my infusion appointment. Of course there was terrible withdrawal due to going cold turkey with my massive doses of over a dozen medications to top it all off, not to mention the worsening unexplained nausea.

    I fell victim to the sunken cost fallacy. The practical desperation of harming my ambitious goals, the mental PTSD, the fact that I didn’t want to cancel and therefore make my 3 days of incredible suffering pointless… and most of all, the lack of any warning from my doctors that what happened next could ever occur in the first place! I did succeed in shifting my sleep schedule, though in hindsight I wish I hadn’t. My dad drove me to the 7 am appointment at the ketamine clinic, and while in the car I complained about my nausea and said “I don’t feel 100%, but I can’t cancel this infusion. I just can’t.” I wish my nausea was even worse so I wouldn’t have even dared to leave the house. It was most certainly significant, but by this point I had plenty worse in the past (cold turkey morphine withdrawal for instance). It simply wasn’t enough to give up on taking my usual 3 courses throughout the upcoming semester. Until it was.

Minutes before disaster 

The ketamine infusion began as it always had, and you can read about my first blog post describing them here

    By this time my infusion doses were massive due to my body’s trouble with metabolizing virtually all medications, and that was part of the problem and will be discussed later. Those close to me knew how desperate I was for this long overdue treatment so I sent them the above picture with the caption: “Gobbled the pre-infusion sedatives like candy, see you on the other side!” This demonstrated that despite my extreme exhaustion, I went into the procedure with good humour and hope and it didn’t take much for the sedatives to knock me out this time. That was the biggest problem of all. Even under completely normal circumstances, half the time such high ketamine doses will make you vomit, usually after you arrive back home and move around again. The exhaustion from needing to shift my sleep schedule meant that the administered sedatives were highly effective. The ketamine infusion exacerbated whatever was causing my chronic and worsening nausea which caused me to experience incredibly violent, painful and also extremely dangerous bouts of vomiting, given that I was unconscious.

    Dying due to choking on my own vomit was a very real possibility, especially since this was taking place at a small clinic, not a hospital. All four nurses at the clinic became fully focused on preventing my death. This was not normal vomiting that you get when you drink too much at a party; it was an extremely severe case of hyperemesis that I had never experienced before or even knew existed. Although I have no memory of it, I was told that I was screaming and thrashing in my bed while throwing up on everything and everyone around me, like something out of a horror movie. The nurses could only try to restrain me enough not to hurt both myself and them. By the time I woke up the imminent danger had passed although my intense vomiting certainly hadn’t, and the nurses were not pleased.

    We were still under the assumption that the ketamine itself was the primary causal issue. One nurse even said “Mitch can you throw up more quietly? You’re disturbing the other patients.” Then the doctor arrived and threatened to permanently kick me out the clinic due to the danger I had been in. By the time I got home the vomiting and resulting abdominal pain had only worsened. Worse yet, my 3 days of suffering were not just pointless but counterproductive, given that my decision to push myself too hard and not cancel the infusion may result in me getting permanently kicked out of the only clinic willing to give me the high doses of intravenous ketamine I need to function. My plans for the next semester and dating apps were in tatters. I wanted to succeed with those endeavors so badly that my actions to make them work ensured their failure. It was simultaneously one of the most physically and emotionally painful days of my entire 26 year life. I had only an hour to contemplate my catastrophic mistakes because instead of improving as I recovered from the large ketamine dose I continually got worse and by this point we still had no explanation for the nausea that started off so mildly weeks ago.

    To convey my mental and physical state by the time I returned home from the infusion I will copy/paste the update I sent to friends and family back in the middle of this:

    “I am shell shocked. The infusion didn’t work, I was too nauseous from whatever has been destroying me these past 2 weeks even though they only got up to a half dose of ketamine. The experience was so bad for me and the team of nurses working on me that they threatened to discharge me back to a downtown hospital (my previous lower dosed infusion location.) I assured them it wouldn’t happen again and we’ll do another infusion only after I’ve dealt with whatever is making me nauseous. This was one of the worst experiences of my life, even if you don’t count the last few days leading up to it. I should be angry or sad. I’m just numb. Complete mental and physical shock. I haven’t eaten or drank anything since midnight and I’m still puking huge amounts of bile even though they kept telling me about the insane amount of anti-nausea medications they were giving me. I was in so much discomfort I was thrashing on the bed with several nurses all trying to manage me like something out of a horror movie. I threw up over all of them, loudly, violently. They were so rattled that, like I said, the doctor threatened to kick me out back to the downtown hospital infusion clinic. Which would be terrible, this clinic is 10 minutes away from home and I have to be there at 7 am. The hospital one is [50 minutes away] downtown. I assured them this one won’t happen again, we’re going to follow up soon and then I’m going to find out the fucking cause of this fucking 2 week incessant nausea and excise it from my life so I can go get another infusion. The 4 dates I had planned for once I got through this infusion? Fuck that, they’ll still be there when I’m recovered or they won’t. Step one is stopping to take the increased dose of that new sleeping pill. This almost seems too severe for that to be the cause, but I’ll stop it anyway and if nothing happens I go see my doctor and get this sorted. This is the consequence of trying too hard for too long, I bit off more than I could chew. It doesn’t matter what physical discomforts I can overcome mentally if I have to fight my body every step of the way. For now, I’m done. I need a break. I need to heal. So much suffering and all I accomplished was almost getting kicked out of the clinic. Still need another infusion… Ah, numbness is receding. Here comes the emotional breakdown. Pointless extreme suffering is not something I can handle.” Imagine pushing yourself to endure some of the worst suffering of your life to get a treatment you need to catch up with school and graduate like your able-bodied friends, and somehow all you accomplish is having the clinic threaten to kick you out because you could have died under their supervision.

    I still have a 14 second video of that emotional breakdown, and it’s been quite the dilemma on if I should include the video in this blog post. I asked a couple family members to weigh in and they said I probably shouldn’t because even some of my closest friends couldn’t bring themselves to watch and see me more distraught than they had ever seen with their own eyes before. I can at least articulate what I said in the video in which I broke down in tears: “It’s not fair. It’s not fair. I tried so hard to make this [infusion appointment] happen, and it blew up in my face!”

    My friends and family were of course extremely concerned about me given my messages and the video. I began to regain my composure enough to frequently reply with dark humour throughout my assurances I wasn’t suicidal again. If I can retain at least a morbid sense of humour, it’s a good indication that I’m very upset but not actively suicidal. I told them “Don’t worry, even if I wanted to kill myself [right now] I’d just throw up my pills five seconds after taking them. And I wouldn’t use pills again anyway; it’s not fair to the doctors who prescribe them.” By this point the doctors in my family were all in agreement it was well past time to go to the emergency room. My dad drove me over while I was in contact with the other two doctor relatives to speculate at a diagnosis to explain what was happening. There was no shortage of suggestions: Appendicitis, cholecystitis, small bowel obstruction, pancreatitis, severe gastroparesis, or complications from my many previous hernias. None of these were correct and due to my condition continuing to worsen rather than improve, I had to stay at the hospital overnight without any answers.

    Due to being unable to eat or drink for so long and unabated vomiting continuously draining my fluids I was extremely dehydrated by the time I arrived at the hospital which would have become dangerous without the continuous IV fluids I received there. Tests showed I had an elevated white cell count due to the unsurprisingly high level of stress I was under. A normal white blood cell count is between 4,500 to 11,000 while my count was 27,000! The anti-nausea medications I was given weren’t helping in the slightest. A negative CT-scan meant I had no intestinal blockage but the scan did show that my lungs were very irritated so we got a Covid test that was also negative.

    We later realized my lungs were abnormal because the persistent vomiting meant some of it was getting into my lungs! My dad stayed with me until midnight and even as a doctor himself he was incredulous that my body was still finding things to throw up given, by that point, I had eaten nothing for 24 hours. I was filling the container they gave me full of bile at an alarming rate for the majority of my hospital stay. No exaggeration, I’d say I threw up 90 times over the span of a few days. A decent sleep was out of the question both because of the pain and because if I took my usual dosages I would either throw up the medication or be too sedated to see the doctor the next morning. Not to mention there wasn’t space to give me a real room; I had to stay in the emergency room with tons of loud beeping machines next-door to an elderly patient with dementia who wouldn’t stop screaming “Someone help me! Please help me!” for hours at a time. The staff all ignored her because there was nothing she really needed help with, she was just scared and confused.

    It wasn’t until the next morning that I received a diagnosis that was equally astounding and infuriating to explain the last 2 weeks of hell. In the past, I have frequently described how I credit the THC medical marijuana prescription I received in 2014 for getting my life relatively back on track. The instant the prescription reached an effective dose to help increase my sleep quality I rapidly went from a seemingly hopeless high school dropout, to an honour roll graduate and high achieving student at the University of Guelph. Anyone close to me that was skeptical about the notion of giving a 19 year old dropout easy access to weed threw their concerns out the window when they saw my life positively change to such an incredible degree. Sure, maybe it caused memory issues to use it every night so my pain level could be reduced enough to sleep, but that didn’t stop me from working hard enough to achieve a near 86 GPA. We were told it’s not ideal to prescribe daily cannabis use for someone under 25 since the brain is still developing. Unfortunately, it was either that or accept the damage caused by ridiculous levels of chronic sleep deprivation, more dangerous medications, and even the higher risk of suicide. In general, however, we viewed it as perfectly safe because that’s what both general public knowledge and the specialists we relied on led us to believe. And yet the day after checking into the emergency room I was given a conclusive diagnosis of Cannabis Hyperemesis Syndrome (CHS), which goes to show how wrong we were. Link to info on this rare complication here

    The truth was out; it was my frequent cannabis use that was causing my nausea the whole time! I was using even more cannabis than I normally did to treat the nausea the cannabis was causing! I had zero issues from my cannabis prescription aside from perhaps memory loss for 7 years. Now suddenly it was shutting down my digestive system! Only daily use for many years can lead to this, and even so it’s incredibly rare to occur at all and rarer still to be so severe. Typical anti-nausea meds do not help with this syndrome but they gave them to me anyway along with potassium pills because excessive vomiting also caused my levels to be alarmingly low. This condition is very under-researched and so we had no idea if I could ever use cannabis again which I was utterly dependent on to sleep well enough to function in any capacity. Why did none of my countless doctors, two of whom were cannabis specialists, ever warn me that this can potentially happen from long term daily cannabis use? I understand that it’s impractical to warn every patient about all the extremely unlikely side effects/interactions occurring, so I put more blame on the system than the doctors themselves. Let’s use the cannabis issue as an example. When a doctor prescribes it to be used every day for potentially the rest of the patient’s life, the pamphlet they give to their patient, containing basic info should include an online link to a page that describes the potential rare complications from long term cannabis use. That way if the rare dangerous scenarios do occur, the patient won’t make it even worse and will temporarily cease using cannabis when nauseous instead of using more. 

    More frustration came from how not long after I was informed that another reason the infusion was such a disaster is that I had no tolerance built up to ketamine by August. My original ketamine specialist who referred me to this newer clinic had told me I need to minimize my ketamine usage or else in the long term it can result in permanent brain damage. This of course greatly concerned me, so when he said to stop using my ketamine nasal spray medication I did so with great difficulty in the middle of a tough semester. I was allowed to get infusions once every 3 months, but to minimize my ketamine intake I waited 5 months. The unfortunate consequence is that I had no tolerance to ketamine left by the time of the August infusion, which the newer ketamine specialist said (unhelpfully after the fact) was yet another reason why the high-dosed infusion was such a disaster. Talk about conflicting information! One doctor said to minimize ketamine as much as possible, while the other says I need to have some in my system for the infusions to be accepted by my body. Why is it such a common theme for me not to be given the crucial medical information I need to prevent myself from either dying or losing all of my functioning again? It gets even worse, because, despite these occurrences not being mostly my fault (I do share some blame for not cancelling the infusion out of an abundance of caution when feeling nauseous) and that it was obvious this nightmare scenario wouldn’t happen again, they did in fact permanently kick me out of the ketamine clinic! They said given the significant risk of death during that fateful infusion I need to get my infusions done at a hospital rather than a clinic for my own safety. There are several problems with this.

    Firstly, the hospitals are 50 minutes away from where I live and I need to arrive there at 7 am. With my extremely unpredictable and uncontrollable sleep schedule issues, pulling this off is a nightmare. Additionally, only this specific clinic was willing to give me the ketamine doses I need for any true benefit from the infusion. I had plenty of infusions at that high dose in the same clinic that proceeded perfectly smoothly; there were several onetime events all peaking at the same time to ruin the most recent infusion. And most important of all, that hospital isn’t doing infusions anymore during the pandemic because of numerous Covid outbreaks at the hospital anyway! The doctors in my family tried to convince the doctor running the ketamine clinic that kicking me out does not make sense. We even had the ketamine psychotherapist that works in the clinic (they find therapy sessions are more effective when done simultaneously with an infusion) argue my case but it was all to no avail. The decision to ban me forever was final and handled in such a terrible way too.

    After my CHS diagnosis explained what primarily went wrong with the infusion, I was assured that they understood this multi-faceted scenario would not be repeated and so they would call me in a few days to book my next appointment. As such, when they did call, I was excited to answer and hear when I could get another shot at my badly needed infusion. Instead, they said I’m not allowed back. To add insult to injury, the doctor who made this decision didn’t even call me himself to break the news. He assigned one of his staff members who had no involvement with banning me to pass on the message. They did not bother to explain to me why I was initially given false assurances that I could continue treatments at the clinic.

    Amidst perhaps the worst physical medical crisis of my life, this news was a massive psychological burden. I had now perhaps permanently lost access to my two most important medications, cannabis and ketamine. I was left with no choice but to put university on hold indefinitely when I had only 9 courses left to graduate after 6 years of struggle. Without those treatments I couldn’t sleep well enough to concentrate on a simple recreational book, let alone a university course textbook. It’s now five months later and I have still yet to come close to my previous level of functioning. It’s hard not to feel like I wasted the past 6 years since beginning my classes. Managing a chronic illness that limits mobility while away at university isn’t exactly easy. Although I’m awake 36 hours every day it’s not like I can work productively for even a majority of those hours, not to mention then sleeping for 20 hours each night. Under such conditions, getting high grades with 3 courses each semester is hardly a cakewalk. My only imminent hope is that the efforts to diagnose and treat the circadian rhythm disorder discussed in my last blog post titled “Dreaming of Sleep” works out, which is still a very big ‘if’ as we wait for my various obscure sleep test results.

    To recap, I used cannabis to treat nausea caused by cannabis because no one warned me about this when it was prescribed to me in 2014 or anytime in the 7 years after. I got conflicting information about how to safely use ketamine from my other doctors. We don’t know who gave me incorrect or misleading advice, but it could have gotten me killed during the infusion. Yet their response was to ban me from the clinic forever for no good reason given the implausibility of the unique dangerous scenario reoccurring, while handling this decision in the worst possible manner, thus crushing my hopes of finishing the last of my university courses anytime soon or maybe ever. My trust in those meant to care for me has now been dealt a grievous blow, hence the “Disintegrating Trust” title of this post. When I first entered the emergency room, I was wallowing in total despair which if you know my history wasn’t the first time, but by the time I left I was trying to manage the worst righteous rage I had ever experienced in my entire life. The drastic shift in emotions and how I dealt with them will be explored in the next blog post!