The Hernia Surgery

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

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

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

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

Ketamine: Round Two

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

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

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

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

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

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

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

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

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

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

Article Link

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

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