I had finished the York Ted Talk X
speech fairly quickly; I wanted to have as much time to practice as possible.
The focus of the topic ended up being self-advocacy for medical patients such
as me. I’ve learned so many lessons in that respect in the past 9 years that
I’ll hopefully make sure others don’t also have to learn them the hard way like I did. It’s
especially important for those with invisible illnesses to learn how to get the
truth of what’s going on out no matter how long it takes.
After the semester ended it was time
to see all my doctors. I had 6 appointments in the span of 5 days, one of which
was the second dose of ketamine. The first time I went to the clinic was before the semester started where I received a dose of 10 ml. This last time I was given 20. My appointment next month will be 30. According to my own internet searches the maximum dose is 100 so I still have a long way to go. Thankfully, the interval between appointments is finally shortening. I was a lot less tired on my second visit so I didn't get knocked out for hours like the first time but I did almost fall asleep even though I had just woken up. This continues what seems like massive potential for ketamine to work as a sleep aid. There still wasn't much of a difference in the pain itself so I have been feeling a bit depressed since that appointment. I wish they had told me the long term timeline at my first visit so I didn't put so much importance on this second infusion. Now I'm going to have to keep struggling, probably with only one course at Guelph, and even then there's no guarantee the pain will get helped anytime soon. I had to look up the dosages myself because the doctor refused to explain the different tiers. She just kept saying, "It depends on how you react to the treatments" over and over again. I understood that but just wanted to get an idea for where I might expect real improvement based on the average usual results. I think they are ageist and are worried I am so insistent on getting the pills is because I want to sell them. I still haven't seen anyone at the clinic under the age of 60. They don't understand how resistant to treatment my pain is. I won't improve if we don't make use of the sedating effects of ketamine so I can take a pill or something before bed so it's not like I want to take them during the day and be high all the time.
In the fall 2017 semester one of the classes I was taking was a course that combined political science and law. I was very interested in the material and was doing well at first but as my pain and by extension sleep worsened I simply didn’t have enough good days to read the required heavily written material. I managed to read the entire law textbook but that alone wasn't good enough. Reading dense law texts takes a lot of concentration and when you only get a few hours of sleep that becomes impossible. The class was originally located in a building with many huge flights of stairs and no elevator. The Guelph Student Accessibility Services responded to my concern quickly and moved the whole class to a new building for me. Unfortunately I still ended up having to drop the course which was pretty depressing. I did well in my other political science course at least, ended up with an 87. I have the marks for law school but at my current rate it’ll take forever to get there. Hopefully getting to a decent dose of ketamine will change things. I still think becoming a judge would be perfect for me. I've already got a small bit of experience with that anyway, I was elected as the senior member on the disciplinary committee at the summer camp I work at for several years and am sworn to secrecy when it comes to specific cases, but I think I did a good job.
I also finally saw the allergist that the EDS clinic referred me to almost a year ago. After the clinic's assessment they said they suspected that Mast Cell Disease, associated with EDS, was the cause of my extremely painful stinging rashes that would come on seemingly randomly. However, recently, I started noticing patterns. I observed that it would usually happen when I play a game of nerf or work out and so I proposed to my dad that maybe it's tied to exertion. He explained to me that certain people can become allergic to their own sweat and I said that makes sense because I also then remembered it got really bad in the hot weather of our trip to Cancun. The medical term for this is Exercise-Induced Urticaria.
The allergist agreed with this diagnosis but said that the treatment for Mast Cell and a sweat allergy are the same: special antihistamines; so either way the medication I'm about to start could help. I hate not being able to do cardio out of fear from a stinging attack. We did many blood and allergy tests while at Saint Micheal's Hospital. The needles were for testing different insect stings and blood tests for underlying causes. I'd never been poked so much in my entire life. All those dots on my arms were each from a needle injection and I had just as many on my other arm. This was actually taken a few days after the test so it's not as pronounced, making some hard to see. I count 13 holes on that arm alone. The tests were negative but false negatives aren't uncommon. We would have to pay quite a bit to get the next more reliable level of testing. We're still deciding on whether to do it. While I was at the EDS clinic they explained that certain of my fingers locking in two positions is actually my tendon sliding over my bone.
I then went to the dentist and the receptionist wouldn't stop commenting on how tired I looked. It was mentioned five times in one conversation. It upset me a bit because I overall I was so mentally tired from the roller coaster of emotions when it comes to ketamine. It's likely that ketamine probably won't help for quite awhile butI just need the ordeal to end so I can stop feeling perpetually exhausted both physically and mentally.
I love the Nerf Club at Guelph but it really does push me to my physical limits in terms of leg usage. Things only got more difficult after the gym was renovated and the new entrance was 10 times farther from the nerf gym. This meant there was a lot more walking involved right before the already straining nerf game. I wrote to SAS requesting a wheelchair to be kept at the entrance so I can roll myself to the nerf gym. They said they would do so and the first week I went there was no chair. The next week I went and there was a chair, but it wasn't one that you can push yourself. Everyone gets to the gym at different times so it's not like I can go with friends and have them push me. A push-less chair is essentially useless. It goes without saying I wasn't very impressed.
My masseuses know my pain has been worsening just as much as I do. The tightness is a dead giveaway and when we say hello it usually follows with them saying: "Feeling the usual?" "Yep," "That bad, eh?" While that's happening, I need disability accommodations more than ever. This year I started seeing a new family doctor who was reluctant to write a note to the university asking them to let me have medical parking like my previous doctor did. He thought a car being on the other side of the parking lot isn't a big deal and he would have been right. The issue is that on very busy days the entire parking lot is full which forces me to have to park significantly farther away. When I was insistent he simply said the extra walking would be good "exercise"... He eventually relented when I promised that if the parking lot was never full I wouldn't ask for medical parking in the next semester. Turned out there was no nearby free space on the very first day and since I hadn't picked up my permit yet I had to pay at a parking meter.
Due to unlucky coincidences I kept getting nose bleeds while driving my car which is obviously distracting and therefore dangerous. It got to the point where I decided it was warranted to get a third cauterization in the same spot (right nostril) as the previous ones. We think a combination of EDS causing easy bleeding and me breaking my nose so many times contributed to the problem. It definitely hurts a bit while it happens but the recovery is relatively easy, nothing like the deviated septum correction surgery.
There was a specific moment I finally accepted the reality that my pain is worsening. I had woken up at 6:20 pm and had important events coming up early in the upcoming days and couldn't afford the time it would take to slowly wake up earlier each day like I usually do. For the first time ever since my pain started I decided to try doing an all-nighter so I could fall asleep and then wake up early. Things didn't go as planned. I found a getting fan blowing on my face helped me stay awake but as I should have foreseen I started getting very sick. Yet after pulling it off and staying awake all day I
still couldn't fall asleep because of the pain. I took the realization well at first but as it sunk in that changed. It's not really possible when at university but while at home I've started using the opposite strategy when I accidentally become nocturnal. I set no morning alarms and let myself sleep in as long as possible each day. Each day I wake up later and so eventually the clock comes back to normal for a little while. It's far less unpleasant than an all-nighter and lets me avoid getting sick but is only doable when I have a few days where I can afford being nocturnal as the clock shifts.
Sometimes it feels like good days can be harder than bad days. I get to thinking about all the things that I could have accomplished if every day was a "good" day. Hell, maybe I'd even be taller because apparently sleep deprivation can impair growth. I can so easily imagine myself having the freedom to pursue my interests. I was just starting to learn how to spar at martial arts when my pain started, I felt like I had a talent for it and was excited to train and compete in tournaments like my older brother. I actually still have good response reflexes from those classes. I 100% would have taken swordfighting lessons for fun, I like watching tournaments once in awhile. Sure I have been trying sit-skiing now but I'm definitely still envious when I see family ski trip pictures. Since I used to love hockey I still like to ironically wear a shirt of a hockey player with the tag line "Once you start, try stopping." I'm also certain my relationships would be vastly different if I was healthy. Reading old Facebook conversations from the period I was on morphine is particularly upsetting. I did keep apologizing for it but many relationships ended during that time period. Nowadays illness gets in the way of dating apps because most 22 year olds aren't mature enough to accept all this medical baggage, they have different priorities. The future is friendly in that respect. I also feel like all my hugs are awkward because all I can focus on while standing up is sitting back down again. I was never particularly graceful to begin with but when in such pain it's a whole new ball game of minor but noticeable deviance.
