I waited for months to hear from the ketamine clinic after my
neurologist said he had referred me. We all know how slow Canadian healthcare
can be, so when months went by without me hearing anything I kept waiting
patiently. Three or four months later I decided to take matters into my own
hands. I was never told the name of the clinic so I spent a few hours online
tracking down the contact information of likely suspects. Eventually I got a
concrete name and I found out why I had never heard from them. Apparently they
did receive my referral from my doctor, but they were never given my phone
number so they couldn’t call me to book an appointment. I was obviously
frustrated but they said they’d book one then and there so I tried to be
diplomatic. It was hard to discover I had wasted months waiting for no good
reason. If the health care workers didn’t mess up I would have been able to try
ketamine before the 2017 school year began. I have to wonder why they didn’t
just call my doctor’s office to ask for my number? The first 3 times I called
them they put me on hold for 45 minutes and then dropped the call. It took
hours of telephone tag to get in touch with them as a patient instead of a
doctor but if I had done nothing I would have been waiting essentially indefinitely.
The unfortunate reality of our struggling healthcare system is that patients
sometimes must take matters into their own hands and be proactive.
Weeks later the long awaited appointment date had arrived. The first thing I noticed is that I was the youngest person there by many decades. I'd peg 85% of the patients as over the age of 70. A funny truth I noticed is the harder you work to be healthy the more random people hate you for it. I look healthy because I work out whenever I can through the pain. It takes discipline not to get addicted to some of these long term medications like codeine. When you have an invisible illness the more successful you are the more hate you get. Society wants to see you suffer before they give their goodwill to help you. One of the many old guys in the room was glaring at me most of the time during the infusion. I got the impression he thought I was just there to get high or something. I was the only youth there and I didn't bring my cane so I looked to be walking normally for the most part. It's another funny truth that random people assume I'm a faker at the doctor or on the subway or whatever because I don't have my cane which then encourages me to bring my cane with even if I happen to be having a good day. It's quite the self-fulfilling prophecy. I also thought it was interestingly strange that it's mandatory for someone to come with to the clinic to drive you home and take care of you yet they make family wait in the waiting room rather than come into the infusion room.
It was time for the IV to go in and even though the nurse admitted I have good big veins they had a lot of trouble getting it in. They had to try half a dozen times. They apologized but I matter-of-factly replied that the repeated needles are completely insignificant compared to my constant leg pain. They were half impressed and half sympathetic, they rubbed my head in a friendly matter and then the lidocane-ketamine infusion began. I had already tried lidocane infusions back in 2010ish but they didn't help at all. It's the ketamine that I'm betting on. I was warned that it can cause hallucinations. Since we were starting on a very low dose I guessed that it wouldn't have a significant effect, good or bad. I was wrong. The first thing I noticed was that I got double vision. There was a slight high feeling so I could see why ketamine is sometimes used recreationally(illegally.) It wasn't hugely different than medical marijuana. It puts you in a kind of trance where you realize every few minutes that you keep daydreaming. The most obvious effect was sedation more so than pain relief. When I got home I tried to stay awake but fell asleep for 3 hours in the middle of the day. I'd say the pain went from 8 to a 7 out of 10 but it didn't last long at all. It was far more powerful than the other medications I've tried. They noted I had a heart rate of 120. Overall it was a very promising start. The next infusion is in December. I had heard from the EDS Facebook group that there is ketamine in pill and nasal spray forms. If I could take those before bed the potential for helping me sleep is huge. They promised to look into those forms if the next infusion of a higher dose goes well.
My memoir which is mostly comprised of these blogs posts is done. I've read 4 other similar memoirs so I can compare them to mine when sitting down with a publisher. I will be able to point at what made each successful and how my book incorporates all of those different strengths into one product. The next step is working with the professional writer who is helping me to create a high quality pitch. I was going to read a fifth memoir called Prozac Nation but by the end of the first chapter I found the author too insufferable to abide. Basically they were mentally ill and had pills that were very effective in managing the symptoms. She refused to take these pills just because she didn't like the idea of taking them. As someone who's life would be vastly improved if my pills actually worked and had a normal effect on me it's hard to feel empathy for someone who throws such a gift away. I don't want to read about someone's life getting destroyed simply because they don't like taking the medication that helps. Each of the other memoirs had something to offer. One called My Imaginary Illness had a story almost identical to mine but the writing style couldn't be more different. She has zero humor in her writing and her book is aimed toward health care profesionnals to show them the perils of doctoral arrogance. Another called Drunk Mom was extremely open and honest even when it made the author look like a horrible parent. One called The Boy In The Moon had a research element and was written by the parent instead of the patient. The last one was called Limbo and is well written but it ended with the author giving up her career dreams as a concert pianist and resigning herself to life in a wheelchair. I have recently come to the realization that my pain has been gradually getting worse over the years and so it wasn't a very uplifting ending. The lesson it should teach me is to accept reality and not hate yourself for it but I guess I need more time to get there because I am often told I'm too hard on myself. Before I actually began writing the pitch another more pressing opportunity presented itself. I was invited to be a speaker at a Ted Talk X event at York University!
Weeks later the long awaited appointment date had arrived. The first thing I noticed is that I was the youngest person there by many decades. I'd peg 85% of the patients as over the age of 70. A funny truth I noticed is the harder you work to be healthy the more random people hate you for it. I look healthy because I work out whenever I can through the pain. It takes discipline not to get addicted to some of these long term medications like codeine. When you have an invisible illness the more successful you are the more hate you get. Society wants to see you suffer before they give their goodwill to help you. One of the many old guys in the room was glaring at me most of the time during the infusion. I got the impression he thought I was just there to get high or something. I was the only youth there and I didn't bring my cane so I looked to be walking normally for the most part. It's another funny truth that random people assume I'm a faker at the doctor or on the subway or whatever because I don't have my cane which then encourages me to bring my cane with even if I happen to be having a good day. It's quite the self-fulfilling prophecy. I also thought it was interestingly strange that it's mandatory for someone to come with to the clinic to drive you home and take care of you yet they make family wait in the waiting room rather than come into the infusion room.
It was time for the IV to go in and even though the nurse admitted I have good big veins they had a lot of trouble getting it in. They had to try half a dozen times. They apologized but I matter-of-factly replied that the repeated needles are completely insignificant compared to my constant leg pain. They were half impressed and half sympathetic, they rubbed my head in a friendly matter and then the lidocane-ketamine infusion began. I had already tried lidocane infusions back in 2010ish but they didn't help at all. It's the ketamine that I'm betting on. I was warned that it can cause hallucinations. Since we were starting on a very low dose I guessed that it wouldn't have a significant effect, good or bad. I was wrong. The first thing I noticed was that I got double vision. There was a slight high feeling so I could see why ketamine is sometimes used recreationally(illegally.) It wasn't hugely different than medical marijuana. It puts you in a kind of trance where you realize every few minutes that you keep daydreaming. The most obvious effect was sedation more so than pain relief. When I got home I tried to stay awake but fell asleep for 3 hours in the middle of the day. I'd say the pain went from 8 to a 7 out of 10 but it didn't last long at all. It was far more powerful than the other medications I've tried. They noted I had a heart rate of 120. Overall it was a very promising start. The next infusion is in December. I had heard from the EDS Facebook group that there is ketamine in pill and nasal spray forms. If I could take those before bed the potential for helping me sleep is huge. They promised to look into those forms if the next infusion of a higher dose goes well.
My memoir which is mostly comprised of these blogs posts is done. I've read 4 other similar memoirs so I can compare them to mine when sitting down with a publisher. I will be able to point at what made each successful and how my book incorporates all of those different strengths into one product. The next step is working with the professional writer who is helping me to create a high quality pitch. I was going to read a fifth memoir called Prozac Nation but by the end of the first chapter I found the author too insufferable to abide. Basically they were mentally ill and had pills that were very effective in managing the symptoms. She refused to take these pills just because she didn't like the idea of taking them. As someone who's life would be vastly improved if my pills actually worked and had a normal effect on me it's hard to feel empathy for someone who throws such a gift away. I don't want to read about someone's life getting destroyed simply because they don't like taking the medication that helps. Each of the other memoirs had something to offer. One called My Imaginary Illness had a story almost identical to mine but the writing style couldn't be more different. She has zero humor in her writing and her book is aimed toward health care profesionnals to show them the perils of doctoral arrogance. Another called Drunk Mom was extremely open and honest even when it made the author look like a horrible parent. One called The Boy In The Moon had a research element and was written by the parent instead of the patient. The last one was called Limbo and is well written but it ended with the author giving up her career dreams as a concert pianist and resigning herself to life in a wheelchair. I have recently come to the realization that my pain has been gradually getting worse over the years and so it wasn't a very uplifting ending. The lesson it should teach me is to accept reality and not hate yourself for it but I guess I need more time to get there because I am often told I'm too hard on myself. Before I actually began writing the pitch another more pressing opportunity presented itself. I was invited to be a speaker at a Ted Talk X event at York University!
