Later on this afternoon I have an appointment to see a specialist at a downtown Toronto Hospital; just one of the many I’ve seen over the past year. My Psychiatrist made this particular referral for me just under a year ago now. Eleven and a half months to be exact. Damn our fucking healthcare system.
It was a year ago this coming week when I finally found just enough strength to open up to not only Rich but to my entire care team as well about how much I was actually suffering since I had participated in the clinical research trial for Psilocybin a month earlier where I lay convulsing for nearly 6 hours, curled up on a very uncomfortable couch, sweat pouring off me, a dark mask covering my eyes and a set of headphones blasting very distressing music in my ears. I wanted to rip my skin off.
For the entire month following the treatment I kept trying to convince myself that the side effects would go away soon, or better, the symptoms were all in my head; neither of which were true. Instead the symptoms kept persisting and were becoming more and more unbearable to live with and at which time I knew I could no longer suffer in silence; even as awkward, uncomfortable, embarrassing and difficult as it was for me to talk about.
I felt so defeated. I knew by then that the treatment hadn’t helped my mental health and on top of it all I was now living with severe neurological issues which are still very prevalent today. As I’ve mentioned many times over the past year, most days I feel a constant tingling sensation in my hands and feet, brain zaps, blurred vision, shakiness, numbness, muscle aches and weakness in my hands, body tremors, an overwhelming sensitivity to touch and noise and a very rare, unbearable and unrelenting disorder in my nether regions better known as PGAD (https://my.clevelandclinic.org/health/diseases/23998-persistent-genital-arousal-disorder) which I opened up about in a blog last Fall, desperately hoping someone could possibly help me (https://youareenough712.wordpress.com/2022/09/20/tmi/).
Today’s appointment is specifically connected to my latter issue. The only referral my Psychiatrist has made over the last year in regards to this unbearable and unrelenting disorder that wasn’t immediately declined by specialists as most doctors have not been educated enough or knowledgeable about how to treat it; at least in Canada that is (it’s still a fairly new and under-researched disorder). This specialist may very well end up being no different than the rest as he admittedly told both myself and my Psychiatrist right after having my virtual intake appointment last year with his assistant that he doesn’t think he can help with my condition but at least he is willing to meet with me, and do an examination and some further testing too.
I’ve tried so hard to be “patient”. I’ve tried so hard to stay hopeful and I’m trying so hard to keep fighting. I made a promise to myself a couple of weeks ago that I would wait until the end of this month before making any further decisions as to the next steps of my journey. So for today and through to the end of what is likely to be a very emotionally charged weekend for me (stay tuned) I will try hard to be patient, stay hopeful and keep fighting; and maybe, just maybe, at the end of the day it will have all been worth the wait.
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YouAreEnough 