New Blog: A GLIMMER OF HOPE (sorry it’s so long but if you can, please read to the end and send some extra light and love my way!)

Over the course of the last few months I’ve mentioned several times that I have been waiting since May/June to find out if the specialist my Psychiatrist originally referred me to has accepted the referral he made. I’d received an email in the summer (which I shared at the time) stating that the referral would take 8 to 12 weeks just to process and then once accepted, it would take another 6 to 12 months to call me to book an actual appointment. I called the specialist’s office again last week and left a message to find out where I am in the queue at this point. I received a phone call back this morning (which I was pleasantly surprised to hear back at all) but was informed that although the referral has been processed I shouldn’t expect to hear from them for still another 6 to 9 more months in order to book my appointment. She kindly offered to put me on their waitlist to try to prioritize my queue. I accepted without hesitation. 

You can probably imagine by this point that I am beyond frustrated, well actually I’m way beyond the point of frustration now; I’m infuriated, leaving a whole other part of me now wanting to die as well. 

I can’t do this anymore. I just want to scream and cry and maybe throw something. 

But can anyone really blame me? 

In the meantime though, my psychiatrist, who thankfully has not given up on me yet, recently made a few additional referrals as well to other specalists along hospital row in downtown Toronto (ranked as some of the greatest hospitals in Canada and around the world) who had come highly recommended to him by other doctors; Urologists, Sexual Health Doctors and Gynecologists alike. Someone has to know something about this very rare disorder I’m dealing with (and without a 12 to 18 month wait time) which statistically affects only 1% of the population in the world and is completely destroying whatever quality of life I feel like I have left. Well guess what? Every single new referral he has made recently for me were all declined immediately after receiving them due to the doctor’s lack of knowledge on my condition and the lack of research that’s been done as well over the last 20 years since it first received an actual name in the medical field. 

I just can’t do this anymore. I’m overwhelmed and scared for my life but today I did finally receive a piece of positive news which I’m trying desperately to hold on to along with a last glimmer of hope in my heart. 

Throughout my journey over the last 8+ years I’ve had to fight for my life more times than I can count and have learned just how important self-advocacy is and now on this new leg of my journey I’ve found myself having to work overtime in order to try and get the help I need regarding my new issues that began at the onset of my Psilocybin treatment back in April. I’ve done hours upon hours of my own research, read many articles, gathered bits and pieces of information and treatment options through an amazing Facebook group I found and have spoken with a professor in Biochemical and Molecular Sciences and is considered a tier 1 expert and researcher in Sexual Health, Neurology, Psychology and Rehabilitation Therapy in Ontario. 

My Psychiatrist has also been doing his own diligent research on my condition and what we have both found is one treatment option in particular most consistently recommended and with particularly good results. Unfortunately though it is not covered by our healthcare system (of course) and is very expensive and therefore has not been a viable option for me financially right now but, and here is where the positive news enters the picture. 

Late last week I had my regularly scheduled appointment with my Psychiatrist where I sobbed uncontrollably and said once again to him, “I don’t think I can do this anymore.” Well first thing this morning he called me, with an answer to my statement I’d made days earlier as he spoke the words, “Let’s try one more time.” You see, immediately following our conversation late Thursday afternoon, my Psychiatrist reached out to his research team from the clinical study to discuss where I’m at in this process and to discuss this treatment option with them further. He also reached out to the clinic I was in contact with as well to gather more information on the treatment; he let me know he was doing so. He called me this morning to then let me know that the research team will be providing the funding needed for the treatment. He was so apologetic and extremely remorseful as to what has happened to me. I know it’s not his fault at all but it felt really good to hear it nonetheless and maybe, fingers crossed, by the time I eventually do hear from the referral made back in the Spring, in however many months from now that I’ve been hanging all hope on, I will no longer need their help and I can give up my spot to the next person in the queue.

*I have my first appointment already scheduled for later this week, with 8 to 10 additional appointments following. It’s a more holistic approach to medicine and takes on a neurological, physiological and psychological approach…and the best part is, I am not the first person they have treated at their clinic with my condition! 

In case you missed my blog explaining the details of my current situation please go to link below.

https://youareenough712.wordpress.com/2022/09/20/tmi/

#Psilocybin #clinicalstudy #aglimmerofhope #funding #healthcare #ourhealthcaresystemsucks #mentalhealth #treatmentresistantdepression #sayalittleprayerforme #loveandlight

Author: Kim Fluxgold

Wife, mom of 3 beautiful children, dog lover, creative sole and children's book Author. Sharing my journey with depression and anxiety through blogging in hopes of educating and ending the stigma.

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