Cannabis and CRPS

Hello everyone.

I wanted to take some time to write about my experience with medical cannabis. My friends often ask me if I use cannabis for pain, and if it’s effective. So get ready for loads of thoughts, feelings, science, law, debate, and maybe even magic or something.

I’ve been writing this for a while, because there are many facets of cannabis. I have a lot of ideas, a lot of opinions, and there is a lot of new data available due to its changing status across the globe. Thanks for your patience!

*Disclaimer: Medical cannabis is legal where I live. I understand that in some places cannabis is illegal even if it is for medicinal purposes. I am truly sorry if the laws in your place of residence rule out cannabis as an option for you, and I hope for their amendment. The opinions expressed in this piece are my own and a direct result of my experiences. Cannabis is not an appropriate therapy for everyone. OK, carry on…

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CRPS – A Patient Perspective

Hi everyone,

I believe I shared this when it came out but I’m not sure what platform it was!

Fred is an Australian man living with CRPS who wants to spread awareness to the world. In his video series “CRPS – A Patients Perspective,” Fred interviews people from around the world to create a greater understanding of the vast array of experiences that CRPS creates. Fred invited me on for an interview to talk about my life. Here are the links to Fred’s 5-part series.

 

 

 

 

 

Thank you for all your work, Fred. Thank you to all of my peers in the video as well, whether we’ve talked or met it doesn’t matter because we’re in this together. Not everyone can talk about this. People shouldn’t be expected to lay out their personal life just so the world can understand. I’m grateful that there are people who are willing to put themselves out there. On a personal note, when I am more open about what I’m going through it does help me to process and try to move forward. A thank you as well to everyone who supports people who are living with CRPS. I am so grateful to my incredibly stacked support team. If you are living with CRPS, or just living in general I hope that you have people in your corner as well.

Ketamine Infusion Update

Hi everyone!

I recently went back to Arizona for the follow-up set of ketamine infusions, or “booster” infusions as they call them. The protocol was a 3.5 hour infusion, two days in a row. Once again, the team there made everything very easy and comfortable for me.

I’m happy to report that they are definitely helping! My baseline for pain has dropped about half a point, and I’m enjoying greater functionality! I’ve been able to do more standing, tolerate more stimulus, more vibrations, and less fear. I’ve realized along the way how much fear has played into living with CRPS. At least for me anyway. So to have more confidence and less fear is a wonderful feeling. I still have fear that I didn’t have before, so I’m not without fear by any means but I’m trying to work on that daily.

Being able to do more for myself has been very good for me. I am so grateful for my family for helping me the way they do, especially my mom, but making my own food again is awesome. I even (mostly) made family dinner the other night! The trend is up, and that feels good.

I’m also happy to report that the airport experience was overall excellent this time around, both going down and coming back. last time coming back was hell…you can read about it here. It’s no secret that the TSA messes up often. Actually “often” is putting it nicely according to recent press, they fail to detect weapons during undercover tests at least 70% of the time. I wasn’t able to find the report, as the TSA apparently keeps all their reports internal for security measures. A couple of years ago the failure rate was said to be 95%. The TSA did mess up with me again. It was awesome.

My mom and I were sent through to pre-check, which we did not have, and everything was over in about 7 minutes. I walked through an old school metal detector, had them put my cane through the scanner, inspected my wheelchair, and that was it. I was told my hands would be swabbed but nobody was ever called over to do that. It was so easy. I hope they think I have pre-check again, because that kind of mistake I like! I looked it up and pre-check would require me to be some sort of American resident or citizen, go to an enrollment centre to provide fingerprints, and then pay $85 for a 5-year membership. I definitely didn’t do any of those things, and I definitely do not qualify for it.

I hope I will get around to writing some blogs about what it was like, because that seems to be something a lot of people want to know. In short, if you have ever woken up from anesthesia it feels like that. The moment you wake up, and you are swimming and everything is weird. If you haven’t experienced that, I’m honestly not sure what is the easiest feeling to relate it to.

Thanks for your ongoing support, take care of yourselves. ❤

Zara

 

Links to information mentioned:

Ketamine Wellness Centers

Blog post on my experience last time

TSA 70% Failure Rate Article (Newsweek)

TSA 95% Failure Rate Article (NBC)

TSA Pre-Check Information

 

 

Chinook Season

Hi everyone!

‘Tis the season here in Calgary, there is a snowfall warning in effect to the tune of 12 cm! So it will be a white Christmas here…unless a giant chinook happens. In Alberta, we get something called chinook winds, which are huge systems that bring warmer weather quickly via wind and pressure changes. According to Wiki, the largest temperature change ever recorded in 24 hours due to a chinook was in Loma, Montana, where it went from -48°C to +9°C. Fifty seven degrees, can you imagine?! Or when variations of 50°C were observed in Black Hills in 1943…in MINUTES. Seriously. (Links at the bottom.) Read More »

My Summer ‘Blip’

Hello, lovely people.

I’ve mentioned some “medication changes” lately. One of the medications involved is an opioid pain medication. I am in the process of transitioning out from this regime, which causes a multitude of its own problems- tolerance, dependence, central sensitization, constipation, drowsiness, and more. After I wean off opioids, the plan is to go on a low dose naltrexone (LDN) regime. My medication regime has slimmed down the last few months, but it’s still complicated at times to figure out which drug is responsible for which effect. I hope that the LDN has a clear, and positive effect.

Long-term opioid usage is something I have never been comfortable with. I understand that for many chronic pain patients, starting an opioid regime is unavoidable and necessary. That’s exactly how it was for me.

I’ve only mentioned “medication changes” in a non-specific sense before this post. I do believe I am an open person, but there are still things I am not overly open about. I was lucky to have a very open and honest visit with someone I care deeply for, and it really helped my mood. I was able to sit up for a bit, then I had to lay down. I was able to quietly cry without feeling guilty for bringing my visitor down. Usually I have some guilt about that. That visit encouraged me to talk about my medication changes more openly, and get some of my thoughts out regarding opioids.

I hate the stigma associated with opioids. I hate the fact that I’m on them. I hate the fact that prescribing them wasn’t taken seriously by doctors for a long time, and that now there is a crisis. I hate how pain patients who really need pain management are blocked from opioids in fear of this crisis.

I hate how much function I’ve lost since starting the opioid weaning process. I hate how it feels like a huge step back when I can’t do the exercises I worked so hard to be able to do. I hate the adjustment period when my body is forced to adjust to a new pain level.

I tell myself everyday that this is just a blip. I allow myself to hate parts of it, because it seems to help me stay hopeful it will be over at some point. I tell myself to be even more patient than I’ve already been. I will readjust, it’s just taking time.

Today I managed to go on my stationary recumbent bike for one minute. This is the first time I’ve been able to get on it in 3 weeks.

It’s just a blip. It will be over before I know it. Breathe, rinse, and repeat.