The Power of Visualization

Hey everyone!

Visualization is powerful. It’s a technique I learned in high school as a way to go over dance choreography for performances. Now I use visualization to keep my brain moving when my body isn’t sure it can follow.

I see myself dancing. I think about dancing, and how privileged I was to do it for years. I think about dancing in a desert landscape with nobody around except a massive sound rig on an art car. Sometimes people are there, but it’s not about other people. It’s about me dancing, feeling movement, and enjoying the hell out of it. Since I can listen to music as much as I want now, I can really transport myself somewhere else to dance. Visualizing myself dancing can be amazing, it can also get really sad all of a sudden. I believe I will do it again, but it’s hard to be patient when I can’t move the way I want unless it’s in my mind. It takes a lot of energy to force the sadness out when it interrupts my “dancing time,” but the more I force it out the less energy it will eventually take.

I’m grateful to have amazing memories to pull scenes from to complete my visualizations. Today the music is reggae and dancehall, and the scene is a Black Rock desert sunrise.

You are welcome to join me ❤

ART: Heartfullness by Katy Boynton

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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

 

 

Colour The World Orange Day!

Today marks 2 years of being stuck in a bed. I no longer describe myself as “bed-bound”, but physically I’m still in that realm. I am able to get up more, and I have made progress but Complex Regional Pain Syndrome still runs my life by placing major limitations on what I can do. These annual dates of things like my initial diagnosis, school drop-out, etc. get weirder and weirder every year. There is something really neat going on today that is a cause for celebration, though!

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