Phoenix Wheelie Adventure/ Accessibility Rant

Hi everyone,

I went on a big outing! When I was down in the Phoenix area last month, it was my goal to get out for some type of excursion. My mom and I chose the Desert Botanical Gardens, because we love the desert and they stated that it’s accessible. Please be prepared for a huge rant and a load of ideas…Read More »

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Conspiracy: CRPS in The Princess & the Pea

Hi everyone,

You may have seen a meme recently that has a man sitting at a typical university information table with a statement and “change my mind” on it. Well, for me it looks like this:

PRINCESSandpeameme

Let me go through my logic with you…Read More »

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

 

 

Rare Disease Day

Hi everyone!

Today is Rare Disease Day, an international day to raise awareness. It happens every year on the last day of February. So on leap years, it seems especially appropriate to have Rare Disease Day on February 29th! Did you know that 1 in every 12 Canadians has a rare disorder? Neither did I until I stared researched after being diagnosed with Complex Regional Pain Syndrome (CRPS)…Read More »

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 »