I cannot believe that my long weekend is over already. I feel like I may have done a little too much and not enough relaxing, but I suppose it goes with the territory of what I am trying to do with my mission of awareness :)
We had a heatwave here in Nova Scotia over the past weekend. It was 37 Celsius outside and 33 inside for 2 days and nights. Friday evening, I was over heated (I also have ichthyosis vulgaris, a skin condition that gives me extra layers of skin, making it difficult to sweat properly). I decided to listen to my husband instead of all the research and wisdom I have heard over the years. "Just put both feet in cold water, it'll cool you down."
It cooled me down alright, but it also knocked me down. To the ground. Holy Hannah.
I won't be doing that again.
Saturday night was UFC 239 and oh my goodness, I forgot how much I love Mixed Martial Arts. I have admired body builders since I was a kid. My step dad was always working out, so me and my sister had access to the machines and weights. We idolized China the wrestler and wanted to have muscles too. The athletes in MMA go through such intense training to get their bodies in the shape that they are in, I have always admired and appreciated. Since my chronic pain disorders started kicking my ass, I haven't been able to do any of those things. I think even going to a live UFC event would be enough to knock me down, with all of the lights and sounds, I'd be a mess.
But the fights were great, I managed to stay up until 2:30 am! I was very sore and uncomfortable by that point, but I had to see how the main event finished, even if I disliked the final results. It was a great night and I was convinced that I would sleep peacefully until at least noon. I needed to sleep in after being up at 6:30 or 7 every morning of my long weekend.
I managed to get 6 hours of sleep, which didn't feel like enough. I had a table length to do list, my body is never comfortable when my brain is awake, I had to get out of bed.
I spent almost all day yesterday organizing, corresponding and creating! It felt really good, but now that I jumped in this way, it's all I can think about. What needs to be done next, who do I need to contact, what needs to go where, 'who's on first'? (If you get that, sincere Kudos to you.)
I am waiting on everything to be finalized and confirmed, but there might be multiple international guests and Warriors coming in for the event. I feel like the Universe has brought together an amazing opportunity to two VERY deserving individuals. I think amazing things are about to happen and all of this hard work, dedication, suffering from CRPS and all that comes with it, it's all going to be worth it. There's a change that needs to come and I think Universe found its soldiers.
It may seem far fetched, or sound completely.. stupid.. to some. But it gives me hope. Everything happens for a reason and I am finding the lessons.
The walk is seeming to come together nicely. Still a lot of work ahead of me, but with everything that keeps happening, I need to keep going.
I must admit, I am getting sort of nervous for the waiting game without a doctor again. Now that my leg is sincerely screwing me over and the walk is coming close. I wanted to be in the hands of a good doctor and trying treatment options. Not being stuck with only one option that felt like it was making me worse. (I'm even worse now 2 weeks later... this sucks and I can't express that enough). I am waiting to hear from the new clinic, but am starting to worry that the doctor did not send the referral because of her vibes with me. I wont get into it too much, but the entire process with her was confusing with information. "CRPS almost always goes away in 6 years"- Not true. "I don't think laser treatment can make you worse". After her nurse confirmed yes and my symptoms were obviously worse. "I don't offer those type of infusions here"... while I drag a leg through her infusion room twice a week for 'torture time' I started nicknaming the laser treatment.
I want to stop smoking weed, start taking Nabilone (marijuana pill I have been requesting since 2014 to stop smoking weed for pain relief as my lungs are probably damaged.) I want to be able to walk, use my arm, think properly and therefore communicate properly. I want to be able to control my emotions and fully understand what I am looking at instead of confusion at times. I want me back.
This won't happen unless I stand up for myself, and the thousands of other warriors around the world like me. Which is what I have been trying to do.
https://www.canadahelps.org/en/pages/walk-to-conquer-crps/
https://www.gofundme.com/f/walk-to-conquer-crps
Please go to either of those links to donate. If you're unable to donate, please share the links with your friends, family and co-workers. Help me make a difference for others and for myself. We are raising funds for medical research that is going to test a new treatment option for CRPS. We need hope, options and help.
One step at a time, we'll get this figured out <3
Make today a great day with positive thinking, it helps you get through today and it will help make tomorrow start off right.
Positive thoughts,
-Kristen Sparkle
@ConquerCRPS and @HippieRaysWays on Instagram
Day 99!/365
Entry 44/183
man summer is here you should spend more time at beach
I love the beach! It's good for the soul! Unfortunately, a Cool breeze feels like fire for me. A beach is kinda a trigger place for anyone with CRPS. But I hope you enjoy!
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Don't I just love you :) <3 stronger together my soul sister ❤️
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