Rare Disease Day 2020

Hi everyone!

Once again we come to the last day of February- Rare Disease Day. This year it falls on February 29th, which is especially fitting.

Rare diseases/ disorders affect over 300 million people worldwide. In Canada, 1 in 12 is affected by a rare disorder. Each of these disorders is rare, but as a group they certainly aren’t. Three million Canadians are affected, and of course many more when you think about their loved ones and their support system. The Canadian Organization for Rare Disorders is a good place to start if you are trying to learn more about Canadian support and information.

Please check out my post from Rare Disease Day 2018, there is lots of good information on there about the movement, and some examples of rare diseases/ disorders.

I never thought I would be part of this club, and all I want is no new enrollment. Learning is the first step!

❤

Positive and Successful CRPS Stories

Hi, everyone!

With CRPS, we often hear worst-case scenarios, and horror stories. What about stories with a positive resolution? 

I have compiled some stories so you can know success stories do exist, and that they aren’t as rare as the (often negative) internet landscape implies. Here’s the thing…

My Own Personal Flustercluck

Hey everybody.

So, this will be a rant. I’ll probably find a way to link scientific information in somehow as I seem to do, but this a rant at its core…

Celebration and Movement!

Hey everyone,

It’s been a little while! I have a lot to say about recent events, so get ready for a lot of thoughts…

Self Love & Self Death

Hi everybody.

Self love is the act of appreciating and praising oneself. So is self death what happens when we run out of motivation, energy, and hope? Or when our minds are polluted with poisonous thoughts?

I should be clear, I am not talking about literal death. Just the opposite feeling of how self love can make one feel renewed. To me the idea of self-death is the weight of doubt, anger, sadness, blame, and anxiety all crushed up together into some sort of sick pill life has provided for us to swallow.

What happens when you just run out of patience? I have found myself incredibly impatient and mad lately. I have made progress with the CRPS, but it is taking so damn long and I have been so fucking patient. The feeling of frustration is another terrible one, and I’m basking in all of its terribleness right now. I am trying to convince myself that I am cool, I am calm, I am comfortable, but it has an opposite effect. When I get into these moods, I think the only way to get over it, is to sit in it for a while. Every time I’ve tried to just cover up a mood like this with some sort of strategy it ends up adding fuel to the mood. I am allowed to be mad. Let’s hope I can get it out quickly and then I won’t have to feel this way again for a while.

The recent therapy I tried (hypnosis) gave me some additional tools but I was hoping for more. I’ll talk about that therapy more at a later time. Maybe more progress will come, but I have to get through this self-death first.

–

*disclaimer: Chronic illness is very up and down. I am not great right now, but I’m not the worst. This blog is a way for me to get my thoughts out and perhaps someone with a similar experience will feel relief that they aren’t the only one feeling a certain way. I am not suicidal, and this post is not about suicide. But if you are feeling that way, I’m sorry and please take a moment to consider there is support out there and you are worthy of it. You can find some resources here.

Music Festival Accessibility Please!

Hey everyone!

I attended music festivals for over 20 years before developing CRPS. Yes, for most of my life I have been dancing to incredible music spanning dozens of genres.

The last time I attended an event, I was severely limited by my pain. This really made me think about whether festivals are possible for someone with issues like mine. If so, how many festivals would be possible? The kind of festivals I used to go to, anyway- outdoor multi-day music festivals…

Product Review: Polar Feet Socks

Hi everyone!

So…socks. I can wear socks everyday now without an issue. There was a time where socks were very difficult to get on, and my foot only wanted to be wrapped in a blanket…

Rare Disease Day

Hi everyone!

Today is an international awareness day for rare disorders. I live with Complex Regional Pain Syndrome, one of over 7000 conditions covered under the umbrella of “rare disorders”.

So Happy Rare Disease Day, and I hope you learn a new fact about someone’s rare affliction today!

Please feel free to visit my post from last year to learn some more general information about rare disorders such as stats, support resources, and more. I’ve also included a couple example disorders to give you an idea the range of effects these conditions can have. So please check out my post from last year, I swear it’s not outdated which is a fun surprise for me!

 

“What is Rare Disease Day?”

 

P.S. Rare Disease Day is February 28th! I’m not sure why this was marked March 1st, I’m sorry for the confusion!

Extreme Perseverance and How I Still Had to Quit

Hello, everyone.

Here are some thoughts and reflections that apparently keep me awake at night, and if I do fall asleep follow me into my dreams.

Of course it’s university.

This is a bit of a rant, so I hope it’s not too hard to follow along…

A Little Ocean Dip

Hey there, everyone!

I recently had the privilege of visiting the Pacific Ocean via Newport Beach. That was really cool. I’ve been to the ocean a decent number of times before, but this time was different.

I was able to handle the wind. I was able to walk to the water, through the soft sand and then the oobleck sand. I was able to approach the water, and stick my regular foot in it.

It was absolutely lovely. It was a testament to all the progress I’ve made, and of progress to come. It has to be.

 

The Ocean ❤