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…

Chicken and Gratitude

Hi everybody,

Yay for returning to things I love. I love to cook, I love to BBQ. I had the privilege of doing this yesterday. Enjoy these quick pics of the flavoured meat I smoked and grilled with wood left over from Joshua Tree. The uncooked animal in the pictures is Mr. Magoo, begging for the cooked animal.

Yay!

 

Dealing With Boredom

Hi everyone.

At the start of this whole living-with-CRPS-thing, I was bedridden and it was quite an adjustment. I’m not bed bound any more, but I do have to rest a lot. My energy is limited, and I generally live in a pain allowance where I only have so much room to go before I hit that limit. I spend a lot of time resting and recuperating, and the most common questions I get is, “don’t you get bored?”

Yeah, of course I do. It seems to be a different type of boredom though, one that comes from frustration rooted in new physical limits defined by the CRPS that lives alongside me. Sometimes I am just bored though. There’s only so much lurking that can be done before I get physically frustrated.

Timing is everything. For a while, I really enjoyed watching House because I connected with the idea that something was wrong and most medical professionals weren’t helping. Then seemingly overnight, I couldn’t handle watching it. Maybe it was because these people had their issues “solved” in a 43-minute episode, or maybe it was Dr. House being super shitty to those around him because he was in pain. I remember being mad that he liked to use it as an excuse to be difficult to be around. Just because you connect with something on Tuesday, doesn’t mean you won’t turn it off or close the book immediately on Wednesday!

So here’s a semi-organized list to give you some ideas if you are in the same boat, or if you are curious as to what I’m personally filling my down time with.

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.

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*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.

My Friend, Dylan

Hi everyone.

Today is one of my best friend’s birthdays…

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content warning: death of a loved one

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 ❤