Raw Realities

These past few mornings have felt impossible. I'm having a hard time accepting how my brain works lately, wishing I could have some pain relief and wanting to contribute more to the world than just these silly blog entries. I want to communicate clearly and have what I say mean something to someone. I want to "be the change that I wish to see in the world". I truly do.

There's no cure for CRPS? Let's find it. No support group locally for CRPS? Let's create one. No medical research fundraising around here for the important research happening in Montreal that could help everyone with CRPS in the long run? Let's organize one. That's the way I have been thinking.

There is no cure, no support and no research funding. The situation will be the same if I leave it that way. But if I fight like I have been, then MAYBE... just maybe there will be a difference made for CRPS patients within my lifetime. Including myself and the other warriors I met the other day.

This is why I keep trying to push forward, which is great. But in the reality of my own situations, I am really knocked down and not sure I'm strong enough to do it all alone.

In 2 days, it will be 7 years that I have been at the same job. I tried to get into this company for a year before I was hired because it was the best paying job that I was qualified for in my area and the work environment is usually quite positive. I grew up in a house with a home office for my family's business and I was a business manager prior to this job, so the office environment (And supplies!) are appreciated. I truly do love my job, I'm good at it when I'm feeling ok and the customers really like me. However, over the past 3 years it has become increasingly challenging to work even part time in that environment with CRPS taking over more aspects of my life than I like to admit sometimes. I keep waiting for the right treatment to work so I can feel a little better and push harder. I tried many treatments so far. I'm waiting for a new nurse to be trained as I type. I waited over a year for one type of treatment and received it once before my nurse went on maternity leave early. It's supposed to be once a week for a little while before I feel any difference, so I continue to wait to see what will happen. I do remain hopeful.

Now, because I can barely work part time hours for 3 years due to this condition taking over me and without a cure, I had to find something I could do instead of feeling useless. A nasty feeling, I try to avoid like the plague. So, I organized a fundraiser walk for 2 years in a row, with funds going towards medical research that could result in a CRPS treatment being approved for Canadians. It's something I organized at home, from a tablet or laptop and in my pajamas. I can't do much these days, but I can still do something. I wasn't able to walk the event itself this year, even after trying new treatments (BioPhoton Therapy) a few months ago. I stayed at the Start/finish line with other Warriors and we discussed the many things that needed to be discussed. (Again, my communication skills are haunting me.)

So, I can't work full time yet, I can't walk, I can't communicate clearly, I can't be around loud noises or flashing lights unless my attention is elsewhere, I can't do half of the hobbies I enjoyed before or take care of my physical appearance the way I used to, I can't go a day without a few tears. But I can organize and coordinate. I can continue to share my story and my life with the world in hopes to inspire one person to try to make today amazing, regardless of limitations. I can continue to try to take these steps.

I am strong enough to try.

Because I still try to work as much as I can at the job I love. I still walk the best I can. and as far as possible. I communicate as often as I can, regardless of flaws. I can gradually turn up the volume of certain songs and be ok or I can sing my heart out to get my mind off of the pain. I can sometimes find alternative ways to do my hair or maybe wear some accessories. I think I still cry everyday though, but that's ok. I'm still trying.

The 2nd Annual Walk to Conquer CRPS is now at $1,900 with online donations included! Please, donate if you can or share the link with others who are able. We need to make a difference:

https://www.canadahelps.org/en/pages/walk-to-conquer-crps/

Combined with last year, that's $2,900 raised!!

But I can't even make a $200 paycheck for myself with work. Something has to change somehow.

I am going to continue to try to make a difference, one small step or hobble at a time.

Be kind to your mind and be kind to one another.

I'm going to leave this off with a quote from my Mom's daily quote calendar. She sends me the pictures every morning and this was the quote for Saturday. (It's a gooder ;))

"When your passion and drive are bigger than your fears, you just dive." Viola Davis

Positive thoughts,

-Kristen Sparkle (Story behind the sparkle coming soon)

Day 157/365

Entry 70/183

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