I work for an American company though, so I will be going to work today for my 2.5 hour shift. Seems so little, but remember, I have to be dealing with my pain at full levels for 8 hours in order to accomplish this. The last 2.5 of them are spent in a bright call center with 500 people talking at once, while I try to make my customer on the phone happy. (I can at least finally keep up to speed with my customer, even with only using my left arm.) It's quite loud and bright in there, I often wear my hat and ear plugs, my friend calls it "buzzy". But I do it and that's a big accomplishment.
My nerves are weird too, remember, they can be simulated by hair, air, lights, movement, sound and existence alone. They aren't a happy simulated either, it's quite excruciating to breathe on myself if my hair is touching my neck. Like 42 or 46 out of 50 pain on the McGill Pain Index (Above childbirth, non terminal cancer, amputation of digit and anything else compared to it). It's sheer fire under my skin, that's the easiest way to explain it.
Most days, you can see the pain on my face and on the affected limbs. My hand can change shape, color and temperature whenever it wants and so can my leg. It's quite embarrassing to wear shorts in public when one leg is the way it is. "One of these things just aren't like the other".
So, I'm going to work today and dealing with this already miserable body I have. BUT.
My weekend kicked ass.
Oh yes, it did.
Even if it rained all weekend and I couldn't go outside to enjoy sunshine or the earth. I was too broken to do anything major out there anyways. But. I did what I could inside the house and felt good about it.
I cleaned my entire house Saturday. I spent all day doing it so that I could relax in a clean house Sunday while working at the kitchen table on the 2nd Annual Walk to Conquer CRPS. Laundry was done, bed sheets were clean, floors and walls were washed- only two walls, but still plural ;) I cooked dinner and made sure there was enough for the next night so I didn't have to cook again. (Spoonie speed baby)
Sunday morning, much like Saturday, I was up at 7 because of discomfort and busy brain. So I made my coffee, turned on the laptop and started working on the walk. I tweaked the logo and posted it on Instagram asking for opinions. I replied to almost every comment and a few direct messages on there before realizing I needed to make that GoFundMe page ASAP.
https://www.gofundme.com/f/walk-to-conquer-crps
to go with:
https://www.canadahelps.org/en/pages/walk-to-conquer-crps/
Both links will take you directly to how you can help. A donation of any amount is appreciated and they will all add up :) Share both links wherever you can, the more that know about this, the better. We're moving mountains here people! :)
I started to create a Facebook group and then all of those silly Facebook emotions started stirring up. Anyone else feel hesitant to share their personal struggles on Facebook? With all of their friends and families? Or for me, used to be friends and family members. I find I am able to draw somewhat of a line between my real personal stuff and my medical situations when I am blogging or on Instagram. But when it comes to Facebook, those people have known me my whole life and haven't paid attention in years. I'm still the same, yet so different now.
Anyone else relate to those feelings?
Anywhoo. Facebook group is on hold for now, but I still managed to do a lot.
I also went through my emails and contacted everyone who has contacted me over the year regarding the walk. I sent 2019 Pledge sheets and a personal email to each of them letting them know about the progress and confirmations we have made thus far. There were 9 emails sent and that makes me feel good. Last year, I only had my friends and family to count on for the beginning months of planning. Last two weeks is where it picked up on the radio stations and we found our two other Warriors. I will say that My mother, sister, niece, nephew, husband, mother in law and step daughter all ROCKED last years walk and completed the 10.5k journey, along with our OG (Seems applicable and truly hardcore) 10.5k CRPS champion, Tina <3 She walked the whole thing with CRPS and she raised the most funds and won top prize! She donated the top prize to Tatum, the 11 year old magical young lady who also has CRPS. Tatum was able to invite a friend and her Dad along for a private airplane ride above Nova Scotia, thanks to Bradley Farquhar! Who will also be leading this years walk with his amazing Iditarod dog, Jerry :) <3
Last year turned out amazing considering I'm just one Spoonie trying to make a difference. But practice makes perfect and it makes networking possible. This year is off to a hit already, maybe not online donation wise, but that stuff RARELY works. It's about raising our voices and our vibrations (with our ear plugs in) to make everyone ACTIVE about making a change. About helping to make a difference, if not for themselves, then for the others that suffer from this crap.
People have been living with CRPS- Comlex Regional Pain Syndrome, or RSD- Reflex Sympathetic Dystrophy, or Causalgia, or any of the other names that it has been called in its years, without answers or many options if their not fighting for themselves. It's all the same thing. #CRPS. #CRPS1Name AKA #SuicideDisease
I think since I have not been able to get very active on the Facebook, Instagram or Twitter, I will use some #hashtags here. Just to throw them out there and see if #SocialMedia wants to #PayAttention to something that matters, yet gets no attention. There is #NoCure for #CRPS yet and there is no #MediaCoverage for the debilitating syndrome. If @PaulaAbdul has it (Straight up girl, I'm doing it) and people still don't know anything about it. What is a girl like me to do?
Other than #ask #for #help. On any #SocialMediaPlatform possible. Someone needs to help raise awareness that isn't sick.
Just throwing that all out there, because it is incredible to see the other #Warriors and #Spoonies out there dedicating what's left of their lives to this cause of raising awareness to the damn disease that's taking over our lives. We don't want our #FutureGeneration to #suffer like we do. But we #StandTogether and we continue to fight for the better days.
Why doesn't someone else join the party? Help us fight so maybe someday we can feel normal too?
#Rich and #Famous, #Activists #Humanitarians #PositiveVibe people, #Medical #Research is Needed.
On that lovely note, I have to get back to my daily struggle and get ready for work. But I am choosing to make today a great day with positive thinking, I'm dreaming big and smiling. I hope you do the same.
Day 92/365
Entry 41/184
Positive thoughts
-Kristen Sparkle
@ConquerCRPS and @HippieRaysWays on Instagram
