My leg has been affected by CRPS since March now, it's still new. ('It's still good, it's still good'- Kudos if you get the reference) It's been in my arm since the beginning of 2017, so I am sadly adjusted to the limitations of only using one arm for the most part, unless highly medicated with marijuana when I can handle the pain a little better. When my right leg started affecting me, I started to walk differently to reduce the pain, naturally. Here we are in August and my left leg and my back are ready to tap out from the fight. It's not CRPS pain, thank fucking god. But it is intense, bone and muscle pain. Maybe Fibromyalgia pain? Or maybe I'm doing damage to the left now.
I was able to get a drive to and from work for the most part since the pain started, but as of Tuesday, that option is gone. So I have been trying to walk this week to and from work, un-medicated for 4-7 hours. It has been embarrassing. Yesterday, I had to bring a pre-rolled joint with me thinking one would actually be enough to help me walk without complete misery. I'd settle for even half miserable or like 3/4 miserable. But walking in complete misery, fucking sucks. Especially when the same people who see you walking this way have watched you trot, hula hoop, run and skip down the street (Literally) barefoot for the past few years. I had high, positive energy and wanted to contaminate the world with it. But now it takes me 26 minutes to drag my body down the street.. FML (But in a positive, just need to release it kinda way.)
When I look down when standing up, both of my feet and ankles turn. My hips both dislocate, my knees pop and crack, to accompany a jerk of a pain between my shin bone and calf. What is even there? I used to know, but don't want to bust out the anatomy books right now. They're heavy.
I do feel a small sense of falling apart, but in 7 days, I will be meeting with that new doctor and hopefully starting my new treatment plan that day. I need some relief from these flames please and thank you very much.
Other than my body falling apart. The 2nd Annual Walk to Conquer CRPS is coming up quite quickly, 22 days away! I'm nervous as hell because I still don't have many prizes for top fundraisers. After contacting all of those businesses, even offering a tax receipt, there is not much interest in helping a rare pain syndrome's fundraising efforts. I will not let it stop me from still trying, even with short notice. I also will more than likely be unable to walk the trail with the group, which is weighing heavy on my heart and mind. Not to mention actually interacting with all of those people without seeming like a fool, I am so nervous.
The event was in the newspaper and we are on 4 radio stations now :) This definitely helps raising awareness to the cause and I think the day itself will raise a special kind of energy and hope for the CRPS warriors that will be there.
I'm also turning 32 in 20 days and think it would be really nice if I was a little further in life and slightly healthier, but hey... one step at a time.. Once I can take steps again :)
Did I mention FML?
Just making sure.
After the walk that I'm not walking but organizing, I am going to try to figure out a way to combine my passions and make them a reality. I am tired of being defeated. So, there will be a lot of brain storming and idea throwing out there over the next little while and I would really love some feedback on it if anyone has some. I need to become what I say every night: I am happy, I am healthy and I am successful.
On that note:
I got the courage to finally post on my personal Facebook about the walk so I could ask my friends and family for help. I must say, I'm not surprised with the lack of support. So I am genuinely asking you for yours. Please donate to the 2nd Annual Walk to Conquer CRPS by clicking on the link below. $1, $5, $20, whatever you can. It all adds up. I have a team of almost 30 volunteers out there fundraising for the event and so far the only personal sponsor I was able to get was my work. Share the link somewhere if you can't donate, but please help me help others by donating what you can.
https://www.canadahelps.org/en/pages/walk-to-conquer-crps/
I'm not doing well physically and emotionally I becoming more vocal of my struggles (I'll still leave the let down with my dad this week, my missing more time than I want at work, emotional breakdown, etc. Out of the picture.) But I will say FML. And that's a step :)
Not to mention my last entry that kinda rehashed my mental background for the world to see. I'm taking steps where I can. :) And swearing slightly.
This weekend, I am apparently going to the nicest resort in the province, White Point Beach Resort. It sounds dreamy and vacation-like. I should mention that I'm going with my husbands mom, step dad and step sisters family totaling 7 kids with us. But it will be fun as long as no-one is uncomfortable with me. I can't touch cold water with my right leg or I possibly stiffen or start shaking. It's a beach resort with a pool and a million things for the kids to do. So that's what I'll be doing.
There will however be wine, and a beach within reach. If I can find any excuse to touch at least the sand with my toes, I'm taking it. Even if it takes an hour for me to walk the 10 steps there. But if the tide comes in, someone might wanna come get me :)
I have a day of feeling defeated for calling in sick and being broken naturally. But I am going to try to flip my switch with my thinking, as I often do. I must be honest, I just re-learned about Juggling the Jenkins- Tiffany Jenkins, and she has really inspired me lately. She connects with me on that quirky, slightly insane yet insanely positive to push for the better days level. I watched a video where she said the only meat she eats is beef and boneless skinless chicken breast and she explained why, I legitimately made my husband watch the video to prove that I wasn't the only 'freak' out there with that reasoning and specificity.
So, I'm probably going to put a few of her videos on in the background, reheat up my heating pads and try to make the best of today within my limits.
Thank eff it's Friday <3
Have a great weekend everyone, Be kind to your mind, it counts for more than you know.
Positive thoughts,
-Kristen Sparkle
Day 131/365
Entry 58/183
@ConquerCRPS on Instagram