Breaking it down

With the sun shining and birds singing outside, I feel like everything should be beautiful in it's own way today. I appreciate the life I am given, even with my limitations that continue to control my life in a rather progressive manner.

I have positive intentions and thoughts as often as possible. A lot of them come naturally these days, thanks to all of my practicing of Neuroplasticity in my own ways. But I do have to force positivity onto myself sometimes. I have to remind myself, or break it down.

Oh, I used to love breaking it down with my hula hoop to some good music. I would happily groove for hours each day, it was a true passion. I still remain so hopeful to do this again.

I wanted to break down a few of the things that I have been going through lately. It seems sounds, lights and vibrations are going to continuously mess up my groove of happiness. But.

I'm still me.

I'm still Kristen. I'm still the same person who loves people, positive energy, laughter, music, nature. I have a passion for everything. I want to create a positive ripple in Our World in my microscopic way, one way or another.

I'm still covered in tattoos, with piercings, dreaming of coloring my hair rainbow again but waiting on the strength of both arms. I'm a happy person still.

I'm just trapped in this progressively degenerating body. We don't need to go through the list of what's wrong with me, but my physical state isn't the best of the best right now. My mental history has always been a wee wonky ;)

I am doing SO much better mentally than I ever have before though. I have learned amazing techniques that help me feel like the old wise soul I was often told I was. There has been wonderful resources and people that have connected with me to help me truly transform my way of thinking. For that, I am incredibly thankful and proud of myself.

I want anyone who reads this to know, life happens. We all grow, change and transform into different people through different stages. It's what we learn from each stage that helps define us and helps us bloom into the people we are. Be proud of your journey and exactly where you are right now.

I had a conversation with two very close people in my life last week. I don't normally share these things, but I think it's important for the person or people who can relate to this, to know their not alone.

Both people, at separate times, got overwhelmed with my current state. Firstly, I will say their emotions and reactions are completely valid and understandable. No hater comments please, I can see all perspectives from a higher grounds and all is more than well.

They both are tired of seeing me progressively get worse over the course of almost 3 years. (6 years total if we want to include my fibromyalgia, other conditions and incidents.) They want to see me get better and are frustrated that there is nothing anyone can do, except watch me get worse. They want to help someway but don't know how.

I have an amazing nurse and doctor helping me now, I am convinced that better days are ahead. But we have all heard this before. (I'm legitimately truly hopeful that something will happen to help alleviate some pain.) People in my small support system are tired of hearing that, especially since I'm not getting better yet and things keep going down hill.

They both want me to try things their way. "Just complain about fibromyalgia instead of CRPS so someone can at least understand the disease to fill out disability paperwork to relieve some stress or give you marijuana licence to help take away pain". And "let's spend all day at the hospital together and we can get another x-ray and a full body MRI so they can see what's really wrong with you instead of this unknown CRPS"

Has ANYONE reading this gone through something similar before? Because I swear, it took 'every fibre of my being' to not just become a sobbing, confused mess.

That's my defense these days. Meltdown and not even know my own name or how to explain what's happening to me.

But I didn't meltdown either time. I didn't get confused, I didn't get sad. I was empowered.

Finally.

I felt like everything that I have been doing and fighting for all came together at once for me. All of the amazingly strong, beautiful and brilliant souls that I have connected with so far that are also struggling with CRPS stood out in my mind. It all connected.

I reminded both of these people of the walk that I organized last year. Out of all of the conditions that I have lived with throughout my life, CRPS-Complex Regional Pain Syndrome has crippled me the most. Physically and mentally. If I could get better, I would. That's why I am researching how to get better. Up to this point, I had to rely on myself or Helen, Executive Director of PARC (Promoting Awareness of RSD/CRPS in Canada), for information and treatment options.

"66% of patients in Canada see 3-4 doctors with the same symptoms before a proper diagnosis."

That's f*cking insane considering it is nicknamed the "suicide disease" because of it's excruciating pain and sincere confusion it causes a patient, their doctors, family and friends. "What's wrong with me" has popped into my mind more than a million times. Back when I only knew about the one treatment for CRPS and it wasn't working for me. Everyone was getting upset. It's all understandable.

So. The reason I am trying to do what I am doing here, is to let you know that you are not alone. If it's mental health, body aches and pains, stress from life or excruciating life long chronic pain. You're not alone. I'm one person, on a huge mission to connect with hope and better days. I am doing research and going through treatment for CRPS. I am organizing the second annual Walk to Conquer CRPS in Halifax for August 31! (Please donate if you can. Anything helps and it all adds up. By going through this link, you will be donating directly to the CRPS treatment research that is happening in Montreal. It could help increase the quality of CRPS patient's lives and we desperately need options. Donate Now)

I should also update on Session #4 of BioPhoton Therapy that I had on Friday. I am keeping track of everything and look forward to reflecting on my results. Friday night, after not consuming marijuana since 8:30am, walking to work, working, going directly to treatment and 2 hours in car picking up kids, my pain was 12/12. I was miserable and my poor step kids had to see me try to crawl up my stairs on my good hand and leg to drag the rest of my body up. I was intensely sore until Saturday afternoon after a lot of marijuana, sun and happiness from being with my girls (step daughters) and animals. I was back to 8/10.

But the interesting part was, during my intense pain flare, my feet were the exact same temperature. Literally, with the digital temperature reader and not guessing. They were the exact same. But from my ankle to my groin on my right leg were frozen. It all felt like my muscles were being stretched into tiny elastic bands.

So, this morning, I'm at my 8/10 now that I'm unable to consume marijuana prior to my shift at work. After work, I'm off for session 5. We will see what happens and remain positive no matter what.

Because I am strong enough to handle this and I will not stop until I have answers for us all ❤️

I am officially behind schedule on my blog challenge, but I have to be ok with it, all things considered. Staying positive and making today a good day.

Day 71/365

Entry 32/183

Positive thoughts,

-Kristen Sparkle

@ConquerCRPS and @HippieRaysWays on Instagram