Hello world of Steemit! I hope all is well with each of you today.
My name is Kristen C, I live in Canada and am 31 years old. I have spent the past 6 years of my life dealing with chronic pain conditions and have gone through quite the journey thus far. I try to pursue with a positive mind frame so I can conquer the daily struggles that I face and to help others in a similar position.
I have fibromyalgia, scoliosis, my C4 through C7 discs in my spine are herniated and pinching my C7 nerve that affects my right arm. I fractured a bone in my right arm in February 2017 and was diagnosed with CRPS (Complex Regional Pain Syndrome). CRPS is a confusing and debilitating disorder that is rated 42 of 50 (highest chronic pain condition rating) on the McGill Pain Index and has the awful nickname of the "Suicide Disease". It has truly changed my life.
Medical teams around the world have tried to find the cause or the cure for this disease, but still have not found their answers. There is no proper treatment plan in place for CRPS and most patients go through 3 or 4 doctors before a proper diagnosis in Canada, let alone treatment.
Treatment itself is so controversial. Some things work for some patients, the same thing could make other patients worse or not work at all. Some doctors believe there is only one or two options, other doctors will spend their own money on machines to try new ones. But most doctors don't even know it exists.
I have had stellate ganglion blocks, nerve blocks, photon therapy and a medication list longer than my arm I'm sure. I have had a few hours pain free after the stellate ganglions, but it might have been the happy medication wearing off from procedure. The procedure consists of a needle being guided through your neck by an ultrasound until they reach the longus colli fascia where they inject medications to 'restart' or 'block' your sympathetic nerves from receiving pain. I reached 36 hours pain free one time and it was amazing, but the following two times gave no relief so that doctor let me go and wished me luck in life. He inspired me to help others, but more on that in a bit.
I traveled 4 1/2 hours and stayed for a week of treatment with another specialist who was about to retire. He was the becon of hope for many with CRPS, but after a week of various treatments, I came home with a sore neck that still has limited range of motion and I see stars when I turn and get headaches from vibrations.
CRPS and fibromyalgia are neurological pain disorders, they take over various nervous systems in your body and can control a persons life in every aspect. My brain is in constant "fight or flight" mode, 24/7 my brain is continuously thinking everything hurts.
Unless I have the strength and the positive mind frame to control it a little.
I have tried pharmaceuticals, many times. I find great difficulty in finding the positives when I feel like a zombie and can't comprehend my own name. Pharmaceuticals and me do not mix. So I fight this constant pain with my positivity and marijuana. I will write more about it later, but please do not judge. There is a major opiod crisis happening in my area for pain patients and I do not want to go down any other road than the one I am paving for others.
As I mentioned, I wanted to help others. I need my brain to agree.
Before my accident, I used to hand write little cards that said 'Smile' and put a cute quote inside of them like "Think like a proton-always positive". I left those cards everywhere. I made a page on Facebook called 'Something to smile about today' and posted cute animal videos or positive pictures. I started taking pictures and putting positive quotes on them and sharing them on Instagram to inspire others to live a positive life, no matter what we are dealt. (@HippieRaysWays)
I wanted people to be happy because I want to be happy. Life is tough, but so are we.
I found a charity here in Canada called PARC (Promoting Awareness of RSD/CRPS in Canada) and asked to organize a fundraiser for medical research and awareness.
I spent 3 months organizing the first annual Walk to Conquer CRPS and raised $1,000! Not bad for a first attempt and little time frame I think.
Through this walk, I met 2 others in my area who have this too. CRPS affects 1 in 4,000 people according to a Dutch research study consisting of nearly one million patients. I was honored to meet these two amazing girls who have been through a similar journey, one is only 11 years old.
For them, and others around the world I have connected with, I want to create a Positive Change for Chronic Pain. I need to get on my soapbox and share my story with others so awareness is raised. Others need to know what I go through everyday and how I am facing the world with a smile when I want to cry. If one person becomes inspired to start thinking positively, no matter what life hands you, then I will consider part of my mission complete.
I look forward to sharing my journey and research here with you all. I will go further into detail regarding my mental health history, doctors, marijuana and other medications I have tried. I will also keep you all updated on my vision of creating a Positive Change for Chronic Pain and the progress I make.
Spend some time thinking about things that make you smile, watch a video or listen to a happy song. Read a good book (A New Earth changed my life) or go outside. Smile, it takes more muscles and it looks good on you.
Positive thoughts,
-Kristen
@HippieRaysWays
