never know what to expect
After not having a pain specialist since August, I found myself quite anxious for my appointment yesterday at the Integrated Chronic Care Service building.
I knew it was not a pain clinic, but there were specialists who understood chronic conditions and the effects they can have on a persons life. I was not sure what to expect from it and I'm not too sure how I feel about it now, but I went and I'm going to go again for the next step to see how it goes.
They offer a "whole body" approach. Meaning, they help you look at all aspects of your life and show you positive opportunities or options. They are not pain management, but they can refer you to one. They can help you adjust to living with chronic conditions, like anxiety, fibromyalgia, depression and other chronic pain conditions.
There are only 2 clinics like this in all of Canada, so this is quite an opportunity for me is what I was hoping and continue to hope.
There is some hesitation in me getting my hopes up for a life changing experience though.
I have fibromyalgia, scoliosis, herniated C4-C7 discs pinching my C7 nerve that goes down the back of my right arm that I had a fracture in two years ago, that's all understandable there. But. That fracture turned into this stupid CRPS. A rare neurological chronic pain condition that is the highest rated pain condition on the McGill Pain Index yet only affects 5% of Canada's population, so the other 95% have NO IDEA what you are talking about.
Most patients with CRPS have to take matters into their own hands if they want answers. Do their own research, make their own connections and networks for specialists and support. I was so lucky to find PARC after only a year and I think it was only through my own research that I found PARC and my ray of sunshine, Helen. She pointed me in the right directions and continues to be one of my greatest supports.
So, thanks to Helen, I walked into this group already filled with the "information ammo" they were providing us with. I felt connected and like I just might be in the right place.
Nobody in the group knew about CRPS and that's ok. Someone said they read about it and said it is a really...along the lines of interesting or challenging..syndrome. I can't quite remember what she said. I was interested in learning new things and focused, engaging with the teacher as much as possible. I was finally in a room with people who had similar limitations, all absorbing important messages about whole body health while living with chronic conditions.
My specialty.
Now, I have the opportunity to be coached on the very thing that I have been needing to take care of first and foremost. Myself.
If only someone knew about CRPS.. I'm really hoping one of the medical practicioners will know. I should be used to nobody understanding I suppose.
But, continuously thAinking positively, maybe we can educate each other. I left 15 PARC fliers with the receptionist, so already I am doing something to connect the dots.
But.
I'm frustrated.
Yet insanely positive at the same time.
And again, I must state that this confuses people. It obviously confuses me.
But I'm ok with that. They don't have to walk in my shoes and face the world the way I do.
A friend leaned on my good arm today and asked what I do on days when I'm just tired of existing. Not suicidal. Just tired.
I told her the same thing I have been telling myself:
There are only 2 options here. Let the situation and emotions own you, or you can own the situation. Be miserable or not.
Life fricking sucks sometimes. Especially when you feel alone or suffer from mental illness, or both. In addition to multiple chronic pain conditions. It's all overwhelming.
But I can't cry about it all the time. What kind of crappy life would that be? My physical limitations are as is, but I cannot let it prevent my shining flying, fire breathing unicorn spirit from pushing through and making the best out of it all.
It's Friday and I had almost a whole week at work. Got my WHIMIS training, went for my appointment at ICCS, made Instagram posts and made a blog entry. I did it all with positive intentions.
Make today amazing with positive thinking. Don't let it go, just let it be :) and look up some Jon Kabat Zinn for some additional inspiration :)
Positive thoughts,
-Kristen Sparkle
