Updated: Mar 29
Returning to My Fibro Blog about my Dis'ordered life...
I just wanted to take a moment and say hello to the fibro community out there! Remember me? My name is Maggie and I initially started this blog about fibro a few years back. I am not working because of my medical issues and was required to retire. This blog is about fibromyalgia and the various comorbidities that come with our surprise package of fun fibro tricks. I will also continue to blog about coping with the transition from my former life and adapting to my disabled life. Basically, I will blog about whatever I like, as there are no rules.
I will blog about my odd adventures and shenanigans, sharing about coping with being chronically ill. I like to advocate for improvements in patient treatment care and awareness. So, be prepared for more of my blah, blah, blah, moments, and my unique sense of humour!
My favourite saying.......
Where have I been and what have I been doing?
Through the blog, I met some fibro friends and was asked to help build a national fibromyalgia group called Fibromyalgia Association Canada (FAC) fibrocanada.ca Essentially, this is what I have been doing in between flare-ups, various illnesses, and medical appointments. I am a board member with Fibromyalgia Association Canada and am one of the chairs of FAC's Advocacy Committee. So far, to date we have built FAC's infrastructure, developed and are maintaining a website, led awareness campaigns, and
have been advocating for change.
FAC has grown a membership and is now hosting several media platforms. Members of FAC have fibromyalgia and have access to resources that are being developed and accurately sourced information. FAC is not a support group, it is meant to provide resources and education for the individuals and support groups that are out there. With that said it has been a busy few years and I feel like I have my voice back.
Besides dealing with fibromyalgia the monster in the room. I finally have most of my medical issues sorted out and working on obtaining better medical treatment. I am dealing with Dysautonomia, Postural Orthostatic Tachycardia (POTS), and suspected Mass Cell Activation Syndrome (MCAS). I have a great Pain Care Clinic https://pcc-pain-care-clinics-windsor.business.site/in Windsor, Ontario. Dr. Charlotte Logan together with her staff, provide phenomenal care and are truly supportive. I am thankful for their patient care and assistance over the last three years.
I got " Schooled"...
I attended the Intensive Group Program through Michael G. DeGroote Pain Clinic at Hamilton Health Sciences for a month. Various topics were presented such as mindfulness, breathing, and relaxing techniques. I learned a breathing technique that I find very helpful to me. I found that my previous experience with exercise had me thinking I could not work out again. So, the staff at DeGroote Pain Clinic taught me about modification and small movements. By inserting breaks throughout the day where I do several minutes of small stretches and exercises, I am slowly increasing my abilities. I believe I was stuck in a mindset that workouts were these intensive events. I still have to manage a high heart rate, but I believe you have to keep moving somehow. From chair yoga, tai chi, pacing, and goal setting it was all-encompassing. We all learn to juggle chronic conditions, where pacing and planning our integral in our everyday lives to accomplish our activities.
So, that's a quick summary of my blog derailment. However, I plan to dive back in and advocate.
Follow along, unite as a fibro community, and let's advocate.
Please, if you have fibromyalgia become a member of Fibromyalgia Association Canada
fibrocanada.ca and also volunteer with FAC to raise our voices.
Look to my next blog, where we will discuss a new advocacy action!