I started 2019 with a smile on my face and looking forward to this year.
2018 was a monumental year for me. I was able to do a lot for patient advocacy and myself it sparked new hope in me for a better tomorrow, despite the hard times that occurred during the year. I lived the dream of being featured in a tattoo magazine, and for such a great cause.
January 28th I enter my 33rd year around the sun. By 33 I should have my stuff figured out, right? I feel as if I am just starting to figure it all out, including myself and mothering. I am forever grateful for the life lessons that chronic illness has given me, but not so grateful for the moments and experiences it steals from me. I do however have a choice to be grateful for what I can do and have finally taught myself to really push myself forward, even with my chronic illnesses. Sometimes pushing yourself forward can also inspire others in ways you never imagined.
Arthritis Research Canada
I recently joined Arthritis Research Canada’s patient advisory board. Arthritis Research Canada is North America’s largest arthritis research center and covers important topics for not only the treatment of Canadians but world wide. I wanted to do this for awhile but it took some time for me to feel comfortable enough, I am glad I did. It’s like being behind the scenes in the underground arthritis world. Only 4 years ago I was so interested in the underground metal scene, far less drama in the arthritis world and better drugs.
Project summary: Mental health matters in arthritis
The physical effects of arthritis are undeniable and devastating. However, arthritis also has a complex relationship with mental health. Having arthritis may lead to depression or anxiety, and in turn, depression and anxiety can worsen arthritis. Dr. Mary De Vera is using “big data” (e.g., many records of doctors’ visits, hospitalizations, and prescriptions) to study whether the burden of depression and anxiety in British Columbians with arthritis is increasing over time and the effect of other contributing factors, such as medication use. This will be the first study of its kind in Canada on mental health in arthritis. It will not only help improve the lives of people with arthritis but will also bring more awareness to this important matter.
Project summary: Strength training for people with rheumatoid arthritis: promising strategies to get active
Current guidelines recommend that people with rheumatoid arthritis (RA) perform strength training exercises at least twice a week to build or maintain muscle, and reduce pain and fatigue. However, remarkably few people with RA meet this goal. This disparity highlights an important missed self-management opportunity. Dr. Jasmin Ma is studying what factors help and hinder participating in strength training among people with RA and will identify the best strategies to support their long-term engagement in this type of physical activity. These results will inform future health promotion efforts to empower people living with RA to improve their quality of life.
Study Title: Effectiveness of Online Physical Activity Monitoring in Inflammatory Arthritis (OPAM-IA): A New Model of Care
Physical activity is important in managing arthritis.Reasons for inactivity include motivation, exercise doubts and limited counselling. To address the problem of inactivity, we will test a new program at improving physical activity among rheumatoid (RA) and systemic lupus erythematosus (SLE) patients. OPAM-IA is a program that uses Fitbit Flex (wireless physical activity tracker) paired with FitViz (new application), and physical activity counselling to help people with RA and SLE be more physically active safely and at their own pace. Physical activity information will be collected by the Fitbit Flex and viewed through the FitViz by a physiotherapist to guide participant’s progress.
Coaching For Health with Pain BC
I am really excited about the opportunity Pain BC is willing to train interested volunteers to become a coach for health to help those those dealing with chronic pain. Coaching for Health is a telephone-based lay coaching program designed to help people living with pain learn self-management skills, regain function, and improve their well-being. As a volunteer, I will be trained in highly specialized coaching techniques that use transformative dialogue to empower people to change unhelpful health-related behaviors,and establish and sustain helpful ones. They provide our volunteers with intensive training, ongoing support, and continuing education courses, as well as a possibility to embark on a new career path towards a professional coaching certification tied to hours of volunteer service.
Rheumatoid Arthritis Support Group
For the past year I have had access to the largest Rheumatoid Arthritis support group on facebook. It has been interesting trying to navigate social media on so many different platforms but this group has nearly 30,000 RA patients from around the world. I’ve had the ability to share some of my work on there and seen it do well by helping others. That is a remarkable feeling and why I do what I do.
Healing Through Love
My father living across the world in China is definitely difficult, especially given how my family treated me after my chronic illness diagnosis and that boiled up in me until my release in 2018. He’s really been the only consistent family member who’s shown me unconditional love, the same love I recognize I have for my son. A lot of what motivates me is to make my father proud and in memory of his sister and mother.
He was present me with the day I was diagnosed with rheumatoid arthritis and since then supported me or whatever I wanted to do in life without judgement. At the time of my diagnosis he was visiting because his sister, whom I share the same disease with, passed away. Here we are nearly 4 years later, the day he is leaving after spending two months with me I see my rheumatologist who suspects I am developing Raynauds Syndrome, another complication of RA but also had a stack of my Inked Magazine interview to give to her patients. It’s clear I’ve not only made my father proud but also my rheumatologist. I am thriving through my chronic illness.