Greetings everyone, a new year begins!
I am glad to have the opportunity to share my lupus journey. I was diagnosed 30 years ago. Prior to this diagnosis, I had many difficult and mysterious symptoms. As I have read and heard from others with lupus, this is not an uncommon path to treatment.
Until my early 30’s my life was very active; I worked long and irregular hours, enjoyed traveling, and had a busy social life with family and friends. Then strange things happened within my body. Besides joint pain, headaches, weight loss and fatigue, my liver was in crisis. It was a frightening chapter of my life. I finally had an emergency liver biopsy which led to the diagnosis of lupoid hepatitis. What a relief! I thought I was going crazy, as some of my symptoms were so strange.
My rheumatologist recommended I visit the local lupus society, and there I found reading material and videos which were very helpful. I knew almost nothing about lupus before I was diagnosed.
As I remember those early days of life with lupus, it helps me understand a lot about myself – my fears of being able to manage, earn a living, and be independent. I remember thinking, “can I ever work again?”. There is also a fear that arises when I have a bad day, “how long will this last? Am I having a flare?”. This type of anxiety is never far away. I have struggles with depression too. By making connections with other lupus patients, I know I am not alone.
Lupus caused me to change many things about my life. This is something all of us with lupus understand. my mental health, priorities, and self-image go through real tests and trials. I also live with painful ankylosing spondylitis and arachnoiditis.
I find lupus very humbling. It constantly teaches me that I am not in control of everything, but that I can find ways to navigate through some challenging times. Some things have been blessings. Staying at home, and needing more rest, led me to study old passions. My Cree grandfather and Metis grandmother taught me lessons in traditional arts, language and Cree culture. This gave me new focus and goals. I had the time to learn new skills. As a result, I have been creating prints, art cards and other crafts for many years. As my grandfather would say, “remember to show the creator that you are glad to be here”. I start each day with some stretching, and find a moment for gratitude. Looking beyond myself I discover a world full of beauty. I allow myself to rest when I need to.
I am grateful to everyone that stands by me as I face health issues. This certainly includes the lupus society, a place of community, learning and support. It is a wonderful place to connect, and share our journeys.
The butterfly is a perfect symbol for lupus. In Cree and other First Nations cultures, the butterfly is a symbol of transformation, balance, joy and beauty. Many blessings to everyone during 2024.
