I hate the month of March. Why? As an educator, it’s the longest month of the school year that typically has no holidays (other than Easter from time to time) and lots of lousy weather. In the Northeast of the United States, the skies are gray, the weather is cold and damp, and my disease tends to flare as March comes in like a lion and goes out like a lamb or vice versa.
The past few months have been extremely difficult due to a horrific flare that has drained my body of almost all of my energy and most of my hope that things will improve. I felt like this 20 years ago when my world came tumbling down when my myriad of autoimmune diseases began to impact my every day life. Back then, I felt utterly alone. It wasn’t until I found a blog that my life began to change. Though that blog, I began to find my way to advocacy and education. How? I found other people living with various forms of autoimmune arthritis and I began to feel empowered.
March 2023 is both Women’s History Month AND Autoimmune Disease Awareness Month. I decided to push past gray and drab view of this Wintery month and focus on some Amazing Women that inspire me to keep never give up as I ride the roller coaster of my health.
In the early 2000’s I was floundering. I felt so isolated within the walls of my disease and truly believed that no one understood me. Then I found the blog, “The Single Gal’s Guide to Rheumatoid Arthritis.” The blog was very much inspired by Sex and the City. It spoke of dating, fashion, and figuring out the new normal that is living life with arthritis. For the first time since my diagnosis, I felt validated. I remember she did a series of comics. I printed them out and hung them on my office wall. My friend looked at them and said “It’s so you!” Validation is an amazing feeling. Sadly, I don’t believe Sara blogs anymore. I hope she comes across this post so I can thank her for showing me another way of living with my illness. She inspired me to do more and I did.
The Single Gal’s blog had an advertisement for a buckle bracelet. The idea behind the bracelet was to ask someone to help you buckle it up so you could share a bit information about your autoimmune arthritis disease. I ordered one immediately. That is how I met Tiffany Westrich-Robertson, the bracelet designer and fellow patient. A few months after purchasing the bracelet, Tiffany friended me on facebook and asked if I wanted to join the “Buckle Me Up! Movement”. A group of patients coming together to spread awareness. I did. That movement soon became the International Autoimmune Arthritis Movement (IAAM) Three years later I helped cofound the nonprofit called, “The Internationational Foundation for Autoimmune & Autoinflammatory Arthritis”, AKA “AiArthritis.” Tiffany had a vision that patients could work as partners with other stakeholders in the arthritis community to develop better outcomes in research, awareness, and education. She brought that vision to reality and I am so proud to be a small part of the amazing work AiArthritis has done. Not only has Tiffany become a partner in advocacy, she is a dear friend.
We’ve worked together on advocacy in Washington DC, research projects, and through the years, she has become one of my “rheum sisters.” We’ve laughed and cried over the years when it came to our diseases and struggles. Often times, people warn others off of strangers you meet online. I met Tiffany in 2009 online and she has become a friend. I can’t tell you how much it means to connect with others living with similar chronic conditions who just “get you”. If you don’t follow us already, please check us out on the following platforms:
And check out our website: https://www.aiarthritis.org
Throughout the month of March, I will be highlighting women who truly made a difference in my life as a part of Autoimmune Disease Awareness month.
What a terrific idea !! I will read every one !!!
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Thanks my friend.