2012 began for me with the Lupus Foundation of Minnesota asking me to be an ambassador for their organization. I was initially hesitant for a couple reasons. One was the lengthy flare I had been dealing with from the recent, and very sad, death of my father – I wasn’t sure if I would be able to follow through. The second reason was my ongoing, on-and-off lupus diagnosis – I wasn’t convinced that I would be a very good ambassador with my “lupus-like”, “watching you for lupus”, borderline ANA-negative, and undifferentiated mixed-connective tissue disease titles that I carried. I had only recently been declared as having lupus from my immunologist/autoimmune specialist in Plymouth, and I thought they might want someone with a more black and white case, not fifty shades of gray!
However, because I have had so many years of medical testing, hospitalizations, surgeries, placental abruptions/miscarriages, bleeding disorders, neurological issues and other crazy symptoms that have systemically affected me, and because my only child, a young daughter, was having similar problems and was being watched for lupus, I felt it was important to say yes.
People with autoimmune diseases need better care, testing and treatments. Period. This is especially true when diagnosed with multiple conditions. In the past 10 years, I have been told I have Hashimoto’s, ITP, Raynaud’s, fibromyalgia, autoimmune autonomic neuropathy, unexplained pancreatitis, inflammatory arthritis, degenerative arthritis, mixed-connective tissue disease, immune deficiency, and now lupus. Whew! In the years prior to this, I had a over a decade of anemia that didn’t respond to medications, low platelets, bleeding and migraines. Yet through it all, no answers with minimal treatment.
The medical community, itself, needs to have a better understanding of lupus and other similar autoimmune diseases. Perhaps there should be more clinics, like the one my daughter and I now visit, that strictly specialize in immune/autoimmune conditions. (We should brainstorm on that, and other helpful changes we’d like to see in 2013!) Regardless, the lupus community needs assistance, our medical community, families and friends need more awareness of this disease and the research community needs funding to pull it all together.
As I began to volunteer and speak at a few gatherings, I found out how much this all bothered me. When faced with discussing my medical condition, as well as my daughter’s, I found I had to speak broadly or I’d be overcome with emotion. Every day we face choices, pain and fatigue. Some days we face a new symptom or crisis. Other days we feel strong enough to push through, perhaps then “overdoing” it. Added stress causes flares, having fun outdoors causes flares from the UV, viruses linger on and create more fatigue, pregnancies can be dangerous, social gatherings are tricky and dare we plan a vacation? It seems no matter what we do, lupus creates a challenging situation. But the most frustrating part comes from the lack of understanding and treatments for it. It feels like you’re going for ride, not knowing where, how or when you’ll get there – and having to accept it whether you like it or not.
I decided I wanted to do more than just speak and be a face at the Walks, I was going to attempt to make a difference, even if it was just towards a few individuals. Through the help of Gwen, I created a “lupus ambassador” facebook page that I would share current research findings, inspirational stories and lupus facts.
After that, I decided to host a fundraiser the evening before the Lupus Walk for Hope and 5K Run-Duluth. I made a handful of calls and in less than an hour had raised funds, sponsors, food and beverages to hold the first “This Train is Bound for Glory” event. I was deeply touched by the overwhelming response by everyone I called. My bank donated money, Green Mill donated all the food, Bernick’s Pepsi the beverages, my daughter’s orthodontist donated funds, as well as a friend from church to sponsor the band’s equipment rental -the band, MYNX, donated their time and talent, and my employer, the Lake Superior Railroad Museum & North Shore Scenic Railroad, donated the use of a multi-car train on a two and a half hour trip along the North Shore. KOOL 101.7 donated numerous radio spots and an interview. Volunteers were numerous, including the engineer, fireman, conductor, bartender, car host and the crews who put the train together and gave us heat on a cool October evening. Members of the local lupus support group jumped in and assisted with raffle prize tickets that evening too, and brought their families along for the ride. At the end of the night, we raised $3,000, had a wonderful time, gained television coverage and created relationships with sponsors who would like to participate next year if we do it again. Incredible support from all directions flowed in to benefit both myself, and the LFM event I was creating.
Reflecting on the year, I feel like I was the one who benefited the most, because I reconnected with some great friends from high school. Not only did one friend drive up here and support the walk, she brought a friend, her sister and brother in-law and has since asked me when next year’s walk will be, so she can recruit more people to make the four hour drive to Duluth from our hometown. Wow! Then on Christmas morning, my grade school/middle school best friend from many, many years ago wrote on my Facebook page that she gave me a Christmas present this year – a donation to the Lupus Foundation of Minnesota! Between research advancements, awareness efforts, and the love and support I felt from new and old friends and family – 2012, with LFM, was a commitment I’m glad I accepted.
Peace and blessings to you. Happy New Year!