2014: Taking Part in the Walk to End Lupus
In March of 2014 my husband and I committed to walking in the Walk to End Lupus Now Boston fundraising event for the Lupus Foundation of America. It was something I had thought of doing for the last couple of years and this year seemed to be the right one. I was motivated. I wanted to do something that mattered and spread awareness. It was only a one-mile walk and I felt I could do it, so we created a team, Barbara’s Believers and began raising sponsorship funds.
Committing to it was one thing; getting my flare-stricken body into a “let’s do this” mode was another. I woke that Saturday morning at 6 a.m. (because it is about an hour and 40 minute drive to Boston) and thought, “This was a bad idea.” I was exhausted and hurt everywhere. But I had committed to it and I was determined to make this happen. Lupus was not going to stop me.
My team consisted of myself, my husband (and greatest supporter), all four of my kids, my son in-law and my oldest daughter’s fiancé. I realized when we were all together, all wearing our lupus walk t-shirts, what a powerful feeling it was. For that one special morning, I actually felt like I can beat this disease. I felt like what we were doing mattered. I felt loved.
And the people I met at this walk, my fellow Lupies, were so amazing and dedicated. The Boston Common was filled with families like ours tired of the struggle and the pain. My husband summed it up beautifully. As he stood in line for my youngest kids to get their faces painted, a fellow spouse of a Lupie struck up a conversation. He talked about his wife’s struggles, my husband shared mine in return. There were many, many things in common. There were several replies of, “me too” and “been there”.
My husband told me about it on the way home that afternoon. He said it was the first time he spoke with someone who knew what our life was like with lupus, and had been through the same challenges. It felt amazing to him to have that moment. Lupus can feel like a very lonely affliction, even for him. Nobody understands the day-to-day struggles… except at this type of event. Everyone there understood.
Our team raised more than $1,400 for the Lupus Foundation of America, but we gained a connection that we could not put a price tag on. Lupus can make you feel like everything is out of your control. Taking some of this back by taking action to fight for a cure was an empowering feeling. I encourage you to be a voice for this disease. There is power in your voice, there truly is.
What You Can Do to Raise Awareness
- Find a walk for lupus near you. Check out the Lupus Foundation of America’s website for the walk scheduled that is closest to where you live. Even if you are signing up for next year, take action now.
- If someone asks about lupus be open to sharing what your experience has been and what the disease does.
- Wear lupus awareness items whenever you can. People will begin to recognize them the more they see them. The goal for the future is for all to know what lupus is and to be supporting action for greater research and a cure.
- Find new ways to advocate. Support others with this disease. Share your story. Be a voice for a cure.
2015: Turning Misery Into My Message
On October 24th, 2015, I walked with my team of lupus supporters in the Lupus Foundation of America’s Walk to End Lupus Now in Boston. Frankly, I was wondering how I was going to make it through the day.
In a flare for the last several months, I feel like each day presents insurmountable challenges for me just getting through work and taking care of my family.
I have cried more times than I normally do lately, usually alone, late at night when the pain in my chest is so severe I question if I need to head to the ER or just tough it out because there is so little they can do, unless of course it is actually a heart attack.
There is always that uncertainty with lupus. My cardiologist recently found fluid around my heart, so each time the pain comes crushing in, I must wonder if it is simply pain I must live through, or if it actually is pain signaling something is about to kill me.
It is a guessing game. A cruel, ongoing battle where you don’t want to go to the hospital for nothing, yet you are suffering symptoms that would cause anybody else to call 9-1-1.
I feel vulnerable and miserable, but somehow I remain determined that my misery should fuel me as I spread my message about lupus. Something must be done.