2016 has been an amazing year. It is hard to believe Christmas is just around the corner! I began the summer with an MBA class – completing another course in my five-year journey to an MBA – and went on to enjoy two family vacations, and greeted fall with my first 5K. What a sense of accomplishment!
Six years ago – back in 2010 – I was working on remembering major events in my life, walking with a walker, completing simple arithmetic, and re-learning how to drive. In 2016, I was camping in the wilderness and running 5Ks.
In July, my family and I traveled to Oklahoma in the sweltering heat for a Solliday family reunion. There were 32 of us, from three months in age to 86 years old, and we spent four days in a cabin in the woods, just hanging out. Although the car ride was long and the sun was hot, I loaded up on lots of fluids before and during the trip and kept my skin covered with sun-protective clothing (thanks, Coolibar!) and sunscreen. We arrived and I was strong and ready for the vacation. Prior to finding the UPF 50 protective clothing, I rode in the car when the sun was intense and became achy, exhausted and unable to move, furthermore plagued with migraines.
The next week, I came home and had six days to catch up at work and pack for a seven-day trip to Camp DuNord in Ely with my children. There is nothing like being in the wilderness! Once again, I made sure I took all my medicine, hydrated and stayed covered from head to toe when I was in the sun. I was still able to go hiking and hang out on the beach and in the water with my kids. I never thought I would do that after I learned my disease made me sun sensitive.
In September, I ran my first 5K at the Lupus Walk for Hope & 5K Trail Run – Twin Cities and it was a blast! Thanks to the team at Minnesota MASH who helped me strength train. The trainers and coaches joined me at French Regional Park and led the warm up for everyone from the stage. I was excited to see all of my supporters.
If you’ve never been to the Lupus Walk for Hope & 5K Run, you have to experience it firsthand! What a privilege it was to be a Lupus Ambassador and join fellow Ambassadors Katie and Meghan on the stage. Before becoming an Ambassador, I did not know there were so many people in the Twin Cities living with this disease. The diversity of individuals who showed up to support the Walk/5K was truly amazing. It was nice being part of the family. I was able to walk the Walk at the Lupus Walk for Hope & 5K Run – Rochester the next weekend where I met another wonderful family of supporters.
Each individual, young and old, really touched my life those Saturday mornings. I am encouraged to know we are making a difference. Our voices are being heard and people are taking note of us. I am even more energized to continue raising awareness and monies that can go towards research for this debilitating disease. Thanks for your continued support. I look forward to meeting you one day.
This summer, I felt stronger than last year, but still had some mini lupus flares in September. Typically, the back-to-school rush is just enough to throw me over the edge. I do try to plan for it though. Here are some things I try to keep in mind at all times:
- Learn to say “no” to things and dismiss the guilt that comes with saying “no.”
- Know your limits and find the right balance of stress and work-life integration.
- Take exceptional care of yourself.
- Manage doctor appointments, medications and supplements.
- Maintain hydration and moderate sun exposure.
- Pack healthy food and snacks so you always have something.
- Budget energy stores so you can make it through the day.
I have come to understand that this is my necessary way of life if I want to enjoy summers and live pain-free. I hope these stories have helped you understand that you, too, can enjoy a full life with this disease. Every day is not perfect but it is another day to enjoy this beautiful earth.