It's time to celebrate the great support system around me and provide resources for those that sometimes struggle through daily activities by participating in this year's Walk to End Lupus NOW! on October 14, 2023.
The past year has felt like a transition back to normal for our community, but has brought about some major changes for me and my family. I'm thankful that the walk gives me the opportunity to spread Lupus awareness and also provide everyone with an update on my personal Lupus journey.
I'm happy to say that with the great support systems around me, my Lupus activity is generally "controlled" and kidney functions (Lupus Nephritis) are showing the best lab work numbers of the past decade!
The past year has not been easy on my Lupus journey, though. Last year, I updated everyone on the “new to me” medicine called Benlysta. It did not work for me and I decided that the stress of monthly infusions was not worth the seemingly insignificant “improvements” in my active Lupus. Additionally, the rheumatologist I had seen for 12 years retired and I was forced to start a relationship with a new doctor. Luckily, I was able to identify a doctor in the same practice and the transition is going smoothly. The stress of retelling your journey, communicating some of the issues that might not show up on lab work, and building new trust in caregivers is a mentally daunting task. I continue to be blessed with the healthcare options and resources that provide me the extended opportunity to maintain my care, though.
The biggest change was my wife, Ari, and I welcomed our first baby, Xavier! You’ve all seen plenty of pictures of him already and he will be at the walk as an added incentive to participate. The arrival of Xavier has been everything and more than I could have imagined, but it did bring on the normal new parent stresses, as well as, additional silent personal health concern issues. I always asked myself if I would have enough energy to be there for all the day-to-day needs. Would the lack of sleep cause enhanced stresses on my body? Would my autoimmune issues make it difficult to care for a child that will likely bring home any and every illness from preschool? It’s been a very intense learning process that did include some severe viruses caught from Xavier that were not easy to fight off. I have to find different ways to recharge and maintain my physical and mental health. As a parent, there are no days off no matter how you might feel, but I have a partner in Ari who knows the signs of my Lupus stress and I am slowly learning how to better communicate my health needs rather than internalize them.
Not everyone has these support systems from caregivers or family. That’s why the Lupus walk is one of the most important ways to contribute to our region’s services and outreach efforts. The money that we earn stays here. It helps your neighbors. Access to affordable, life-saving medicine should not be a privilege. Your contributions will directly lead to reducing patient expenses by building awareness and increasing funds toward necessary research and support groups that will help those most in need.
We do not know everything about Lupus and every year is a new opportunity to get one step closer to solving the cruel mystery. Your financial support stays in our region to fund research, support groups, and outreach campaigns that could lead to a cure. If you are not in a position to help financially, share our stories. Make sure people are aware that over 1.5 million people in the United States suffer from Lupus. In the near future, I know that I’ll be able to provide an update that I’m no longer one in 1.5 million and I’ll be able to thank each of you for that.
Help me and others say and believe that “I have Lupus, but Lupus doesn’t have me!”.
If possible, please join my team “Kickin’ Lupus Out This Joint” and consider donating to this year’s walk. If it’s not the right time for you to donate, that’s perfectly fine. You might know someone else you can forward this message to, or a company looking to make a larger contribution. Every day is a blessing and we should celebrate together on October 14th!
http://chapters.lupus.org/goto/kickinlupusout2023
