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 April 4.
As you all know, I have Lupus and my journey has taken me through many ups and downs. Multiple hospital stays, unknown illnesses, and a lifetime of medicines define my life with Lupus. All that said, I am blessed with the ability and resources to manage the illness far better than many others in the Lupus patient family.
I actually had quite the manageable year, especially following my 2018 hospital stay and extended recovery. I still struggle daily, but I find new ways to reduce the stresses Lupus plays on my body and my life. I continue to live by the mantra that “I have Lupus, but Lupus doesn’t have me!”.
That said, many people in our community find it difficult to even get out of bed and start their day. That’s why the Lupus Foundation is so important. The San Antonio chapter provides medical resources, awareness campaigns, and support groups. Your donations stay in San Antonio to help those with this hidden, silent disease.
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, a company looking to make a larger contribution, or just come out and party with us on the day of the walk. Every day is a blessing and we should celebrate together on April 4th!
It hasn't always been easy. Here's what I shared last year -
In 2003, I was diagnosed with Lupus (Systemic Lupus Erythematosus). The diagnosis took years of doctor visits, various illnesses, and body pain. I was provided a basic medication regiment and continued follow up plan to manage the issues.
In May 2009, I was hospitalized for nearly a month. It took over a week of 104+ degree fevers, seemingly endless tests, intubation and a week in the ICU for doctors to finally believe I was having a severe Lupus flare up. I left the hospital with a more concrete illness management plan and continued follow ups.
In May/June 2018, I was hospitalized for 2 weeks because of an uncontrollable fever. Endless tests, biopsies, and specialist visits determined that the doctors could not fully figure out why I was sick. Doctor consensus was that it was, once again, *likely* a severe Lupus flare up.
My medical history isn’t to make you feel sorry for me. I’m actually quite lucky. While I continue to play sports, live an active life, and continue with normal daily activities, some Lupus patients struggle to even get out of bed in the morning.
What's probably noticeable is that for over 15+ years doctors, while knowing my full medical history, continue to struggle to even diagnose me with an “actual” Lupus flare up. I take immunosuppressant and anti-malarial medications because only one Lupus specific drug (Benlysta) has been approved for the disease in over 50 years. Little is known about how one “gets” Lupus, how it is going to affect the body, or any long-term issues to anticipate. Each year new symptoms and Lupus related reactions seem to creep into daily life.
That’s why we all need your help. Money and awareness do not solve all of the issues, but it will help administer and push more scientific studies to find a cure for Lupus, as well as, help create a resource network for patients around the country. I hope you join me and thousands of others in supporting the Lupus Foundation – Lone Star Chapter’s Walk to End Lupus Now.