"Bucket List" - A collection of goals, dreams, and aspirations that you would like to accomplish within your lifetime.
But how about an "Anti-Bucket List"? By my way of thought, this is a collection of occurrences, actions, and things that you never would have imagined transpiring in your life. Some items on my list:
1. Diagnosed in 2010 with Systemic Lupus Erythematosus, a chronic autoimmune disease that causes inflammation and pain in any part of the body. My immune system that usually fights infections is attacking healthy tissue instead. Only one in ten people with Lupus are men. There is no cure for this disease, and it can be fatal.
2. Challenged with joint pain and swelling, advanced osteoporosis, chronic peripheral neuropathy, tinnitus, migraines, Hashimoto’s thyroiditis, Raynaud’s Syndrome, Sjögren's Syndrome, kidney stone manufacturing, photosensitivity and fatigue.
3. Prescribed Benlysta infusions in 2013. Benlysta is the first drug approved by the FDA in over 50 years to specifically to treat active Lupus (approved 2010).
4 Scheduling and arranging life in 4-week increments to accommodate Benlysta infusions.
5. Participating in SABLE, a clinical study that is tracking the long-term side effects of Benlysta. Some of these side effects may cause death. It is not known if Benlysta causes these serious side effects.
6. Taking an active part in the Lupus Foundation of America’s 2017 National Policy Summit in Washington D.C. to meet with Florida’s District and State Representatives imploring Congressional funding for Lupus research and education programs.
After a recent heated dispute with my pharmacy over timing on obtaining one of my very critical prescriptions and subsequent loss resulting in alarming adverse consequences on missing my dosage for three days, I realized (floundering in abject misery) that my “Anti-Bucket List” is not full.
Far from it.
Wouldn’t it just be easier if there was a cure for this cruel disease that steals lives?
I am more dedicated than ever to raise awareness and be part of solving the mystery of Lupus. The Wolf Repellent Crew is back for our tenth year participating in Tampa's Walk to End Lupus Now event. For those inflicted by the on-going damage, including myself, these Walks serve as a yearly focal point to reconnect with others battling Lupus.
Please consider supporting our efforts by donating, joining us at the walk, or just take a few minutes to learn about Lupus and the individuals and families impacted by this disease. We are the advocating momentum for critical new studies to improve understanding of the disease and lead to new treatments for people living with this cruel and potentially fatal disease.
For now, I live in hope for a manageable chronic illness in the face of no cure. After ten years, I still feel lost, fearful, and overwhelmed at times. I try to live a normal life with changeable obstacles that are beyond my control.
A heartfelt thank you to the previous years’ generous donators, supporters, walkers and Lupus awareness proliferators. Let’s go out and carry on for the milestone tenth year!
"I don't speak the language. I can't understand a word.
Where angels fear to tread I've sometimes walked and tried to talk.
But how can I be heard in such a world when I am lost?
I'm doing what I do to see me through.
I'm going out and carrying on as normal.
I don't speak in anger though the chances that I've let pass me by and now regret.
I can't forget. They're haunting me like a score of unpaid debts.
Is it enough to live in hope that one day we'll be free without this fear?
I'm going out and carrying on as normal." - Neil Tennet / Chris Lowe