Did she say, ‘I love lupus’?
When I traveled to Phoenix on a stem-cell treatment excursion, I made specific plans to meet Toni Grimes, a woman described by the Lupus Foundation of America as a lupus warrior and advocate who’s vocal in the city, the state, and across the nation.
This petite, type-A veteran was leading the Pheonix lupus support group and preparing to travel to Congress for the annual National Policy Summit: Advocacy In Action. (Read the resulting victory from this advocay day: Update on Lupus Funding and Health Care Reform)
From my research, I knew Toni was an athlete and trainer known for supporting disabled veterans and people who are physically limited as a result of the painful autoimmune disease. Meeting her would give me insight on conquering this dibilitating disease. Or so I thought. I shared that expectation with her over Starbuck’s tranquility tea, and she chuckled.
“I love Lupus,” she said. “Lupus changed my life.”
Toni had been United States Army major in route to become a lieutenant colonel when lupus spun her through a whirlwind of pain, nephritis, neuropsychiatric lupus, and central nervous system damage, leaving her in a vegative state that took months of recovery.
“People wonder why I say I love lupus, but I do,” she said seriously. I knew then that this conversation would be interesting.
She gave me two hours. I picked her brain. Not only did I walk away with new insight but this lupus lieutenant took me through a motivational boot camp that would prepare any soldier for battle. (See the video we prepared for the Louisiana Lupus Foundation below).
“Lupus has taught me to truly love myself, to love my life. It’s taught me to live!” Toni said. Our conversation continued like this:
People talk about grief cycles and how these dis-eases may cause us to feel the range of emotions how has that experience been? When someone gets diagnosed with lupus there is some relief that there is finally an answer to all their pains and alignments. Then the grief process begins. I spent my time going through the five stages: denial, anger, bargaining, depression and acceptance. For me I was in denial for the first year because my lupus was mild. It wasn’t until the lupus affected my kidneys while I was deployed to Afghanistan in 2008 and was eventually medevaced back to the States via Landstuhl, Germany. Stage two, anger, began upon returning to the States, which lasted about a year as the Army was determining my fate in the military with this new condition. After being allowed to remain on active duty with some limitations, I began stage three, bargaining, throughout 2009 when I was diagnosed with neuropsychiatric lupus and psychosis along with post-traumatic stress disorder (PTSD). This was my worst flare to date that resulted in a six month hospital stay in four different hospitals. During this time, the depression set in hard core resulting in a few suicide attempts because I was experiencing so many losses at once: my marriage, my military career, and almost my life. During that period I never thought it would end until I reached my aha moment of acceptance, realizing there is life after a lupus diagnosis. My goals outside of my military career haven’t changed much; they have just been modified based on my “new normal”.
Do you have any other conditions? I was diagnosed with fibromyalgia in 2009 and osteoarthritis in 2012. It’s extremely common that autoimmune diseases travel in pairs or groups. I believe my osteoarthritis came from my five years of chronic high dose steroid usage…and 19th years of military service which included jumping out of planes and ruck marches.
Is “prevention” possible for lupus? I honestly don’t think lupus is preventable, I think it’s in your DNA and a trigger puts it into action.
As you have reflected in your personal experience was there a trigger or series of triggers that culminated into lupus? Stress, stress, stress! No one in my family has lupus therefore there was no genetic link. I can pinpoint my flares that resulted in my nephritis and neuropsychiatric lupus and central nervous system lupus! They all steam back to excessive stress. Those two flares have made me look deeper at my stress levels. As I’ve grow as a lupus warrior, I’m able to pinpoint when a flare is coming on and eliminate my stressors to prevent that flare from going full-blown.
Have you considered or experienced alternative or aggressive treatments like stem cell treatment, medicinal marijuana, hypnosis, Benlysta, chemo, clinical trials, meditation? I have never tried stem cell treatment, medicinal marijuana, hypnosis or clinical trials, but I know of many lupus patients who have been helped by these treatments. Due to the type of lupus I have, nephritis and central nervous system lupus, I am not eligible for Benlysta the first and currently the only drug created specifically for lupus patients. I’ve been doing chemo infusions since 2009 and they have definitely minimizing my flares. I’ve most recently been utilizing mindfulness and meditation to help deal with my daily aches and pains and to help minimize the stressors in my life.
What are your secret weapons for getting to the other side of flares and crisis? After ten years of this crazy relationship with lupus I have realized that my best weapons are greeting lupus with a smile each and everyday, maintaining a positive attitude, counting my blessings and daily accomplishments, loving my body unconditionally, daily meditation, daily affirmations, and trusting in God.
What are your hobbies? Have they changed because of lupus? Fitness has always been a big hobby for me. During my military career and my first two years of retirement, I was a bodybuilder, but due to a knee replacement and fibromyalgia I have moved towards cycling, yoga, and meditation. Some of these changes have also come because of age.
What has been the most interesting fact or statistic around lupus that you’ve found? That May of 2011 was the birth of the first lupus specific drug, Benlysta. I didn’t realize how many drugs the lupus community uses from other diseases and demographics.
What’s your vision for advocacy. Is it awareness? Research funding? Health policy changes? It is a combination of all three. Educating all doctors outside of the rheumatology field can help with timely diagnosis. Research funding is a must so that we can get closer to cure. Healthcare policy changes are crucial as health insurance policies changes with regards to pre-existing conditions and the cost to stay healthy.
We are encouraged because for the second time since the Lupus Foundation of America’s National Policy Summit was held June 26–27, the House Appropriations Committee approved funding for critical lupus programs, as the Committee voted to provide $6 million to continue funding for the National Lupus Registry at the Centers for Disease Control and Prevention and $2 million for the National Health Education Lupus Program at the Office of Minority Health. The Committee voted to provide $35.2 billion for the National Institutes of Health, a more than $1 billion increase for the single largest funding source for lupus research.
by candacejsemien @jozefsyndicate
