THE 7TH ANNUAL FLIGHT OF THE BUTTERFLIES
Flight of the Butterflies is a lupus awareness campaign sharing stories of the brave lupus warriors. Many don’t understand lupus until they hear the walk of a warrior. Flight of the Butterflies is dedicated to sharing those stories in May for lupus awareness month.
Flight of the Butterfly Kwajalein Daniels
When I first heard the word Lupus, I was about 5 yrs. old. My grandmother (Geleyna Daniels) and my great grandmother both passed due to complications of Lupus. All I knew about the disease is that it makes your hair fall out and it seemed to only effect seniors, Boy was I wrong.
I remember my grandmother coming to Dallas every year for the State Fair & The Dallas Cowboys. She was one classy lady, always wore dark shades, big floppy hats, and sleeves. I did not know she had to wear those items due to the disease, I assumed that was her style. She stopped coming to Dallas when I was about ten, and was in and out of hospital, then she made the decision to stop all medications because she didn’t want to suffer anymore,
I was always active in school, around third grade I started getting sick, My mom must have took me to twenty different doctors, I had a hear murmur, rheumatic fever, then one day I woke up to get ready for school like Id done millions of times and went to stand up and fell, my whole left side was throbbing with pain, kinda like a heart beat but less frequent. I spent the majority of third grade in the hospital and still didn’t get a definite diagnosis.
By the time I was 13 the sickness was gone just as abruptly as it had come.
In 1996 while being incarcerated and playing volleyball I jammed my index finger on my right hand while blocking a spike. After 3 days it got worst and more painful so I visited the infirmary and the doctor asked me if my family had a history of lupus I said yes, but what does that have to do with my finger and he replied you have inflammatory and a normal person( no lupus history) finger would have been fine by now, you may need medication in the future… No more issues until several yrs. after being released, 2011 would be the year that changed everything for me in more ways than one.
I began having blemishes in my face and little knots on my shoulders that I couldn’t get rid of as well as a painful rash on my back that prevented me from going anywhere but to work and home. MY sister went to emergency room with me in 2011 and I was told that I was allergic to cat hair. I’ve had a cat or two all my life and have never had any issues like this, so I went back after a couple weeks on my own and this time I was told I was an intravenous drug user and if I got off the needle all rashes and or blemishes would dry up. Dr said my arms look liked abscess from a needle miss, my mouth was hanging open and I could not believe what I was hearing.
I’m terrified of needles, have never ever shot any drugs into my veins and I told him so. I was told that I was in denial and that They couldn’t help me get off the drugs unless I was honest with them. I left Baylor hospital and went straight to Parkland and they took blood samples and all test came back negative except the lupus test. From then on it was specialist after specialist, procedure after procedure. If I go anywhere I have to carry a pharmacy in my purse.
I’ve been hospitalized three times, Valvular Heart disease (open heart surgery is recommended), kidney malfunction, chronic back pain, loss of 30% cognitive abilities, and major fatigue with insomnia…No one understands what I’m dealing with on a daily basis. They just do not understand how I can look fine on the outside and all hell is breaking loose on the inside. I am so tired of hearing there is nothing wrong with you, quit blaming everything on lupus you’re fine.
I’m no longer angry with my grandmother for succumbing to this horrible disease. I’d be lying if I say I haven’t thought about throwing in the towel myself. Yes its that bad sometimes, but I pray about it and remember we have better technology now, better ways to treat certain illness, and a better knowledge of what we’re dealing with. So today I chose to not give up without a fight. My name is Kwajalein Daniels and that’s my Lupus story.
Lupus In Color is excited to present Kwajalein Daniels’ story to the world. As a Lupus Warrior he/she is actively promoting lupus awareness and wearing the armor of strength in doing so.
Lupus In Color Salutes you Kwajalein Daniels. YOU ARE BRAVE, COURAGEOUS, AMAZING and STRONG TO SHARE YOUR STORY.
YOUR BUTTERFLY WINGS ARE FLUTTERING, YOUR CHIN IS UP, YOUR ARMS ARE EXTENDED AND YOUR CHEST IS OUT! FLY ON BUTTERFLY!
PLEASE SHARE Kwajalein Daniels’ FLIGHT ON YOUR WALL AND START HER BUTTERFLY JOURNEY SPREADING LUPUS AWARENESS!
#LupusInColor #ButterfliesofHope #FlightoftheButterflies #Brave #Courageous #Strong #SpreadLupusAwareness