LUPUS IN COLOR PRESENTS
THE 4TH 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 Butterflies Begins…..
Flight of the butterfly Tawanda Smiley
Tawanda Smileys LUPUS journey
THE Saga continues….
*Age: 42 *Diagnosed: July 2013
SLE with Brain and CNS Involvement, additional areas Lung, Heart, Nephritis of the Kidneys; Antiphospholipid Syndrome, Peripheral Neuropathy
Chiari Malformation Type 1; Trigeminal Neuralgia, Occipitial Neuralgia, Myositis; Asthma, Depression, Sleep Disturbances, Urinary Incontinence,
“Lupus The Great Mimicker” entered my Life in subtle ways like attacking my joints, especially in the Wrists, fingers, knees, elbows and the toes and those symptoms of SLE that lingers and seems like I never got enough rest. But a mystery of the brutal attacks within the Trigeminal and Occipitial Neuralgia. The Trigeminal Neuralgia were afflicting me due to my issue with Lupus Anticoagulant blood issues.
My blood gets very thick and constricts my blood vessels and SLE invades the trigeminal nerve, which is the sensory cranial nerve located in the face. Please learn more about Trigeminal Neuralgia google it and the search engine will link you various reputable sites. After countless ER visits which I came on arrival by ambulance, I endured leaving my two children behind to enter the ER and had to endure the medical community’s lack of knowledge of SLE and of course Trigeminal Neuralgia wasn’t a household name.
Imagine being unable to communicate, with the attack against the fifth cranial nerve (TN) and its very intense pain. The attack on me lasts for intervals between 2-3 minutes and I ball up on the floor wishing it could be over. Such a difficult time that had me saying to myself, Really! Because of the complexity of that flare. I had a discussion with my Physician at the time to discuss that that ER visits were more and more frequent. This was red flagging my visits to the ER Doctors, since I was taking opioid medications due to severe levels of pain that was not controlled well due to underlying issues. I had to advocate to my team of Doctors the concerning health issues that I was facing. So we came to the realization that I needed a pain contract that would be electronically available, this was monumental to my patient care. I review many of my medical records because you never know what you can find.
One incident at the ER the doctor screened my patient information and ordered labs in additional to what was needed. I was annoyed but educated on how things are handled. Sadly, I have an autoimmune disease that you are Not educated enough!
This journey with SLE is a continuous process of ups and downs, but I love the victories of knowing that no matter what, I’ve got much more life to live, which will be tough days of pain not that I want it but it’s a reality. Depression relapses are a reality for me that I battle and overcome.
Let me conclude by saying, I have moments when you enter my life on occasions and stayed four to five months which lead to picking up the pieces of the storms of Life. No matter what rely on your FAITH to see you through.
Lupus In Color is excited to present Tawanda’s story to the world. As a Lupus Warrior she is actively promoting lupus awareness and wearing the armor of strength in doing so. Lupus In Color Salutes you Tawanda Smiley. YOU ARE BRAVE, COURAGEOUS AND AMAZING 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 TAWANDA’S FLIGHT ON YOUR WALL AND START HER BUTTERFLY JOURNEY SPREADING LUPUS AWARENESS!
#LupusInColor #ButterfliesofHope #FlightoftheButterflies #Brave #Courageous #Strong #SpreadLupusAwareness