Lupus In Color Butterflies of Hope Lupus Warrior of the Month Donne-Lee CONGRATULATIONS Donne-Lee!
You are an educated, inspired, encouraged and empowered Lupus Warrior and we salute your bravery as you beat lupus day to day.
Donne-Lee will be celebrated on all of our social media outlets. Take a moment to congratulate Donne-Lee on her award and bravery in her fight!
The Lupus Warrior of the month program highlights lupus Warriors for their seen bravery from those around them. Warriors are nominated and then chosen from the story submitted. Want to nominate a lupus warrior? Visit: https://forms.gle/kNR1P8oC8cnTEcF56
THE 8TH ANNUAL FLIGHT OF THE BUTTERFLIES Butterflies of Hope Warrior Stories
Flight of the Butterflies, Butterflies of Hope Warrior Stories 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, Butterflies of Hope Warrior Stories is dedicated to sharing those stories in May for lupus awareness month.
As a child, I enjoyed bike riding, swimming, and being outside in nature. In 1993, at age 6, I was diagnosed with lupus (SLE), with symptoms of joint pain, leg rash, and a 105 temperature. What did a 6 year old know about lupus in 1993? Absolutely nothing! All I knew is that I had to swallow distasteful liquid each day, known as Prednisone. The rheumatologist that I was seeing as a child copied two black and white pages from an encyclopedia, then handed it to my parents to read. There was barely any information or resources about lupus back then. The Lupus Foundation did not exist in Georgia; it was the Arthritis Foundation at first.
As a child, lupus bothered the joints of my ankles, feet, and fingers. I participated in sports and extracurricular activities at a very young age to help my bones. Softball games, swimming, piano recitals, and violin concerts kept me busy and focused as a child. Despite lupus at a young age, I had a very active childhood. However, I never focused too much on “having lupus.” I was busy living life as a high school teenager.
At age 16 my 1st flare up caused high blood pressure leaving me hospitalized in ICU for 7 days. I recovered and stayed in remission for 8 years until the beast struck again in 2012. Lupus attacked my kidneys causing kidney failure, which led to the unthinkable – dialysis. Even though I dialyzed 3 times a week for 3 hours, I did not become discouraged. I knew sooner or later that the sun would shine again once the storm was over. After 9 long months of dialysis and 12 months of chemotherapy, miraculously my kidneys regained function. At age 32, I currently focus more on living a proactive lifestyle by healthy eating, exercising, and helping others. I partake in yoga, stretching, and deep breathing. During my spare time, I take pride in volunteering at the Lupus Foundation and with a nursing organization that provides patient care and education to the uninsured population.
I would like for others to know that they are a strong individual that will do great things in life. Continue to have faith and always be thankful for each day. To the younger children with lupus; your future is bright regardless of this cruel disease. Do not let lupus put “limits” on your life. To the parents of young children: it takes a lot of strength, patience, and understanding to deal with lupus as a parent, but it takes a special kind of strength to battle lupus as a child. To all lupus warriors; do not allow lupus to define who you are as a person. Lupus is a fraction of your life. It does not consume WHO you are! Don’t hold yourself hostage. Redirect your attention to positivity. Waking up each day gives me hope, knowing that I’m capable!
Butterfly Champion, Lauren Green
Lupus In Color is excited to present Lauren Green’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 Lauren Green. 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! FLY ON!
PLEASE SHARE Lauren Green’s FLIGHT ON YOUR SOCIAL MEDIA PAGES AND START HER BUTTERFLY JOURNEY SPREADING LUPUS AWARENESS!
We had an amazing conversation with Dr. Maggie Cadet, Rheumatologist. Dr. Cadet debunked myths and gave us facts. It was a great wrap up to Lupus Awareness Month. We were educated, inspired, encouraged and empowered. Thanks to everyone who was able to attend today. Please be on the lookout for Dr. Cadet’s information in our magazine that will share some great education for all to read. #LupusInColor#DrMaggieCadet
THE 8TH ANNUAL FLIGHT OF THE BUTTERFLIES Butterflies of Hope Warrior Stories
Flight of the Butterflies, Butterflies of Hope Warrior Stories 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, Butterflies of Hope Warrior Stories is dedicated to sharing those stories in May for lupus awareness month.
For over a year I been experiencing pain not knowing why or what was causing me to hurt. A few doctor’s took a look at me and say I don’t see the problem, you look healthy lab work shows nothing. In December 2019, I went to a new doctor to try figure out what’s going on with me. At the Arizona Arthritis Specialist Rheumatologist Clinic the office did lab again for the 3rd time. The trip was worth it, they found out what’s going on with me. I am not happy about the results but at least I know and I have a treatment plan. I lost my grandmother 2 years ago to Lupus I watched her fight for years. I know and understand not how she truly felt.
Everyday is a struggle for me, I am grateful for the good days. I am blessed to have a great support from family and friends.
I am a Lupus warrior
Today I brought myself flowers!! I am praying for more days like today.
Lupus In Color is excited to present Katrina Alva’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 Katrina Alva. 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! FLY ON!
PLEASE SHARE Katrina Alva’s FLIGHT ON YOUR SOCIAL MEDIA PAGES AND START HER BUTTERFLY JOURNEY SPREADING LUPUS AWARENESS!
THE 8TH ANNUAL FLIGHT OF THE BUTTERFLIES Butterflies of Hope Warrior Stories
Flight of the Butterflies, Butterflies of Hope Warrior Stories 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, Butterflies of Hope Warrior Stories is dedicated to sharing those stories in May for lupus awareness month.
My name is Shawnna-Lee, known online as Lee My officially diagnosed journey with Lupus began at the end of 2015, however I believe I may have developed lupus in 2009 or earlier. The skin on my scalp became extremely dry and covered in sores. I noticed I would go through times where my entire scalp was tender to the point where I couldn’t run a comb through my hair. And when I was able to, I was losing a lot of hair. I saw 3 specialist dermatology doctors from different hospitals who all diagnosed me as having various types of skin conditions. No tests were ever done but I was prescribed numerous different shampoos and ointments over the next 6 years. Nothing worked. In 2013 I had my first pain related hospitalization due to a sudden and excruciating pain in my back that came out of nowhere. The hospital didn’t really run any tests, I was released after 2 nights being told it was just chronic muscle inflammation. One thing I have learned from my diagnosis journey is you could see the doctors a thousand times with a variety of ailments and your Lupus will only be discovered if they are looking for the right thing.
Finally at the end of 2015, having gone to a new dermatology doctor again at a different hospital, the dermatologist finally said they need to do extensive blood tests to find out what might be the cause of my rapid hair loss. Those results revealed SLE at the end of 2015, age 28. Less than a year later I was diagnosed with Sjögren’s syndrome. I’ve been on Hydroxychloroquine since early 2016. I had a depressive episode in 2016 when I tried to deal with my new reality of daily pain and saying goodbye to the person I once was and the life I once had. I had to accept that this was my new reliability and that didn’t really sink in until the beginning of 2018. With the help of friends and family, especially my best friend Simonne (who is no longer with us). She pushed me to stay strong and be better than my Lupus. Now I am here today, speaking to hundreds of strangers about my journey. It’s scary at times but this is my therapy and this is my story. I am grateful for everything I have been through. Diagnosis: SLE, Sjögren’s, Raynaud’s, Serositis, Seborrheic dermatitis.
Main Symptoms: Fatigue, Joint pains, ankle swellings, chest pain, chronic muscle inflammation in my back, dry mouth and sores on my scalp. Daily Medications: Hydroxychloroquine, Mycophenolate, amitriptyline. Adhoc Medications: Colchicine, CoCodamol, Prednisolone occasionally when symptoms flare and 6-monthly steroid back injections.
Lupus In Color is excited to present Shawnna-Lee James’ 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 Shawnna-Lee James. 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! FLY ON!
PLEASE SHARE Shawnna-Lee James’ FLIGHT ON YOUR SOCIAL MEDIA PAGES AND START HER BUTTERFLY JOURNEY SPREADING LUPUS AWARENESS!
Join us for a candid conversation with Dr. Maggie Cadet, Rheumatologist, about lupus myths and facts. Help us wrap up lupus awareness month as we continue to educate, inspire encourage and empower lupus warriors worldwide. Sunday May 31, 2020 Instagram Live 1:30pm EST. #LupusInColor#drmaggiecadet
Meet us on Instagram Live @lupusincolor 1:30pm EST. TODAY
Dr. Magdalena “Maggie” Cadet is a well respected board certified clinical rheumatologist in New York City. Dr. Cadet’s interests have always focused on women’s health issues such as osteoporosis, issues relating to arthritis, autoimmune diseases such as lupus, sports medicine, and motivating others to live a healthier lifestyle. As a former competitive figure skater, former ballet dancer, pianist and current long distance runner, Dr. Cadet understands the importance of keeping one’s joints, muscles, bones and immune system healthy in order to maintain an active lifestyle and avoid serious injuries. She has dedicated her career to raising awareness of arthritis and autoimmune diseases which may cause significant disability and chronic pain in people, especially minority women. Her continuous clinical work, community outreach, and research in the field of arthritis and autoimmune diseases as well as her participation in national education about arthritis has resulted in her being a recipient of a Regional Leader Award by the Arthritis Foundation.
She is an active athlete and has completed running six Shape Fitness Half Marathon in NYC. For her knowledge in the area of sports medicine and autoimmune diseases, Dr. Maggie has also been featured in Essence, Prevention, The Ultimate Health Guide and online sites such as Lifescript, Healthline and Everyday Health. Her experiences as a rheumatologist were also captured in the book “Lupus: Real life, Real patients, Real Talk”. She has been a speaker for educational events held at Athleta, Lulu Lemon, Bandier and Equinox. She is also on the board of @LupusChick official. Dr. Maggie plans to continue her quest in motivating individuals living with osteoporosis, arthritis and autoimmune diseases to advocate for themselves and learn more about their disease and treatments while maintaining a healthy lifestyle.
Lupus Awareness Month Lupus Warrior Tips31 Days of quick tips to help lupus warriors navigate through their lupus life. #LupusEmpowerment #LupusTips #LupusInColor #Day31
Organizations and individuals across the country have come together all month to help promote & heighten awareness about lupus. The hope is to not only to educate by spreading the truth and facts about lupus but to also one day find a cure.
This is your 31st Butterfly of Hope.We need awareness! We need a cure!Encourage everyone you know to let it FLY!
THE 8TH ANNUAL FLIGHT OF THE BUTTERFLIES Butterflies of Hope Warrior Stories
Flight of the Butterflies, Butterflies of Hope Warrior Stories 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, Butterflies of Hope Warrior Stories is dedicated to sharing those stories in May for lupus awareness month.
Flight of the Butterfly Penny Partin
My journey began 32 years ago, diagnosed 27 years ago. and today, at 58 I continue my battles with health issues, because of Lupus. If I told you my story, you would hear Hope that wouldn’t let go. And if I told you my story, you would hear Love that never gave up. And, if I told you my story, You would hear Life, but it wasn’t mine. So, If I should speak, then let it be of the grace that is greater than all my sin; of when justice was served and where mercy wins! of the kindness of Jesus’ that draws me in.
I am one of the lupus warriors with the drug induced lupus. There’s not lot said about this one as much as the other ones. But, it’s as damaging to the body as the others. Had they caught mine in time I would have gotten over it in six months they said. But, the blood pressure meds had sent me into orbit and there was no coming back around with lupus as a hitchhiker.
The best way I’ve found is to be treated as the problems arise! Like the diverticulitis that almost killed me 4 years go for I had to have a colonoscopy and the one that did pervaded my intestine caused my bowels to leak out. But, my body surrounded it so it didn’t rupture. This was a year from the time I had to have an ic pic in my arm to surgery to repair and then breaking open and wearing a wound vac for four months. This time last year, I had knee replacement and I couldn’t get up on my own without help.
I had a second surgery so they could bend my knee had to come home with a knee bender and therapy for six months. But, thank God today I can walk and climb my hill behind my house and walk stress off. I also have eye issues and get shots in my left eye. I’ve been having now to get them every 8 weeks. I hope others will see they need to be careful with medicine as it can hurt you! as well as help you!
Oh to tell you my story is to tell of Him…If I told you my story, You would hear victory over the enemy. And if I told you my story, you would hear freedom that was won for me! And if I told you my story, you would hear Life that overcome the grave. If I should speak then let it be of the grace that is greater than all my sin; of when justice was served and where mercy wins. Of the kindness of Jesus’ that draws me in. Oh to tell you my story is to tell of Him! For this is my story, and this is my song! Praising my “savior” all the day long… Oh to tell you my story is to tell of Him…Greater is He that is in you than he that is in the world 1 John 4:4 🙌 and this is my story, of my 30+ years! battling Lupus. ”Giving Thanks” for my story! Thanks for all you do!
Lupus In Color is excited to present Penny Partin’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 Penny Partin. 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! FLY ON!
PLEASE SHARE Penny Partin’s FLIGHT ON YOUR SOCIAL MEDIA PAGES AND START HER BUTTERFLY JOURNEY SPREADING LUPUS AWARENESS!
THE 8TH ANNUAL FLIGHT OF THE BUTTERFLIES Butterflies of Hope Warrior Stories
Flight of the Butterflies, Butterflies of Hope Warrior Stories 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, Butterflies of Hope Warrior Stories is dedicated to sharing those stories in May for lupus awareness month.
On February 1, 1996, an emergency Cesarean was done due to preeclampsia I gave birth to a beautiful baby girl that was born at 30 weeks premature with a hole in her heart. The doctors thought that I would be fine, and everything would return to normal after giving birth, but things continued to get worse. My blood pressure was still not normal, my wound was not healing correctly, and blood work was abnormal. The gynecologist was unable to figure out what was wrong with me, so they began to consult with a specialist.
I had been in the hospital for over 5 days at this point and was unable to visit with my newborn baby in the neonatal intensive care unit.
I was later diagnosed with Systemic Lupus Erythematosus by infectious disease doctor and was linked with a Rheumatologist and internal medicine doctor. I was put on several different medications with one being prednisone to help control lupus.
After being home for only 2 days I was rushed back to the hospital and admitted where emergency surgery was done called Pericardiocentesis. Due to all the issues from the lupus flare of giving birth, another surgery, a heart doctor was added to my care. I was in the hospital this time for about 7 days and unable to visit with my newborn baby prohibited bonding time. All that I could do was call to check on my baby and let my husband and mother visit with her. She was later discharged as a healthy baby at 4 weeks old with no major medical issues where we bonded and still have a strong bond today.
Depression hit after receiving the diagnosis of lupus. I was hurt, didn’t know what direction to turn because I was in a new relationship, a new baby, and trying to finish school. Then to be told you have lupus and wasn’t familiar with the disease made things even harder for me at the time. It was an emotional process that I was not ready for at the time because I was only 21 years and that was concerned the prime of one’s life. I had support from my family, church family and friends helped me through a very hard time in my life. To help me with coping I educated myself about lupus.
I was later told that I was unable to work due to all the issues from lupus. As time went by my health started to get better and I was eventually able to go back to work. Over the years I continue to have lupus flare and other medical issues.
Spring of 2016 as my health began to start failing me. I had the flu, pneumonia, pleurisy and I was left with a bad cough that would not go away. There was continued visits to internal medicine doctor, pulmonary specialist, and rheumatologist. I even consulted with getting a second opinion from another rheumatologist with no help. Until one day my regular rheumatologist did further test and consulted with another doctor which proved I had Interstitial Lung Disease. The recommendation was to take Cytoxan by IV. After I researched it and another second opinion, I did the treatment. I was still having some issues, so I was sent to a Pulmonary specialist at UAB where it was recommended to start taking Cellcept. I am currently on Cellcept and low dosage of prednisone to help maintain.
I currently still have lupus flares where I have major leg pains, muscle pains, and fatigued. I have learned that I have other major medical issues that have caused doctors to say that I am no longer able to work. I have been diagnosed with type 2 diabetes, migraines, avascular necrosis, neuropathy, osteoarthritis, hypertension, insomnia, depression/anxiety, Cushing’s syndrome, Obstructive sleep apnea, sickle-cell trait, restless leg syndrome among other things. I have 3 pages of medications that I take daily or take as needed pending the situation. I keep a list of medications and my diagnosis with me at all times in case something goes wrong and I am rushed to the hospital.
I have fought to get on disability with no avail since August of 2016. I am currently still fighting for my disability because the doctors feel that I will no longer able to work. The struggle is real because I never thought I would be in this position of not working, having all these major medical issues and having so many lupus flares that are beyond my control.
It is currently an emotional battle to cope with my situation of not working, depending on my husband, and family members. I don’t feel I have the support I had 23 years ago with the diagnosis of lupus, because times have changed, everyone has their own challenges compared to then. I know it’s through faith and the grace of God that I’m still here today. Most of my days are spent journaling, keeping up with doctor’s appointments, reading, spending time with family/friends, advocating and believing in my true purpose in life and that’s fighting for my life. I believe it’s important to let others know my story because it is a struggle for me each day to make it through the day. I want to encourage others to be the best they can be and not let the disease take over their life.
Lupus In Color is excited to present Angela Lackey’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 Angela Lackey. 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! FLY ON!
PLEASE SHARE Angela Lackey’s FLIGHT ON YOUR SOCIAL MEDIA PAGES AND START HER BUTTERFLY JOURNEY SPREADING LUPUS AWARENESS!
