Midweek Refuel Message: During our lupus battle, we all can feel a little helpless at times. That helplessness makes us want to try to control everything. Don’t allow feeling helpless turn you into a warrior that makes being overwhelmed the norm.
You don’t have to try to control everything. You can say no and just let things be as they are and fend off flares by limiting your stress. Tonight, make a commitment to feel less helpless in those tough moments and more hopeful in the healing that manifests throughout your lupus journey.
Ten Steps to Protect your Vibe as you Battle Lupus
Let go of things you can’t control.
Avoid comparing your lupus battle to you when you did not have lupus and to others who have lupus.
Keep your faith for healing bigger than your fears of the pain.
Don’t do anything that you know will make you feel bad, doesn’t feel right or cause you a flare.
Don’t be afraid of being alone with your pain to figure out how to handle it.
Avoid bashing yourself because you have lupus. It isn’t your fault.
Speak kindly to yourself you are fighting a hard battle.
Take care of yourself before you take care of others.
Stay away from people who drain you or who are bent on misunderstanding your lupus fight.
Ignore any opinions about how you live beyond lupus if they don’t enhance your life. They aren’t walking in your shoes so don’t let them dictate your steps.
Lupus isn’t a simple disease with an easy answer. Fevers, aching swollen hands and knees, infections, hair loss, pleurisy and more..It’s time to fight back and take your life back from Lupus. Life is meant to be lived! When you feel good live life to the fullest. When you feel bad ride out the wave to the shore dust off the sand and hit the ground running. Remember you have lupus, lupus does NOT have YOU!
I have to recite this positive lupus affirmation to myself daily. Although lupus is a part of my life I have to constantly input the importance of living my life to the fullest even in times of pain. Not every day will be roses and butterflies with lovely songs of positiveness. Sometimes it will be hard and it is in those moments that I must pick up my cross and walk reciting ….” I have lupus lupus does NOT have Me…. I have lupus lupus does NOT have Me…. I have lupus lupus does NOT have Me…. I have lupus lupus does NOT have Me…. I have lupus lupus does NOT have Me….” I will say it sometimes over 1000 times a day. I know that sounds crazy right? No it really isn’t. There is so much POWER in my tongue that honestly the statement…”I have lupus lupus does NOT have Me….” allows me to move through every pain, every heartache from the pain. It allows me to mentally prepare myself for a journey I did not choose but am taking step by step with a mindset that I will NOT allow anything that comes with lupus to bring me down. I will not allow it to take me out of my character. I will not allow it to wear me to the ground and beat me up mentally, physically or spiritually.
Someone asked me, “oh you Got Lupus?????” First off, I looked at them like they had three eyes because who just busts out and ask you that? But, I answered and said, “uh yeah I have lupus, I’ve got it right by the balls. Right where I want it strangled in the middle of my hands.” They kind of looked at me crooked eye like huh.
I had to explain that my talk to myself and to lupus directly affect the way I go about my day. If I wallow in the pity like I really want to, I have allowed lupus to take control of me and become an inherent part of me. I won’t allow that to happen. So I change my way of talking in order to curse the demon of lupus out of my body. I believe in God and I know that He is not through with me yet. Since my God is not a God of fear, despair, sickness and sadness I choose to dwell in the spirit of faith and hope and I choose to speak in that manner. Never will I give in to the pity of what lupus can bring. Lupus can destroy your spirit but I refuse to be a part of that pity party and allow it to consume me. So I choose to positively speak it out of my life. I choose to react differently so my mind will convince my body to perceive lupus in a different way. When I feel good, I will do. When I feel bad, I will rest. Every day I WILL curse lupus so that it knows that it is not wanted in my body. I WILL curse lupus so it know I’m not the one to mess with.
Got Lupus????? Yeah, but lupus don’t got ME! SPREAD THE WORD!
Rest • Rest before you need it so you won’t be knocked down because you chose not to. Rest is very important in healing beyond lupus. It’s perfectly ok for you stop and take a break. REST!
Reflect • Reflect on how far you have come in your lupus journey. See your overcoming and be ecstatic that you’ve made it past some serious issues. Reflect on how you’ve survived 100% of the days you thought would kill you. REFLECT!
Reset • Reset your mind so you can deal with whatever comes at you. Find ways to train your mind to look at your luous journey differently. Reset your spirit by tuning into yourself and being stil and quiet. Finally, Reset your body by following the first two R’s of Rest and Reflect. RESET!
REST • REFLECT • RESET DAILY its the only way to get the most healing in your lupus walk. #LupusInColor
A large factor in coping with lupus is understanding what lupus is and the course of actions to take. As in most things, having a clear and sound mind is essential in grasping vital information about lupus. It can be very difficult to digest a lupus diagnosis and emotional strain can make understanding very difficult. That’s why it’s so important to work hard at keeping your mind, body and spirit strong as you battle lupus. Doing things that bring peace, love and healing to yourself is most important.
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!
