14th Annual Flight of the Butterflies- Butterflies of Hope Lupus Warrior Stories is a powerful celebration of strength, survival, and spirit. Through the eyes and hearts of lupus warriors, we share stories that often go unseen. Stories of pain, resilience, and triumph! These butterflies may have been battered by the storm, but they continue to rise, wings open, ready to soar.
At Lupus In Color, we honor each journey as a flight of courage and beauty, reminding the world that even in the midst of lupus, warriors still fly.
Flight of the Butterflies
Lupus Warrior Daisy Martinez
My name is Daisy Martinez, I was diagnosed with SLE and Sjogren’s Syndome in 2013, in my mid 20’s. It all began with my 2 full term pregnancy of my son, Alex. My body was trying to flush him out from the very beginning, he was a high risk pregnancy because doctors didn’t know why my body was rejecting him. After I had him, almost immediately my health took a terrible turn. I was misdiagnosed for over 3 years, I had endometriosis and endometrioma that went misdiagnosed.
From 2012-2014 I had 8 surgical procedures, until I went for a 2nd opinion with a general surgeon who confirmed right away I had a tumor the size of an orange and needed surgery ASAP. My heart broke, my soul shattered as I had been convinced a total hysterectomy was needed to prevent endometriosis. A 90-minute procedure turned into an eight-hour open surgery. My incision was hip to hip. I woke up to the news that the tumor had spread along my abdominal wall, into my bladder and colon muscles.
This was the beginning of my hell, the beginning of understanding the underlying reason why my body was fighting itself so harshly. They finally connected my Lupus with endometriosis cells, which fed into the bad ones creating this nightmare. After my recovery, I saw a rheumatologist and began treatment. lived a normal and steady life, enjoying being a stay-at-home mom, hands-on with soccer, dance, and participating in my daughter’s school’s booster club and as a parent volunteer.
I became just as involved as my son grew older. In 2021, I began to feel ill, extremely fatigued and brain fog, swollen legs and hands, butterfly rashes, etc. I went back to my rheumatologist who confirmed I was out of remission and that my right kidney was being affected. I was put on Plaquenil and began self-injecting Benlysta. I gained over 60 pounds, thin my hair to the point of loss, leave me chronically fatigued, and resulted in my body being malnourished. There were several times, I cried and begged God to take me with him, just to put me out of my misery and pain. I began monthly Benlysta infusions 2 years ago. I can say my health is stable and I am not getting flares every other week like I was from 2021-2023. My children, Desie and Alex have been my biggest motivators, supporters, and encouragement to fight daily.
It’s easy to put it in words as a story, but living every day during the good and worst days, I didn’t know if I’d make it. My babies got me there. The support of my boyfriend, Trevor and his mom, got me there. I had to learn to listen to my body and mental health, say no if I’m too tired and stand my groundagainst peer pressure or being talked down for not “going out” or being “social”. I was the life of the party: always outgoing, smiling, and making new friends. No matter how painful or miserable I felt, I always had a smile on my face. I’ve never lost my faith and took refuge in my love for God, His words, and prayer.
To someone newly diagnosed, you will have really really bad days, you will have great days! Always find the strength to smile and seek your faith even if you never believed or aren’t religious. Appreciate the small things: movie nights at home, crafts, puzzles, board games, etc. Stand your ground when friends or family push you and guilt trip into going out. ADVOCATE!!! You MUST! for yourself, your sanity, and your body.
It’s okay to rest in bed and sleep until you’re strong enough to get up. Surround yourself with people who truly understand your struggles, love and support you. You are you’re only advocate with doctors and at home. Listen to your body and really, really don’t over due it (easier said than done) I know lol go online for support groups. I was hesitant at first, but now I’m surrounded by Lupus warriors and blessed with those I’ve crossed paths with. You’re not alone!
We are butterfly warriors and that’s something to be very proud of.
Lupus In Color Salutes you !
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 THIS FLIGHT ON YOUR SOCIAL MEDIA AND START THE BUTTERFLY JOURNEY SPREADING LUPUS AWARENESS!
#lupusincolor #flightofthebutterflies #lupuswarriors #butterfliesofhope
