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Discovering Their Power

Personal stories from lupus warriors, caregivers, family and friends highlighting their courage and power. Personal stories help us find hope and remind us that no one fights lupus alone.  Do you have a personal story you would like to share? We would love to hear from you

Lupus Warriors
Lupus Warrior's Journey to Her Diagnosis

Ashley Pippin-Jones 

 

I was diagnosed in 2012 with SLE after constantly battling infections, this weird joint pain that came out of nowhere, this beautiful rash I had developed over my cheeks and bridge of my nose. At age 25 I could barely make it through the day without feeling exhausted. After telling my concerns to my doctor over several months he finally said I think you have Lupus. I'm sending you to see a rheumatologist. After hearing this I went to my car and just cried. What the heck is Lupus?!? I googled and read about it but all I could see was " you can die from Lupus". For several months as I waited to see this new doctor, all I could think about was this was a death sentence. The rheumatology did confirm that I did have SLE. Over the years I have learned ways to cope with this disease. I'm thankful to have a great support system and have met many friends who are going through the same things.

 

What is one piece of advice/tip you would give someone living with lupus?

If I could give someone with lupus any advice, it would be that not all lupus patience are the same. Don't compare what's going on in your life with someone else's journey. Learn ways to listen to your body. You are your own best advocate. Rest.Rest. Rest!

Lupus warrior's journey to find determination within the lupus community

Shani Brewer

I found out I had lupus around my 24th birthday in April of 2019. I was living in Denver CO at the time. Being that I am from Florida, I thought the sudden joint pain I was suffering from was just due to the cold weather. Until I went to urgent care and had blood work done after suffering for 5 months. I went in to get my results and in a room full of other patients the woman working the front desk told me I had come back positive for autoimmune disease and that they didn't know which one. I froze and asked her to repeat it and she hurriedly wrote "Autoimmune Disease" on a hot pink sticky note along with a random phone number. She told me to call the rheumatologist number and shooed me off. I didn't land an appointment with the rheumatologist until a month later. And it was then that I was told it was probably SLE. Upon moving back home to Tampa to be closer to the family- my new doctor confirmed it was SLE and MCTD (Mixed Connective Tissue Disease). My lupus mostly affects my joints, often disabling me from being able to move. I felt so betrayed by my own body- didn't it seem that I was trying to live a life of happiness? Recently I had to remember that God only gives you what you can handle. With that, I gained the determination (along with Plaquenil) to seek out comfort within the Lupus community to further understand and encourage myself and so many others. And posting my story is the first step.

Numerous surgeries can't stop this lupus warrior from finding love and hope among a community of warriors

Lynn Hernandez 

Hello, my name is Lynn Hernandez and I am from Miami Florida. On May 10, 2015, a visit to the emergency room is when my journey started with pain in my abdomen. After running some tests they diagnosed me with a 22-inch spleen full of blood clots. I was admitted to the hospital and four weeks later doctors had no idea how to treat me and I was transferred to a trauma center hospital and was there for another two months, little after that they performed a major surgery, then 10 hours later I had 45 Staples across my stomach. A little more then a month or so after my surgery is when I was diagnosed with lupus little did I know that was the beginning of my journey with that doctors educated me with what the symptoms were going to be. When they mention stress and sunlight as key factors to avoid my response back was I am a mother of three and the beach is practically my front yard. In the first three years of my battle, I had five surgeries and seven procedures. Little after that, I tried my best to stay away from stress and sunlight and surround myself with the right people that will lift me up through this journey. I listen to my doctors in and educated myself and involved myself with the Lupus Foundation support group. Lupus does suck and the pain is crucial. The word Warrior definitely goes hand-in-hand with this community. The battle of the mind is very strong, whenever I have a good day I decide to enjoy every minute and every second of it because we usually do not have so many of those. Just take a day at a time.

What is one piece of advice/tip you would give someone living with lupus?

Make sure that you have a good team of doctors and if you don't there's nothing wrong with changing it. Educate yourself as much as possible, the Lupus Foundation has support groups all over the United States, and take a day at a time and YOU ARE NOT ALONE

A new mom searching for a kidney donor focuses on the gifts

 

Gabrielle Davis

It was Valentine’s Day 2009, my husband and I's first Valentine’s Day as a married couple, but there was one thing missing: Me.

After putting up with the shooting pain, heart palpitations, and tin-man stiffness most of that day, I conceded and ended up in an ER hospital bed. This was the first of many encounters with lupus. I was formally diagnosed that summer in July 2009.

A year later my kidneys were affected and by 2016 I was in full kidney failure and on dialysis. I decided to become an advocate early in my diagnosis because I wanted to turn my pain into purpose and support other lupus warriors in the fight. I desperately needed community too. Advocacy has allowed me to do some great things like provide lupus education and speak New York, DC, and Atlanta and be a voice for patients. I've also been able to raise funds for the Florida Chapter of the Lupus Foundation of America and other lupus organizations.

In 2019, my life changed for the good. I thought Lupus had taken away my dream of being a mother. It hadn't. We just had to take an alternate route. On September 24, 2019, we welcome our son AJ through the gift of surrogacy. No, I spend most of my time carrying for him and still doing what lupus and patient advocacy I can in my spare time.

Lupus might have taken a lot from me, but I've got some priceless gifts, experiences, and community in return. 

 

What is one piece of advice/tip you would give someone living with lupus?

Somehow we all have to learn to get over the guilt that chronic illness can bring. You and I didn't ask for lupus to come into our lives and turn it upside down. I think guilt is always going to be present, but we have to be able to be still and process it to get through it. Also, remember to take care of yourself and love yourself. It sounds so simple, but it's really hard when you have a mountain of responsibilities to juggle. Make time for you and your body will thank you.