Lupus: “We may have lupus, but lupus does not have us!”
Published Aug 3, 2022 • By Berthe Nkok
Rosadela has battled with lupus for 3 years, without getting a diagnosis. A few years ago, she launched the non-profit organization She’s Got Lupus, to talk about lupus and raise awareness about this invisible disease.
Read her story below!
Hello Rosadela, thank you for agreeing to talk to Carenity.
First of all, could you tell us more about yourself?
I am from the first generation American born to Cuban and Mexican immigrants. My dad came to America at age 8 with his older brother and my grandmother, with my grandfather to join later after working off his debt in the sugar cane fields. As a non english speaker, growing up black in Boston during the 60’s/70’s my father still succeeded to achieve what I believe to be the American dream, he graduated from UMASS college, began his own business and bought a home for his family. My mother would come to America with her mother to work in the fields picking fruit when she was a young teenager and was a dedicated, hard worker with my father at their own business.
My heritage shaped a lot of my core beliefs and why I push myself through a lot of painful flare ups. I am a mother to 3 boys, ages 18, 12 and 8, so my schedule is usually sports practices and games. I always loved the outdoors before my diagnosis, mostly the beach or swimming pools and easy, flat grounded hikes.
15 years ago, you were diagnosed with lupus. What were the first symptoms? How many doctors did you see and what tests did you have to take?
Looking back I recognize I may have been experiencing symptoms that had been dismissed as eczema when I was younger, a scaly rash on the inside of my elbows, and occasional rashes on my face. When I was around 20 years old, I began feeling tightness in my finger joints. Because of my profession as a graphic designer at the time, the doctor dismissed it as carpal tunnel, gave me a prescription for naproxen and sent me home.
Over the next two years the pain in my fingers slowly traveled to my wrist, then elbows, then shoulders, and lastly hips and knees. By that time it was painful to lift my own body weight out of bed, out the car, or out of a chair. The same doctor would tell me I was too young to have arthritis and order x-rays and routine bloodwork. Each uninsured visit to my doctor left me with no answers and no relief. I would go across the San Diego border into Tijuana, Mexico to get more naproxen.
My dad’s older brother, Pedro Durruthy, had been living with lupus for about 25+ years by this time and he recognized some of my symptoms from his own journey. I grew up watching his battle with lupus, from when he had three massive strokes that left the left side of his body paralyzed and took his kidney, and even a donor kidney leaving him on permanent dialysis. He was the one who told me to ask my doctor to specifically test me for lupus, which is how after an almost three year battle, I finally got my diagnosis.
I strongly believe that if I had not specifically asked to be tested, I may have had to wait longer.
After I asked for the specific blood test, I received a phone call from my doctors office to confirm that I had lupus. Since growing up watching my uncle's difficult battle with lupus, I felt terrified of what my future held. I did not know if I would be paralyzed, if I would also have kidney failure and need dialysis, I had no idea. The uncertainties of it all left me completely scared.
With the official diagnosis, my uncle scheduled an appointment for me with his rheumatologist and at that meeting I was able to get advice on what to do to take care of my pains. Because I was a young 24 year old single mother and still uninsured, I was not able to financially keep up with doctors and specialists. I would go across the border to Tijuana, Mexico and get naproxen to manage the minor aches and pains. This worked for me as my lupus wasn’t quite severe yet.
How were you told about the diagnosis and how did you feel? How did the illness evolve over the years? What were your treatments? Does it help?
At age 25, I entered into a very toxic and abusive relationship and after I became pregnant, I felt stuck and that’s when my flare ups became more frequent and severe. Stress is a major cause of flare ups with anyone with autoimmune diseases and the living conditions I was under, caused flare up after flare up.
The flare ups began as rashes on my arms, neck and face, then ulcers on my ears and lip, my hair began falling out, my eyes would swell up, and constant achy joints. Since these symptoms would come and go, I never pursued medical attention, I would go to the Emergency Room and not follow up with primary care.
When I was 30 years old, married to my abusive husband with a total of three young boys, the stresses of my life situation began taking its toll on my lupus. I was going to the ER almost every month and finally a doctor suggested I visit a different local hospital where the team was more knowledgeable with lupus. Since starting care at the new hospital, doctors had me seeing a rheumatologist, cardiologist, pulmonologist, ophthalmologist, neurologist, nephrologist, and heptamologist.
Over the years my flare ups evolved from rashes. I have been diagnosed with hypothyroidism, hypertension, Raynauds syndrome, neuropathy in my feet, rheumatoid arthritis, lupus sle, depression, adult ADHD and asthma. I have experienced shingles four times, ulcers, hair loss, rashes, discoloration of skin, tooth decay, cellulitis, and a deep vein thrombosis (DVT) in my chest.
I have been treated with chemotherapy, blood thinners, antidepressants, Cellcept, steroids, plaquenil, breathing treatments, and am currently taking blood pressure medication, steroids, plaquenil, antidepressants, an inhaler and a weekly self injection of benlysta.
At this current time I would say the treatments have worked and I am on a positive apath to better health.
What impact has the disease had on your daily life? How do people around you view the disease? Are they understanding and comforting? Do you feel free and comfortable to talk about it?
My daily life has been impacted greatly in that I had to learn to slow down and not overdo my load. People around me regularly see how unpredictable lupus can be and have become understanding and extremely supportive.
In the beginning they did not understand how severe my lupus was because they only saw the outward appearance and I usually put on a fake smile to avoid talking about what I felt.
Now I am extremely comfortable talking about lupus and I think because I talk about it more, others are able to be more understanding and comforting.
A few years later, you decided to launch the non-profit organization “She’s Got Lupus”. Why did you make this choice? What messages do you want to convey?
I used my She’s Got Lupus social media to help me speak out about lupus and raise awareness for this invisible disease. I found the more I spoke about lupus, the more power I took from lupus and I began thinking how helpful this would have been for me in the beginning of my journey. So She’s Got Lupus became a non-profit dedicated to improving the lives of those living with an autoimmune disease. I want others to know that we may have lupus, but lupus does not have us and we can push through the pain to live the life we choose.
Why did you decide to become a life coach?
I wanted to be a life coach to motivate others, not just with lupus or autoimmune diseases but in general. Mental health strongly affects your physical health so I just wanted to be a vessel for others to achieve the best version of themselves.
What are your plans for the future?
Plans for the future include a docuseries following the lives of those living with autoimmune diseases, more local events and to be able to provide free life coaching sessions.
Finally, what advice would you give to Carenity members who, like you, are affected by lupus or have a loved one affected?
I would like to advise you to advocate for yourself or your loved ones suffering with lupus. If you feel like you are not being heard by your doctor it is ok to ask for a second opinion and also to speak to others about your illness and struggles. When you build that community for yourself it helps alleviate stress which in turn alleviate flares.
Any last words?
Please check out @shesgotlupus on all social media platforms.
Give it a "like" and share your thoughts and questions with the community in the comments below!
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