Lupus is unpredictable. If anyone has Lupus, it doesn’t mean that you are alone, there are other people out there in this world who too have Lupus and experience the same pain and fear you are having.
The exact cause of this disease is still unknown. Lupus sufferer’s goes through many emotional, psychosocial and lifestyle changes. Thus, sharing stories and offering advice can surely explores these issues to many lupus patients to feel confident and boost them to fight against this disease.
One such story, I recently came across Rena Brown (Connect with her on Google+ & Twitter) who is a mother, poet & Lupus survivor. I thought to share her experience that may help you to stand strong with your disease. Here’s the interview:
Who Are You & Where Are You From?
I am Rena Brown and I am from Atlanta GA. I am a mother, poet, writer, advocate, aspiring actress and I am a Lupus survivor.
How You Noticed The Symptoms & Signs?
I have had this terrible disease for 20 years. I have seen more doctors then I can recall. It has probably been around 30. My white blood cell counts were always elevated, my potassium was low and I had heart palpitations. I was told by most doctors that it was just stress. I knew it was not and I kept fighting to find out what was wrong. I finally found a doctor that took what I was saying seriously and tested me for Lupus since my mom and brother had it. That is when I was diagnosed, 2 years ago. This is a terrible disease my own mother had a triple bypass at 32.
Have You Done Any Surgery?
People are dying from this disease and more awareness is needed. I called 30 doctors’ offices to see if they had pamphlets readily available for patients living with Lupus and all of them said no. It would also be nice to see a commercial like the ones about breast cancer about Lupus on T.V. I had surgery in March for my parathyroid and I also have rheumatoid arthritis. My joints hurt badly all the time and sometimes I have trouble walking. My blood pressure is consistently up and down.
What Medicine You Were Prescribed?
I take lisnopril 10 mg twice a day, metroplol 50 mg and I do not sleep most of the time. Still I get up between 3am and 4am.
Do You Have Any Life Remembering Experience During This Journey?
My transmission went out in my car and I had to take my rent money to pay for rides to see my doctors. I am unable to work because of this chronic illness. I used to do bit parts and extra work to support my family. The last set I was on I was a barefoot merchant selling jewels. I stood in the cold barefoot with a toga on for the shoot. The director had us out there from 6am to 8 pm. I caught double pneumonia. I also used to write books and novels until my hands started cramping up so bad making it next to impossible to do this.
Is There Any Sign That Make You Still Remember Your Fight?
The only physical signs, I have of this illness is a scar across my neck from the parathyroid surgery, I forever have dark circles under my eyes and I am currently wearing a heart monitor for 1 month to keep track of my heart rate. Going to the store has become a challenge for me because I am so drained.
Living with this disease has made me more social and more aware of others who share the same plait. I used to be a social recluse snuggling up next to my cat with hot chocolate and a good book. Now I take to twitter and make you tube videos trying to make people more aware of this disease. My motto is together we can. I would like to see commercials put on T.V. about Lupus.
Any Favorite Skill That Helps You Keep Motivated?
My favorite coping skills is the joy of taking on twitter and sharing information. I would also like to see doctors’ offices with important information about chronic illness in their waiting rooms. I tried to reach out to some celebrities who fight this disease and also to GMA. I have not heard back. Pam Grier did follow me though so that was a good thing.
How Do You Feel Now? Any Message You Would Like to Share With Other Sufferers?
I feel different daily. Some days are good some are bad. Everyday holds a different challenge. If I had one wish in the world it would be to have a car so that I can be more mobile or perhaps get some of the pamphlets in waiting rooms and to also host a charity event here in Georgia so that the money can benefit people who are suffering with Chronic Illness with little things like paying a bill, offering a ride to the doctors or paying someone’s rent. Of course, I would verify that this person really needs help.