Providing Answers, Support and Hope in Georgia

Thirty-One Faces of Hope: Altomese Jones

The lupus community includes people living with lupus, friends, family and supporters across Georgia. For Lupus Awareness Month, we would like to highlight some of our lupus heroes and champions. 

Altomese Jones

My name is Altomese Jones and this is my battle with lupus and myself. In the spring of 1998, it became very painful to walk. I was also breaking out with some sort of rash on my face. I had an appointment with my OBGYN, and I was telling her about how I was feeling. She examined the rash on my face and saw how difficult it was for me to walk. Luckily, she had just come from a conference talking about lupus and she immediately told me to make an appointment with my primary Doctor.  

My primary Doctor sent me to a Rheumatologist. The Rheumatologist, ran a lot of blood work on me and then treated me for Rheumatoid Arthritis and placed me on a high dose of prednisone. He was also concerned about my antibodies, so I was referred to a Nephrologist. 

Dr. Edrea Jones from Piedmont Atlanta Nephrology, (still my Nephrologist) also ran blood work on me and told me I had Systemic Lupus Erythematosus (SLE). She explained that Lupus Nephritis is an “autoimmune” disease and my immune system was attacking my kidneys. She advised me to get on the Transplant list, because I would lose my kidneys soon. I was also placed on high blood pressure medication, because of my failing kidneys. I was 30 years old when lupus changed my life. 

My blood pressure was never regulated.  My doctors tried different medicines, but it was always high. Sometimes, it was my fault when I didn’t take my meds. I thought, “skinny people didn’t need high blood pressure medicine.” I was wrong. On April 8th 2009, I had a Brain Aneurysm. I even had seizures after my brain surgery, but thank God I made it through with no side effects. 

August 29th 2009, I married my best friend, Eric. This was one of the best days of my life. Eleven days after that, my kidneys failed. I was placed on Hemodialysis until my catheter for Peritoneal Dialysis could heal.  I wanted to die, but I never told anyone. I was on Peritoneal Dialysis for almost five years. 

In May 2013, I got out of bed and fell to the floor. The pain in my legs was unbearable. My husband picked me up and carried me everywhere I had to go. My primary doctor then referred me to an Orthopedic Doctor. We were told my hip needed to be replaced from years of taking prednisone. Two weeks after surgery on the right hip, my left hip was replaced. I had osteoporosis throughout my body (from taking Prednisone for so long). My Rheumatologist told me; I had the body of an elderly woman and if I fall, I will break something. He also told me, I would likely hurt the rest of my life.

Amazingly, on May 16th 2014, my stepbrother, Randy, gave me the gift of life with one of his kidneys.  That gift was unbelievable. I thank God daily for allowing me to live, but still I really wasn’t living. I was just existing. Then, I came across a support group starting up on my side of town. Southside Support Group with the Georgia Chapter of the Lupus Foundation of America. I called Neena Smith-Bankhead and went to my first meeting. At first, I was not really a willing participant. There were about sixteen people there. They told their stories and some of them were very inspiring. I started looking at caretakers, (i.e., my husband) differently. 

I need my support group, I learn from them, and I’ve met a lot of good people with the same issues I deal with. Finally, I don’t have to be quiet, angry, mean or tough. I had the honor of being asked to become a co-facilitator of the Southside Support Group. So now, I’m excited to hear stories, educate, do vision boards and go to the movies/museum once things are safe again. “I try to be a rainbow in someone else’s cloud.” – Mya Angelou

I’ve learned a lot through my journey with lupus. I thank God for my husband, family and friends. Your caretakers are there to help you with your struggles with lupus. Talk! Yell! Cry! Let Your family, friends, and doctors know about your good and bad days. You don’t have to do this alone. Get in a good support group like Southside Support Group. As we say, “We’ll leave the light on.” And remember, “IF CAN’T CHANGE YOUR FATE, CHANGE YOUR ATTITUDE”

-Altomese Jones