LUPUS IN COLOR PRESENTS
THE 4TH ANNUAL FLIGHT OF THE BUTTERFLIES
Flight of the Butterflies is a lupus awareness campaign sharing stories of the brave lupus warriors. Many don’t understand lupus until they hear the walk of a warrior. Flight of the Butterflies is dedicated to sharing those stories in May for lupus awareness month.
Flight of the Butterflies Begins…..
It was the summer of my senior year and I was in a bad car crash. It was May 1977. The doctor came in one day, told me that I have a disease called lupus, life expectancy 5 years. Take 14 aspirin and good luck. I was in shock. It was in my senior year, I was going to whoop it up. But lupus had other plans.
By Nov I couldn’t put my socks and shoes on. My weight had dropped off, my hair was falling out. I was stiff all over. I was missing a lot of school. Finally my mother called Duke University and I remember I was so very weak, they took 14 vials of blood and I almost passed out. On that Friday the doctor called and told mother to get me to the ER or I would be dead by Monday. I was admitted and went through every test imaginable. Bone marrow biopsy, spinal tap, kidney biopsy, so many tests.
I stayed in the hospital for a month and a half. I went in at 94 lbs., came out weighing 125 lbs. My first love/hate relationship with steroids. I was home schooled and graduated with my class. That fall I was accepted to a community college, took interior design and I thought my health was stable. I even got married in 1980 and felt “normal” until the steroids started affecting my joints. First my knees, my first total knee replacement was in 1981, to date I have had 5 total knees and 4 hip replacements. I am waiting to have another on my left hip in the fall.
In 1989 I went through kidney failure. I blew up like a balloon. My weight was 225… All fluid. Then I had Cytoxan therapy from 1989 – 1990, It was brutal. Plus I had a hip replacement. I had my first hip in 1986 and they kept popping out so from 1985-86 I was in a body cast from chest to knees, I could take it off for a bath only an hour a day. By November 1989 I had a right hip replacement surgery and I got staph. The doctors tried to save the hip but in March 1990 the doctors took my hip out and performed a muscle flap rotation. I was hospitalized for 8 weeks.
Between the hip and my kidneys I was one sick person. But I still worked at any job I could find, some of them I had to take leave of absence because of flares. In 1992 I had my first heart attack, I was 32. I tried so hard I was working at a hosiery mill, I had to stop working and went on disability, but I went back to work at the hosiery mill in 1994, and in 1998 I had another hip replacement and that night I had a heart attack. I was rushed to another hospital and had 7 more. I had to have open heart surgery. 5 blockages, 3 bypasses. By 1999 my kidneys failed again and I started Cytoxan therapy again. The 80’s I was in and out of Duke, 90’s I lost my hip and my job. It became just a life of doctors and pills.
My life with lupus has been anything but easy. Doctors think you’re not hurting because you look fine. Family and friends get tired of you being tired and I have been trying to figure out how to get back to me. Depression is a big problem. I feel like I lost myself that spring night in May of 1977. My body turned against me. I’ve lost 2 children due to miscarriages because of the medications. My body is full of metal, one leg is 3″ shorter than the other. Because of the weight gain and loss my skin just hangs. Muscle mass has disappeared and my marriage fell apart.
Lupus is a very misunderstood disease, it’s not easy to deal with but with the right mind set you can make it. I pray that one day I can say that I had lupus. I don’t know if this will help you. But no two patients are the same. We may go through the same thing but the disease is called the wolf for a reason. It’ll sneak up on you and attack you. I have learned some things that put him back in the cage but sometimes there’s no way to get back to me. I miss my old self. I miss me without drugs in my system. I am on 17 different medications. Being on disability I have to choose between pills and food. I hope awareness is made so others won’t have to go through the nightmare I have. I hope all I went through in the 70’s has helped in some way.
Lupus In Color is excited to present Lori’s story to the world. As a Lupus Warrior she is actively promoting lupus awareness and wearing the armor of strength in doing so. Lupus In Color Salutes you Lori DeHart. YOU ARE BRAVE, COURAGEOUS AND AMAZING 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 LORI’S FLIGHT ON YOUR WALL AND START HER BUTTERFLY JOURNEY SPREADING LUPUS AWARENESS!
#LupusInColor #ButterfliesofHope #FlightoftheButterflies #SpreadLupusAwareness
