My Lupus Journey
I suffered from many symptoms from an early age, around 10 years old. I was getting a “butterfly”. rash on my face, struggled with being in the heat, frequent fevers, and small seizures. My mom was a single mother of 6 and she could not afford to take us to the doctor. She called me her “sickly child”. I was born 3 months early, weighing 1 pound and 4 oz, exactly 12″ long. I was “sickly”, constantly having breathing problems, getting pneumonia, or struggling with my asthma. Once the seizures started, they were petite mal and my mom called them, “episodes.” It was not grand mal seizures where I’d convulse on the floor, I’d just stutter, drop whatever I was holding, and forget what I was saying or doing. These small seizures would last only 5-8 seconds.
By 12 yrs old I started having horrific migraines and pain and inflammation in my joints-particularly in the hands, legs, feet, ankles, hips, and knees. Joint inflammation is typically one of the first signs of lupus, and a normally energetic person may suddenly suffer from extreme joint pain and weakness. My mom said I was just having “growing pains.”
I was an extremely active teenager. I had been in high stakes rodeo starting at age 3. By the time I was 13 I was doing rodeo, volleyball, basketball, snow and water skiing, and mountain biking.
Finally my mom decided to get a referral to have me see a neurologist for the migraines and seizures. We tried to explain the “episodes” to the neurologist but he felt the only concern was the migraines. I had a CAT scan and was given medicine for my migraines and we were sent on our way. My mom felt like something just wasn’t right. She set me up to see my pediatrician again. We had been out in the sun at a rodeo, I was participating in, all weekend, and I was exhausted. I had a butterfly rash over my face and blisters all over from a “sun burn”. My pediatrician mentioned the butterfly rash, and the blisters and decided to do some blood work. The outcome: wear sunscreen and a prescription for the “rash” on my face.
Push forward to 19, I’m headed to a big rodeo with a friend and we stopped for breakfast at a little restaurant. While we were eating I had a grand mal seizure. I was rushed to the hospital via ambulance. They did blood work, a CAT scan, and a few x-rays. The Dr came in and asked if I had Lupus. I told him I’d never even heard of lupus before. I had high ESR levels and low kidney function. I stayed in the hospital for 5 days and was released with Q referral to see a rheumatologist. Unfortunately I didn’t have one where I lived, but found one 2 hours away. I also set up an appointment to see my neurologist since I’d had a grand mal seizure. My neurologist kept me on the medicine they placed me on in the hospital. I was also set up for an EEG and a MRI. We found out I had a Traumatic Brain Injury (TBI) from being kicked in the head by a horse 3 months earlier.
Slide forward ten years, no diagnosis. I had, had 7 major surgeries by the time I was 29, all of them were orthopedic. By this time I thought I was in horrible pain because of the surgeries and rodeo injuries, I didn’t know why I was always tired, I would fall asleep at a traffic light if it was red. Rodeo and all sports come to a screeching stop. I couldn’t continue any activities and only had the strength and energy to work my 8 hour shift as Licensed Psychologist.
I had been diagnosed with Fibromyalgia, Factor 5, TBI (seizures), Asthma, and migraines, along with 4 miscarriages. I was told the reason I had so much inflammation was because of the surgeries and me being allergic to all NSAID’s and anti-inflammatory medications. At 31, after the 4th miscarriage and a 6 day long migraine I was finally diagnosed with Lupus. I went to get a physical by a new PCP and I was exhausted, my legs were heavy, and I had a “butterfly rash”. The doctor asked how I was feeling and
I lifted my head slowly and said, “horrible!” The doctors first question was, “Mrs. Hogan, do you have Lupus?” I told her that I didn’t and that I’d been tested. I gave her the whole run down. She did my physical but also did a ton of blood work. I received a phone call 2 days later asking if I could come back in. The doctor was short and to the point, I did have Lupus, also known as, SLE and she wanted me to see a new rheumatologist. I cried, I finally felt like I had answers and wasn’t just imagining all of these symptoms. My new Rheumatologist was amazing, a true gift from God. She told me I was blessed to be alive. After being diagnosed I talked to my mom who was currently being tested for Lupus! A month later, to the day, she was diagnosed with Lupus too!
Lupus wasn’t the only chronic illness I was fighting but it stole so much from me. It also taught me a lot of lessons and the importance of advocating for yourself when it comes to your health and medical care!
Where am I now? I’m currently 41 years old. I’m a licensed and ordained minister as well as a published author. I do not take any medication for Lupus because all of them, OUS except Lyrica, caused me to have seizures. I’m on a strict diet that helps with inflammation. My kidneys and liver are very closely watched. I see my rheumatologist every 3 months. I have been
diagnosed with type 2 diabetes, sleep apnea, and A.S. since my Lupus diagnosis. Life is tough! I spend most of my time using walking aids or a wheelchair, but I’m still moving, still participating in life. I’ve got Lupus, but Lupus is not in control, I’ve got the reins in my hands!
My Lupus Journey