My Life With Lupus
Ellen Keaton
Ashland Beacon
Lupus… I think everyone has heard the word but what do you know about it? Lupus is an autoimmune disease; there is no cure. Did you know on average, it takes 6 different doctors and a span of 4 years to diagnose? Four years of thinking you are crazy or lazy, with everyone thinking you are a hypochondriac when you say you don’t feel good because they can’t see anything wrong. There is no X-ray, CT scan, or blood test alone that can diagnose lupus. The symptoms can vary widely, making the diagnosis more difficult. Symptoms like chronic fatigue, joint and muscle pain, bowel issues, brain fog, hair loss, or skin disorders are the most typical. Many of the symptoms aren’t really seen and for that reason, these diseases are called “invisible illnesses.”
Truth is… Lupus is very difficult to explain to someone and even more difficult to live with…I know because I have lived with it for 20 years now. The simplest explanation is this…in a healthy person, the body’s immune system fights to protect us against harmful things such as bacteria, viruses, cancer cells, etc. When you have an autoimmune disorder, such as lupus, the immune system cannot tell the difference between healthy and harmful antigens causing a reaction that begins to destroy normal tissues.
My lupus story began almost 25 years ago. At the time I worked 40 hours/week, had 3 teens in various sports and was always running somewhere. I sang in a gospel group, and we would travel out of state two or three weekends a month to sing. I started to notice that I was more tired than normal, and it kept getting worse.
The doctor did blood work to be sure I wasn’t anemic, but all was fine. Soon after, I developed a lot of dental issues. I had always taken care of my teeth and didn’t really understand why suddenly I was getting cavities and losing teeth. I now know this can happen with lupus.
Then there were constant colds, sore throats and trips to the doctor. I joked one time that I could walk through a room and catch whatever anyone had. The most irritating thing was the rash on my face. It was painful, itched and made it next to impossible to wear any makeup because that just irritated it more. There were also the raw places on the inside of my lower lip that were more and more frequent. There was never any explanation for these things, and just when I thought it was over…BAM!...it would start all over again.
The doctor ran a number of tests over the years suspecting lupus or another autoimmune disorder, but nothing would really fit. The fatigue kept getting worse, and my hair was falling out. Finally, one morning I woke up with a really strange place in my mouth under my tongue. I saw my family doctor that afternoon and she referred me to an oral surgeon. After a few biopsies of the tissue in my lower lip, it was finally clear…I in fact had lupus! It was a relief to finally know I wasn’t crazy, but what did that really mean for me? I was referred to a rheumatologist to manage and treat the disease.
I quickly began to research exactly what to expect. According to information found on the Lupus Foundation of America, 90% of the people with lupus are women and the majority of those are non-Caucasian. Genes play a factor in a person’s susceptibility of having the disease but are not the only factor. 20% of those with lupus have another family member who also has the disease. Also, someone with lupus is likely to have a family member that has another autoimmune disease. In my case, my father had rheumatoid arthritis as well as cousins with Crohn’s disease. Many times there are secondary diseases with lupus, and after further testing, I have Hashimoto’s Thyroid Disease along with Sjogren’s Syndrome.
At one time, someone with a lupus diagnosis and organ involvement had a shortened life expectancy of about 10 years from diagnosis. With proper treatment and management, we now have a normal life expectancy. A combination of daily drugs and a weekly injection have my lupus under control most of the time. However, it is a “sneaky” disease. There are times it lies in remission for months, and then out of nowhere it strikes hard and fast in what they call a “flare.”
It's during these times that fatigue and joint pain can be almost unbearable. Thankfully a round of steroids will usually bring this back to remission. The fatigue is probably the most debilitating part of all of this. I’m not talking a normal tired…I’m talking a tired and inability to focus so much it is really hard to function. I have tried to go shopping during these times only to turn around and go back home because I am too tired to go inside.
I don’t really talk about my disease…this is the first time I have publicly talked about my diagnosis all those years ago. I still live a very active life. I am president of the Boyd County Fair, youth music program and VBS at church, go to grandkids’ ballgames and other community events. Yes, there are many days if I did what I felt like, I would not get out of bed or leave the house. I decided many years ago that I may have Lupus but it doesn’t have me. I refuse to change my life or give in to this crazy, misunderstood illness. Life is too short for that. I will fight it with every breath I have and continue to live my life to the fullest.
If you have any of the symptoms of Lupus, keep pressing your doctor for answers. Early detection and treatment is the key to a normal life. Lupus.org has many articles and information on the disease. There are also a number of support groups on Facebook for those living with Lupus.