By: Oncology Patient Care Senior Lead Tanette Welsh
October is Lupus Awareness Month. Research shows that two-thirds of the public knows little or nothing about lupus. In an effort to change that, I would like to share my story about being diagnosed and living with lupus.
When I look back, it’s ironic that I ended up working at Amber Pharmacy. I take care of patients with chronic conditions and I have a chronic condition myself. I was diagnosed with lupus last year. Lupus isn’t a condition you can see just by looking at me but every choice I make throughout the day affects me. These choices may be simple, like cooking dinner or vacuuming, but they all have an impact on how I feel.
I was officially diagnosed with Systemic Lupus Erythematosus last year but my health journey began many years before that. When I was in college I remember having “allergies” year-round. I would regularly be diagnosed with bronchitis and pneumonia and it would take me months to feel healthy again.
I always felt exhausted. If I went out with friends on a Friday night, I would be in bed the rest of the weekend recovering. My whole body would ache and I never could get enough sleep. I thought this was just my way of life.
In 2008, I was working for an endocrinologist who suggested I get some lab work done. I was having another flare with my allergies and I had bronchitis. My biggest complaint was a horrible cough. I would develop a cough that would hang on for months whenever I was sick. The patients I worked with were afraid to be in the room with me. In public, people avoided me like I had the plague. My family was embarrassed to go out with me.
After doing some tests, my doctor told me the results weren’t exactly clear. I was told there was something going on and it could be rheumatoid arthritis or lupus. I was nervous about doing additional tests because my aunt had lupus when I was a child and she was very ill. I told myself I couldn’t possibly have anything like that. I decided to tough it out.
Five years later, I was on a family fishing vacation in Minnesota and after being on the boat all day, I felt terrible. I went to take a nap before dinner and didn’t wake up until noon the next day. I felt like I had been hit by a truck. I had a horrible rash on my neck, chest and thighs. I was still in denial. I brushed it off as too much time in the sun and not enough water.
I didn’t say anything to my family and friends about how I was feeling. I was afraid that if there was something truly wrong with me, people would treat me differently.
Last year, my usual allergies and cough came back like clockwork. I couldn’t stay home because I had patients that I cared about and a team to lead. I continued to push myself harder. I wasn’t sleeping and I was afraid to go to meetings at work because inevitably a coughing fit would come on that would disrupt the entire meeting. Finally, a few of my peers had what I call a “life meeting” with me and I decided it was time to figure things out.
After a month of tests with several different doctors, I was diagnosed with lupus. Lupus is a long-term autoimmune disease that can affect several parts of the body, including the skin, joints and organs.
Thinking back, I wish I hadn’t waited so long to seek a diagnosis and treatment. I’ve been on medication for a year now, with the occasional steroid shot when I start to feel sick. I’ve learned to listen to my body – since it knows best. If I feel tired or am starting to feel sick, I rest. I don’t push my limits anymore.
There are times when my painful joints and fatigue make me want to just stay in bed. But it’s the patients I serve at Amber Pharmacy that motivate me to keep going. I take care of myself so I can go to work. Having lupus has given me a better understanding of what our patients are going through. I know that empathizing and truly caring for our patients makes a real difference in their lives.
I hope my story inspires you to take a moment to listen to your body and the messages it is sending you. I suffered for many years because I was stubborn and afraid. There is a reason why your joints hurt, why you are tired or why you are ill. Don’t be afraid to go to the doctor and share your concerns.
Lupus affects 1.5 million Americans. Learn more about lupus and its risk factors from the Lupus Foundation of America.
Meet the Author
Tanette has a background in medical research and has worked at Amber Pharmacy for six years. Her favorite part of her job is finding financial assistance for patients so they don’t have to worry about the high cost of medications. In her spare time, she enjoys fishing, camping, gardening and playing with her two Great Danes.