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My Daughter Has Lupus

My daughter’s journey with lupus began when she was a junior in high school. Little did we know that when she started getting sick, she actually had a life-changing disease. We also didn’t know that it would take 10 years to get a diagnosis. She has had to suffer for many years from lupus with almost no reprieve. Lupus is a nasty disease, that hasn’t only affected her life, but many others as well. Approximately 5 million people around the world suffer from lupus and 16,000 new cases are reported each year.1

Lupus symptoms came and went

We didn’t know it at the time, but my daughter’s journey with Lupus started when she was diagnosed with Mono. Six months later she was still exhausted. The doctor had no answer. She started losing big clumps of her hair and had many headaches. The symptoms would come and go but no one ever took the time to figure out why. When she was a freshman in college, she became so dizzy that she couldn’t get out of bed. Again, the doctor had no answer to give us. It started to become frustrating.

She was able to finish nursing school and even got her BSN without any huge issues. She was able to start her career as an RN, and even finished her bachelor’s degree. Five years later she started having new and more troubling symptoms. She was completely exhausted all the time. She hurt all over. Over the years they did blood work several times. And nothing ever showed up.

Lupus diagnosis after 8 years

Finally in 2012 after being hospitalized on and off work for a month. Her doctor decided to do more blood work. There was one test in particular that the doctor said would indicate autoimmune conditions like lupus. It was the antinuclear antibody (ANA) test. The test was always negative. As a mother, it was difficult knowing something was horribly wrong with my daughter, but the doctors’ couldn’t give any answers. Finally, 8 years ago we got the diagnosis of lupus.

We have since learned that mono and lupus are connected. Mono is caused by the Epstein-Barr Virus (EBV). It increases the risk of lupus and 6 other autoimmune diseases by changing how certain human genes are expressed. Mono is usually seen in teens and young adults. The symptoms can last 4 to 6 weeks.2

She could barely get out of bed

Four years ago when she was in her early 30s my daughter became so sick that she couldn’t work and had to apply for disability. She had horrible migraines. One migraine lasted 7 months straight. She could barely get out of bed and was throwing up constantly. I would take her to the ER and they would say well if she’s not better to bring her back tomorrow. I asked the doctor why would I bring her back tomorrow when you have not done anything to help her today?

We got her worked in with her neurologist the next day. I learned that day that I have to be her advocate because doctors don’t always listen. They did admit her to the hospital that day, but mama bear had to come out. It wasn’t pretty. She started having hemiplegic migraines. She would lose her ability to speak clearly, and one side of her body would go numb. I will always remember one day at work getting a phone call from the head of neurology. He informed me she has having a stroke and wanted to start clot busters. I was scared of driving to the hospital. What would I find when I got there? Thank God it was not a stroke.

Becoming an advocate for my daughter

When she quit working, she moved in with us because it was easier for me to help her. She lives in constant pain and frequently doesn’t sleep for days. There have been times that I’ve begged God to take lupus from her and give it to me. I would do it in a heartbeat. It’s hard to see your child suffer at any age. I thought having a diagnosis would make it easier. That was not true.

I encourage you to become an advocate for your loved one with lupus. There will be times when they will need someone to step in and help. There will be doctors who won’t listen and blow off their symptoms. That being said it It is important to find a doctor who will sit down and listen to you. If not, find another doctor. Your child or family member may not always want your help. But there will come a time when they will need it. Lupus is hard enough with a good advocate and a caring doctor. You don’t need one who won’t listen. Lupus is not a picnic, but remember there are millions of people in your shoes. You are part of millions of other caregivers and advocates out there. You aren’t alone and we much support each other.

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