Today, I had the pleasure of visiting Ann, who has been living with lupus. Honestly, I left her home feeling more encouraged than when I arrived.
Interview with Ann
Ann is a mom to a teenage daughter. I migrated from Kenya, Africa, in search of greener pastures and self-development. My daughter just graduated from high school this past summer.
We plan to enroll her at the University of Texas Arlington.
She is a trained nurse by profession. She started as a wound nurse in Indiana. Over time, gained experience and evolved in my management role as a nurse case manager. She takes pride in her work.
How it all started
In 2012, Ann started experiencing minor symptoms of pain and fatigue on and off, but nothing serious. This happened a couple of times without anything worrisome.
Then, in 2013, one particular morning at work, she collapsed and fell in her office. This was concerning and warranted a series of tests, leading to my lupus diagnosis.
In her own words, she explains that lupus is an autoimmune disorder in which the body’s immune system mistakenly attacks itself, producing excess antibodies in the bloodstream that confuse the system. This can result in painful joints, swelling or inflammation, muscle deterioration, and even organ failure. It can be devastating for anyone who has it
Some warning signs of an Autoimmune disease can include:
- Feeling tired
- Difficulty concentrating or focusing
- Hair loss
- Unexplained weight gain or loss
- Weakness, pain, or tremors in the muscles/joints.
When I asked her if she had ever been hospitalized, she chuckled and said Oh my gosh, yes, I have. I have been in the hospital so often that I feel like I know the ER nurses well. I have had surgeries, and the doctors anticipate I will need more in the future. The most recent surgery was just a few days before this interview to correct scarring on my neck caused by another type of lupus, which led to an overproduction of collagen that tightened my skin.
Is there a cure for lupus? Hoe has it affected your life
There is no cure for lupus. Treatment focuses on easing symptoms, which vary depending on which parts of the body are affected. Lupus has caused my brain ventricles to shrink, and I still deal with pain and fatigue. Some days are so tough that my daughter has to help me with daily tasks. She started caring for me when she was young and has seen me at my worst, even when I was unresponsive. Paramedics have been called during critical moments while I was getting infusions or having surgery.
At one point, my doctors told me I had six months to live and suggested I talk to hospice. That news was hard to take. I lost weight, but I was determined to keep living. I knew my health was fragile, but I refused to give up.
How did you move forward
I never went to hospice and kept seeing my doctors as usual. But you know what, Maggie? I’m still here! I’ll know when my time comes, but until then, I’m not afraid. I’m grateful I can keep working and don’t make excuses. Life isn’t perfect, but you have to do what you can. I’ll keep living my life.
I’m grateful to have health coverage that pays for most of my costs. Still, I have to come up with $10,000 each year to meet my deductible, which is tough with a complicated illness. For example, I had to skip a very effective medication, Rifaximin, because my insurance wouldn’t cover it and it was too expensive. Thankfully, my doctors found an alternative. Right now, I take 27 pills every night.
Sometimes, I have to choose between paying for my medications or other bills. There have been times I’ve paid bills late because my health comes first. As of this interview, I owe $127,413 in medical bills.
How do you balance work and appointments
I do it all. Even on my worst days, I push myself to go to work. I rarely call out; it’s a choice I make every day. I find time to finish my work, even with infusions, surgeries, and appointments. I know life happens to everyone.
I’m very lucky to have strong support from my family. My mom is visiting, and I’m grateful for that. My daughter has been my main helper with daily tasks since she was young, and she’s very good at it. Once, I needed a medication that insurance wouldn’t cover, and my uncle sent me the money. My family also joins my Facebook live sessions to check on my progress and learn more about the disease. I really do have a great support system.
What do you hope to do with your story?
I started sharing my journey on YouTube some time ago. My nursing background has helped me understand the disease better and teach others. I hope to keep empowering people who are going through the same thing.
Conclusion
It’s true that life happens to all of us, but we have someone who is ever-present in times of need.
Psalm 46:1-3 says, “God is our refuge and strength, a very present help in trouble.” Therefore, we will not fear, even though the earth be removed, and though the mountains be carried into the midst of the sea; Though its waters roar and be troubled, though the mountains shake with its swelling.
If this story touched you and you’d like to help in any way, please feel free to contact Ann at 707-843-1778.
Related: 5 Ways To Invest in Your Health in 2024
Until next time! Have an empowered day!
