Life with lupus presents an array of surprises and challenges, akin to an unscripted story that throws unexpected twists our way. Every day poses fresh questions as we navigate the unpredictability and obstacles that this condition brings. Where do we go? To whom do we run? Is there a way out of all these problems, we ask?
Today, I invite you to cozy up with a cup of cocoa or hot tea as you immerse yourself in an insightful interview I recently conducted. In this conversation, Ann, who received a lupus diagnosis, bravely shares the nuances of life with lupus.
Introducing Ann
I am a mom to a teenage daughter. I migrated from Kenya, Africa, searching for greener pastures and self-development. My daughter just graduated from high school this past summer.
We are planning to enroll her at the University of Texas Arlington.
I am a trained nurse by profession. I started as a wound nurse in Indiana. With time, I gained experience and evolved in management as a nurse case manager. I take pride in what I do daily.
Can you tell our readers about your life with lupus?
In 2012, I started experiencing minor signs and symptoms of pain and fatigue on and off, but nothing serious. This happened a couple of times without alarming consequences. Then, in 2013, one particular morning at work, I collapsed and fell in my office. This fall was concerning and warranted a series of tests, leading to my lupus diagnosis.
Explain to our readers what is lupus and some of the symptoms.
Lupus can be devastating for anyone who has it. It is an autoimmune disorder where 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.
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.
Responding to the Diagnosis
How did you respond to the diagnosis?
I felt angry, mad, sad, and in disbelief because I was conscious of my health and living a healthy lifestyle. I cared for myself by eating nutritious foods and exercising, and I kept up with my physical exams and immunizations. I thought I was doing everything right.
Have you had any hospitalizations or surgeries?
Oh my gosh, yes, I have. I have been in the hospital so often that I feel like I know the local ER nursing personnel 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.
The Impact of Lupus
Is there a cure for lupus? How has it affected your life?
There is no cure for lupus. The goal of treatment is to ease symptoms, which depend on which parts of the body are affected. Lupus has caused my brain ventricles to shrink, and I continue to experience pain and fatigue. There are days when it’s so hard that my daughter has to help with daily living activities. She started caring for me at a young age and has witnessed me at my worst, including times when I have been unresponsive. Paramedics have been called during critical moments while I was undergoing infusions or surgery.
At one point, my doctors gave me six months to live, advising me to consult with hospice. That news took a toll on me. I lost weight, but I had the will to live. I knew my health was fragile, but I refused to accept death as an option.
Moving Forward
So what did you do?
I never consulted hospice and continued following up with my doctors as usual. But, tell you what, Maggie, I am still here! I will know when my time comes, but until then, I have no fear. I am grateful because I continue to work and refuse to make excuses. Life never gives you 100%, and you have to do what you must do. I will keep living my life.
Do you have health coverage?
I am grateful to have health coverage that covers most of my costs. However, I still need to come up with $10,000 annually to meet my deductible, which is challenging with a complex illness. For instance, I had to forgo a very effective medication, Rifaximin, because my insurance wouldn’t cover it and it was unaffordable. Thankfully, my doctors prescribed an alternative. Currently, I take 27 pills nightly.
Sometimes, I must choose between paying for medications or bills. There have been times I’ve been late on payments because my health takes priority. As of this interview, my outstanding medical bills total $127,413.
Balancing Work and Health
Can you tell us how you balance work and multiple doctor visits?
I do it all. Even on my worst days, I push myself to go to work. I rarely call out because it’s a decision I make daily. I ensure I find time to complete my work amidst infusions, surgeries, and follow-up appointments. I understand that life happens, and it affects us all.
Who is your support system?
I am very blessed to have a robust support system from my family. My mom is visiting, and for that, I am thankful. My daughter has also been the primary helper with activities of daily living. She started at an early age and is pretty good. There was a time when I desperately needed medication and did not have the money; insurance does not cover this particular medication, Rifaximin. It was my uncle who sent me the money. In addition, my family would join my Facebook live sessions to monitor my progress and further educate themselves on the disease. So I do have a great support system.
What are you doing with your experience with lupus?
I started sharing my journey on YouTube a while back. My training as a nurse has helped me tremendously as I have a better understanding of the disease and can educate others. I hope to continue to empower others who are going through the same.
Conclusion
It is indeed true that life does happen, and it happens to all of us. We take pride in our faith in God, who is ever-present in times of need. These life challenges seek to baffle and throw us off balance,
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 was a blessing to you and you would like to offer support in any way, please feel free to reach Ann @ 707-843-1778.
Related: 5 Ways To Invest in Your Health in 2024
Until next time! Have an empowered day!
