Navigating Autoimmune Diseases: A Nurse's Personal and Professional Journey

Tags: autoimmune diseases disease health personal experience

Background

I graduated with a BSN from East Carolina University in 2008. My nursing career began on an orthopedic floor in Wilmington, NC, followed by two years as a travel nurse in various Med-Surg units. Subsequently, I worked in a nursing home as a Director of Nursing and provided diabetes education in an office setting. In 2016, I joined the Department of Health and Human Services in the clinical policy section for the Medicaid program, where I continue to work today.

My Personal Health Journey

In the fall of 2021, I decided to increase my physical activity by walking three miles daily. After two months, I experienced pain in my shins, feet, and toes, which I attributed to adjusting to the new exercise routine. However, the pain and swelling soon spread to my hands, wrists, elbows, shoulders, clavicle, knees, hips, and lower back. Despite my symptoms, I delayed seeking medical attention for a month until the pain became unbearable.

My PCP, a compassionate listener, referred me to a rheumatologist at Duke University in late 2021. After extensive testing, I was diagnosed with ankylosing spondylitis, a type of arthritis that affects the spine and sacroiliac joints. The disease also caused pain, stiffness, and gastrointestinal symptoms.

Treatment Journey

Initially, Prednisone was the only effective treatment, but long-term use led to severe side effects, including a fatty liver. We tried multiple treatments, including Humira and methotrexate, without success. Finally, Cosentyx (secukinumab) proved effective, allowing me to taper off Prednisone by early 2023.

Ongoing Health Challenges

In addition to ankylosing spondylitis, I was diagnosed with Hashimoto's disease, an autoimmune disorder affecting the thyroid, leading to hypothyroidism. This diagnosis came as a surprise, but I began taking levothyroxine to manage my thyroid levels.

In April 2024, routine lab tests revealed I was pre-diabetic, with high cholesterol, triglycerides, and liver enzymes. After adopting a healthier diet, I experienced severe symptoms, including tachycardia, diaphoresis, tachypnea, jaundice, and dark urine. I waited four days to call 911. My hemoglobin dropped to 4.5, necessitating a blood transfusion and hospitalization.

A new diagnosis of warm autoimmune hemolytic anemia was determined, managed with high-dose dexamethasone and IVIG. I was discharged on a prednisone taper and am currently monitoring my hemoglobin levels while considering alternative therapies if necessary.

Lessons Learned

Prioritizing Self-Care
My experience underscored the necessity for nurses and healthcare professionals to prioritize their own health. As caregivers, we often neglect our symptoms, assuming they are minor or will resolve on their own. This mindset can be dangerous, as it was in my case, leading to severe complications. By taking our health seriously and seeking timely medical advice, we can prevent escalation and manage conditions more effectively.
Listening to Your Body
It is crucial to be attuned to our bodies and recognize when something is amiss. Ignoring persistent symptoms and rationalizing them as part of the job or stress can delay diagnosis and treatment. My journey taught me to pay close attention to my body’s signals and act promptly when something feels wrong.
Advocating for Yourself
During my hospitalization, I realized the importance of self-advocacy. Despite being a healthcare professional, I had to insist on proper care and communicate my symptoms and history clearly to ensure appropriate treatment. This experience reinforced the need for nurses to advocate for themselves and their patients, ensuring that their concerns are heard and addressed.
Trusting Healthcare Providers
While it is essential to be informed and proactive about our health, it is equally important to trust the expertise of healthcare providers. My tendency to self-diagnose and second-guess medical advice initially hindered my treatment. Learning to trust my doctors and rely on their knowledge allowed for better collaboration and improved outcomes.
Exploring Career Flexibility
My journey also highlighted the importance of career flexibility for nurses. Health conditions may limit our ability to perform physically demanding roles, but the nursing field offers diverse opportunities beyond bedside care. My role with Medicaid, working on clinical policy and genetic testing projects, has been fulfilling and impactful. This experience taught me that nursing careers can adapt to our changing health needs and still provide a sense of purpose and contribution.
Embracing Support Systems
Having a supportive network of colleagues, friends, and family played a vital role in my journey. Their encouragement and understanding helped me navigate the challenges of my health conditions. Nurses must seek and embrace support systems, both personally and professionally, to maintain resilience and well-being.

Professional Insights

Despite my health challenges, I found fulfillment in my role with Medicaid, working remotely on clinical policy and genetic testing projects. This experience demonstrated that nursing careers extend beyond bedside care, offering diverse opportunities that accommodate various health conditions and lifestyles.

Conclusion

Nurses and healthcare professionals must take care of themselves and seek timely medical attention. There are numerous career paths beyond bedside nursing that can provide satisfaction and impact community health. I encourage fellow nurses to explore these opportunities and prioritize their well-being.

Contact Information

For any questions or further discussion, please feel free to contact me at [email protected].