Our Health, Our Voice Matters!

I am nurse practitioner with over 20 years of experience in healthcare. Throughout my nursing career, I continued to strive to advocate for my patients and their families and to provide them with exceptional care. Although advocacy is within the Scope of Practice of Nursing but due to high work demands, limited resources, and high patient acuity levels, nurses are often unable to advocate for their patients as our hearts desire to do so.

In 2017, I was diagnosed with a rare neurological disorder, known as Neuromyelitis Optica Spectrum Disorder (NMOSD). I suddenly became paraplegic and lost vision in both of my eyes in a matter of days. It was then that I quickly realized what it was like to be a patient on the other end of the spectrum. I was at the complete mercy of multiple medical providers at various fast-paced hospitals and rehabilitation centers. My years of knowledge as a provider was of some use but it didn’t take the place of feeling alone, vulnerable, and quite often as if my voice concerning my health and well-being was of no value. 

It was overwhelming and scary! I was fortunate to have access to healthcare and services but the rapid pace and day-to-day changes with my health condition and receiving care from different healthcare providers, resulted in me feeling helpless and lost! Yes, here I am, a healthcare provider with years of experience, found it extremely difficult to bridge the gaps concerning my own care. 

I couldn’t prevent the mistakes concerning my medications when I was moved from one healthcare facility or unit to another, the gaps in my care concerning the details of my treatment plan and needs that sometimes didn’t cross over, and sometimes the lack of empathy among some health care providers who just simply couldn’t understand the extent of my suffering and pain. 

I remember on more than one occasion when I refused certain medications or treatments because they actually caused me more pain, or worsened my condition and how I was quickly labeled as the “non-compliant patient.” There came a time during my journey when I couldn’t advocate for myself. I was deathly ill!  I needed someone to be that voice for me! I needed someone to advocate for me! My family was overwhelmed with the sudden changes in health and illness and they simply couldn’t be that voice. I found that they too needed someone to advocate for them.

My life has forever changed as a result of having a chronic disease, and my health and well-being greatly depends upon ongoing treatment and receiving care from good healthcare providers. I’ve gotten used to my “new normal” (disability) with the daily struggles of having chronic pain, fatigue, and bladder issues, just to name a few. But, due to God’s grace and mercy and after several months of intense, difficult treatments, rehabilitation, and strong support from my spouse, family, and friends, I regained my ability to walk, see, and work on a per-diem basis. 

I am a faithful Christian so when God put in my heart to find a way to help others on a deeper level, I became even more passionate about advocating for the health and well-being of others. It is now my mission to advocate for others and to empower them with the tools and resources necessary to ensure they receive quality healthcare; that their voices are heard and their needs are met!