How porphyria tried to steal my purpose in life
Despite the immense hardships, I am a blessed porphyria warrior
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In July 2015, I decided to take on a second job to earn some extra income. After applying and being hired on the spot, I went to the job site to discuss my schedule with the supervisor, Daniel. Although I had never met or spoken to him before, I felt an inexplicable urge to catch his attention. From the moment I first saw him, I knew I was going to marry this man. Within a few months, we began dating.
In April 2017, Daniel was injured while helping his brother. This incident triggered several previous injuries to flare up, ultimately leaving Daniel unable to work. I stepped in as his caregiver while still trying to support us financially. Unfortunately, I was unable to work for several years, but our families provided us with food and a place to stay. In return, I maintained my dad’s yard, kept the house clean, and cooked regularly. By 2020, I decided it was time to return to work.
From January to March 2020, I worked in the IT department for the Census Bureau. In July 2020, I began working as an in-home caregiver, a role I held for almost a year. My career as a caregiver ended in April 2021, when I became unable to work due to a rare blood disorder, acute intermittent porphyria (AIP).
A life that became unrecognizable
Instead of the hardworking, independent person I once was, I became frail and gravely ill. I frequently had to call out of work due to severe nausea, vomiting, and upper abdominal pain that left me doubled over in tears, desperately praying for relief. Eventually, the pain would ease for a few hours, only to return with a vengeance.
By April 2021, I had been hospitalized a few times and was enduring full-blown AIP attacks daily for nine months. As of today, I’ve been hospitalized more than 25 times. With each attack, my body grew weaker and my symptoms intensified to the point where I experienced pseudoseizures (now often known as psychogenic nonepileptic seizures), memory loss, and even temporary paralysis lasting over three hours. On several occasions, I forgot my name, birthday, the home I grew up in, and even how to put on pants.
On what turned out to be my last day of work, I had a pseudoseizure while with a client, requiring an ambulance to be called. Not only was this distressing for my client to witness, but it also put them in danger, as I was there to care for someone who was unable to care for themselves, let alone another person.
Although a neurologist recommended in January 2021 that I file for disability — given that AIP is a chronic, lifelong disorder that may never improve — I chose to keep working until I was physically unable to continue and was no longer medically cleared for work. Fortunately, I soon began receiving benefits, as my frequent, unbearable attacks made me an unreliable employee. When I couldn’t make a shift, my client was sometimes left without a caregiver for the day.
Although I was able to contribute partially to our bills and financial needs, we still struggled to make ends meet. Daniel had been unable to do yard work or any chores around the house for over four years, and I soon reached the same point. Our once well-maintained home became unrecognizable — the yard was overgrown, dishes overflowed in the sink, dirty clothes piled up, and neither of us had the strength to manage tasks that used to be simple. When I finally caught a break and started to feel better, it took days to restore our small motor home to a condition that barely met my own high standards.
Transitioning from being a healthy, dependable person to someone who can barely get out of bed to eat a pack of crackers due to fatigue, pain, and nausea has taken a toll on my mental health. It has required a significant amount of faith to accept that, although I can’t do everything I once could, I still have a purpose. That being said, I am a blessed porphyria warrior!
Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.
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