A little while back I shared an article about my first prolonged health crisis.
Throwback Thursday was a hard post to put together both emotionally and physically.
I traveled back to a sad place in life in order to write it. Still, retrospect done productively offers great incites unto increasing the gratitude possible in spite of overwhelming distractors within the chronic illness experience.
This weeks edition focuses on my gratitude for my nursing degree. While the end of my career was tragic, there were many victories and amazing lessons derived from my time as a Registered Nurse. Without these experiences, I could not advocate for myself, the patient as well as I do in present day.
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Not only am I a chronic patient, I am also a 4.0 Nursing Savant.
I graduated despite a prolonged hospitalization and life-threatening consequence. I was often on medical leave often throughout my career but when working I was always willing to go the extra mile for my patients over the 8 years of practice I managed to get under my belt before Ehlers-Danlos Syndrome caught up with me.
Nursing was difficult for me when it came to applying theory to practice.
While I could read through a text and rewrite it in layman’s terms the overstimulating environment and increased social interactions at clinical practicum exhausted me even more atop my EDS working insidiously in the background. I put studying and completing assignments before self-care or anything for that matter.
The thought of failing was horrifying. Entrenched in all that is the nursing process to an obsessive level, I passed through clinical and my courses with flying colors. It was a grand accomplishment in consideration of my wide range of challenges in life.
On the day of the outpatient surgery responsible for my first prolong hospital stay, I brought my laptop along for during waiting times to study for my upcoming finals. Even in the hospital with total parenteral nutrition and a foley catheter, I continued studying and taking finals. I knew if I didn’t graduate my life would be in limbo even longer so my drive exceeded these limitations surged forward at all costs. I graduated, as you can see from the photo above but when I went home that evening I hooked myself up to my TPN and wondered vaguely if all the struggle was worth it.
This theme repeats in my career and life: Working too hard to the point of burnout followed by all my physical maladies flaring in response.
Only in the last year and half of being disabled, am I actively reviewing these experiences to find the deeper meaning in it all. This life showed me early to question those in authority because all too often, the powers that be are boorish to the reality of experience. As a nurse, I witnessed too many instances in which authorities failed to uphold standards and decency in consideration to the human adventure. As a patient, I’ve felt the harsh sting of the stigma attached to my current state of disease.
My nursing experience makes me an unusual patient. I am well researched and versed in medical terminology. My intense understanding of the body as a whole along with the pathophysiological presentations of disease from a micro to macro level provides me a unique perspective. This understanding helps when explaining my history, symptoms, and responses to treatments to the numerous practitioners I encounter.
Over and over again on this journey are instances when I must stand up and say “Hey! That’s not right!” Be it for myself or those I served more often than not I face the disturbing reality that not all practitioners are altruistic or compassionate in their practice. Recognizing the difference between evidence-based application and placated therapy options keeps me ahead of the game with my doctors and my disease process.
On this Thankful Thursday, I can look back and see the divinely orchestrated my experience as a Registered Nurse was to help me along my journey now. My cap and stethoscope are retired but I’m able to employ those skills towards myself and my family as we all deal with varying types and severities of chronic disease and progressive disability. My understanding makes up for the lack of explanation provided by my physicians on my “rare” Ehlers-Danlos Syndrome diagnosis. (Read more about my journey to genetics here)
I apply technical knowledge attained from nursing to my writing as a forge a new career path from the ruins of my nursing career lost to underlying defects caused by EDS.
I am grateful for the opportunity to put my heart into my writing rather than the countless documentation notes for work that consumed so many hours of my time. When the chronic pain and fatigue mongers aren’t nipping too furiously at my reserves, I enjoy this passion and craft of creating something valuable to myself and others on similar journeys.
During the days struggling to achieve whatever Normal™ is I exhausted myself into many flares of illness. Now my condition is fully expressed and theoretically recognized, I feel granted the societal permission to rest instead of pushing beyond my fragile limits. My expertise in nursing theory, practice, and disease presentation affords me the benefit of being hip to many of the games encountered in Healthcare™. The asset of my education continues providing an extra layer of confidence when planning for appointments and advocating for my own best interest with those consulted on my care.
Yes, my nursing life was a haphazard one I do not miss; However, I value the lessons learned with sanctioned revere.
Alas, if I could go back the only thing I would change is the pace at which I drove myself and the lack of attention I placed upon the signs of disease. Deep down, I knew my problems were more than just depression, anxiety or any of my idiopathic diseases received early on in my journey. I choose to ignore my intuition because who was I to argue with the Almighty MD?
Nursing empowers me at each practitioner encounter to advocate for myself by planning for my appointments and being prepared to defend my position intelligently.
Sometimes this works and sometimes my spazzy Autonomic Nervous System won’t allow for any bit of intelligence to come from my mouth. On those days, I have my appointment agendas to speak for me. Nursing gave me the ability to organize a report of my own medical history and current issues in a way to get my physician’s attention, if not respect. Now, there are times when preparedness is misconstrued for anxiety driven behavior. While that could very well be true the fact remains that preparing reduces my anxiety far more than coming to an appointment unprepared. It worked for the patients I served as a case manager nurse, so to can it work for me.
During a conversation with my mother before this post was written, I shared with her my original sentiment on the challenging aspects of life, generally speaking.
When you set out an intention for greatness The Universe creates the most extreme of circumstances to create that reality.
We were discussing the latest events, specifically of my eldest’s first syncopal episode from what I’ve roughly diagnosed as POTS as all the signs are there. These past few years whirlwind in our lives as a family unit. When things were at the absolute worst, I willed intention for greatness into the universe. Even though my disability is unfortunate, it is nowhere near the end of my fortune. Each day, my intention becomes a little more of a
Each day, my intention holds a little more truth, building a reality existing in harmony with the process of my chronic disease.
The aim was for everything to work out in the very best possible way no matter what must happen to make it so. In nursing, I’d grown weary of the System™. I found myself longing to leave traditional practice for a career in entrepreneurship and freelance writing rather than continuing with the high stress, frequent burnout I experienced as a nurse. As fate would have it, the opportunity presented only after my body broke under the pressure of the profession.
As fate would have it, the opportunity presented only after my body broke under the pressure of the profession.
For this reason, some days are harder with bitter awareness validating my experience. Celebrating appreciation for the rise and fall of my nursing career due to an illness I was told was only in my head seems somewhat like a misnomer. But if only I allow this feeling to pass by non-judgementally, acknowledging whatever lesson implied I won’t drown myself in pursuit of the ideal.
Managing my discomforts and distress includes not sinking into the negative aspects of my experience longer than required.
Best not to dwell in the darkness so long I forget the light!
Balancing the good and the bad reframes the experience to something more palatable even on the days I want to spit the whole bite of this raw deal out. Without balance, the delicate homeostasis of the entire system reacts to reestablish consistency. Without my education and experience in nursing, I might not associate this vital consideration to living a quality life with chronic disease(s).
In closing on this week’s Thankful Thursdays, I must say while I regret choosing Nursing as a profession, I could never regret the experience nor lessons learned. As I manage my own care as I once managed the care of my patients I am in a unique position to demand regard from my physicians, especially when their knowledge is antiquated. While the career took its toll on me, the honor of serving some of the most wonderful humans I’ve ever known serves to authenticate my struggle. Being thankful doesn’t always mean I can’t feel gipped but keeping my head above that murky water feels so much better than sinking in the losses.
Thanks for joining me on my gratitude journey!
Join me next week for Thankful Thursdays Volume III: My Mother the Chronic Illness MVP to check out what gratitude is available for growing up as chronically ill kid with a chronically ill mom.