Tamera L Nielsen
The days of blindly trusting our doctors are over. It's not because our doctors don't care - although that may be true for some - it is largely due to the bureaucratic hoops they must jump through to stay afloat.
Whatever the reason, patient advocacy - having an empathetic, educated advisor by your side - can mean the difference between regaining your good health status or withering - or worse.
Be it chronic disease, cancer, or other life-altering illnesses, you can create more joy and find healthier ways to manage your health issues so they don't manage you. Your family and friends can be objective and resourceful, but only to a certain point. It's natural for our loved ones to impart their own views instead of providing resourceful, objective options for you to consider.
Looking back on my battle with uncontrolled, undiagnosed seizures, I would have given anything to regain control of my body. As it turned out, I lost everything trying to salvage my good health.
For seven years, I endured countless medical tests and invasive, painful procedures to diagnose my seizure disorder. Pros at some of the top teaching hospitals in the country along with numerous medical professionals and facilities could not come to a conclusive diagnosis or treatment.
Averaging fifteen seizures a month - most gut-wrenchingly painful - others simply debilitating, I found myself trapped in a maze of medical mismanagement and mind-blowing drugs.
Seizure medication alters the central nervous system and brain chemistry so severely it can render a person listless - even speechless.
It did me.
Not only had I been controlled by the medical professionals 'treating' me, but a pharmacist inadvertently dispensed twice as much medication as I was prescribed.
I sat amidst nearly 50 people at a Halloween party literally immobile from an erroneous overdose of Lamictal. I recall wondering - at that party - if this was how a comatose patient felt: aware, but unable to express. I wondered if this was how my life would play out - in my thirties: A high-energy step-mom, career-driven bread winner, gym-rat-turned-paralyzed dolt.
Not a pretty picture and an awful feeling.
At least - I reasoned - that I wasn't passed out and convulsing on the floor of a ceramic-tiled shower stall, on a busy street, or in an airport - as I had before.
Some family members even chose to distance themselves from me saying it was "too scary" to be around me.
Time and again I begged my doctors to get me "off" the medications that were making me more ill and incapacitated, but they refused. They 'advised' me that I'd have more - or more severe - seizures if I went off of drugs. So, they increased the dosages, added more medications atop the ever-growing arsenal.
At one point I was on 12 different mind-altering medications. It was insane. The only drug that worked, Topamax made my already-petite frame drop 20 pounds in less than a month. To say I was angry and afraid would be an understatement.
A hideous nightmare ensued. My life, my identity - as I knew it - vanished.
No work. No gym. No basketball or painting with my step-daughter. Joyfulness dwindled as my health continued to deteriorate along with my support system. There were days when I was thrilled if I could make it out of the house - in a wheelchair.
Fast-forwarding, I ditched all the drugs, bolted from the medical professionals, moved across the country, lost everything and everyone - including my step-daughters, husband, career, and sense of self-worth - and luckily fell into the healing hands of a tai-chi yoga practitioner who taught me to control my seizures.
Choosing an alternative route such as this was a desperate choice of survival. Besides, I had nothing left to lose.
Anton Simper of Royal Oak, Michigan worked with me in three-hour increments once a week for nearly a year. I paid cash for the sessions - without an income or disability benefits.
By the end of that year, I was seizure-free and in control of my body and the bodily earthquakes, which had once ruled every aspect of my life.
Free to drive without fear.
Free to live, work, exercise, and play again without medical intervention was a liberating, empowering, and joyous victory - regardless of the enormous price I paid.
Anton recognized that I had a fairly unusual condition that could be monitored with specific poses and breathing techniques, which ultimately enabled me to control my seizures.
Through all of my medical visits, research, travels, and pleadings, I found only two doctors who agreed that Postural Orthostatic Intolerance (POTS) or Neurocardiogenic Syncope - of which I have been "markedly" diagnosed - can cause autonomic nervous system seizures. They, at the time, were unable render a successful treatment.
Luckily, Anton did.
I still have seizure auras (warnings that a seizure is about to occur), but the moment I feel them, I immediately pose and breathe as Anton showed me. I control the seizure activity; it no longer controls me. I rarely have episodes of convulsing. At this post, it's been 18 months since I endured a seizure.
I will close this entry with a reiteration of my previous statement: Patient advocacy is sometimes necessary to improve -or save - a person's health, well-being, lifestyle - and perhaps more.
Through resourceful research, tenacity, and compassionate objectivity, perhaps I could help you manage your health issue so it doesn't manage you - or worse.