"The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant."Max de Pree
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195,000 Die Annually From Hospital Mistakes
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Once upon a time, I was a vibrant, youthful teenager...
My First Encounter
During my first pregnancy, I had contracted chicken pox from my young nephews and niece. Though it made for an irritable time in my initial trimester, I hadn't given it much aforethought. In the last part of my pregnancy, I noticed some weakness in my legs and arms, but naturally assumed it was part of the gestational effects.
It was after I gave birth, that I began having more frequent physical difficulties, but again, attributed these nuisances to normal post-partum effects. As time progressed, I began losing balance & coordination; and even dropped everyday household items such as glasses, keys, and other things as well. I had finally had enough when my rib cage began to feel broken and I couldn't stand the pain any longer. Over a decade later, and after numerous doctor visits, MRIs and multiple lab tests; I was finally diagnosed with Fibromyalgia.
What is Fibromyalgia? Fibromyalgia is a chronic pain illness that can cause musculoskeletal pain in various areas of the body, is characterized by fatigue, and is often associated with Restless Leg Syndrome, Migraine and rheumatism - to name a few. Additionally, attacks of fibromyalgia seem to spontaneously come and go.
At first, I was treated with multiple 'pain aids' that did help with the pain, but made me even more tired than I was before I took the medicines. Eventually, I went off the medications and focused on my work and simply 'ignored' the illness. I figured if I had to live with it, I might as well accept it.
What I Didn't Know
What I didn't realize was that Fibromyalgia can weaken a person so much that sometimes, individuals can be more quickly injured or more prone to other conditions than those without Fibromyalgia. That's when I experienced my first real encounter with its lethal effects. While at work, I wasn't doing anything too terribly physical. However, it was the day in and day out repititions of physical labor that not only added to my condition but wrecked further havoc on me as well - and left me susceptible to injury.
On the Job Injury
There I was, performing my normal work activities when, 'Ouch!' and 'Oh my God!' entered my mouth. The pain was excruciating. Numbing and impairing. With a simple maneuver, I was incapacitated. Pain and tingling numbness ran down my right side. It was unbearable. Not only that, I could barely make it to the office because I had to drag my right leg to get to where I needed to be.
When I got to the hospital, I was told that "...you sprained your back..." That was it. No MRIs, just a quick once-over to tell me that all my pain, my lack of feeling - according to workers compensation' doctors - was merely a 'sprained back.'
I knew I had fibromyalgia, but it had NEVER acted in this sense. Not because I was 'weak,' but because my right side had gone totally numb. It was frustrating to say the least. Nearly 9 months after my injury, and even working on light-duty while taking heavy pain killers, doctors FINALLY found that my right shoulder had been subluxated (dislocated) and scheduled me for surgery. After the surgery, I went through months of agonizing physical therapy to get my right arm back into its proper range of motion. But the numbness, the back pain and the lack of feeling in my legs still came and went without any signs of remorse.
Shocking Discovery
By the time I had went through my rehabilitation, my employer 'let me go' because I was obviously unable to work. I attempted to go back to work as an office manager for a wonderful & understanding employer, (I figured it was
light work.) and performed fairly well for a few months. Suddenly, I was in a hospital emergency room - this time, I came out in a wheelchair. Not only did MRI tests confirm I had a herniated disc at the C-3/4, but I also had a spinal lesion (myelopathy) at the C-1/2. Strange that workers compensation doctors coudn't find it, but numerous MRI tests this time, confirmed it.
After seeing a few, reputable Neurologists, I was additionally diagnosed with Transverse Myelitis (TM) and a 'bulging disc' (herniated disc). This explained why I had been encountering all these unrelated physical problems.
Giving Up
I guess when I first sat in my wheelchair, I instinctively gave in to my physical condition. Why bother living anymore, I thought. I couldn't function properly and felt like a complete invalid. How was I going to make my household payments? How was I going to care for my two, then elementary schoolers? How was I even going to live? While all these thoughts ran through my mind, I was becoming an emotional wreck.
Because of my health, I was taking so many medicines that I couldn't tell if I was coming or going. I would take one medicine for this, one for that, one to counteract the effects of another, and another to counteract the effects of a different one...and so on. And thanks to all of these wonderful conventional medicines, I returned to the hospital because one of them nearly killed me. It was then that I knew I had to find a different way.
Starting Over
Going against medical advisement, I literally stopped all of my prescribed medicines at once. I became acquainted with the International Disability Coalition and got into band, strengthening excercises and virtually re-taught myself how to walk - without the help of any medical professional. I also incorporated a 'mind-over-matter' attitude that I believe, enabled me to step out of the wheelchair and back into life.
It's been about 3 years now, and I still live daily with back, neck, shoulder and sciatic nerve pain. I sporadically suffer relapses where I can't walk, or I can't move my arms or hands. BUT, I am no longer a walking or wheelchair-bound zombie. I swim and practice water exercises when the weather is warm to build muscle strength. And there are still times when my pain gets the better of me and I still go through emotional ups and downs. And like most conditions, they flare up more often with cold weather, emotional and physical stress, and lack of rest. BUT I am alive today, I am a survivor, and though I may have fibromyalgia, Transverse Myelitis, migraine, disc herniation, and restless leg syndrome - these disorders do NOT have me.
In Closing
Living with my chronic disorders and illness has taught me to be more patient...more loving...more giving. I now share my home with not only my human family, but have adopted several rescue dogs - who I also compliment for adding so much love and compassion to my emotional wellbeing. And so long as there is a purpose on this earth for me to exist, I will attempt to make the most of it. Every hour. Every day.
Living with Chronic Illness & Disorders: Are You a Survivor?
Copyright 5/2005 - All Rights Reserved
by C. Bailey-Lloyd aka. LadyCamelot
About the Author
C. Bailey-Lloyd
aka. LadyCamelot
Public Relations' Director &
Staff Writer for Holistic Junction - Your Source for information on Massage Therapy Schools, Holistic Practitioners, Alternative Health, Insightful literature and more!
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