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Footsteps: Journey from Victim to Victorious!
Story of Terrific Tonya L Heathco
Author: Tonya L Heathco
Life is an amazing journey. In 1985, my amazing journey took a turn. Footsteps:
Journey from Victim to Victorious!
reveals the footsteps taken during this amazing
journey while sharing with readers my journey of making peace with a rare seizure
disorder. Footsteps: Journey from Victim to Victorious!
is written to inspire,
motivate, and educate. Find a comfortable chair in a quiet environment, bring
something satisfying to drink, and enjoy every word as you read:
Journey from Victim to Victorious!
Was this in God’s Plan?
Late 1985 after the birth of my first child I traveled cross country from Tennessee to California to visit relatives. While visiting my emotions ran high and positive, yet something did not feel quite right. I had moments of deep sadness for no reason. Feeling the need to control these moments, I decided to nap for the afternoon. Hours later I was suddenly awakened by strangers, a man and an older woman. Fearing for my life I jumped up to run away and hide. My body stayed frozen, screams came out of my mouth, I was scared,confused, and for some reason very sore. The strangers seems to want to comfort me. Unable to do so the ambulance was called and I was taken to the nearest emergency room. I learned later the strangers were my paternal grandmother and my father. They had witnessed my first Tonic Clonic/Gran Mal seizure. Doctors had no clue how to treat me or what test to perform so the determined I was stressed and constipated, sending me home with Valium and a large quantity of fiber. No one had a clue as to what had happened so we agreed it best to let the subject go and never speak of it again. Was this in God’s Plan for me?
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Months later I had married, stress entered my life,and seizures came back. These were different happening in clusters some that were noticeable at 15 a day. After my third trip to the local emergency room I was connected with a neurologist. After what I thought was extensive testing, EEG, EKG, Blood test, etc. The neurologist diagnosed me with Tuberous Sclerosis and sent me home on Dilantin with Valium to break up seizure clusters. No information, no support. At a 6 month check up it was determined that the seizures worsened and Dilantin was not working. I was “topped out” on Dilantin Was this in Gods Plan for me? I discussed the desire I had to have children and was given the option to change from Dilantin to Keppra . With no support, I made the switch on the hope that seizures would subside. Through the two pregnancies to follow my seizures worsened. Fearful of what effect the AED’s and seizures would have on each unborn child, I fought for answers. No one listened. It was a classic case of “take these pills and you’ll be fine”. Left at the end of my rope (or so I thought) I went about daily life. I began to consider the fact seizures were not an every day occurrence so maybe they would fade away instantly just as they appeared. I was beginning to see seizures were in God’s plan for me and I became angry. Anger created in me a lack of care for myself. Seizures had become more frequent yet different in nature. By this time I was experiencing Tonic -Clonic, simple partial, complex partial,sensory seizures, and auras on a daily basis. I was not about to give up my freedom and independence to such a mysterious illness. No one educated me on epilepsy so it must not have been too serious. I continued on, raising a family and, yes, driving while seizure sensitive. Reality changed for me during one summer afternoon. Six children in the mini-van and I was driving. I felt safe because I had driven before while seizing and all was good. Never considering the fact that most seizures in my life were simple partials and happened under low stress situations, I decided to venture out into a different city with 6 children ( high stress). During the drive, I experienced a Tonic Clonic/Gran Mal seizure. I remember watching myself park the van at the side of the road, put it in park, and turn off the key. I could here the kids screaming my name, but could not answer. 15 minutes later I had no choice but to drive home. The drive home was the most frightening trip I had ever taken. That day was the end of my driving, the end of independence, and the beginning of my new life. I had accepted this “seizure thing” was bigger than I and I bowed to the power knowing only God could heal me.
Diagnosis - WHAT??
Soon after while at yet another check up with my neurologist, she revealed I had a rare brain abnormality causing the seizures. Relieved to finally know something I listened carefully. “Tuberous Sclerosis” was the diagnosis. WHAT?? My mind screamed. My diagnosis changed from stress and constipation to these foreign words - Tuberous
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Sclerosis. All I could relate these word to was Multiple Sclerosis. Was I really to become physically and neurologically disabled? Now even more fear set in. Was I dying? Would there be surgery? No answers came from within or from the medical community. She showed me test results yet never really helped me understand what was happening in my brain and nervous system. On my own I took action. I studied all information I could get my eyes on. One bit of advice gave me a life expectancy of 10-15 years. As I made ready in my heart to say good by to my children, friends, and family, seizures worsened. During my quest for answers, I attended a local church prayer meeting. I remember the ministers strong hands and the vision I had that night in a dream: I was on an operating table, my brain exposed. I could see an aneurysm. Suddenly the hand of God reached in with fire and healed the swollen spot. Immediately I went back to my doctor demanding tests. I believed I was healed or maybe I just had a burning desire to be healed. Either way, I wanted to see test results. Tests confirmed months prior I did have an aneurysm and weeks after the aneurysm was healed. This would not be the end of my seizure journey. My doctor suggested I visit Vanderbilt Hospital in Nashville TN for testing. I was quickly admitted and greeted warmly by the head of Epileptology, Dr . Bassell Abou-Khalil. Tests were done and I was given yet another diagnosis. This one made sense although it was bittersweet. X-Linked Familial Bi-Lateral Periventricular Nodular Heterotopia. Again, my head screamed. WHAT?? Interesting though, I had a sense of peace with the diagnosis. Dr Khalil assured me I would still be able to enjoy a long life. He showed me tests and pinpointed exactly what he saw. 16 small tumors ( non-cancerous tubers) thorough out my brain. He explained my diagnosis was a migratory neuronal brain abnormality, very rare and new to the medical field. He listened and answered all questions and put me in for more testing. Soon after, my daughter began experiencing seizures and through genetic testing was diagnosed with the same condition. She had her own journey to walk and in the beginning did not walk to face the journey altogether. Through unconditional love I was able to help her face her fears and find a glimmer of Hope for her future. At this time she was 15 and would face the fact of never learning to drive.
Together she and I were to walk this journey
We became involved with a handful of other patients in a global study on seizure medications to prove their safety for others. Lamictal came first. Already on the market,
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the FDA wanted proof Lamictal would benefit patients with other types of seizures similar to what we experienced. The study lasted about two years and was successful. Our seizures still unmanageable, we entered into another drug study under the guidance of Dr Khalil. Retigabine seemed to ease the frequency of my seizures. Testing showed my seizures were at 150 or more a month at the beginning of this study. Remember, this was with years of other AED’s still in my system. No time to waste I pressed forward to find peace. Now armed with knowledge of my diagnosis and experience of several types of seizures, it was time to concentrate on inner healing. I knew stress lowered my seizure threshold and found myself in a situation unable to avoid stress. Relationships all around were poisonous to my healing. I began looking for methods to reduce stress in a healthy manner. I created a daily world full of meditation, visualization, and positive thought. This worked short term and kept the seizures at bay long enough for my mind and body to become stronger. I knew through research of BPNH, the brain abnormality causing epilepsy, I had to make peace with the evidence seizures experienced would be unpredictable. Surrendering my ego to the power of my Creator and Master Healer was one of the most important decisions in my success to becoming victorious. While my body still experienced 5 different types of seizures unpredictably, I believed in the predictable power of my Creator and positive thought.
The Reason for My Life with BPNH
I believe all things happen for a reason and many times the reason is left a mystery because we don’t want to accept the issue. I was at a place in my inner healing that left me curious as to the reason for BPNH in my life. It was genetic yet I was the first in my family to have the diagnosis. I found the reason after much searching in my late 30’s. The reason was to help others struggling to find peace with epilepsy and other seizure disorders. I began my mission without structure by talking to only those that were already looking for support. I quickly found little was offered in the area of support that would help people like me find peace and hope. Most support groups online were full of patients wallowing in despair and major non-profits begging for even more money. I knew there had to be a way to meet the need in the world and I knew I was a catalyst in meeting the need. For years I would put all my energies into creating awareness and supporting others by speaking kind, positive, and uplifting words. Each year I was left heartbroken and ready to give up because I was seeing no results.
Find more “Share Your Story” Project stories @ http://nationalseizuredisordersfoundation.org4
Still, I knew I had work to do in myself. I became an active member in a group that would change my life and help me change the way I thought: Mentoring For Free and the 30 Day Mental Cleanse. This group had nothing to do with seizure disorders, however the focus being on inner growth benefited the goal for my own well being. I felt deep within the skills learned would be a part of something bigger in my life. Soon I would meet a life changer and be on my way to watching my true dream reveal itself to me and I reveal it to the world.
The Awakening of a Dream
I could feel with passing time a burning desire to live my dream. Over the years I had
learned how to hide my dream until I had forgotten exactly what it was. My search for
defining my dream came through an Internet connection on Face Book , TheFascinated at the boldness he had to label himself as Great, I knew I had
to get to know him even better. Soon he honored me with the title Terrific Tonya
and it stuck permanently. He also offered something innovative, creative and
inspiringhad become a new part of my life. Building up
strength I would listen to others share their dreams. Soon I knew it was my turn.
November 2010 seemed like perfect timing to tell the world of my dream. After all,
November is National Epilepsy Awareness Month. Little did I know this one simple
action of sharing my dream on video would spark the fire that to this day keeps my
passion alive. It was that same month that I knew to establish
Unsure where this journey was taking me, all I could do was say “yes” to every inspiration and move forward sharing my dream with all willing to listen. What is my dream, you inquire? To positively effect over 60 million patients, caregivers, and professionals in the seizure disorders community in a way so profound lives would be changes from the inside out. Now that the dream was spoken aloud and written down all
Find more “Share Your Story” Project stories @ http://nationalseizuredisordersfoundation.org5
that was left was to take action daily. Now was the time to begin building the foundation that would lead to the palace of my dreams, National Seizure Disorders Foundation, the worlds largest source of support, knowledge, inspiration, motivation, and tools for self improvement available for everyone in the seizure disorders community and even interested general public. The mission of NSDF:
“National Seizure Disorders Foundation brings order to seizure disorders by
transforming the lives of the seizure disorders affected until a cure is found”
I was quick to discover the meaning of true friendship through the building and telling of
my dream. I had already met Edward Elliott
and life had in store for me so much more.
Soon I would be contacted by David H Paul
, theoffering me
abundant love and support while my dream unfolded into reality. Many more would
come my way and soon become leaders in National Seizure Disorders Foundation:
Crystal Hinson and William Amis Jr III are at the top of the list. As time progresses and
more lives are touched, the list of leaders for the National Seizure Disorders Foundation
Could You Be a Leader?
After 26 years of searching for peace while living with seizure disorder, I have found that peace and am helping people across the globe reach a comfortable level of peace along their separate journey . If you or someone you know is living with seizures, please connect withand begin the journey toward peace and healing. There is hope for everyone. You are not alone. Now the rest is up to you. I look forward to meeting you, supporting you, and showing you what real unconditional love and acceptance are all about. Peace, Power, Love, and Joy -
Find more “Share Your Story” Project stories @ http://nationalseizuredisordersfoundation.org6
PETER DAVID EISENBERG, M.D., FACP PROFESSIONAL Address: 1350 South Eliseo Drive, Suite 200 Greenbrae, California 94904-2007 EDUCATION 1963-67 M.D., Hahnemann Medical College, Philadelphia, Pennsylvania Internship: Internal Medicine Jacksonville Hospitals Education Program University of Florida Residency: Internal Medicine, Graduate Medical Education Jacksonville Hospitals E
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