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Before we go any, further let us ask ourselves the question "what is epilepsy?" Epilepsy is caused by sudden, brief changes in a person's brain activity. When brain cells fail to function properly due to epilepsy, a person's awareness and movements may be altered, perhaps dramatically, for a short period. These sudden physical changes in brain activity are called epileptic seizures.
A person's brain cells usually transmit information to the rest of the body by way of orderly electrochemical signals. These signals are not transmitted randomly; they do not course pell-mell through our nervous system. They are transmitted selectively, as some messages are inhibited and others allowed continuing. This selectively prevents "cross talk" or message overload in the body's communication system.
Occasionally, however, a group of brain cells simultaneously "fires" or discharges a large number of electrical signals that produce a temporary rise in activity in certain parts of the brain, thus disrupting a person's internal communication system. This is a seizure. A seizure disturbs a person's consciousness, much in the way a lighting storm can disturb the electrical power supply." Each time I have a daytime seizure, I would feel like I put my hand in a socket and was being electrocuted. The electrical feeling would begin in my feet and travel up my leg through my body. Once the electrical feeling reached my head that would be the moment where I would lose consciousness. The worst part of my seizure has to feel this electrical current travel through out my entire body. So try closing your eyes for a moment and visualize a lighting storm and how it affects an electrical power supply. This is very much what is happening inside a person's head when he or she is having a seizure. This disruptive overload of brain activity causes the strange body movements, unusual changes in speech, blank stare, and twitching of the eyes (clonic attack extremities) which are symptomatic of seizures.
Epilepsy should not remove you from the joys of life. People with epilepsy can work, care for children, go out with friends, play sports, and have meaningful relationships.
Since childhood, I have dreamed of having a family and becoming a mother. I was determined to make sure that my disorder would not interfere with my goals and dreams. When I was young, others told me that there was a possibility that I might not be able to have children.
Despite what others said, I knew deep down that when the time was right and I found the man I wanted to spend the rest of my life with, I could focus on having a child.
I got married in 1997, and in 1998, my husband and I discussed the possibility of having a child. Both of us were nervous because I had epilepsy. Something inside told me that it was going to be all right. Therefore, we decided to have a child and leave it in God’s hands. I truly believe all things happen for a reason.
I knew that nothing worthwhile comes easily. Both of us were willing to sacrifice our lives and ourselves for this child. We were willing to put all our effort and love into this baby. We knew the time was right.
In the past, women with epilepsy were discouraged from having children, and sometimes women were sterilized against their will to prevent pregnancy. Over the years, the public’s view of epilepsy has grown, and the medical community has developed useful information and tests to help women with epilepsy women who want to become pregnant.
When I told my neurologist that I wanted to have a baby, he was optimistic. He started me on folic acid a couple of weeks before I got pregnant. While I was pregnant, I was very careful. I went to every appointment with my neurologist and OB-GYN. I made sure I had my monthly blood tests. I had my EEGs and sonograms. Most importantly, I reported all my seizures to my neurologist, so he was able to adjust my medicine accordingly.
I was scared. I was not sure if the medicine I was taking or my seizures would cause birth defects. I was afraid the baby would be born with Down syndrome. Many issues crossed my mind, but I was determined to have a family of my own.
When I looked up the percentage of birth defects in babies whose mothers have epilepsy compared to those who do not, I found there was not much difference. I had an excellent pregnancy with no complications. My seizures actually got better during my pregnancy. I had fewer seizures compared to when I was not pregnant.
In 1998, I gave birth to a healthy baby boy, Michael Andrew Chillemi. In the year 2000, I gave birth to my daughter, Alexis Athena, and in 2003, I gave birth to my son Anthony Giovanni. All my pregnancies were easy and I had no complications, no nausea, and the number of seizures I was experiencing monthly decreased during the nine months I was pregnant. All three children were healthy, and the medicine I was taking to control the seizures did not affect them.
In short, there is very little in life that having epilepsy should prevent you from doing. The vast majority of women with epilepsy have uncomplicated pregnancies with normal deliveries and healthy children.
Spiritually, I learned what my wants and what my needs are. I have also learned that I cannot let having epilepsy control my life. Yes, I have epilepsy, but life goes on! I am proud of whom I am, and I am determined to live a normal life. You cannot compare your life to someone else’s. If you do that, you are going to be unhappy. You need to love yourself and be satisfied with the life you lead, and if you are not satisfied, then change it! You need to realize also that there are plenty of people who take medicine who do not drive for many reasons. You should not feel ashamed or feel different from others.
We all have a special beauty within us. No one is perfect or has a flawless life. So do not be ashamed that you have epilepsy. Someone I met awhile back taught me that there is nothing wrong with having epilepsy.
It is very easy to feel sorry for yourself until you realize that some people may have it a lot worse. Knowing that there are many other people with epilepsy in this world also helps to make me feel better. We may have different seizures, but our feelings about living with epilepsy are all very similar.
I truly believe that all things happen for a reason. I believe that our lives are planned for us ahead of time. Having epilepsy has taught me to appreciate life and appreciate what God has given me. It has helped me develop confidence in myself and to love myself for who I am and what I have become.
I am committed to helping individuals with seizure disorders and developmental disabilities. I am aware of the challenges and triumphs of helping individuals and their families who have disorders or disabilities. Still, I am determined to conquer any obstacles that get in my way, so individuals who have a disorder can live a healthy, happy, and productive life.
The trick is to learn how to deal with the hopelessness that you are experiencing. I strongly believe the first step is to fully accept that you are epileptic. I taught myself to accept that fact and I have learned how to live with the disorder in the most positive way possible. In this book, I talk about how I taught myself to accept me for who I am.
Another important factor is to understand that you are not battling this disorder by yourself. You need to realize that other individuals can relate to you and can empathize with the pain that you are feeling. We all need to be reassured at one point that there are people who understand where we are coming from. These people are willing to reach out and give you their support. You need to recognize that these people are not going to give you their help unless you ask for it.
It is important that you learn how to live with epilepsy and endure it. Otherwise, you could end up destroying yourself your relationships with people, your friendships, and your family in the end. Everything you do and say affects the people around you.
Eventually if we do not learn how to deal with all these issues, we could end up really destroying ourselves emotionally, physically and spiritually. This does not have to happen if you do not let it. One way to prevent this from happening is to develop a lifestyle that is suitable for your own needs. You need to make sure that it is a lifestyle that is going to make you happy over time. You need to be your own designer, creating pathways to a fulfilling future.
My seizures have been well controlled through medicine, exercise and healthy eating habits. I refuse to let epilepsy stop me from getting to the destination I plan on going. Below are letters were written to me by people all over the country.
These individuals wrote these letters to share personal experiences that helped them become stronger and a better person. They also wanted to show others that they are not alone.
Personal stories from people who have epilepsy or any disease or disorder can provide the best understanding of the impact of living with an ongoing illness. These stories can provide perspective and hope to other people dealing with illnesses and can help educate the public about the human impact of the disease.
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