Epilepsy

If you really knew me you would know my mom has epilepsy, and her having epilepsy has made me the person I am today.

My mom got epilepsy when she was five years old. She got very sick from a virus that traveled into her brain, and she had to be put into a coma to stop her brain from swelling, this leads to scar tissue damage on her brain and gave her epilepsy. The doctors at the hospital told my grandparents that she was supposed to have brain damage, and not be able to walk, even told them she may come out of the coma as a paraplegic. So, my mom woke up with none of that except epilepsy, she was considered extremely lucky.

Growing up with a mother with epilepsy was basically a normal childhood, with playing outside with friends, fighting with my brothers, and thinking second grade was “hard”. Although I had to be more mature and understand what was happening to my mom at a young age.

My older brother, Michael, and I had to take on responsibility and be there for her. We had to know what to do when my mom had a seizure and how to help her afterward. My dad usually works until later in the evening, so if she was to have a seizure during the day it is me or my two brothers home to help.

Seeing a seizure for the first time

The first time I remember seeing my mom have a seizure was when I was six years old. My dad went into the store to pick something up and my brothers, mom, and I was waiting in the car. I remember sitting in the car when Anthony starts asking my mom a question but she was not responding.

We all look at each other confused when my mom begins to convulse. My brothers and I are all two years apart so we all were very young at the time. My little brother Anthony wasn’t too scared because he had no understanding of what was really going on.

Watching my mom have seizures will never be something I got used to. It always and always will be a scary thing to see. Simply because I can’t do much to help in a minute or two she is having one. You’re not supposed to touch or try to move a person when they are in this state as it could harm them. The only thing you can do is make sure the person is safe from falling over or hurting themselves.

Advocating for a cure

When my brothers and I got a little older, my mom wanted to get more involved with the Epilepsy Foundation. We started going to yearly Epilepsy walks to raise money for the cause. My whole family would come and support my mom and it made the walks a lot of fun. Going on these walks and seeing all the people who are going through the same thing as my mom was really amazing to see.

My mom has even joined the board of the Epilepsy Foundation, helping with fundraisers, bringing awareness to the cause, and setting up the walks at Point Pleasant. Over this past weekend, she received an award from the Epilepsy foundation for her work with the organization.

Epilepsy strengthens you not weakens you

My mom having epilepsy made me into a very responsible person. I always look out for her and make sure she is feeling okay. I had to be there for her when she didn’t feel good or hurt herself. My mom has broken bones and even had a hematoma in her brain from her seizures. Now, my mom having epilepsy is something that drove her to become an incredibly strong person.

Epilepsy brings obstacles but there’s always a way to make a new path for yourself

My mom used to work at NBC in New York until she had a seizure and they had to fire her because of it. She got her license taken away for many years from epilepsy having to rely on others to go places or not go anywhere at all.

My mom had to grow up with a disorder that can be triggered at any time or happen anywhere, with no control over it. These are just some examples of the many challenges she faced. But throughout all her obstacles she never gave up and just kept pushing forward. My mom didn’t let her disorder hold her back or stop her from reaching her goals.

After being let go from NBC, she started writing books and since has written over sixteen published books which are even sold in stores.

One of the first books she wrote included me and my brother in it, it was the book that started her writing journey. It’s called “My Mommy Has Epilepsy,” She wrote this book to help parents with this disorder, who have younger kids understand it and know a little bit about it.

The part of the book I am in is the part where she tells a true story about an experience with having a seizure with us around. I was two years old and Michael was four, the story goes, we were all taking a walk outside with our dog around our development when my mom falls over and has a seizure.

At the time my mom’s epilepsy wasn’t as controlled as it is now so she did not have as much of a warning about when she was gonna go unconscious. Anyway, she falls over and ends up cracking her head open on the concrete and my dog Princess starts barking and her barking brought someone’s attention outside, which saved my mom’s life. They called the ambulance and she ended up being okay. This part wasn’t included in the book but I figured to tell the whole story.

Good things come with patience

Now, once she got her seizures controlled, she got her license back. She went fifteen years without having one. My mom showed me that you should always keep your head up, and always be positive when life gets you down. It’s the reason I have grown up to be such a positive person myself. My mom taught me you can’t dwell on the bad things in life, but only find a way to make them better.

Feeling guilty

With my mom having epilepsy there were many times I felt guilty. Guilty for not being there when she had a seizure because there have been many times this has happened when no one was home. Not being able to be there for her to make sure she is in a safe spot, and guilt for not being next to her when she woke up.

Being alone after a seizure must be a scary thing, not knowing what happened or if you were hurt, or not being able to remember the little details about your life for a short time. How someone feels after a seizure is scary too, one minute you feel fine but then the next your body is drained, and you feel completely out of it. There was one time I came home from being at a friend's house, no one else was home but me and my mom.

I walked into the kitchen and there was glass all over the floor. I immediately knew what happened, so this wasn’t something shocking. But I go upstairs to my mom’s room first to make sure she didn’t hurt herself badly, I ask her if she remembers anything or if her head hurts, or if she remembers where she woke up, to try to piece together how she fell over. My mom luckily wasn’t hurt besides some cuts, but she easily could’ve been badly injured.

Seeing the world with a different pair of eyes

Growing up around my mom having epilepsy made me see other people differently. I am a very understanding person about this. My mom having this disorder made me see you really don’t know what others are going through until you get to know them.

Everyone has different challenges they deal with in their everyday life. My mom taught me to always be nice to others. Seeing her have her days where she’s upset about her disorder, she's told me that it's been just random people who give her a compliment or say something nice to her that really change her day.

My mom is the reason I chose to go into speech pathology in college and pursue it as a career. Growing up caring for her when she got hurt, and helping her when I could inspire me to go down this path.

I realized I want to continue to help people when I got older. Being there for my mom my whole life made me become passionate about wanting to help people when I got older.

#Epilepsy  #Caretaker

When you go on Facebook and you look up the people with epilepsy you’ll find hundreds of people sharing pictures of the bruises or broken bones that they endured while having a seizure or they’ll share a paragraph or two telling others about the seizure the experienced and the physical pain they acquired from it.

My heart goes out to all of them because each time I read one of these messages on Facebook I can relate to them because at some time in the course of my life I experienced what they are experiencing now.

I’ve…

experienced concussions

acquired a hematoma on my head by falling headfirst on the ground

gotten broken bones

acquired many cuts and bruises

almost drowned in a bathtub

have cracked my head open

permanent memory loss from my concussions

experienced several near-death experiences

and the list can go on.

But I am not here to ask for sympathy or to have others recognize the extent of hardship that I endured, because honestly, everyone goes through tragedy and everyone experiences pain in their life.

My question to you is, “What is more painful the physical pain we endure or the emotional pain experienced from the tragic event that occurred?

What’s Worse The Physical Pain or Emotion Pain?

When I look back on the course of my life and I think of all the things I have gone through in life because of my epilepsy tears begin to fill my eyes. I have acknowledged that broken bones heal, hematomas eventually go away and the other physical pain caused by my seizures eventually healed too.

However, the emotional pain I have received in my life-long journey with epilepsy will never go away. I would be lying if I said it did. It’s embedded in my heart and will remain there for the rest of my life. So me personally, I truly believe that the emotional pain is much worse than the physical pain we endure from a seizure.

So How Do You Cope with The Emotional Pain Caused By Epilepsy

But what I do know just like with any painful event, the emotional pain will never leave us, so we must learn how to cope and move on. Just like when someone we love passes. The pain from that loss will never go away but we learn to cope with the loss and then we move on.

If you don’t move on then you’ll live the rest of your life in misery and depression and that’s no way to live.

Living with Epilepsy

Living with epilepsy, every day of your life is tough. For many who have a disability, they tend to hold their emotions inside. The emotions that develop tend to build up inside them until they are unable to deal with their emotions any longer. When you ignore your emotions and hold your emotions inside you set yourself up where you can easily fall into depression. This can happen when one focuses on the negative aspects of their disability and by pitying themselves.

Living with epilepsy can be difficult if you do not accept the disability into your life. When you accept epilepsy into your life, you must first realize that there is no such thing as a perfect person. We triumph each day of our life trying to master how to solve the daily troubles that come our way, and how to overcome the problems that have already occurred in our lives. You need to grasp the notion that no one on this earth is perfect and there is no need to feel a sense of embarrassment because you have epilepsy. If you look into any person’s closet, you will find plenty of secrets and imperfections. Overlooking your problems and not dealing with them is the easy way out, yet to face your epilepsy and the pain its caused is an accomplishment.

Accepting Our Epilepsy

Accepting our problems and dealing with them helps us grow mentally, physically and spiritually. One should not feel ashamed because they have a disability. When I opened up, telling people about my disability, I was shocked to find out how many people had some disability or knew someone who had epilepsy.

Education Is Key

People fear what they don’t know. Many individuals are uneducated about epilepsy and look at people who have epilepsy different. I believe God puts obstacles in our lives to strengthen us. When we are young, we have people in our lives that help to mold us. They help us develop the strength, wisdom, and knowledge we need to survive in this world. Yet if we become dependent on these people, we cannot survive and live the productive life that God has given us on this earth to enjoy. You must realize that everyone is on this earth here for a reason. We need to pass on what we have learned along to others.

I believe it is just selfish and pure laziness when we pity ourselves because we have epilepsy. You need to take your problems and learn how to cope with them so you can help other people. There is no reason why you should not live a happy and healthy life just because you have epilepsy.

The Key To Surviving Is Positivity

You need to accept your epilepsy into your life and look at it positively. To do this you need to open your heart and feel what your emotions are trying to tell you. Your heart will never lie to you because the heart only holds the truth. You need to develop courage so you can ask deal with the pain that lives in your heart. Usually, when we chose to hide things about ourselves, it is because we are embarrassed about whatever we are trying to hide. You should not be ashamed of having epilepsy. People with epilepsy are coming out into the open every day. They are learning to talk about the problems in their lives. At the same time, these people are educating society and healing the scars that lye in their heart.

Always remember…

We can’t change the past, so there is no point to dwell on what we can’t change.

We must positively focus on the present

Doing this, you will create a happy, healthy and productive life.

Society Is Getting Better, So Should You

The stigmatism still remains in our society, however, it is improving tremendously. As many organizations and corporations have approached me asking for help, asking “What can we do to help break the stigmatism of epilepsy in our society?”

Companies and organizations in the United States that have the power to initiate change are acknowledging the problem and the importance of solving it. They are asking advocates to help them solve it. We have more sponsoring support groups and research studies than ever before. People with epilepsy need to learn to accept what they have and learn to do something about it. Nothing is going to get better until you learn to help yourself and help others.

Bottom Line

Everyone with epilepsy suffers both emotionally and physically from the disorder. The emotional pain can destroy you if you let it. The only way to move on is to focus on your strengths and to look at life positively. I’m not giving up on you. You shouldn’t give up on yourself.

#epilepsy #epilepsyawareness #epilepsywarrior #Seizures #epilepsyfighter #epilepsysucks #Autism #CerebralPalsy #epilepsysupport #epilepsystrong #epilepsyadvocate #ChronicIllness #epileptic #Seizure #endepilepsy #SeizuresSuck #InvisibleIllness #epilepsylife #MentalHealth #repost #cureepilepsy #Anxiety #Disability #seizureawareness #Love #SeizureDisorder #epilepsyeducation #epilepsia #disabilityawareness #ADHD

Epilepsy Clinic Update

As you know my seizures have basically been my biggest fear since they have entered my life .
But after seeing the #epilepsyclinic I feel like I can finally take a deep breath.
I do have epilepsy, and at first it was such a relief to have a diagnosis .. until the permanence of that hit. Now, it’s been a bit of a “ tough pill to swallow “ epilepsy will forever forever cause worry , and will always be a part of my story .

But , the thing that gives me the most hope is that I finally have treatments.

On Saturday I felt like I was going to have another seizure . ( Felt all the symptoms of a seizure coming , possibly cussed multiple times in my head as I took my nightly med early as a rescue med and suprisingly it worked )
So he doubled my dose , and said anytime I have breakthrough symptoms like that , or breakthrough seizures my dose needs to be increased or treatment needs to be changed.

( the double dose has left me feeling SUPER tired and really spacey so I’m hoping my body adjust )

But the past couple weeks I’ve been having painful muscle spasms again when I sleep , and since starting the higher dose they have stoped .

He also taught me the cause of the seizures doesn’t matter as much as treating the seizures. .
If my seizures prove hard to treat or get worse , then we will look more into the cause .

I do have the most dangerous form of seizures ( grand mal / clonic tonic ) seizures . And it’s not super common , but people who do have those seizures are more prone to SUDEP ( sudden unexpected death from epilepsy)
But they taught me what to tell my friends / family what to do if I have a seizure . ( which I think I might make a video about
And the seizures are only a medical emergency if they last more than 5 minutes b/c your brain naturally can stop seizures , but if they last longer than 5 minutes the seizure isn’t going to stop at all without medical treatment .

I also got (kind of ) released from seizure jail 😂. My PCP got a little nervous when we realized It was grand mal seizures .

Now I CAN walk the dog by myself / be by myself
Take a shower without texting someone that I’m in the shower .

But I do still need to let people know when I’m taking a bath .
Always have someone with me when swimming or in large bodies if water
( I can’t even swim 😂)

And just ask myself “ if I had a seizure while doing this .. would I die ? “

( There goes my plans of doing parkour on rooftops 😉😂)

They were super interested in my neuropathy , and the fact my reflexes absolutely suck .

I got a referral to neuro-muscular
An EEG order
And as you can see from the pic a TON of labs drawn .

This doc even knew a lot about #cvid which I was super impressed with .

We have realized I have been having some symptoms of it since I was a teenager 😅 like random muscle spasms / muscle freak outs that may have caused me to chuck pasta across the room on more than one occasion 😂( how crazy is that ! ).

I got a call today , and we may have even found a little answer from the blood work !
( I will explain that Tomorrow! 😉)

I would like to learn of support networks / foundations / ect for epilepsy. I want to be a better advocate, and heck I wanna learn ALOT more about it!
So if you know of any comment below !

#smileon🐷 #clinicday #epilepsy #diagnosis #chronicillness #chronicpain #learning #acceptance #keepgoing #faith #hope #greatdoctors

As time passed, I was accepted to Stockton University, and with all odds against me, I was determined to succeed. I was put on this earth for a reason, and I was bound to succeed no matter how difficult the ride was going to be.

I remember like it was yesterday, I was in class, and an aura came, I had a seizure, and I woke up in a classroom in dead silence with all eyes focused on me. Even the guy I couldn’t stand had a face of remorse and sympathy. It was the worst feeling in the world. Then my professor, in a calm and friendly voice, asked me if I was OK, and I said, “yes” then my professor broke the ice by saying, “My roommate in college had epilepsy, and he did just fine.” No worries, class. I must have taken every class he taught because he made me feel safe in his classroom.

Eventually, I graduated and then landed a job with a big corporation. I worked there for a while until one day, I fell to the floor and had a seizure. One of the big corporate employees walked over to me and kept going. Thirty minutes later, his associate released me from my position.

Was I ever going to reach the level of success I had always dreamed of achieving? Every time I took two steps forward, I felt like my epilepsy knocked me back another three steps.

By then, I was getting ready to marry the longtime love that I met after high school. I got married and helped my in-laws with the business they were starting. During this time, after three years of writing, I finished the book I started in college, “Epilepsy You’re Not Alone.”

Letters from all over the US and Canada poured in, and people thanked me for writing this book. One person even told me that they were on the verge of suicide, but they saw my book at Barnes and Noble, and they read it, followed my advice and guidance, and they gained purpose back in their life and the will to live.

It was then that I realized how powerful words can be and how a simple book could dramatically change someone’s life.

Then, I decided I wanted to be a writer, advocate, and life coach. I wanted to help others like so many others had reached out to help me in my lowest and hardest times of life.

The Epilepsy Foundation invited me to Washington, DC, where I spoke in front of Congress about job discrimination. Afterward, I met Congressman Rush Holt, who shook my hand, congratulated me on my courage and perseverance, and shed a tear as he told me about heartwarming moments watching his sister grow up with epilepsy.

During my years of writing in the health field and over 15 years behind my belt, I began writing for a herbalist. I used many things I learned and applied them to my own life. Amazingly, my seizures decreased and eventually stopped, and fifteen years later, I was able to drive again.

I was intrigued by herbals, vitamins, food for medicine, and natural life (alternative medicine). I researched for over two years, collected valuable information, and completed my book, The Complete Herbal Guide: A Natural Approach to Healing the Body and Maintaining Optimal Health Using Herbal Supplements, Vitamins, Minerals, Fruits, Vegetables, and Alternative Medicine.

I started with a blog of 400, then created a website of 10,000 monthly visitors to a redesigned website that brings an insane amount of monthly visitors.

Some would be satisfied to accomplish what I’ve achieved with the struggles I have to face.

Yet I am still determined to reach higher levels of success. I want to speak in front of large groups about the importance of a healthy lifestyle. I want to teach others about the power of positive thinking and, most of all. I want to help others who struggle will an illness, disease, disorder, or disability. My mission is to make a difference. I want to help improve the lives of millions.

I realize no matter what age you are or what illness you are suffering from; you can transform your life and create the life you always wanted for yourself. A life filled with happiness, inner peace, good health, and positivity.

HOW I CHANGED MY LIFE

This started a 25-year journey where I discovered the twenty-one principles that pulled me out of rock bottom and back to my pathway of empowerment, which led me to love, inner peace, and happiness.

I realized I was not the only one experiencing a rock bottom moment. I wasn’t alone, and so I decided to share what I learned on my journey, trying to pull my life back together and find my purpose in my life.

I help as many struggling men and women trying to cope with the deck of cards life has given them and help them overcome their challenging obstacles to find their way back to a meaningful life.

#epilepsy #epilepsyawareness #epilepsywarrior #Seizures #epilepsyfighter #epilepsysucks #Autism #CerebralPalsy #epilepsysupport #epilepsystrong #epilepsyadvocate #ChronicIllness #epileptic #Seizure #endepilepsy #SeizuresSuck #InvisibleIllness #epilepsylife #MentalHealth #repost #cureepilepsy #Anxiety #Disability #seizureawareness #Love #SeizureDisorder #epilepsyeducation #epilepsia #disabilityawareness #ADHD