Month: June 2014

My Journey

MY JOURNEY

By: Mistie Campbell

A little bit about myself, I was born in Texas on August 22, I grew up in Arizona. I am the youngest child of five. I am the only person in my entire family to have a serious medical issue. I had been working full time and part time jobs since I was 13. I met Jacob when I was 20 and we got married when I was 21. Jacob was an EMT.

I always wanted to live the perfect love story. I wanted two kids, a husband and a house. I had wanted children for the first 2 years of our marriage, my husband kept telling me that he wasn’t ready, so I almost gave up that dream. Then, right before my first seizure, my husband came to me saying he was ready for children.

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I woke up on Sunday, June 3rd, 2007 to what seemed like 50 paramedics in our bedroom. I didn’t understand what they doing or what they were there for. All I knew is I wanted to be sick and to get out of the room as fast as possible. They were putting oxygen on me and I kept throwing off the oxygen, they were poking me with needles and trying to get me to answer a lot of questions. They finally were able to stick an IV into my left hand.

Shortly after that they said, you had a seizure and we need to take you to the hospital. I turned and looked at my husband and I saw tears had soaked his cheeks. In that moment there were about 10 paramedics that circled around me and they walked step by step with me to a stretcher that awaited me in my kitchen.

They gently rolled me out to the awaiting ambulance. They told me at this point I would be okay and I didn’t need to cry. I was more sad for my husband than myself at that moment. They told me he would be okay and he would follow us to the hospital. I looked around and through the doors. I still can see as clear as day the tears rolling down my husband’s face. Then I looked down at my light pink shirt and in that moment I saw blood. I freaked out, began to ask what happened and the paramedic told the hospital, “We have a 24-year old, white female, first time seizure.”  I said, “I had a what?” All they could tell me is I was okay and they would explain at the hospital.

At the hospital they ran every test on my body they could possibly do. My husband called all of our friends and they all came and supported us during that time. I was admitted to the hospital for 3 days for testing and observation.

Throughout the next few months I was having more and more seizures but still managing to work full time. I had stopped going to church with my best friend because I felt as if God was punishing me. Near early October of 2007, I was near the point of being let go from my job at the bank, because of calling in sick due to so many seizures. I asked my manager how I could fix this attendance issue. I was sent out on FMLA.

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On October 22, 2007, which was also our wedding anniversary, I had a doctors appointment to give an update on how I was doing. I had been on medicine and they were playing with them up until that day. I told the doctor everything about how many seizures I was having and how I was feeling. The doctor looked me dead in the eye and said, “You have epilepsy!” I had never heard that before that day. I felt like someone had knocked the wind out of me and knocked me to the ground and kicked me a couple times. He wrote a couple of prescriptions and made a joke, “Make sure you don’t go skydiving.” As I walked out of the room I don’t remember saying thank you or goodbye.

We got to our house. I went into our bedroom and I sat on the bed, hoping to be comforted and consoled. Suddenly the tears fell like rain, slow at first and then fast as ever. I was numb and in shock. I, Mistie, had epilepsy! What did that even mean? I looked across the apartment at my husband, he was on his cell phone and joking around with a friend of his. About an hour later, I got up the courage to talk and find out more about this thing, called Epilepsy, after all he is an EMT. I walked to his office door and I knock on the door. He ignored me at first. I knocked a little bit louder. I than heard him say he had to hang up. I pushed the door to his office open, I had tears rolling down my eyes. I asked him what is epilepsy? I wanted answers, I wanted them like yesterday. He told me he couldn’t understand me through my crying and to get out until I stopped crying. I left but not before I slammed the door. He stayed in his office all night. I was in our bedroom closet rocking myself and crying for most of the night.

The next morning I went to go see him in the office and to apologize. He had the door to his office locked. I wanted answers and I wanted to talk. I felt rejected, or like I had some major contagious disease and was ugly. I got mad, real mad, I knocked on the office door. He blew me off. I could hear him turn up the music on the computer. I knocked a little harder and then louder and finally with all of my might I punched a hole in that door. I made a point, I wanted to be heard. The only point I made that day is that I had a temper and I didn’t know how to control it. I wanted him to know I was scared and hurting. He began to withdraw more and more from me in the following months. He began to play games online and stay up late at night or wake up way early and not really want to spend time with me. So I got back into working full time, even though I could feel in every fiber of my body saying you can’t do this you’re not strong enough yet. Because, of that I had a seizure almost every single week if not more often.

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I went to another doctor’s appointment and my doctor was happy with how I was doing but she wanted to see where the seizures were coming from. She admitted me to the hospital for a week. During this time Jacob and I didn’t talk much to each other. His friend David came up one night and they joked around about how hot my nurses were and I thought to myself here I am hooked up to all these wires and slowly being taken off of my medicine and you are going to hit on my nurses, really? I felt angry and I ended up having a Grand-mal seizure, Jacob was thankfully in the bathroom with me and since he thought none of the nurses were coming he ended up pulling the call light out of the wall. I again bite my tongue. Due to that I could not eat or talk for about two weeks.

I was out on FMLA until about April 1, 2008. So many changes had happened at work while I was away. My management had changed, there were new hours and a new team. I felt lost, alone, fat and isolated. Once I started these medications I began to drop weight and at an alarming amount. But I didn’t feel those emotions too long. I started to have more friends at work and go out after work and be flirted with by men at work. But, still at home I was the same old Mistie, I was being ignored or unloved. I wanted and longed for answers and for embracing. I felt as if I was going through the motions and I was not wanted or loved anymore. My husband would pick me up from work if he was off that day and then go right back to the computer.

One day at lunch I was on my cellphone talking to an old friend of mine and told her I needed to go before I got into trouble for skipping up and down the aisles at the bank. When I hung up, I looked over and there sat what I thought at the time I thought was an angel. He had a smile that lit up a room and his vocabulary was amazing. He and I laughed a bit and from that moment on we were glued at the hip. His name was Ted, we emailed through out the days and we exchanged phone numbers. However, I never knew, until about 4 months too late, that the whole situation was based on lies. I did the unforgivable, I had an affair on my husband. Ted, was also married and had children.

I continued to cheat and stay away from church. I felt unloved or as if I was being punished for something. My husband found out and became verbally and physically abusive. I finally moved out and requested a divorce in early 2010 after much abuse. Only to get myself into two more abusive relationships. One of which was with Ted after he got a divorce as well.

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In 2013 I was sitting on the couch one day and I said I need to do something with what had happened to me and turn it into a positive. That’s when I created Epilepsy-Support-For-All on Facebook. I can now say I am back in church and I serve at church. I am happily married to the man of my dreams. Charles, goes to every appointment with me and prays with me about the page and he supports me. He makes epilepsy feel like no big deal.

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Just remember you can and will make it. You have to put one step in front of the other. There is also Epilepsy-Support-For-All and we need to bend together for a cure.

You can like Mistie’s page Epilepsy Support for All on Facebook here.

Lesley’s Story

FOLLOW YOUR PASSION

 

Lesley Donnelly - February, 2014

I lived in Zimbabwe, was a Springboard Diving & Swimming Champion and hit a diving board at the age of fourteen (14).

I was diagnosed with epilepsy at the age of sixteen (16). Still today, I am convinced this was due to puberty, hormonal imbalances, and stress from exams at that time. Doctors denied these reasons. My seizures commenced as petit mal (absence seizures) which turned into grand mal (tonic clonic) a year later. I had a wonderful family who helped me accept my epilepsy. They explained how a seizure occurred, what happened during the process and gave me the courage, patience, willpower and understanding to carry on with life.

I was bullied at school but found the strength to ignore the discrimination shown and decided to ‘go it alone.’ At the age of seventeen (17), I went to College, obtained a Secretarial Diploma, managed to find employment in a Group of Hotels, move into my own little flat close by, and had found the independence I was looking for. I met new friends in the working environment; my bosses understood my epilepsy and the seizures continued to improve with the help of medication.

After many visits to my Neurologist and being on different types of medication over the years, I was eventually put on Carbamazapine and Phenytoin, which I have now been on for over 20 years. Due to a shortage of medication in Zimbabwe years later, a move to South Africa had to be made (Kwazulu Natal) and luckily medication still today is obtained through an Outpatients Clinic at one of our local Government Hospitals.

Finding employment in this country has been extremely difficult. The stigmatism of having epilepsy is widely spread and one is discriminated against by both recruitment agencies and small/large companies looking for employees. A Visa was stamped in my passport every six months until Permanent Residence or I.D. was obtained. This stated I was allowed to reside with my husband/spouse, and was not allowed to work or study. Papers were repeatedly lost by our Government Departments upon application, and eventually, five (5) years later, an Identity Document for South Africa was issued. Naturally with no employment for years in this country, my career fell apart and my life definitely changed. From a wonderful career commencing in Zimbabwe many years ago, I now had no career in South Africa (since 2004 and still today.)

A Disability Grant was refused twice, the reason being that ‘epilepsy was not considered a disability’, so I had no income to start off with in a new country and no hope or proof of a permanent or part-time income. My husband found employment but times were hard trying to make ends meet on one salary. He has since been forced to take early retirement two years’ early at the age of sixty three (63) and was retrenched on 31st March, 2014. Where do we turn to now?

 

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Due to all the emotional upset and frustration of the above, I decided to turn my interests elsewhere. I became a National Member of Epilepsy South Africa and in 2009/2010 joined the Epinews Panel (a panel of members with epilepsy who collect personal stories from people with epilepsy.) All stories are edited by me into a bi-annual magazine (Epinews Summer & Winter Issues), which are then distributed to all members and anyone else interested in epilepsy.

This is all done on a voluntary basis but I have found everyone has a different story to tell, each person has had their ‘ups and downs’ with their epilepsy, and so many individuals are much worse than myself. I have approximately one 35 minute tonic clonic seizure monthly now, and I am still able to obtain medication. Many people in the rural areas do not get to our doctors, constantly go without treatment or medication and suffer with their epilepsy day after day without any appropriate care.

A few years’ ago, I was invited to two separate conferences held by Epilepsy South Africa which were the most wonderful experiences of my life. Meeting so many with epilepsy, so many disabled human beings, seeing how they coped, how disadvantaged they all were, gave me the strength to counsel, give advice, support, friendship, love and hope to so many others who had no friends and no one to go to who understood the discrimination and stigmatism they faced in the country today.

A fellow delegate turned me to the internet to join social networking sites, i.e. Facebook and Twitter, and I continued to do more research in the process. I opened up free accounts on both sites and started immediately to talk to other people with epilepsy, find friends, give them the confidence to accept their epilepsy, have hope and faith, and requested them to message me whenever they needed to talk to someone about their epilepsy.

The friendship spread from South Africa to other countries and I met more friends on Facebook and Twitter than I ever imagined. My voluntary advice and counseling system was shared with so many supporters and now I feel I am assisting friends, their families and anyone else interested, to understand their epilepsy and face the public, join groups, meet their own friends and begin to socialise in the outside world.

From being on Facebook since 2009, (with now over 1200 friends), I had a dream of opening up my own Motivational and Inspirational Page. This became a reality on 1st March, 2013, when I decided to take the step forward. I was nervous at first as everyone is when opening up their own support system, but this has brought so much assistance, guidance, hope, faith, and love to all with epilepsy. Epilepsy Motive Quotives (https://www.facebook.com/EpilepsyMotiveQuotives) has brought much joy to others who battle with the constant discrimination, loneliness, and stigmatism in the World today! A daily inspirational quotation can mean so much! Strength must come from within, as well as from friends and family; where else to find it but a Group or Page. We now have 1876 Members and it continues to grow!

I have since re-applied for a Disability Grant which, 6 weeks’ later, has finally been approved! Patience, perseverance and strength were the three vital aspects to obtaining this Grant; these made me more determined to reach this goal.

 

I am now fifty six (56) years of age, had epilepsy for 40 years, haven’t had a seizure for 8 months, have faith and hope that this ‘free’ period of seizures will continue for many more months, even years, but know that my passion is to continue sharing my epilepsy and supporting others!

 

You are welcome to find me on Facebook, Follow me on Twitter (https://www.twitter.com/lesleydonnelly1) and VISIT, LIKE & SHARE my Page: https://www.facebook.com/EpilepsyMotiveQuotives!

 

Remember, there is always light at the end of the tunnel! One just has to follow the right path!

 

 

 

LESLEY DONNELLY

(SOUTH AFRICA)

 

Livy’s Hope

Livy’s Hope

by Jon Scheinman

I once thought the role of a father meant raising my kids to be the best they can be, to give them all the opportunities to succeed in life and to support my family in whatever way necessary. A seemingly common definition that although difficult, was achievable. What I discovered when my twin daughters were born is that the responsibilities of a father are so much more. Hailey was born first and was perfectly healthy. Olivia (Livy) arrived an hour later. Soon after birth, Olivia began having seizures.

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Several turbulent years passed and Livy’s diagnosis was determined to be multi-focal, partial epilepsy caused by a general brain malformation. She has been through a multitude of hospital stays including two for major brain surgeries. Both put extreme emotional and physical stress on my family and my relationship with my wife Allison, causing me to frequently ask, “Would my life be better with or without Livy?” An odd question to consider regarding my own child, but as a father with a daughter who has numerous disabilities, it was unavoidable. Our idea of normal had been twisted and completely turned upside down.

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Now at nine-and-a-half years old, Livy takes three medications each day in order to control her seizures. She also takes several other medications to counteract the side effects of the seizure medications. She is globally developmentally delayed both physically and mentally and cannot walk or talk. She has an arduous feeding and medication regimen and numerous doctors and physical therapy appointments. Despite the surgeries and medications, Livy still has near daily seizures.

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I often wonder in what kind of a world Livy must live. She lets us know if she is happy, sad or generally uncomfortable but we are never entirely certain how she is feeling. It pains me to think that she is in any way lonely or confused. We are left guessing if she is sick or has any type of infection. We have made many trips to the doctor’s office on a hunch that there may be an issue. Over time, our hunches are getting more accurate. We try to understand Livy through interpretation of her demeanor, facial expressions and what little verbal ability she does have. The sounds she makes usually alert us that something is not quite right.

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In the bigger picture, Livy may actually say more than any of us. What she stands for and what she has overcome in her short life inspires people in ways I never thought possible. Her story of hope and the will to live often moves others to tears. She is miraculous in so many ways and I pray that she understands us when we tell her how amazing she is.

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Through all the turmoil, Livy’s twin sister Hailey has grown into an amazing, caring and intelligent little girl. Her empathy for and understanding of her sister and other children with disabilities is remarkable. It is a true gift we could not otherwise have given to her. Despite the difficulties in communicating, Hailey and Livy have an extraordinarily powerful bond. As one of Olivia’s biggest supporters, Hailey asked how she could help raise money for her sister’s expensive intensive therapy sessions. Since Hailey has a passion for art, we suggested she sell her paintings and jewelry. Hailey immediately set out to create some masterpieces which she auctioned on eBay and “Livy’s Hope” was born. Livy’s Hope is now a major part of our family and is how we support children with medical needs and their families. A substantial focus has been to raise epilepsy awareness and funding for research.

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So to answer the question, if my life would be better with or without Livy, I need only walk into her room each morning to see that brilliant, glowing smile. I cannot imagine my life without her pure and transcendent inner beauty. She has completely changed my idea of what it means to be a father and to love unconditionally. Epilepsy has taken a piece from me that I will never get back. Watching Livy having seizure after seizure has at times been unbearable. But I promised Livy long ago that if she keeps going, so will I. She will never travel this road alone. I will always try to give her as much hope as she gives to me and to others. I could not be more proud of her. She is a true warrior and I feel honored to be her father.

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On July 25-27th, Livy’s Hope is making a Stand for Epilepsy: a lemonade stand! They are encouraging people from all over to host a lemonade stand on that weekend. All proceeds from the stands will go to epilepsy research. To register your stand, go to: http://livyshope.com/index.php/giving-back/lemonadeforlivy

Krysti’s Story

Krysti’s Story

I grew up in a one income family situation. When I was 9 years old, my dad was forced to go on disability shortly after having triple bypass surgery. At the same time, he was put on the wait list for a heart transplant. As if that wasn’t enough, he was also a diabetic and was put on the list for experimental pancreas transplant because he was starting to show immunity to insulin.

My mom had to work 6 -7 days a week to make ends meet for our family (in addition to myself, I had a 6-year old sister and a 2-year old brother). My dad was hospitalized a lot. And with my mom working so much, my siblings and I were often left to our own devices. We did have a babysitter while my sister and I were in school so our baby brother was not left alone but when we came home I took over.

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I  was the one who made sure homework was done, dinner was made, dishes were washed, everyone had their baths, and I would tuck my younger siblings into bed and read them a bed time story.

While I was doing this I was also having issues with school. I got my home work done but I had more and more trouble staying awake in class. I never understood why. It was embarrassing and it felt so rude but I just couldn’t stay awake. When asked by my parents or my teachers, I had no explanation for what was going on. I loved to read, especially literature and history.

By 3rd grade I was struggling with school. I was often sent to the principal.  My teacher did not know how to deal with me. Instead of giving me the support I needed, I was given “In School Suspension” for “disrupting” the class. Soon I wasn’t allowed to participate in recess. I didn’t really learn much that year.

Over the years I continued to have issues with class but my teachers weren’t as cruel as my 3rd grade teacher. They offered after after school tutoring and weekend tutoring. My parents took me to a psychologist and I was diagnosed with Attention Deficit Disorder and was put on Ritalin.

I seemed to be doing better grade wise but my teachers were putting extra care into my learning. Looking back now, it’s hard to say if it was the teacher support or the medication that was helping. My mom did research on Ritalin and decided to take me off of it.

When I went middle school I started having issues in school again. My Dad had me going to tutoring sessions along with seeing the psychologist again. This time I was put on Adderall. My mom wasn’t too happy with this. She didn’t want to have a daughter who was medicated. Our relationship deteriorated quite a bit.

During this time, my mom was still working all the time and I was forced to take on a parenting role with my siblings. I went to parent night at their school if Dad was hospitalized; I went to school plays and pageants.

It wasn’t until I was 15 we discovered out why I had been having so many issues in school. My Dad came to my room and asked me to do some chores when my homework was finished. I said “okay” and got up, took few steps and blacked out. I woke up on the floor curled in a ball. I looked up dazed. My Dad was standing over me asking me if I was okay. I nodded and managed slur, “What happened?” He said I had a seizure. My dad knew what was happening when I hit the floor because his mom had seizures after she suffered a head injury.

After that I started to get treatment for my epilepsy.  I was nervous at first with all the testing. I had MRI’s, EEG’s, and constant blood testing after being put on seizure medicine. My first neurologist was hours away from home. The first drug the doctor tried for me was Trileptal. When it didn’t work  we tried Depakote, which helped with seizure control but really upset my stomach. But I suffered through the discomfort until I turned 18 and changed doctors.

My new doctor was wonderful! She had better bedside manner and made her patients feel at ease when she explained something. Unfortunately, she closed her practice due to her own health issues. I ended up having to change specialists a number of times.

In school, I was in an alternative programming stream, which proved to be  a wonderful experience for me. I would not have finished high school if not for the small classes and one on one time with my teachers. I finished high school through Project Future at Disney World.

In December of 2005 I received my Diploma from Saint Cloud High School and attended  Valencia College for a few years while still working and taking care of my brother and sister while they finished middle and high school. But my Dad’s health was getting worse and eventually I had pull out of my college program as the tuition money  was needed for my dad’s medical expenses.

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My Dad’s final months were painful. I went to all his doctors’ appointments with him. He passed away on August 17th,2010.

The stress made it hard for me to function but my  friend, Sean went into the Air Force around the time Dad died and his letters brightened my day. We used to talk until odd hours of morning and when he was in boot camp we wrote to each other and he would fly to Florida to see me. He really knew how to charm a lady.

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We eventually got engaged. I was looking at ways to move to where he was stationed. I was going to transfer there and I was going to change my major to something I could do online.

Unfortunately the relationship didn’t last. My health declined with the emotional stress of the break up. My epilepsy flared with vengeance and could have killed me. My motor skills suffered for it but I am alive. On August 2nd,2013 I lost my job. I have been without insurance for almost year. I had a seizure the other day and was incontinent for the first time. I hope my disability benefits kick in. I’ve survived this long but I need my treatment updated. Thank you for reading.