Purple Day 2017 – Don’t Fear the Purple

Purple Day was started in 2008 by a nine-year-old in Canada by the name of Cassidy Megan. This is a day that those with Epilepsy and those who support us come together and spread awareness. This day is observed globally each year on March 26th to show support for our fellow warriors. While Epilepsy can be a wild ride and sometimes intimidating, know that you are not alone. Here is a a little reflection of my journey with Epilepsy and with a quick search of #PurpleTogether, you can find other inspirational stories about those who travel a very similar road.

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Th Beginning of a Journey

I was 19-years-old when I was first diagnosed with Epilepsy, which was six years ago this year. I was a performer with InProv Winter guard, switching into a new college, violist for New Bedford Youth Symphony, and heading out with friends every weekend without a care in the world. Then out of left field, all of that changed – worst part is, I cannot even remember what happened.

Last memory of that day prior was going to a cookout with my friends from InProv and taking a quick stop at Target – next thing I remember, I am in a hospital bed with my friends’ staring horrified and my father just arriving. I had no idea what hospital I was in, what time or day it was, why I was there, could not recall names, and slowly I began to panic.

When I was finally proved to be alert and oriented, the doctor came in to explained what happened. My friends then started stating what they witnessed and at that moment everything was a daze. I remember my dad’s face turning pale, my friends’ were still in shock – now what? I was told I had a seizure in my friend’s car, while she was driving. She immediately pulled over and called 9-1-1 and luckily a nurse pulled over to aid me and them through my first seizure. I had blood coming from my nose, convulsing uncontrollably, completely unconscious, and let out a scream before the event took place. My tongue was currently swollen, I could not remember even getting back into the car and at least an hour or two had passed and I do not remember anything since being inside of Target, which was 20-30 minutes before the seizure. My behavior was fine, I acted normal, then suddenly I screamed and everything took place. The doctor stated I experienced a grand mal/Tonic-clonic seizure. Then quickly reassured me that it was probably a fluke…at least so he thought.

I continued life as normal, of course my parents were quite hesitant. Both my brothers had seizures, although only in early childhood. I grew up around having to help my parents care for them and the painful wait for paramedics. I was already well aware of this life, but their seizures were not like mine – and that was concerning; this normality became unfamiliar. Then about a month later, it happened again.

I was in the bathroom, last I remember I had just entered the bathroom. I was told I let out this scream that you could not  ignore. The dogs started going crazy and my parents began trying to unlock the door. I bet you could guess what happened; I was seizing in the shower. My dad worked on the door while my mom called 9-1-1; they had no extent of my injuries or if I was submerged in water. Paramedics arrived and my dad went with them and yet again, my next memory is waking up in the hospital – but it was different. I did not feel like I was all there. I was way more groggy and confused. I remember my dad pleading with the nurse to not leave me alone as she sent me for a urine sample. I asked her if I should leave the door open, to which she stated I did not have to – I would not have another seizure. 19-year-old me who was desperately grasping for independence shut and locked that door because of that RN told me. Well, guess who again let out that scream in a locked bathroom? Guess how many security guards came to knock that door down? Guess who then got placed in a medical induced coma?

(Once I woke up from my slumber)

A bit over 12 hours later, I finally woke up to my friends and parents surrounding me. I guess they have been there a while, they all took a deep breath in to see me open my eyes. I was convinced it was still the previous day, my dad opened the windows and everyone kept telling me it was a new day. My dad told me what happened in the ER after I went to the bathroom.  He was upset and angry, he knew as soon as a code was called, it was for me. I just sat there, staring at my hands and the wires thinking, this is now my life. This was not going away, this was not a fluke – this is now my life.

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The Sun still Shines

For quite some time, it felt like Epilepsy did nothing but slow me down. My memory has worsened over the years, I can not work as much as I would like, I interfered with my children’s sense of security, I almost lost my own life, and I am no longer graduating with my peers. But in the grand scheme, things were not all that bad. For every negative, there is a positive – you just have to look for it.

Met my wonderful Partner – His name is Adam. He looked passed my diagnosis, accepted the fact I was a single mother trucking through school and working a basic job. When the seizures came, he stood by me and took us in as well as his family, just so I could rest even if my stubbornness fought hard against that. He reminds me that I am only human, that I am still like anyone else. For someone with Epilepsy, sometimes that is exactly what we need to hear. We are people too. Even with my waning memory, he is patient with me and even aids me. He is a reminder that I am safe and I am not alone. When my medication side affects decide to take over, and I will never forget this, he held me. He reminded me this is not me and he knows that. He reminded me that no matter what, we will get through this and we will get me. For the first time, someone understood. He understood. I will never let that memory fade.

Friendships Grow – I have made some wonderful friends through Epilepsy – whether it was through support groups or becoming close to those around me already. There is one person I would like to mention specifically, that is my long-time friend, Maria. She may not know it, but she did pull be out of a spiral. After my accident in 2016, I was lost – I worked very hard for 4 years to be told I could no longer continue because of something I cannot control. My daughters’ would cry every time I left the house thinking I would not come back or come back in blood as I did that time. My partner was worried about me when I would not respond – as that is what happened shortly before the seizure. I had a lot of guilt that became depression – I also had anxiety flaring up alongside it. Maria stood by me, she listened, and she pulled me up – probably unknowingly. She got me back into music which was a huge outlet for me growing up, she made more of an effort to check in, she came by now and then, and she brought me back into reality. There is a lot I never say out loud, but she still understood. I could never thank her enough

Passion for Pediatric Nursing Grew – I always liked pediatrics, but I had an amazing experience in Maternity and though perhaps that was my calling- until pediatrics. I will not forget the amount of children there for their first seizure or had been diagnosed with Epilepsy already. These children were afraid, theses families thought of it as a dead end, and in that moment, I imagined my family. I remember being in their shoes, just older. I took time with these patients, one patient I walked with around the halls just talking about Epilepsy and our seizures. They were grateful, they had hope, they saw a light – and I will not forget that. If I could instill that in more people, I could never complain about my job. In that moment, I found my calling.

Family Growth – Although, I hate to admit my girls may of had to grow up quick in some aspects and I see it every day in my oldest. Once they were able to grasp that mommy had “accidents” (what they term seizures), they had never left my side. My oldest does not like the idea of me sleeping alone, she sleeps besides me when my partner is not there. My youngest watches and reminds me to take my medication, she even learned which bottles were which. They grew interested in the medical field, my youngest always dressing up as a doctor during play time. My oldest is always hugging me and reminding me that “it’s okay mommy,” and I have her. Each moment we truly cherish, even at their young ages. While yes, I have a lot of guilt their first memory will be mommy being unconscious and convulsing, I am thankful for the bond that formed.

Meeting Fellow Warriors– It took me a while before I started seeking support from others with Epilepsy that may be around my age. For a long time, I wanted nothing to do with my condition and wanted it to just go away. I went through being made of, losing my independence, losing my license, almost losing my job, and feeling like I was incapable of functioning on my own. That was far from the truth in reality, but at that time, that felt like my reality. I struggled alone for quite some time, then I finally found support within a group and a girl I met online. Along with others we formed our own support group and it has been nothing but a blessing. We are able to be there for others so they do not have to struggle alone and we are there for each other when we go through times of darkness.

Gaining Self-Confidence – I chuckle when I reflect on how Epilepsy gave me confidence after turning me into a hermit. I was at a low that no one quite realized, but as I grew with Epilepsy – I started to gain confidence and resiliency. I became determined to not let it stop my ability as a mother, student, partner, and musician. I became determined to prove that I can still take care of myself and work. I stopped listening to the negativity that surrounded me. I wanted to be more than my illness, I wanted to be me. Of course, I understand all of this is still within limitation, but I can still have a fulfilling life.

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Remember, you are never alone

At the end of the day, at this present time, Epilepsy is here to stay for most of us. Whether it is having seizure or the side affects from medication and repeated trauma, it will be part of us forever. We must learn to embrace it and spread awareness in hope that one day, there will be a cure. Embracing Epilepsy can be hard, but you are never alone. Take a look at the #PurpleDayProject – support came in from the United States, to the United Kingdom, to Austria, and back again. There are support groups for just about every country and region. There are support groups online, in person, and wonderful medical professionals out there who will help you along your journey. You are never alone.

Your journey is what makes you,  you. We will have bad days, and we will have good days – that is human nature. It is okay to not be okay, it is okay to wish for a different path. Just remember, you are here because you are a warrior. You are strong and you are reliant. You did not  choose to give up, even if you were on the brink of making that decision.  Cherish the moments of happiness and embrace the moments of sadness with positivity.

You will prevail.

Promise.

Parenting with Epilepsy

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What’s it like to be a mother with Epilepsy?

It is hard some days. It is hard work being completely healthy but imagine having a chain-linked fence in the way. You can reach through this fence but you are barely touching your child’s hand as they reach out for yours. Imagine having to console your children every night that mommy will be okay. Imagine your children being afraid to go off to preschool because mommy might have an “accident.” Imagine your children’s morning motivation to get up is to help you take your medication. This is motherhood with Epilepsy.

There is only so much I can do at their ages of 2 and 3 to help them understand. They try their best and try to help me. Some people question why I allow them to help me; it has helped them cope. Even though my accident has now been almost a month ago – I still have marks and every day my 2-year-old asks to see them and kisses them to make me better. They have not picked up on mommy’s jerks and probably see it as normal due to frequency but one day I am sure they will ask.

There is guilt. There is anger. There is joy. Guilt for me comes from having Epilepsy. I had a seizure and thought I dropped my newborn but luckily and probably subconsciously as well as instinctively, I placed her down to sleep. I had another seizure while they were both in the tub and the reality is that they could have drowned. There is guilt I carry from those almost events. There is guilt I carry for every tine my children worry. My anger stems from guilt. I get angry at Epilepsy. I do not want my children’s first memory being that mommy had a seizure. Unfortunately, the reality is that it was traumatic for them and that might indeed be their first memory. But alas there is joy. They are more aware, more forgiving, and kind. They understand sometimes people need help; even adults. In one aspect it brought us closer, if that’s even possible.

They are my heart and soul. They inspire me. They push me forward. I would be lost without them. They make me fight harder every day. They are the sun on my rainy days.


How do you explain to a child about your seizures?

This will depend on the age group and what YOU as a parent feel comfortable disclosing. Let us take a quick glance over the development of children.

  • Infancy (0-1 year) | Coordination sensory experiences with action
  • Toddler (1-3 years) | Egocentrisim, questioning through play,
  • Early Childhood (3-5 years) | Rudimentary conscience, knowing right from wrong, magical thinking
  • Middle Childhood (6-12 years) | Perceive past and future, questions others point of view, question beliefs, trial and error, problem solving
  • Adolescence (13-18 years) | formal operations, strategic interventions, interpretation of earlier experiences

(Note that this goes a lot more in depth and by theorist; again this is a brief and simple overview)

 

For my children; they are about the age of magical thinking – what this tends to mean is the child may blame themselves for why something has occurred. The believe that their words have power. Also they are still routine orientated so when something gets interrupted it is an anxiety provoking experience. For me personally, I saw how much stress this caused my children. I saw their confused and tearful looks – curious if mommy was going to be okay. I decided right there I would be honest, use as many proper terms as they could grasp, and communicate with them in their own words. They call my seizures “accidents;” when I used the word seizure they automatically connected it to accident and that is how I explained it to them. When I talk about my medication, my two-year-old calls them “beans;” so that is how I explain it. It is important to explain things in a way that THEY will understand. It may sound silly but this also alleviates their stress and you know they understand what you are saying to a point.

I also decided I wanted to be transparent. I want them to know; I want them to know what to do. I feel that this would be easier for them as I am a single parent. No one else would usually be there to help them in an event or shield them from the truth so for me it was best to prepare them. Plus, they will be able to get some form of help if needed. Again, this is entirely your choice and your decision.


Did this affect them?

I cannot say for sure to what extent but as of the most recent one, truthfully it has. They worry still every day. Just earlier today my three-year-old told me she would buy be a special present if I did not have any accidents. They check on my old wounds and confirm that they are going away and they make sure to watch me take my medication. They are a lot more concerned when routines get disrupted or things have changed. My oldest refuses to sleep in her room since the accident. My youngest is starting to follow in her footsteps. I reassure them the best I can in a way they can understand but it is not that easy.

Some people may automatically blame their stress on my transparency – but I ask you to think about this situation. You are by yourself with your child/children and you fall to the floor unconscious and convulsing for 5 minutes, possibly bleeding due to an injury. What is more traumatizing? Not knowing what is happening or knowing that there is help and this can be fixed? It is a personal choice and preference and I respect everyone’s opinion, please respect mine.


From my Three-Year-Old

“What’s it like with mommy having Epilepsy/accidents?”

Kaylin: Lots of doctors…and more doctors.

“Are you scared mommy might have an accident?”

Kaylin: Sometimes..no more accidents. You have to be a good girl.

“How do you feel about mommy’s medicine?”

Kaylin: I like your medicine. It keeps you safe


From my Two-Year-Old

“What is it like that mommy has accidents?”

Autumn: Beans and doctors. Doctors give you beans

“Do you get scared?”

Autumn: mmm (did not want to respond)

“How do you feel about mommy’s beans?”

Autumn: Your beans, B6 and Keppra! Can I help tomorrow?”


What can I do to keep them Safe?

  • Dress/change young children on the floor
  • Bathing young children on a mat or towel and give them a sponge bath
  • Get a wrist attachment for a stroller or purchase a jogging stroller (typically comes with one)
  • Feed a baby/young child in the lowest position possible. If breastfeeding, feeding them in bed is a good option
  • Keep your house as hazard free as possible (“baby proof”) if the little ones are mobile. That way if you are alone, less of a chance they will get themselves hurt.
  • Keep medication in a secure place away from little hands
  • Develop a seizure action plan if the child is old enough and if you feel is necessary
  • Have emergency contacts posted somewhere for easy access for older children as well as what to do during a seizure
  • Do not be afraid to ask for help if needed after a seizure. Your health and your child’s health are key priorities.
  • Reduce your own risk of having seizures by taking care of yourself!

Feel free to leave your thoughts, comments, or experiences below

Pregnancy with Epilepsy

Warning

Before I get into this I will place a warning for anyone who has had miscarriage. I will place a warning for anyone who does not feel comfortable about reading about loss. I will do my best to keep that section short. But there is a positive outcome. I promise.


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My Experience.

So, if you have read some of my older blogs you will see that my first neurologist advised me to not get pregnant.  At 19 years old, with dreams of being a mother – sorry, you have Epilepsy in the form of generalized tonic-clonic seizures. Of course, some of you may know that I did not listen too well.

I am very keen on researching. I like to know what exactly I am getting myself into before I do it. I decided to look up pregnancy and Epilepsy and saw some sites recommending to take folic acid. There was and still is a lot of research promoting it. Fun fact: Folic acid can reduce the rate of neural tube defects by more than 70% (https://www.health.ny.gov/publications/1335/). These defects can be associated with antiepileptic drugs (AEDs) so many obstetrician/gynecologist  (ob/gyn) and midwives will suggest folic acid when you are trying to conceive.  The trick is to start the folic acid BEFORE getting pregnant because a lot of development happens in a short amount of time before you typically discover that you are pregnant. Some sources suggest starting folic acid a month before you start trying to conceive. I started folic acid when I started Keppra, so it was a few months prior.

But how much do you take? Again, recommended standard according to the Epilepsy Foundation is 400 mcg (0.4mg – http://www.epilepsy.com/information/women/all-women/folic-acid) to start. The dose will vary depending on your dose and type of AED – always good to visit an ob/gyn prior to conceiving, but if not starting on 400mcg (0.4mg) is a good place to start. This is where I started along with taking a prenatal vitamin, but when I finally saw an ob/gyn and had a new neurologist, they placed me on 1,000 mcg (1 mg) of folic acid. That was a big jump that I was not expecting.

It took a few months before I saw a positive test. I was not really sure if this was due to the AED or just coming off birth control. I was honestly fed up and about to stop; maybe my neurologist was right. Then one morning, I saw the strong pink lines, it was positive and I was over the moon. I could not believe this was finally happening. Then slowly fear sunk it – now what? At the time I was living in North Carolina, I quickly set an appointment up for my first visit with the local ob/gyn. After about two weeks I noticed some abnormal bleeding that soon turned bright red. My heart sunk; due to my studious nature, I already had an idea of what was to come.  I tried to ignore it and hoped it would go away. Every day it got heavier and eventually I ended up in the emergency room. I will never forget sitting in the ER with my head low, embarrassed. I sat quietly  for  hours until my eventual miscarriage occurred and the hospital ‘confirmed’ it. My heart broke. I felt like I was not a proper woman, that maybe I was not healthy enough to bare children after all. I tried everything to make sure I had a healthy pregnancy and still failed. I was filled with disappointment, anger, and just sat and thought “this is because of Epilepsy.” I was mad at myself, now wishing I had listened to my neurologist. Wishing that my Epilepsy would go away. Now I had to set up a new type of appointment with the ob/gyn; one I was dreading.

With fluctuating hormones in pregnancy it can produce or reduce seizures. My appointment was only a few days later and in the office it happened. I had a tonic-clonic seizure in front of everyone. Last thing I remember was standing in front of my partner at the time, next thing I knew I woke up in a hospital. If I was not embarrassed and disappointed enough to be there for a miscarriage, this topped the cake. They told me it was due to the ‘dropping’ of my hormones from the miscarriage. Wonderful, two things I did not want to talk about or deal with, but now I had to.

About a month later I was still spotting. I was confused. I thought maybe my body got really messed up from all the stress and went to a walk in; they confirmed I was pregnant but looked baffled when I told them my history. They immediately sent me to the ER. There was no way. I did not engage in any type of activity as everything that happened sent me into a depressive low. The ER ran blood work and the doctor came in and looked at me apologizing “actually, you have been pregnant this whole time. I am not sure who told you that you miscarried, but you did not miscarry completely.” He told me he thought I miscarried a twin. At this point I was over trying to have a child, I had no idea how to react. My partner’s face turned white and I was in utter shock. He went on to tell me my seizure was due to the rise of hormones and immediately checked to make sure everything was okay by ultrasound. Now what? I asked the doctor is the seizure would affect my child. He could not give me an explanation if the seizure would and started to avoid eye contact. He said there was not enough research to guarantee a healthy baby. Now what?

I moved back to my home state and immediately got an ob/gyn. A hospital in another state oversaw my pregnancy as they were preparing for the worst case scenario due to having Epielpsy. I had to go to weekly neonatal stress tests at an earlier rate than a typical pregnancy, had to see a genetic counselor due to my family history and to go over possible birth defects from Keppra, I was told a cesarean section (c-section) would be a better option as there is a risk I could seize during labor, and I had to go to different cities and out of state for more tests to make sure my baby would be okay. There was a plan made if the baby needed a neonatal unit, there was a plan made if I seized during delivery, there was a plan made if I needed a C-section – plenty of plans, but nothing really made me feel safe or consoled my worries for my child.

The day of birth came. It ended up being a scheduled c-section because my little one was breeched – the doctors were relieved almost by that. I was very adamant on wanting a natural birth. I was also adamant on breastfeeding but was told not to as the effects could be harmful with the medication; there was not much research done. Although, at the end of the day, I can happily say I gave birth to healthy baby girl and that is all that mattered. Although, after the c-section my body was trembling and they thought I might have a seizure so I could not hold her right away after the initial meet.

Fast forward two months, guess who had another seizure? Guess what that meant? I was pregnant; already about a month pregnant by that point. Again the same fears flooded back but there was some reassurance since the first time went alright. Doctors were well prepared after having my first child. There was no way out of a c-section this time with how close they were. Now I did not mention this the first time around as I came back halfway through my pregnancy but they increased my Keppra with both pregnancies. It was some time after the first trimester that the dose went up. They checked my Keppra levels more frequently to make sure I did not get to a toxic level as this could harm the baby and myself. I was still on folic acid from before as I requested to be so there was no change there. This pregnancy flowed a lot better because they were well prepared. Again, a second hospital out of state watched over my pregnancy. Again, I had to travel out of state for testing. I was placed into a research study on the effects of Keppra on pregnancy this time around, still no new information could be given. Everything went fine..until birth.

Now I am not sure exactly what happened but I remember being halfway during the c-section and feeling dizzy. I remember my body temperature dropping and I started shivering. My heart rate and blood pressure was doing something they were not supposed to because the nurses had a look of concern across their face and kept asking me “are you okay? keep your eyes open okay” There were student nurses in the room and they whisked them right out immediately. They hurried their way through the c-section and started pushing things through the IV I did not remember from before. They started getting concerned I might seize and did everything to get my temperature back up and body under control. All I could think was “please don’t seize, not now, keep it together.” Luckily nothing came of it. Again, another healthy baby girl. But I guess my first neurologist had a point, it can be risky to give birth with epilepsy.

Again, a month or two after the birth I had another seizure. This one scared me. I did not remember where I had my newborn last. I had no idea if I fell with her. I had no idea if she was in my room or hers. I had no idea where I even was for a few moments. I rushed in and out of rooms and saw both my children asleep peacefully in their separate beds. They were safe. I sat by my door and just cried. I knew it was not going to be easy, but I did not think it was going to be this tough. No, I was not pregnant this time. It was due to the fall of the hormones.


What to remember if you are planning to conceive

  • Seek an ob/gyn prior to becoming pregnant and trying to conceive as well as informing you neurologist. You want to set up a plan and you want to make sure you have enough folic acid to promote healthy growth of the developing fetus and some studies show this can take about a month prior to build up enough in your system. You will also want to take prenatal vitamins to make sure you are getting enough nutrition not only for yourself, but your little one too.
  • Do not stop your medication if you become pregnant. While the possibility that some sort of defect or issue can occur is scary, what can be more worrisome is not knowing how a seizure effects a fetus. You need to be as healthy as you can be and take care of yourself first and try to limit the amount of seizures/seizure activity you have
  • Pregnancy will affect the amount of medication you receive. As the pregnancy goes on, you will more than likely see an increase like I experienced. This is due to multiple factors involving pregnancy – including weight changes, hormones, and the developing fetus.
  • If your seizure have been well controlled – do not be afraid to ask your specialist if you can decrease your dose before trying to conceive. This might ease your mind and limit stress levels but even if that is not an option for you, you can still go on to have a healthy pregnancy.
  • Breastfeeding is possible – but discuss this prior. Some medications advise against it as the effects to a newborn are not well known or are known to have adverse side effects. There are options such as trying a different medication, lowering the dose, temporarily coming off the medication, donor breast milk, or doing formula if none of the option are applicable.
  • Do not be afraid to ask questions. This is new and can be a scary experience. Feel free to ask all the questions you need.

Facts Behind Epilepsy and Pregnancy

  • 15-30% of women will have an increase in seizure activity in the first and third trimester
  • Seizures that occur during your menstrual cycle will no predict if you have an increase in seizure activity during pregnancy
  • Women who have been seizure free for 9 months prior to pregnancy have a high chance of staying seizure free during pregnancy
  • Partial seizures do not carry as much of a risk as generalized seizures. Tonic-clonic generalized seizures carry more of a risk to mother and baby if a seizure was to occur
  • Most specialist feel that AEDs are a safer option than risking a seizure
  • There is a 4-6% chance that a malformation may occur that cannot be predicted
  • Family history of congenital malformation will raise the risk of a malformation occurring
  • Vitamin K may be give to women with enzyme-inducing AEDs in the last month of pregnancy
  • 90% of women with Epilepsy go on to having healthy babies

For more information visit:


What is your experience with pregnancy and Epilepsy? Leave a comment below!

“It’s okay mommy..”

An Open Letter to my Daughters

Dear Daughters,

As you grow and get older every day, you make mommy more and more proud to be your mother. I am grateful to have two perfect little girls enter my life. I am sorry mommy cannot be around as much as she likes between school and work; trying to make the best life that I can for you both. But one day, I know you will understand.

What you may not understand is that mommy has a little battle. I know you know how to say the words “seizure” and “epilepsy.” To my three year old, you call it “accidents” and mommy appreciates every time you try to help mommy avoid “accidents” by moving chairs and sleeping by my bedside. To my two year old, you just picked up on calling them “accidents” and you always ask me if I had took my medication. You both ask me to show you each one as you call them “beans” and try to pronounce the name back to me and realize that this helps mommy. I appreciate both of your kisses on my scars from these “accidents” every morning before school and telling me “it’s okay mommy if you have accidents, I love you.”

I know I was “yucky” when I came home but that never stopped either of you from your hugs, kisses, and cuddles. Mommy is sorry she was sleepy and sore and could not be there for you as much for that first week but as you both tell me “it’s okay mommy, you have accidents, I love you.”

When you were younger, mommy had accidents too that scared her. I did not know how to go about telling you when you got older. I was afraid of how you would react to my “yucky” face and having to wait until mommy took all of her “beans.” I was terrified of the day you would witness one. When you were younger you witnessed mommy’s “accident” but you will probably not remember. You thought mommy had fallen asleep until Grammy and Grampy came in. Every day I thank whoever is watching out over me, over us, that you both were okay. Just like how I am thankful you were not in my car when I had another “accident.”

I am sorry you get worried for mommy at the ages of two and three. I never wanted you to be afraid or wonder when or if I will come home. I know going back to preschool was hard for you but you got better and stronger every day. Mommy wanted to reassure you and every day, despite the pain, I came to get you so you would know I was okay. It broke my heart the day you said “Mommy, I don’t want to lose you again,” as much I would love to reassure you that ‘you never will’ that is not always the case. But I will do everything I can so that  you will never lose me. For you both are my heart and soul; there is not a thing I would not do. And I will never forget the words you say to me every day so I can stay strong:

 

“It’s okay mommy if you have accidents, I still love you.”

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This was incredibly hard to write, but this is my reality and now their reality too

My Reality

This is my Life.

        I have been living with Epilepsy for 5 years. It gets easier I suppose. It is never “easy” per say but you meet people; inspiring people..and sometimes you are able to give that back. Sometimes you educate; which I strongly believe in. Many people I have met get worried or afraid for me when I tell them I have Epilepsy. Some people start treating me like I am a child who cannot do anything on their own. Then there are some people who avoid it all together like it does not exist. Get to know us. Get to know me.
       2011 is when it began. My first seizure was known as a grand mal or a tonic-clonic seizure. What this means is, yes this is your “classic” seizure. I blank out, scream, fall, and shake. They usually last, for me that is, around 3-5 minutes. Yes, I bite my tongue – please do not put anything in my mouth. I have actually bitten off a small piece of my tongue in the past…and again recently. I will go through my postictal phase where I will respond and answer you normally but will not recall it at all. This actually tricked a nurse once and I ended up in a medicine induced sleep for 12 hours along with a repeat seizure. Eventually, I will consciously come back, but I wont remember your name or how I got there. I wont remember anything prior to the event until the next day. I will never remember what happened immediately before or during the event. That is the basic run down.
       Back to 2011, my seizures were not properly control. I was having multiple tonic-clonic seizures a month. I was given this wonderful (using wonderful loosely) medication called Keppra or more commonly written as levetiracetam. I say wonderful because yes it is wonderful for women of a reproductive age. It does not effect your fertility as harshly and better on pregnancy (I have birthed two children while on Keppra, we will talk about that later) than other anticonvulsants. But, as any other medication, there are side effects. For me, it made me incredibly sleepy. I have to nap now and then. It also screws with my mood – I go through really low depressive funks and some days I am perfectly happy and go lucky. It makes me incredibly irritable – I literally yelled at a stranger in Stop and Shop which I would never do otherwise because that is extremely rude. I get angry for no real reason at my poor boyfriend – bless his soul. I also feel it slowed me down with school. Reading and focusing became difficult and my comprehension sucked in comparison to before. It also became harder to recall information. I actually weaned myself off of Keppra because I hated how it made me feel and then my seizures came right back. Time to find alternative coping mechanisms.
       Some studies and people claim that vitamin B6 is supposed to help with the emotional/psychological side effects. I never tried it before but I am now and will update if I find that it works – so far no but it has only been 3 days. My neurologist actually mentioned it before I had a chance too so this might be a plausible tool. I have always taken folic acid with Keppra because it helps fertility wise and to keep the baby safe from neurotube defects – which it successfully did so for my girls.  I also started fish oil this time around to promote brain health. 
        Back to basic history, after my first neurologist completely overdosed me on Keppra and I could literally not remember the day before or how to do basic tasks and found a second neurologist – Keppra worked for my seizures. Until I got pregnant then I would have a seizure immediately before I found out and after the pregnancy when my hormone levels dropped. When I decided to start going back to school in 2013, I weaned myself off because I felt like I would not be able to keep up. I was officially off Keppra at some point in 2014-2015 and slowly the seizures came back but as nocturnal ones – still involved tongue biting. Then I started to get really worried after my first “typical” seizure for me occurred. 
        My children were in the bathtub, I was bathing them. Can you guess? I had a seizure. I could not remember even giving them a bath. Luckily I was at my parents and after a while they thought it was strange I was not coming out and it got oddly quiet. No one knew how long I was out for and thank goodness my girls were okay. This is my reality and now theirs.
    I tried making an appointment with my neurologist but when it rains, it pours. I could not get in with him and I also apparently owed them money because they misfiled a bill with my insurance and did not want to listen to me or my mom and I did not have money to pay. So I decided to take it easy and hope this was just a fluke. Then my recent one happened after a few more questionable nocturnal seizures.
    I drove my car into a brick chimney attached to someone’s house – essentially a brick wall. I had a seizure behind the wheel, thankfully kids not inside, and crashed. I could of very easily lost my life that day, but someone is clearly looking out over me. I do not remember the events leading up, do not remember the crash, and woke up in an ambulance confused before passing back out again and waking up in a hospital. Now my oldest is afraid to leave me alone, she will not sleep on her own, I had to drop some classes, I can no longer graduate this year, and aspects of my life are now in limbo. This is my reality.
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                                  (Photo Credit: https://pennspeaksforepilepsy.wordpress.com/2011/11/02/epilepsy-awareness-month/)

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