Category Archives: epilepsy

Epilespy Awerness: #DareToShop

#DareToShop because epilepsy shouldn’t limit us to on-line shopping. Epilepsy  shouldn’t take away window shopping, which is a great way to exercise and learn about new trends, toys, and books at the same time.

The second time I cried in my current neurologist’s office was because I had to go shopping for jeans and a bra. Yup, because I had to go shopping. He put me on a new medication that made me gain five pounds. Honestly, I was not going to bring it up. It is not enough weight to be concerned about when it is a possible side effect. But he asked specifically if I had any body changes. One of breasts grew and my waist line had grown just enough to need new pants.

Shopping is hard. Florescent lights are hard for many epileptics. There are triggers sneaking around in bright, loud, crowded areas. Worst of all is the fear of dropping for a good shake around people. People who stand there and think its cool to watch or something. Then someone calls 911. It’s a hectic mess. It’s stressful thinking about it. Shopping is tiring. It takes a lot of energy finding your new size and deciding how many you should buy. How long am I going to be this size? And the guilty feeling of not being able to go look at more stuff with those who came with you.

#DareToShop because you should pick your own clothes, stuff, a boat, dog treats, and try clothes on so you know its comphy before you buy it. I know my sisters like spending time with me out in the world and it doesn’t bother them to have to suddenly make our outing short. And my niece, the homebody, prefers it, “Auntie are you feeling like we need to go home? Are you dizzy yet?” I am off by myself feeling guilty and thinking that I shouldn’t have come because they would have had more fun. #DareToShop because you should if you miss it or because its good way of socializing. #DareToShop because of that time I found Noritake teacups for 0.50$.

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Epilepsy Awareness Month

The only medical show I had ever watched before my diagnosis was “MASH 4077th.” I didn’t know anyone with epilepsy or seizures. So the first time I heard the word “epilepsy” was when I was diagnosed at nineteen years old. The neurologist did not do a good job explaining what was happening to my body. Everything I found online confused me more. I was scared. Strange things were happening to my body and memory. These strange things scared the people around me. We didn’t know how to talk about it. I didn’t know the vocab. None of my friends new it. Talking about it was apologies, singing the “Peppermint Twist,” and jokes. Dealing was taking my medicine, learning to hide bruises, and getting really good at selling my excuse. There was only one thing on my mind, when is the next attack going to happen and who is it going to freak out?

It did not have to be that way. That is why Epilepsy Awareness is important. If I had been educated about what was happening I could have been prepared, not left in a state of constant dread. If even one person around me had been educated about epilepsy then my entire college experience would have been very different and the experiences of my friends and family would have been better.

The National Epilepsy Foundation awareness campaign is #DareTo and talkaboutit.org  I could not find a blog challenge so I am going to try to talk about it over the month.

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PAM16:3 Strength in Numbers

 Who is someone you have found inspiring during your pain journey and why?
I thought about this a lot all day because I really don’t understand.

My grandma. She taught me that it is all going to be ok and I’m ok.

My grandma illness worsened about the same time I got sick. She had pain everyday. She  was the only person I knew who had pain everyday. When we went to Wisconsin to visit I started staying at grandma’s house. She gave me lessons in how to behave and take care of myself. Every time the family would go somewhere grandma and I would have discussions about what I was capable of at that moment, that is always the first question, not do I want. She taught me to read my body. What others think doesn’t matter. If someone wants to see you they will come. If you push your body it will knock you down. She taught me how to engage my eyes when they playing tricks on me.

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Me getting sent inside.

She taught me that it is okay to be yourself and its also OK to try to keep yourself but it changes you. She chided me on being the slowest and worst learner God could have sent her. I learned a lot from just watching too. She didn’t smile a lot but didn’t frown or be a sour puss either. I only saw the pain on her face occasionally and briefly. But she also let everyone know that she hurt when she felt like they forgot. If you asked her how she felt she gave a honest ten minute answer. In the past eleven years the place I felt safest was with her. I woke up terrified after each seizure until the day I woke up from one and she was hovering over me. She said “Oh look, there you are, your ok. We got ya. You remember that, your ok kid.” Now when I wake up I remember her saying, your ok kid. She made all of this not so scary and more manageable.

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This Must Be Serious

I often see “everyone remembers exactly when the pain began.” What they were doing, day, minute, even to the second.

But do you remember the day when the seriousness of what was happening hit you? A moment of clarity. When you realized you were screwed over by your own body?

That moment is clearer to me then the day the pain began.  Which is understandable I suppose because the pain made me pass out.

I have a twin brother. We did everything together growing up, almost inseparable. I was the crazy imaginative irrational rascal and he the stoic rational calm brat. We made a great team. When something was amiss Mom and Dad automatically yelled for the “twins”.

Collage and the Air Force separated us for the first time. I had been trying to call my brother since my first seizure with no avail (time zones, phone tag), so a week later I e-mailed my brother the details of my adventures and warned him that I needed to speak with him the evening of my first neurologist appointment and to call me with no regards to the time. The appointment did not go well.

Brother demanded a full account of my pain and why he wasn’t told the seriousness of it. He sounded angry,  he never sounded angry. He was talking fast and rambling a little. That is what I do when I get emotional. He has a facial expression and a slight tone, not a slightly raised voice and short pauses.  I hadn’t even told him how awful the appointment had gone yet. When the time came that he paused for that account I was surprised by my calm tone and reassurances that we had a game plan. It would not do. I needed to transfer to university down the road and live with him. He needed to care for me. Suddenly I am reminding him that he was awaiting orders to ship out. That the plan is irrational. For the first time my brother said something irrational and had deviated from his calm air. For the first time I told my brother no without being persuaded or reaching a compromise. (If he was not awaiting orders I would have transferred.)

My brother was scared and at a loss of what to do. It scared me. It made everything that was happening sink in. I realized that my internal dialog was referring to myself in third person. I wasn’t going through this, it was “Crystal” from “The story of her life.” I was confused, why did my brother just behave so?  Why do did we to go against our characters? I wanted to go but couldn’t, he should have said that. It was the first battle lost to my illness. I realized my illness is forcing my relationships to change. The illness had taken a few things away, this made me acutely aware of them. That brought it all together. The reality, seriousness, gravity, life changing tragedy that has darkened the doorstep of my family.   This moment was worse then the moment the pain started. The wave of emotions set off a migraine and I cried myself to sleep.

 

To give you an idea, I remember him loosing his calm and treat me this way only once before. I almost drowned while white water rafting when I was about 8 years old. He pulled me out of the water and when I woke up he was rebuking me. I did not respond with rationality.  I saw I lost my oar, afraid of getting in trouble, I tried to go back into the water to retrieve it.

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Epilepsy Awareness: Emergency Lights

The new emergency lights are terrible. They are worse at night. The new lights are LED lights that flash instead of normal lights that rotate. EEG lights are LED lights that flash, just in a different color.

Cop cars have three kinds of lights that it rotates. When pulled over it is protocol for the officer to turn off the forward flashing light if informed there is an epileptic in the car. This is the light most likely to cause a seizure because of how fast it flashes. It is also protocol for an officer to call for an ambulance if lights trigger a seizure. These lights have been known to trigger a seizure in someone who has never had one before and persons who have not had one for years. I have trouble with some TV/movie/news scenes.

 

We found out that emergency lights were not that well planned when we got stuck in a traffic jam due to an accident shortly after my first seizure. Lots of police cars and ambulances, maybe a fire truck.

Lesson of the day: the worse place to have a seizure is in the car. Less bruises but lots of kinks and sore muscles. Good luck getting into the rescue position.

I was in the car with my Dad, middle of the night. The cop car lights and my Dad putting his hand over my eyes woke me up. When the officer came up my Dad already had his window down all the way down, although it was below zero. The officer started to ask the “Do you know..” Dad cut him off. “My kid had seizures, could ya turn off your flashing lights.” Officer says, “I can turn off my forward lights.” Dad says”That’s prefect if its the ones the doc says flash.” I think the officer ran to his car, the flashers seemed to go off rather quickly. I remember my Dad being very thankful.

Lesson of the day: Officers are pretty awesome.
My Dad is awesome, but we already knew that.

One fun night, I was on the way back to the dorms from a doctors appointment and errands just after dark. My friend got pulled over for speeding. He politely asked the officer to turn off the forward lights because of my epilepsy as soon as the officer got to the car window. The officer refused. I am light sensitive and went into a seizure. The officer insisted that I was faking. We were trying to get out of the ticket. Chided my friend for not giving him his full attention, for taking off my seat belt, reclining my seat, and keeping my sister calm. So the officer broke protocol again when he didn’t call for an ambulance, seizures are considered a medical emergency.

Lesson of that day: getting a cop in trouble sucks.
I believe that there are few officers that take seizures so lightly. Every other time in the past ten years that I have been with anyone that got pulled over the officer turned off their forward lights as soon as they heard the word epileptic or seizures.

 

 

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Epilepsy Awareness: Musical expressions

I could not find my favorite, maybe on a good day I will be remember the name. I can feel my seizure meds working today, Woot!  So I am trembling, barley getting these keys right, hence today will be songs written about seizures, like the first three,  and songs that embower epileptics like the last two.

And my two theme songs:

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Epilepsy Awareness: Anniversaries

January 12.2014 is a very important date. It is the day after my last seizure. I have been seizure free for exactly one year and eleven months today (November 12, 2015).

I see a lot of pictures of people holding signs on the big day “#years Seizure Free” or even “#months Seizure Free,” Both are amazing celebrations. I remember celebrating by the week. Then two weeks. The first time I hit the two month was amazing. If you would have told me then that I would be 23 months free I would have laughed at you. But here I am with my hopes set high and putting trust the Lord that I will be giving Uni an awesome early birthday present…2 years, oh yea baby. But first lets get through Thanksgiving, then Christmas.

Celebrating victories, big and small, is important because it reminds us of how bad it was, how hard we worked to get where we are, and gives us hope to look forward to more victories. With epilepsy we are celebrating a safer life. A life where we have not scared the wits out of anyone in a period of time. A period of time where the people around us has seen us as human, not someone who has to be constantly watched like we are going to jump out and eat them, whahaha. The period of time that no one has come to ask if we are contagious or confirm that we do in fact have a doctor.  We are all like Woot!

I don’t know what anniversaries are like for migraines or pain free. I haven’t experienced it. The blogs I follow are informational and do not post many personal story articles.

It takes a long time to find the right balance of medicine and life style. In this respect it is very much like treating migraines. The daily preventive pain medicine is also the same as epilepsy medicine. That is weird. But they are both neurological disorders with similar causes so it makes sense at the same time. The brain is a mysterious place my friend.

To celebrate today, I did not fall down. Big victory when vertigo comes to play and flames of Hell scorch your brain. I watched a favorite movie with double vision (two Mr. Darcys wasn’t so bad–bbc version), and played with Karma (the silly-mannered dog). Mom made my favorite pork. It was a nice day.

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Epilepsy Awareness: Would you like a cup of tea? Wink, Wink.

A topic I have not seen very much talked about anywhere is sex and epilepsy. I will continue with the analogy of a cup of tea, because I like it. This is what I have gathered.

Most drugs decreases the sex drive or can make it just not as fun. It’s nothing personal, its just the medicine. This can create strife in a relationship. My opinion, if your partner can’t understand and is confused by the word no, dump that jerky ass.

It takes longer to recover from a seizure then from a migraine. If the seizure gives a person warning, from then to about three days latter the person’s body feels like it has been hit by a truck. A seizure is the equivalent to a full work out, but what should take at least an hour takes 30 secs to 2 minutes.

A person during an aura is like asking a drunk person would you like a cup of tea? During a seizure, even one that the person may look okay but is behaving a little odd, deferentially no to a cup of tea. If a person had a seizure earlier that day, just don’t ask/try. An epileptic probably does not want a cup of tea for many days. A nice snuggle maybe, but no tea for me.

It saddens me that this causes problems. That we have to have discussions about consent at all. If the person truly cares I think they will understand and not push the issue at all.

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Epilepsy Awareness: Worst First Day Ever.

I was very excited. I hadn’t had a seizure in months, so I applied to a full time position as a housekeeper at n nursing home. I got the job on the spot and started the next Monday. The day started with about four hours of training movies. I hadn’t watched that much tv without a break in years. It was also an old TV so every once in a while it would flicker. I didn’t feel so good when the training lady came to get me for lunch, which I had forgot to pack.
After lunch they had me take the residents that smoke out for their smoke. Then I felt horrible. Then the”real” training started. The person in charge of me took me to the next room on her list and sent me into the bathroom and so I remember kneeling by the toilet. The next thing I remember was siting in my managers office. She was telling me to stop answering all her questions with ok. Do you have someone you can call or not? She was not happy with me.

Rewind.  These were nurses and nurse’s aids.

I was cleaning the bathroom. I come out of the bathroom and told my coworker that I felt like I had a seizure. I then started to through up and then started to try to clean it up. All the while saying ok to every question. A nurse’s aid came and took my vitals and they decided that I had not had a seizure and I must be fine and had no idea what to do. The training person came and took me to take a urine sample. Training person came to the conclusion that I was not okay because I said I was ok no matter what the question was and that I needed to go home or something and informed my manager. My manager was not happy. I called Whitney. I was starting to come around. I had no idea where I was and was very scared. The head nurse came and chided me because I said it was a seizure but no one saw me fall down and convulse. I was very confused and had no idea what was going on. The head nurse left angry with me because I had no answers for her other then “where am I” She thought I was out for attention. My manager insisted I call someone. I called Uni. Which was very helpful because we learned that I was under the impression that I lived in the dorms, which was only five years prior to this story. Whitney says to call my Mom and if she didn’t answer or was also very far away she would come and get me. I call my Mom. The first thing I asked her was “where am I because not even Uni knows;” Mom said she would be there shortly.

On the way home in the car I had a short shiver and then when we got home I dropped in the yard and had a good shake for a few minutes. Really the only thing I remember of that whole day is the first few hours of work, waking in the managers office, and waking in my bed the next morning.

Best first impression ever. It took me about three months to get an account of what happened that day because everyone was convinced I was faking. They thought I didn’t deserve to be told what happened to me.

Epilepsy awareness is important because epileptics cannot even relay on all medical personal to be able to help them during a seizure. The stigma, misinformed,  and uninformed makes the epileptics’ life more difficult and scary.

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Epilepsy Awareness: I Passed!

I do not know if there are any differences between going to the doctor for migraine and epilepsy, so I do not know if migraine patients are given this test or a similar one. The test my doctor gives me tests my senses, reflexes, and motor skills.

The first two years I failed the brain test every time, without fail.

My first visit he asked me to sit on the table and takes out a tuning fork. Do you feel the vibrations, the cold? Then he started checking my reflexes, even the ones I didn’t know I had. Shoulder, elbows, wrists, ankles, knee. Left knee. Left knee. Left knee. He gave me a reassuring smile. Left knee, and he found the spot, and I kicked him. I apologized. Now he asks me to follow his finger. Now I am trying to touch my nose, I miss. Twice. Now my eyes hurt. He shines bright light in my eyes, I was already seeing spots, they got bigger. Squeeze my fingers.  It was time for the sobriety test. Stand up at attention. Don’t fall down as I check your balance. Okay now walk heal toe away from me. Now walk towards me. Now the doctor catches me as I start to plummet to the floor. He asked if I was alright and directed me back to the chair. The doctor said, “Okay, Thank you.”

I remembered the first time I passed.

He said “Good, why don’t you take your seat there.”

He said GOOD!

It probably helped that it was a good pain day, I had never been so excited over that word before. Good.

I walked out into the waiting room where my Mom waited for me. Before she could ask for her usual report I told her “I passed. He said Good.” She had no idea what I was on about. “The brain test, I passed.” Mom smiled and was excited for me. She might have not understood, but I think a few others in the waiting room understood, I remember seeing a few smiling faces as Mom coxed me to the front desk. After we got to the elevator she asked why we were so excited.

We went for ice cream.

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