Monthly Archives: November 2016

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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Epelespy Awareness: #DareToMedicate

Sadly, we do not have hypo-sprays like in Star Trek. Taking medication sucks. Medication controls our lives. My alarm goes off and I have to take my pills no matter where I am. When I was on one that said with a meal I took it in public, when I was a guest, at home, in the cafeteria.

The first time I was on a medication that I had to eat with a full meal I was an undergraduate with a meal plan. It was a small campus. The whole student body got at least glimpses of me popping pills. The rumor was I was bold enough to pop pills where even administration could see. I was so hooked I couldn’t to discrete.

I was concerned so I I got a doctor note and filed it with the school nurse. The nurse and I ended up becoming rather antiquated. Then I was fed up and started answering the question with a yes, I am technically a drugy. A few months later an administrator saw me have a seizure. The rumors were getting juicier. I was called into the campus student relations office and questioned about my drug habit then threatened to be kicked out of school. My response was rather sassy. The nurse was very upset.

Ever since I started taking pills I have been told or it has been brought up by every type of person around me. Yeah, I take three daily pills and get injections every three months. Yeah, I am maxed out on one of my medicine and another one is a higher dose. No, its not to many or to much. If it was my neurologist would not have prescribed them. No, I do not want your opinion of which medicine I should be taking. Oh, you know better because you are a medical professional? That’s interesting, I’m a professional patient. Making their opinions made about a persons chronic condition that are demeaning are rude and uncaring.

The worst was when my first time I met my step-grandma and every time I have seen her first. My grandpa told her all about me because she is a retired nurse. She has it in her head that she is the only person who knows what we should be doing. According to her I am still sick because my Grandma was horrible, our family is not faithful to God, my doctors are stupid, and I am not on the same medicine as her granddaughter.

I think the only time it was appropriate was when my Mom and grandmas talked to me about how they were concerned when I first had to start taking daily medicine. It was new to us and Grandma had talked to her pharmacist.

These instances are hurtful because people who should be unrelated to that judgement call is questioning you ability to makes judgment calls about your health management. Not just yours, your doctor’s and care givers abilities and credibility.

#DareToMedicate Dare do what we need to do. We need to take pills to function, have a sliver of control over our bodies and lives, and have a little peace of mind. DareTo make them uncomfortable and remind them that their good health is something that is taken for granted and could be taken away.

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Epilepsy Awareness Month: #DareToWork

Work sucks. Employers know the loop holes and take advantage of them. It makes it hard to work up the courage to even try sometimes. #DareToWork because giving it a shot is worth it. #DareToWork because people lucky enough to work needs a wake up call.

I have received a summons to the boss’s office to every job I’ve worked save one. Each time it was after I had a seizure at work and after I missed at least one day without being able to call in before the work day started. Seizures at work meant I did some crazy out of character stuff, wonder around, and dropped shaking uncontrollably without remembering a thing. Calling in before the work day or shift means that my seizure had begun right before I had to leave for work. This means I was physically incapable and alone. Also meant I could be hours late for work or not show up until  the next day and not realize it.

Long story short. My nurologist had just changed my medicine and I notified my supervisor. I was two hours late for work. I did not come to my  senses until I had been there typing fffffffhhhhhhhffffffflkkj jiofjssssssssijjfffkkkkkkkkssssssssss for several hours. I had gotten into the shower in my work clothes and didn’t dry off or change. After lunch a student complained about not being notified that class had been cancelled. I got an email from my boss about the same time I came to my senses. “I’m cold. Why am I wet?. How did I get here?” My memory of the rest of the day is very sketchy. A few weeks latter when I got to work my pre-seizure behaviors started but it was not noticed until about two hours latter when class started. I sent students to the office three times, could not communicate, and was unprofessional. About twenty minutes after class I dropped. I don’t remember much of the day.

I got a warning that if I skipped classes and behaved disrespectfully or unprofessional again I was going to loose my scholarships and be fired. If I could not do these I was not fulfilling job requirements.

At my next job was cleaning a nursing home. My manager could not figure out if she could legally fire me. And it got worse after I had a seizure at work. She got other employees to complain to me/administration and pressure me to quit. People in my department, nurses, and aids. After two months the residents began bickering with each other about it.

The manager and assistant manager started giving me a reason I needed to quit every time no one else was in earshot. I got in trouble for crap reasons and got a pay cut. I decided she was firing me. I was disappointed when my Botox  doctor made me quit. Botox lowers your immune system and he banned me was chemicals. I tried to give notice through the end of the month, so my coworkers schedules wouldn’t change, she didn’t let me. Wrote down no notice.

Remember I had one employer who backed me up? I cleaned banks for four years. I worked 10-12 hours a week. My manager respected the doctors recommendation. It was a company that has contracts with the bank. The bank allowed three of their fluorescent lights start flicker. I seized. My manager called the bank. He he said, “My worker has epilepsy, she had a small seizure. These (specific ones) needs changed before she can come back to work.”  The bank’s legal department had a tantrum. Was sure I was suing. I had to refuse a meeting at the bank, suggested somewhere else. They saw it as a sign of war. It took two months to change three light bulbs. The lawyers had to reach a settlement. I signed a contract, if they changed the light bulbs I would not sue. I had to refuse to go to work. I thought I was getting fired. No, I got my banks back and paid vacation. They had ligament grounds to fire me and the boss called to assure me that I was not getting fired.

There are awesome employers. It is sad that they are so hard to find. #DareToWord because a good experience is possible. #DareToWork because sometime managers or basses need to be taken down a notch and be to told to take that job and shove it.

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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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Filed under #DareTo, awareness, epilepsy