Freak, Weirdo, Monster Epileptic- What's Your Label

The power of a word, the power of an illness is something few in our society understand first hand.
As I live each day my goal and very strong feeling is I AM NOT EMBARRASSED. If I was embarrassed I would go NO WHERE except doctor appointments. I go to BBQs, dinner, shopping, birthday parties, grocery shopping, pedicure with a friend, kids events and so much more. I only miss if I am at a doctor appointment OR I am literally incoherent after an event. Give me 40-60 minutes and I am there! Sometimes I maybe feel unsure or uncomfortable - what if I have a seizure here. This maybe a year old but there are events where it still is new. I take a minute maybe discuss it with someone with me and then just move on.
Everyone doesn't feel like I do. Some people are absolutely amazing and don't seem to be phased a bit. There is another group that is honest straight up and says OK explain this too me, ask questions and learn the process. The last group comes across as terrified- either straight up to my face or round about.
I have spent years doing things to show others that I am not "normal". I have had various piercings, I have gotten tattoos, worn my hair different. My clothes are rarely the typical runway fashions that year. I have never had much trouble speaking out for my beliefs- popular or not. All things that put you in a "different" group.
My newest group and label EPILEPSY has brought out emotions and fear from people that somewhat surprises me. I know it's scary. I have said Epilepsy was one of my greatest fears. After the past two weeks I feel like a Monster. A real life tried and true monster. Before you feel bad,  stop. I would be lying if I said I liked it- BUT what do you think is an underlying message of the tattoo culture, pinup world, especially the fame and fortune of vampire and werewolf books - even the summer hit Shades of Grey. All the listed are things I admit to love and enjoy. All include monsters, freaks, weirdos, whatever.
I have a list of tattoos I have really wanted badly. I have dreamed of one for years. I haven't understood and actually quickly disliked its popularity so I dimissed it. It's a sugar skull. Their meaning had no obvious connection to me. After the past year/week or so, I looked at a hand painted sugar skull I received as a gift from Brett many years ago. The vision I have had of the skull, flowers, anger, happiness and health I realized is my visual of epilepsy. The image I have seen for years, talked about. I didn't understand it and refused to use the image until she meant something and spoke to me. She is terrifying to the undiscerning eye yet when you look deeper yes there is torment (illness) shrouded in wonderful beauty (love, friendship, kindness and wisdom).
We miss out on so many things watching our own thunderstorms and basking in our own glory. Don't wait to find out what your Monster is- love it, embrace and make her your beautiful. Those important will embrace her no matter how scary she is because her strength will shine through.

My Epileptic Day- How does it sound?

Ok. I just finished a seizure about 30+ mins ago my speecj is still gone anf I am really f6ying hard to not sqre2 uup my wordß. I thinl people want t9 kñow goow i funxionafte4.
This one happemed bc 7 got to hot i think.i wàspicking u0 and all the suddem breath waa bsf likevdog pamti g. Laid dowm bret5 got shot and held on to mr. We were Hobbs video becausr it wld answer lots of questions. Brett was so busy holdomg me still it didn't happen.
So I am going to try to translate what I said above. OK. I just finished a seizure about 30 + minutes ago. My speech is still hone and I am trying really hard not to screw up my words. I think people want to know good how I function after.
This one happened because I got too hot I think. I was picking up and all the sudden breath was bad like a dog panting. Laid down before Brett got shot and held on to me. We were going to video because it would answer lots of questions.  Brett was so busy holding me down it didn't happen.
The above was after my second seizure today. I am typing all of this about 3 hrs after it ended.
My first episode was odd. I woke up used the bathroom and for some reason didn't return to bed. I jammed between my big and middle toe very hard on something unknown. I am not sure what I hit it on however I was near the refrigerator and thought last time this meant seizure. I did an ativan injection and sure enough. Luckily once it was over I went back to sleep a few hours. My left food and leg- not really sure what hurts. My quad muscle is sore but the ankle is very tender as are the toes.
My struggle for now. I have increased the Keppra to 1000mg 2x a day this morning. Brett needs to work this week. My son goes back to school. What do I do now? I can't be alone. It's to dangerous. Its overwhelming to think I need a babysitter, and one that can not just watch me but is strong enough and willing to do what's necessary.
I need to get a paycheck coming in. My prescriptions alone require that I have some money coming in. I feel like my brain is shut off or fuzzy all the time- side effects yet again. My body hurts. There is no other way to say it. Too many seizures too close together and it all hurts. I am worried I have injured my ankle but hopeful no swelling is a good thing.
This is epilepsy for me today. Confused, concerned, lost, hurting.... not feeling easy today.