I wanted to post this... I am a member of a parent epilepsy forum, I find alot of support and friends on this forum that completely understand what I go through, because there children are going through the same thing. This was a thread that was started, and its so true that I had to share with you all! Its gives a glimpse into how life is for my family, and others who are dealing with E! It also shed some light, to laugh for once.... Hope you all dont mind that I am sharing!!
when your daughter has a favorite EEG tech. when your other children know more about E, AEDs, and side effects than the ped. when you're invited for a water play day at the park w/your kids, and you think, "Great! An opportunity to not look like a nut chasing my daughter with the water sprayer!" (For the no-sweating side effects)
when you're glad it rains each afternoon you're at the amusement parks so your non-sweating topa-kid stays cool. when the techs ask your child where is the best place for an iv. when your child grades the tech for how well they did the iv. when you're going for another veeg and your son just hopes he has seizures (so do you!) so he won't have to keep doing them
EMU is not a bird it is a place to have seizures (and you WANT to have them there!) The last 3 books you read were on neurosurgery, epilepsy, and brain plasticity and you LOVED them because they related so well to life! Your child knows what a butterfly needle is because he/she has had so much blood work.
When you explain to a drug rep that you happen to meet at a social event, one who markets Diastat, what status epilepticus is. (true story)
When you are standing in line at the grocery store, overhear the cashier and customer before you discussing medications and side effects, and you realize that the cashier has epilepsy. You intantly have a connection and naturally follow up with recommendations learned on this site!
You are reading a non-fiction book and one of the characters gets blown up in an explosion and has to have surgery on their brain. The surgical explanation of where the shrapnel is in the medial temporal lobe and hippocampus brings vivid mental pictures to mind and you know exactly what they are talking about. BTW- Willow, it's in the new Star Wars book that just came out....
When you can never remember your friend or family member's phone number without looking, but you know the epi's number with no problem!
When you know the quickest route to the hospital in every city you travel too. When you know the EMS crews on a first name basis and they see you in the store or at events they ask how your childs is, AND remember their name. When you no longer think of magnets as the alphabet letters stuck to the fridge.
...when you run into your pharmacist on the street, and he greets you as if you're his best friend (after all, you're single handedly sending his children through college).
...when you see a woman on the train reading a book title "Releasing your Inner Physician," and you're thinking, honey, my inner physician was OUTED long ago! ...when you get a happy anniversary PM from a friend, for the anniversary of having joined this site! : )
when you have to make 3 phones calls, instead of the usual 1 to call your child in sick!!
...You get grumpy when you get a test tube with an ugly-colored top (I am NOT a fan of the orange-and-gray one). ...You hear a joke in a TV show about an obnoxious Hawaiian shirt possibly causing a sz, instead of laughing you think, "Actually, it probably *could*." ...U.S. Customs has suspected you of being a drug dealer. ...You see "scrambled eggs" on a restaurant menu and wonder who on Earth would have an EEG at Waffle House. ...You earn frequent-flier miles on your insurance card. ...You write a restaurant review of the hospital cafeteria for the local newspaper.
When you are thrilled with your child's new best friend because his mom is a doctor who has extensive emergency room experience so you feel comfortable sending him to her house for a sleepover.
when you visit the pharmacy at least once a week and the cashier knows your name childs name address and phone number by heart... ...when your 2 year old says mmmmm when u pull out a poon full of tegretol and keppra and will give up her juice for it.
When you go to the ER for the bizillionth time and your 3yo expresses his preference between the hard plastic and fabric pulse-ox reader for his finger, pointing to the fabric/band-aid one saying he likes it better than the hard plastic paper clip type currently on his finger!
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