girls, interrupted
sela is taking centre stage. her hydracephalus is causing concern. (not enough concern that she can get an ultrasound before march 15, but apparently, concern.) her fontanel area is swollen and spongy looking. because she is follicly challenged, the swollen area is very visible. it looks like something has expanded under her skin and is pushing its relentless way to the top of her head. sela is also vomitting, whenever she hits her head. as you know, sela has always been a vomitter after meals, but for the past two weeks, she is always vomitting after she hits her head. but this is anytime, and a clear expulsion. so, the worry licks at the back of my stomach, and i wait for march 15.
as for me…
this uncertainty is driving me mad. i wake up in the morning with cold fear. i don’t know if i am going to be having petit mals. if i am, the day is pretty much a write off, when i am able to talk without dropping the phone, i cancel my day’s activities. if i seem to be functioning normally, i think, great! and proceed on with my day. except then i face the risk of being halfway to lunch like i was today, having to cancel, and rush home to bed. and the lunch was with aloo gobi richard, to add insult to (almost) injury.
i can’t plan anything. i am getting quite adept at deleting plans, however. i can’t have a life. i have never experienced this continual uncertainty and fear. i have so much respect for the epileptics that do have uncontrolled seizures and still have a life. they really are remarkable.
this uncertainty is what bothers me most. i have no idea why this is happening now. i am taking my medication. really. i have never been on this high a dose, ever. and i am so tired of fighting the weight gain/increased appetite that accompanies one of the drugs i am on. wasn’t losing weight from triplets enough to prove that i can do it?
this uncertainty, these days of "now we pick up the petit mal seizures from where we left off yesterday…" is so exasperating that i almost, almost feel like stopping my medication and bringing on that grand mal that is lurking in the back of my brain. the forgetfulness, the sore and swollen tongue, the tell tale horizontal red line around it where it was bitten, the aching joints and cramped muscles, possible bruises…it almost seems worth it if it would get this seizure out of my world. my plans.
i am going to see a doctor. this is a big thing for me. epilepsy has always been something i have been ashamed of, (i think it is the "fits" thing…i hate that word, but then again, i hate the word epilepsy. it is an awkward word, and i have always thought that. too many p’s and that l in the middle of it…)
but i am going to see a doctor, which means i will acknowledge i need help and i will talk and tell what is wrong. i will cringe when he asks if i am having "fits", but i will be honest. i don’t need to be embarrassed, i know this is not my fault.
anything has to be better than this raging uncertainty.
