So why did I choose the name Sandpaper Smiles? Well, before I get seizures or sometimes when I’m feeling, dizzy, out of it or just plain nasty. I’ll get what’s called an aura. It basically is a visual warning, letting me know that a seizure is coming on.
The first time the doctors asked me what my aura looked like I didn’t know what to say. It doesn’t really look like anything, it’s more the unpleasant sensation. But the only thing I could think of was sandpaper. It looked like indigo (purply blue) coloured sandpaper.
So I decided to call the blog Sandpaper Smiles, because even though the Sandpaper aura isn’t the greatest feeling in the world, smiling takes the sting out of it (and your family gets a little less worried if they see you’re smiling and not hurt)
Also I think the Smiles, signifies the fact that even though we have (or know people who have) epilepsy, it’s not the end of the world. There will always be happy things that make you smile and having epilepsy won’t ever change that.
One of my pet peeves is how people use the term “epileptic.” It irks me when it’s used to describe people with epilepsy. I am not an epileptic. I’m not defined by the disorder I have. I’m many things: a teen, an environmentalist, a vegetarian, a guitar player, a female, a Canadian, a girl. And I happen to have brown eyes, brown hair, straight teeth … oh, and epilepsy.
Epilepsy is a part of who I am. But it’s not more than that. Maybe I’m being overly sensitive here, but I just think that when one describes oneself as an epileptic it has the potential to limit them from seeing themselves as anything more than someone who has seizures. And I’m not saying we shouldn’t talk about it – in fact, I think it’s really important to be open and honest about my epilepsy. But at the same time, I don’t want to be defined by it. I have epilepsy but I’m not an epileptic, I refuse to be defined by my disorder.
So it’s been almost a month since I went off Topirimate and I’m feeling great! I’ve never felt more myself! And although I’m super happy that I’m off the meds, there have been a few drawbacks.
I’ve been getting more seizures, and therefore stressing myself out and making my family and friends worry about me. It’s not really the seizures that are the problem though. I’ve been getting progressively worse migraines.
Yesterday I arrived home from a fantastic trip to Vancouver with some kids from my school to go to We Day! If you don’t know what We Day is, I encourage you to visit any of these websites: http://www.weday.com, http://www.freethechildren.com, or http://www.metowe.com. It was an unbelievable day and I’m so grateful that I got the opportunity to go! I was so inspired and I can’t wait for the great things to come ahead.
As of yesterday I’m completely of my meds! It was a bit of a concern travelling when I was still weaning, but it wasn’t an issue and I wasn’t going to miss it even if I had one or two seizures. The only thing that was a bit hard was how my parents were a bit nervous of me going and a bit nervous the whole time I was there. But I had an incredible time and I can’t wait for future trips!
If you didn’t know already I have been slowly weaning off my pills since, like, mid-summer. I’ve gone down to only 25 mg a day of Topamax, which practically doesn’t even work for seizure control. So going off is getting kind of hard. I’m getting a bit sicker but I think that possibly after I get completely off it I will feel better. That I just feel sick because the drugs are still in system and I’m not used to the lower dose. I stop taking all medications this coming Saturday.
Over the past couple of months I’ve had a number of seizures. Most of them complex partial but some grand mals in the middle of the night because I’m just sleeping and stuff but then I wake up which is pretty scarey if you ask me. But at least I’m not having a gillion seizures a day or anything.
Even if I have a load of seizures off my meds, I feel like I’d rather not be on any meds because of all the side effects and I think putting something that’s not totally natural into my body is probably not doing it really good. Plus having a seizure once or twice a month isn’t so bad. Compared to like all the side effects I got. Not to say that if you have to take meds that’s like a bad thing – you’re still being really strong and not giving up and stuff which is like really cool.
I’m sorry that I haven’t blogged in a really long time. But I hope that even though this is really tough this is not the best blog in the world it will remind you all that you have friends who care and stuff. Also, I’m a bit whacked out going through withdrawal and such so I apologize for my overuse of the words stuff and like. But as I’m reading this out to my mother (she is my scribe) this is just in my regular lingo so … um, it’s kind of awkward but thanks, Mum, for typing this out.
Anyways, I hope that everyone is having an awesome, like, start of the school or work year. And that they don’t give up on themselves. As a wise man (or maybe it was a woman) once told me: you have epilepsy but it doesn’t have you!
I’ve been really lucky because I’ve never felt totally alone with my epilepsy. Nearly every school I’ve been at there has been another kid with epilepsy in the same grade as me. It makes me kind of sad to know that there are kids with epilepsy who’ve never met any one else who has epilepsy.
There are kids (and people of all ages) who think that they are all alone with their disorder and there’s no one else who understands it the way they do. Not only do some kids think that there’s no one who understands epilepsy but they believe everyone in their lives looks down on them because of their epilepsy. It’s the sad truth that there are some people who can’t see past the epilepsy to the fact that there is so much more to a person. But there are a lot of people, who once they understand what epilepsy really is, don’t let it affect their perception of a person. I know this because I have a lot of friends who know about my epilepsy and who are supportive and treat me just like any one else.
So I’m really lucky. Besides all of this – and how strongly I believe we need to put an end to stigmas associated with epilepsy by raising more awareness of what this disorder really is – I believe the internet and social media are very, very useful tools to connect youth, and people of all ages who have epilepsy all over the world to let them know they aren’t alone.
New bracelet from Tracy Tayan Designs (www.tracytayandesigns.com). It’s so pretty! I love it! 🙂