Month: May 2013

New Epilepsy Bracelet

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New bracelet from Tracy Tayan Designs (www.tracytayandesigns.com). It’s so pretty! I love it! ๐Ÿ™‚

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Back From the Hospital

Some of you may be wondering what happened since I got out of the hospital, or what the results were and so on. Well, because I didn’t have any seizure activity in the hospital, they didn’t have much to work with. We’re going to wait until January 2014 (that will be 2 whole years seizure free!) ย and then they’re going to slowly take me off of my medication and see how I react to that. I’m really hoping that I won’t have any seizures and that I’ll stay seizure-free without the medication.I’ve been on my meds now since the summer of 2009 and they’ve worked really well.ย  I’ve only had a few break through seizures since starting medication. The last grand mal seizure I had was in December of 2011 (I had 3 in a row) – so I’ve been 18 months seizure free.

I’m also going to be 16 in January so driving came up (because my mum asked about it). Personally, I think driving is a bit scary and I really have no desire to get my license. So we are going to wait until I’m 17 and revisit the topic. In the meantime, I have lots of friends who can drive me around. ๐Ÿ˜‰

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Although there wasn’t any change resulting from my hospital stay (I was hoping the doctor would said I could go off my meds right away), something nice did happen. I had the opportunity to meet with the clinical psychologist who works in neurology at BC Children’s. She was awesome. The doctors were wondering if I was maybe having anxiety issues that were contributing to my headaches and symptoms. Anxiety disorder often goes with epilepsy (for good reason). But after 3 sessions with her, she said I have no signs of clinical anxiety. But she did give some great suggestions for reducing stress. She recommended that I start a yoga practice (which I’ve wanted to do for a while now) and join a mindfulness/meditation group for teens (but I seriously doubt there is one where I live – we are pretty rural).

Anyway, I’m happy to be back home and (believe it or not) back to school!

Supporting Each Other

Around 50 million people in the world have epilepsy. Most people who I’ve met with epilepsy have a very positive outlook on life. I’ve talked to a whole range of people – from those whose seizures are well controlled to those who are still hoping to find a way to control their seizures. I’m inspired by the way so many of those with epilepsy don’t let their disorder get the best of them.

Sadly, I’ve also talked to some people who have a very negative outlook on life due to their epilepsy. Some of them are very bitter about the way they have been treated due to the stigma associated with our disorder. I know I’m lucky in that my epilepsy is currently very well controlled. I’ve talked to many others who are not as fortunate as I am and some of them have told me that I don’t understand what it’s like for them and that I’m being an idealistic kid who doesn’t really know how limiting the stigma can be.

But I think the key to ending the social stigma associated with epilepsy is talking about it and educating others on what epilepsy is all about. With Sandpaper Smiles I’m trying to connect with people who have all kinds of epilepsy, people who are down about it and people who don’t mind having it, and even people who don’t have it. I want to form some kind of mutual understanding that in the end we’re all human and epilepsy certainly doesn’t change that.

Some people really don’t believe me when I tell them that they aren’t alone. The fact is that there are many people with epilepsy who are hurting and feeling abandoned and alone. I want them to know that they really aren’t alone with this disorder. There are many others out there who care about them and are here to support them.

Hi Everyone!

I’m Caitlin, I like writing, drawing, painting, music, the sunshine, I love helping people and I have epilepsy. I’m 15 and I’ve had seizures since I was 2 (so that’s 13 years if you feel like doing the math). I decided to make this website because I think it’s really important to know that even though you have epilepsy, it doesn’t separate you from people or change who you are. Whether it’s a big part of your life or a small part of your life. Whether you yourself have seizures every day or seizures once a year. Or maybe you don’t even have epilepsy at all but somebody you love does! It doesn’t make you a worse person, it doesn’t make you a better one. It’s just part of who you are. Yaaaay!