my-epilepsy

So the other night my husband and I were comparing the number of seizures I had after the skin graft operation last February and also how many I’d had since my finger operation. In both cases they’d reduced significantly. We wondered if it had something to do with the strong pain killers I’d been on. When I went to Prince of Wales the other day I mentioned this to the woman who is in charge of my VNS, and she said no, it’s actually general anaesthetic that can reduce seizures for a couple of weeks in some people. And interestingly, the reverse effect on others. I found that really interesting and so of course now would be quite happy to have a general anaesthetic once a fortnight or so to stop the seizures 🙂

So it was nearly two weeks between my last seizures and I am pretty happy about that. I had three within two days this time. The first one was walking Lilly home from after-school care, and I am describing it for two reasons, one because of the kindness of strangers, and two because of the cleverness of Lilly (again). Lilly got quite upset apparently, mainly because she couldn’t sit me down anywhere which is what she likes to do if I have one. So she found a woman on the street and asked for help. She gave her my phone, and somehow (I’m still not sure what the conversation was) my mum was called and Stephen was texted. By the time all that was done I had recovered, so we found our way home. I’m so glad Lilly had the sense to ask someone for help, and the someone was a person nice enough to do so. But I was still a little confused, and had told Stephen that a friend of mine would be driving us home (who I worked with, but he had gone home hours ago and why we would need a lift I have no idea because we were one street away from home). Crazy brains, right?

One of the other seizures was kind of funny. I was picking up Lilly from school, this time at the normal 3pm, and I have no idea when the seizure came on or what I did, but when I came out of the seizure I remember sitting on the steps in the school playground surrounded by about four teachers all looking down on me. I felt like a naughty school girl! Kind of embarrassed by this one simply because I don’t know what happened during the seizure. And I can do some pretty weird stuff sometimes. Oh well, there’s nothing I can do about it. As long as it doesn’t affect Lilly’s schooling 🙂

All for now, bye!

So, the fingertip is gone! Lilly renamed the pinky Calo, which stands for Cool Awesome Little One. And it is little indeed. It was supposed to be operated on yesterday, but last Monday the hospital called and asked if I wanted to do it that Friday. My first reaction was no, too soon, and I was supposed to be going out for dinner the following night with Stephen for our anniversary so we wouldn’t be able to because I’d be on painkillers that wouldn’t allow me to drink (priorities!!). But my sister was with me when I got the call and basically told me not to be so ridiculous, surely we could have dinner the following week. She was right, of course.

There was another issue though. My Vagus Nerve Stimulator (VNS) needed to be turned off because it is not able to be active during general anaesthetic. I needed to get to the Princes of Wales hospital to have it turned off but I knew the woman in charge of it was on leave. Luckily I managed to find someone else to do it in the meantime. So I was booked and off I went on the 4th March!

One interesting thing happened after I had the VNS turned off. I had a seizure and apparently it took me a lot longer to recover. This I feel proves that the VNS is good for something. It doesn’t reduce my seizures but it certainly helps me recover quickly.

So all is good right now. I’m working on a job application right now that I’m feeling positive about, but I’m not saying anything more! My finger is recovering well; the stitches are coming out on Monday. Then following that on Monday I’m going to POW to get VNS switched back on, and to discuss getting copies of all the MRIs, EEGs etc that I need to take to Brisbane (which is only three weeks away!!!).

Stay tuned…

CALO – still healing

Hi! So it’s been 10 months, how’s that for a gap? Mind you for a while there I couldn’t type due to that hand injury. So! What’s been happening? A lot really. My hand got mostly better, except for my little finger on my right hand. That little fellow is getting partially removed next Friday. Basically because it’s just a nuisance. Gets in the way. It is permanently bent from the rest of the finger and will never straighten. I’ve spent the last year exercising that hand and it’s improved a lot except for little Loo (Left out one; Lilly’s name for it). So that’s kind of exciting in a way. As weird as that sounds.

Next month I’m going to see a neurologist in Brisbane to discuss the possibility of brain surgery to remove my epilepsy. I’m trying very hard not to get excited because there’s a very good chance I won’t be eligible, (is that the right word??) but you never know. That would just be the best thing EVER!!! Oh whoops I got excited. Anyway. So yes anyway it’s just a chat to start with.

I have much more frequent seizures these days, at least one every 6-8 days. But I am still recovering pretty quickly after each one. I’ve finished uni, and still trying to find a job. I would like a hospital job but most of them want someone with a driver’s license. In the meantime I am working at a local cafe which is fine- they’re very flexible and accepting of my epilepsy. I had been a customer for a long time before I got the job so the manager had even seen me have seizures before. And yes I’ve had a few there. The best one would have been when I told a customer their bill came to $47,000 please. Classic. Luckily they are a regular so it was all explained afterwards. 🙂

So that’s me right now. Our house is getting renovated so we’re living in a little flat in Newtown. I can’t wait to move home back to our lovely street to a beautiful new house, only a couple of months to go.

I’ll try and start regular posts again. ‘Try’ is the operative word. I really will though. Lots to update, with finger surgery and brain surgery etc!!

Bye for now 🙂