my-epilepsy

I almost did all of April without a seizure. But unfortunately yesterday I had one at lunchtime. I was so disappointed. I nearly did six weeks without a seizure. That’s the longest time since the first nearly three months after the surgery. But I didn’t get excited, I wasn’t hopeful for no more ever, I was just hoping I could make it through April.

The seizure came on top of some disappointing news from a job interview I’d recently attended. I didn’t get the job. And it was the first job I’d felt a bit confident about after I left the interview. Both people who interviewed me were really friendly and seemed to be really interested in everything I had to say. And when I left one of them sad she hoped she’d see me again. So I left feeling I had a chance. I don’t often leave interviews feeling that pleased. I just received a stock standard thanks but no thanks from HR so  am going to contact them today to get some feedback.

Today I am also going to contact a recruitment agency for people with disabilities. I did a lot of research for the job I just didn’t get, and one of them was the recruitment agency. There were lots of testimonials from a wide variety of people with disabilities, with great jobs, one woman even said she was a social worker! I don’t see why I can’t have them help me find a job. I don’t know how well they are working in today’s climate but I would definitely not feel nervous talking to them about epilepsy.

So I feel quite positive. Except for the upcoming weather. Tomorrow’s maximum temperature is going to be 7 degrees! NO!!! But we do have the heater on in the house now which is delightful. But my dear husband reckons 7 is nothing, not cold. But I promised I wouldn’t complain. I will be tough. Maybe. I’ll do my best!

Well we’re certainly living in a new world. Lilly is working online at home for school. Today is day 3. She seems to be taking it well. I do see how distracted she gets. What every teacher she’s had since Kindy has told us. But she has some great ideas and is certainly happy to speak up and ask questions and give feedback. She has a daily Zoom meeting with her teacher and the rest of the class. So that’s great.

I’m almost three weeks since my last seizure. Dr Wong called me and told me to get a blood test to see what the dosage of Tegretol was like. I had a chat to Jenine at POW and she said yes definitely do it, it might increase the dosage and turn one seizure a month into 0 seizures! So I made an appointment with my GP here and it was by phone only, and she emailed the request to Dickson Pathology. I felt a bit nervous going there, but when I got there it was fine, there was no one there. Haven’t heard back from Wong or the doctor here. Will call Dr Wong today.

I had a drink with a Sydney friend on Saturday night, by FaceTime on our phones. The only way to see a friend. It was fun. I was thinking how life hasn’t changed so much for me, because I didn’t get a job, wasn’t socialising much because I don’t really know anyone. So it must be a lot worse for my husband and daughter. And everyone else. So in one way it’s good I guess, but in another way it’s sad. I am not seeing Stephen’s family or my next door neighbour. But I never managed to get myself more friends yet to miss. Still miss my Sydney friends.

I’m going to head off and keep looking for jobs. There aren’t many. No surprises there. But doesn’t hurt to look. Bye!

Wow I definitely took a long break. So much has happened I don’t know where to start. I won’t be able to cover it all on this post. Do I start where I am now or where I was when I last posted? That’s tricky! Maybe I’ll just start where I am now.

As the rest of the world knows, we’re dealing with CoronaVirus. Fabulous. Lilly, who’s 11 now and is in Year 6, is being home-schooled by me. Me who has no paid job. Why? Because we now live in CANBERRA. We moved here in November. Stephen got offered a terrific job and I was a lovely supportive wife and said sure. Lilly was excited. With all the ridiculous roadworks going on in St Peters, we were all pretty sick of the noise, the pollution and the annoyance. I had a job I liked, looking after people wth disabilities. But I felt that I would be able to get a job easily here. I was so wrong. Because of the public transport being not so available here as it was in Sydney, organisations either want you to have a car, or a licence, or other jobs I’ve had interviews for I’m not experienced enough.

Canberra is nice otherwise, everyone is friendly and it’s nice and peaceful. I’m pretty scared of Winter – it will be freezing! But if we are still not allowed out, then it may not be so bad. But I’d rather be freezing. I’ve got a job interview in two days but I have a feeling they will be calling back about the fact that I don’t have a licence. Therefore no interview.

Seizures – I had the surgery I may have mentioned last year. I had a Stereoelectroencephalography (SEEG) almost exactly a year ago. That was an EEG where they placed electrodes inside my brain to see where the seizures were coming from. They shaved all my hair off.  I was very concerned about all of that but it’s growing back. Then they informed me that I could have a stereotactic left frontal awake craniotomy and resection of the anterior insular cortex.  This happened in July.  I was woken (planned) during the surgery and asked to talk, because where they were operating was very close to the area in my brain where my speech comes from. AAAAHHHH!

I recovered very quickly from the operation. I went home and rested for six weeks. I didn’t have a seizure for almost three months and thought “this is IT! I’ve conquered epilepsy!” The neurosurgeon had told me there was a 50% chance that I would have complete freedom from epilepsy. However one weekend Stephen looked at me and and soon as I saw the look in his eyes I knew what he was about to say. And I was right. I had had a seizure. I’ve had 14 since the operation. They’ve all been short complex partial ones. In eight months. Considering I was starting to have at least one a week, and more than that before the operation, I think I’m going OK. The last one was just over a month after the one before. So, a little disappointing but at the same time pretty good. If that makes sense.

Job interview this afternoon has been “paused”. BOO!

Hopefully I’ll be back soon with more tales from the last four years! And happy epilepsy awareness day!

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 🙂

Wow once again it’s been too long. I do have an excuse for some of the time though, as you will read shortly.

Still about ten days on average between seizures. No change there. However I did have the seizure of all seizures, and it is only now, three months later, that I can talk about it without getting emotional.

One night back in February I was cooking dinner for my daughter, eggy bread, or egg in the nest as we call it, with a big heart shaped hole cut in the middle of the bread for the egg. Frying away, which I’ve never considered a danger, until I had a seizure (I don’t get auras). I lifted the frying pan off the gas stove, with my pinky finger lingering in the flame, then just stood there in the kitchen holding it for a while, until I decided to put it on the floor. Of course feeling nothing, because for some reason all senses are turned off during a seizure. Little Lilly was watching this with curiosity/fear/concern and then realised what was happening and ran to get daddy. At this point I was apparently lying on the couch with my hands in the air. I think, I’m not sure. Anyway they took me to the sink until they realised perhaps hospital was the place to be. My first memory was sitting in the car with my hands cooling off at the air-con vents.
RPA, our closest hospital, ran cold water over my hands until they were numb, then gave me some amazing pain killers and sleeping tabs and said to call Concord hospital first thing in the morning. They are the burns people.
Three days later I had a skin graft operation on several areas of both hands. My right hand was/is much worse than my left hand. And of course, I’m right handed!
So, that was early February. In May now, I have a perfect bandage free left hand with just a few scars. My right hand some fairly ugly scars and a very ugly pinky finger with no fingernail :-(. My challenge is to make a fist with the right hand which I still can’t do. But I am motivated, I have some painful exercises to do but I’ll get there!!
And the good news is….I am not allowed to cook anymore! 🙂 Got to find positives, right!? I’m just starting to clean now, which as silly as it sounds, actually pleases me because for a while I was unable to do anything at all. I was sending text messages with my feet!
Anyway there’s my big seizure story. My husband was wonderful taking care of me in the first month or so when I was absolutely helpless. And my daughter is also very sweet and supportive. I couldn’t have got through it without them.
No doubt, with the dreadful inconsistency of my posts, by the time I write my next one, I’ll be fully recovered. Bye for now!

About week 3                                                                      About 2 weeks ago!

It’s Christmas eve and today I had my first seizure in two weeks which is pretty awesome. I think I jinxed myself though by admitting to a couple of people that it has been “ages” since I’ve had a seizure. It seems to happen all the time whenever I do that. My new policy is to just keep my mouth shut. From now on, if someone asks about how often I have them, I’m just going to say, oh it varies.

Im still transferring to topamax and lamictal, and I’ve noticed that now that my topamax dosage is increasing, my ability to speak fluently is decreasing. (And yes it took a while for me to come up with how to say that sensibly, and I’m still not sure it makes sense :-). Seriously though, I get stuck more often in the middle of a sentence on a word that I just can’t think of. Words as simple as “president” or “Bluetooth”. And I remember this now, from previous times I’ve taken topamax. But hey, less seizures and sentence struggling is better than more seizures and word memory. But ask me that again in March when I’m back at uni and words are very important.
Anyway, merry Christmas and happy new year! We’re enjoying the heat of Brisbane but also the pool at mum’s complex (except of course today was not a good day for me to swim so I sat on the side and watched the fun). Lots of food tomorrow no doubt then of course back to the diet- hahahah!!!!

Well this is the third time I am writing this post. This keeps crashing I don’t know why – maybe it’s cos I’m using my phone. But it’s nearly 11pm so I’m not taking any chances. So this is a boring comeback post but just wanted to say two seizures today- ten days since last one. Cos changing drugs was hoping for more time between seizures but I’ll get there when I’ve made the full switch. Gotta think positive! And now that Lilly is older she is awesome in her support. Hardly ever gets upset now. Just explains it to me afterwards the way Stephen does. Like this morning, she described the way I ran to the corner of the dining room and hid when she got out of bed. She just thinks it’s kind of funny now, but at the same time she knows she has to be there for me.
I was going to go on about uni, considering it’s been two years, but I’m too worried the post will crash. Let’s just say I’m enjoying it and am sure I made the right decision. Two more subjects to go. 😀
Ok enough for now. More later.

Merry Christmas! Lilly’s gingerbread house !

Wow. I’ve really taken a break haven’t I? So much to catch up on. Well. I’ve been at uni for two years. Nearly finished. Two subjects to go! Then I’ll be a social worker. And I’ll have to work. Work? What’s that? Seizures still occur as per usual. I went on a drug trial for nearly a year and it did sweet f.a. I’ve asked to try topamax and lamictal again and the weening process is very slow but it’ll eventually finish. Lilly has nearly finished her first year of big school!!! Such a grown up girl now. I promise I will start sending regular posts again. Bye for now!