It’s our 7th anniversary together! And it’s the first full year that we’ve spent together with Epi. Can you believe how quickly time has flown?
Over the past year, you and Epi have once again subjected me to numerous EEGs, including a 24 hour video one. The brain fog and memory lapses that you two bring along even made me forget half of a test that I wrote which was quite disturbing at the time. I’ve learnt to take this in my stride now though so it doesn’t bother me as much as it used to.
I’ve also just learnt from the neuro that as a result of trying to keep you well behaved, I have developed nystagmus which is most likely from all the meds that I take to keep you satisfied. I know you don’t like sharing me with others so you’ve brought this on yourself.
You very clearly showed that you don’t like sharing me when I had my wisdom teeth taken out and you wouldn’t stop bothering me for almost three whole weeks. I know that you think that you should be taking centre stage but sometimes I do need to take care of the other parts of my body. And you obviously don’t think that taking control of my abs is enough because now you’ve taken over my right shoulder too. I’m sorry to say but you are being quite selfish and we all know that no one likes a selfish person.
Once again I’d like to thank you for not getting me any special gifts this year, you know how I feel about those. The neuro said we most probably have many more years together and that is the greatest gift you can give me.
Lots of love…
(Fisherman’s Bastion in Budapest, Hungary)
The results of our board exam were delayed by a month because of a huge cheating scandal…
And of course I’ve been working like a slave as per usual…
I thought I’d just pop in to let everyone know that I’m still alive. Hopefully soon I’ll have the time to put up a proper post and catch up on what everyone has been doing. Hope you’re all doing well.
It’s been quite a while since I’ve last been here and as much as I’d I love to catch up with what’s going on with everyone, I have nowhere enough time to read all your posts so I’ve just browsed though some of them to get an idea of what’s happening with everyone. I’m glad to know that everyone has been behaving in my absence 😉
So what’s been happening my side? Since my last post, I wrote the big exam. As usual, it felt like an absolute disaster. The good thing is that everyone felt that way so maybe I’ll end up on the right side of the bell curve. I most probably should add in the fact that I actually dozed off during the exam. I suspect that it was the meds that I started taking because they make me super tired and if it was feasible, I would literally sleep every single day away.
Following on from that, I was supposed to see my neuro a month after the last visit to give him an update on how the meds are treating me. Clever me went and booked the follow up appointment on the day of the exam without registering this very important fact. About two weeks before the appointment, I called them to let them know that I wouldn’t make it so they put me on the cancellation list and made an appointment for the next available slot which is only in March. However, by the beginning of last week, I decided that this extreme sleepiness had to stop (I’ve even dozed off at work) so I called and told them that I really needed to see him. They said unfortunately they really couldn’t squeeze me in but I could call this week and they’d put me through to him.
So I called this week and I got my five minutes with him. Since the meds aren’t working any better than what I was taking before and they’re making me feel like a zombie, he decided that I should drop it completely and up the dose of one of the other meds. I haven’t gone to the pharmacy yet but I’m dreading this increase. This med, Keppra, made me feel so sick when I started taking it and I have a bad feeling that increasing the dose is also gonna make me feel sick. Fingers crossed it isn’t too bad.
I also broke my golden rule when it comes to doctors and I got him and his receptionist an anniversary/Christmas gift. They have been part of my life for five years now so I thought I’d just get them a little something. I got him a tie and cuff links and when I spoke to him, he asked if I expected him to hang himself with it. I told him that would save himself from dealing with me for another five years and we had a good chuckle. I got the receptionist a spa voucher which I think she’ll really like because she looks like she could do with some pampering.
On another health front, my teeth have been giving me problems, in particular my wisdoms. I went through a week where I barely ate because it was so sore. I went to the dentist who said she unfortunately can’t help me with the wisdoms and she referred me to the maxillo-facial surgeon, who I’m seeing tomorrow. I don’t know if I’m more worried that my wisdoms will be pulled out while I’m sitting in the chair or if I have to have surgery for it.
Work has gone into the crazy phase again. I’ve been working until about 2:00 each night and I’ve also been working weekends and even on the public holiday yesterday. We’re supposed to officially go on annual leave tomorrow but I don’t think that’s going to be the case for me. The way that things are looking, it seems like I most probably will be working over the weekend as well.
It is not all doom and gloom though, I do have some very exciting news. Next week Tuesday I’m heading off on a Eurotrip. I was supposed to spend December at home but during November I just changed my mind and decided I wanted to get away properly from it all. So while my parents and brother are in Taiwan, I’ll be spending two weeks in Europe exploring Italy (it’s true when they say that throwing a coin in the Trevi Fountain means that you’ll go back to Rome. It’s only been two years and I’m heading back there), Slovenia, Hungary, Austria, Czech Republic, Germany, Netherlands and England. I’ve never been keen on the idea of spending a day in a country then moving, I want to spend time there so I can explore but I decided I’d give this whirl wind tour a go.
I’m super excited but a bit nervous as well. I’m going on a Topdeck tour (it’s exactly the same concept as a Contiki tour, no over 30s) but I’ll still sort of be travelling alone. I definitely think there will be fun times ahead though so I can’t wait! 😁
I have this tight knit group of three friends plus myself who share basically everything with each other. Today, I found via the work grape vine that one of my friends was hospitalised last week because of a super high fever as well as a host of other symptoms. Then I still found out that the other two people knew about it and not a single person decided to just let me know that she was sick.
I understand that people need their privacy but at the same time, I feel hurt that they all decided that I shouldn’t be informed about this. My friend said that she doesn’t see me as less of a friend than the others, she just didn’t want me to worry about her. So now I mustn’t worry but the other two should? If it was life threatening, would they still have kept me out of the loop so that I wouldn’t have to worry about it?
Call me selfish or whatever else you want but how is this fair on me? This friend is the one who rushed me off to see the neuro when I had one of my first “black outs” and at a time like this she feels the need to hide this from me. I can’t even explain properly how I feel at the moment. Am I overreacting a bit here?
I’ve always been open with them. If they ask when my next neuro appointment is or if I’m going for a test, I’ll tell them exactly what’s going on. So why is it that when something like this happens, everyone thinks that I shouldn’t be told about it?
I think it’s time I start re-evaluating who I share my health matters with because I “don’t want them to worry”.
I had originally taken Monday off with the intention of having a long weekend so that I could join my person for a holiday down in Cape Town. After much deliberation and airplane ticket searching, I decided that I actually didn’t want to go anymore. Firstly because plane tickets were very pricy and secondly she had planned everything in such detail, I most probably would have had my head bitten off if I breathed out of time.
By Saturday afternoon I was getting very restless and I figured that I needed a break from the big city. So I started looking for day trips which eventually turned into an overnight stay. I settled on a place called Ivory Tree Game Lodge near Pilanesburg. I sent through the booking request on Saturday evening and by early Sunday morning, they had confirmed it.
So off I went on my merry way (with a not so merry amount added onto my credit card balance) and I took a roadtrip on my own. My brother thought I was a loser for going alone but I saw nothing with it. Plus I think some nature and me time without people I know was needed.
I arrived at the lodge and it was amazing, I would say that the service does semi justify the price. My overnight bag was taken out of the car and my car was driven to the parking for me. I was given a welcoming drink and shown around the main building so that I could familiarise myself with where everything was. I was then ushered into a golf cart and driven to my room.
At 16:00 we had a tea break and at 16:30 it was time for the afternoon/evening game drive. We were extremely lucky because we managed to see four of the big five animals (only the buffalo didn’t want to make an appearance) and a whole host of other animals as well.
We returned to the lodge just before 20:00 and then we were treated to an amazing dinner. There was so much to choose and I wanted to try everything but even with taking only tiny little bits of different dishes, my plate was full so there were a few things that I didn’t end up trying. The best dish for the evening was definitely the springbok shank. The meat just melted in your mouth and whatever spices and herbs that were used was perfect. My mouth is watering just thinking about it…
After dinner, I went and sat on my patio and did some reading while listening to the night sounds. Every now and again I’d also look up at the sky just to soak in the starry night sky. It was so relaxing to sit there without any city noises and to be able to see the stars so clearly.
In the morning, I got a 5:00 wake up call which is something that I normally would not respond to but it just wouldn’t be right if I didn’t go on the morning game drive. The drive was a lot less successful than the previous evening as we didn’t see many animals but we did manage to catch the sunrise.
After the game drive, we once again were treated to a delicious meal and then it was basically time to check out. But there was no ways I was going to leave yet so I emptied out my pockets again by treating myself to an aromatherapy massage at the spa.
Before I knew it, it was 15:00 and I reluctantly got into my car for the drive back home. Even though it was only a one night getaway, I think it was exactly what the doctor ordered.
I went and visited my favouritest person in the world yesterday. He told me a bit about the conference that he went to last week in Barcelona. I asked if he managed to find my future husband at the conference and he just laughed. I then reported back that the new meds he prescribed didn’t do anything and he said he wasn’t surprised because he knew it was unlikely that it would work, he just wanted to make sure that all the bases were covered.
I then told him about the exam and he gave me a very concerned look. In the five odd years that I’ve been seeing him, I’ve never seen that look so it was very disturbing. We sat in silence for about five minutes where he just held his head in his hands. I assume he was thinking because he eventually resurfaced and said that I must have had an “episode” and then went through a recovery period which would explain why I don’t remember what happened. When I get my paper back, he wants me to take a careful look at what I wrote during that missing period. If it seems “off” then it will confirm his suspicion.
“Luckily” while we chatting, my shoulder started misbehaving and it was doing its little jerky thing. His concern then changed to excitement (if I can call it that) because I could be hooked up to the EEG machine and we could see whether or not there was any abnormal brain activity. I got hooked up to the machine and went through the flashing lights and breathing exercises.
I was the last patient for the day so I sat there and watched as the EEG technician scrolled through the results to create the report for the neuro. The 30 minute EEG exercise yielded a whole two seconds of abnormal brain activity. It was “super” abnormal though and the neuro couldn’t explain it to me. Normally the left side of your brain controls the right side of your body but on the EEG it showed that the right side of my brain caused the shoulder jerk in my right shoulder. Even the EEG technician was baffled by it but neither of them could give me extra info. I’ve been scouring the internet but so far I haven’t been able to find anything on how this could happen.
Since I have now tried eight different meds and although I have had good periods, the bad periods are becoming more so the neuro has officially declared that in addition to my spinal myoclonus, I also have refractory myoclonic epilepsy.
It’s all good and well that he officially declared the epilepsy part but I need to know where to go from here. I asked him and in a resigned voice, he said that he didn’t know what to do with me anymore. I think I must have pulled a face that really concerned him because his head went back into his hands and he sighed numerous times.
This time when he resurfaced, he had come up with a plan of action. It’s not an ideal plan but at least it’s something. There are many other anti-epileptic meds out there however they are known to make myoclonus worse so there isn’t any point in me trying them. We made a list of everything that I’ve taken and the different combinations that I’ve taken them in. What we’re going to do now is try different combinations that I didn’t try in the past. I always feel horrible when I change meds but if this works, I won’t complain. So the first plan that is being implemented now is that I’m going to continue taking Epilim and Keppra, lower the dose of Lamictin that I currently take and then add in some Urbanol. Hopefully this works, even if it’s just for a couple of months, it will be amazing to feel “normal” again for a while.