Getting to know the BC Epilepsy Society

 It's kind of wild to me that it's taken me TEN years to start to get to know the BC Epilepsy Society, what they do, and how they can help me. 

I'm told that this is partly timing: ten years ago when my journey was just starting, they did not have the funding and the programs that they have now. Apparently it's only within the past few years that they've been receiving more support from the community, have done a bunch of fundraising and have been increasing their programs. 

I came across it randomly; I was down a google rabbit hole looking for ways to help my memory, since that's a big area that I struggle with. I came across something called the "HOBSCOTCH" program, designed at the Dartmouth Hitchcock Medical Center in New Hampshire, and then found that I could access this program (for free) through the BC Epilepsy Society. It's an 8 week program where you meet online with a coach and work on challenges and strategies. I'm currently in week 3. :)

But aside from that, they have other stuff that I had no idea about!

They have counseling programs, and imagine this--most of the counselors have epilepsy themselves! I was amazed when I heard this. They also have a sliding scale so that people with lower incomes can get affordable counseling. What a difference that would have made for me back in the early days, when I was terrified and also broke! I'm not as terrified and broke now but I still plan to meet with one of their counselors. 

AND they have support groups, both online and in person (I haven't checked these out yet). 

I've been so excited about all of these things that I already want to help somehow. So of course I jumped on board when I found out that they are one of the charities for the Sun Run. I've only done the Sun Run once before and I swore I'd never do it again, but this is for a good cause. If I can do anything to help make other people's journeys a little easier, then I will. 

I already posted this on my facebook page, but expect to see it a few more times between now and April. :) 

My fundraising page

New Years Update

Happy New Year!

Point form updates since I haven't posted in awhile:

• As of today's appointment I'll be increasing the Cenobamate/Xcopri to 300mg nightly
• Clobazam is gone
• Topiramate should have been gone... got down to 0 and my brain was reacting so it's going back up to 100mg/day again. I just can't get rid of this one. Every time I try to go below 100mg, my brain reacts. As much as I don't like the side effects, this med works for me. So for now, it's staying. 
• I had 8 episodes in November, and 8 in December, thanks to the decrease in Topiramate. That doesn't include the little mini-sensations-but-not-quite-enough-to-log. 
• Overall, I've been feeling SO MUCH BETTER--physically, mentally, and emotionally than I was 6 months or a year ago. I think it's because I'm off of the Brivlera and Clobazam, but the epileptologist also credits the Xcopri; he believes that this med has positive effects on moods and energy. He said today that he won't be surprised if that comes out in future studies/reports because he's seen it a lot. What it means for me is just that I'm feeling better energy, better moods, more motivation. I'm happy about that. 
• I've been working on increasing my physical activity. A year ago when I started working 100% at home, my step count and general activity level went down dramatically. So as of Nov 1 I have been focused on doing 10,000 steps per day (100% completion so far). 
• Today I asked him about HRT, since I'm turning 48 this year. I'm not yet at the point that I feel I need HRT, but I think it's coming and I wanted to make sure that it will be ok for me, especially since my epilepsy is hormonally-connected. He said it's totally fine and I don't need to worry about it; he said that the doses in HRT are generally pretty low and shouldn't impact my meds, except for one (he said but I forget which one) If/when I do start it, we may make an adjustment. But we'll cross that bridge when we come to it. 
• I've been having a rash for the past several weeks under my bra area when I run/hike/sweat, and I asked him about that because rashes are always alarming with my meds. Showed him the pics. There are no other symptoms of the Death Rash (fever, glands, etc.). He said it's not likely related to the meds, so to try hydrocortisone and/or see my GP if it doesn't go away. 
• I've also had some muscle tremors/shakiness, and some weird moments where my words come out in the wrong order when I say a sentence. For example, imagine if you try to say "I painted the house blue" but it comes out "I the house painted blue". This seems to be improving as I adapt to the Xcopri, but it is weird when it happens. Doctor is not concerned. 

In other news, I discovered that the BC Epilepsy Society offers some programs including a free 8 week program for improving memory. I'm going to be starting the memory program next week online. I have no idea what it entails, but I hope it will be helpful! Will report back next time. :)