I am still recovering from being so sick over the summer, but am feeling better in terms of energy. I am still in a considerable amount of pain from RA and dreading the idea of having to confront that fact with my Rheumatologist next week. I was told that if the pain didn’t settle, I would likely have to add another medication into the mix. The problem is that the medication in question is an injectable. After having to give myself daily shots for 5 years when I was mis-diagnosed with MS, I am not keen on dealing with constant needles again. The other big deal is that the add-on med is chemo. I’ve been through chemo before and it’s miserable. The thing is I really can’t go on with the level of pain I am currently in, so we’re going to have to figure this out. I intend to explore my options and see if there’s any way around having to do injections.
In the meantime, I am keeping busy-for the next three weeks I am going to be immersed in medicine from the other side. I am attending a day long MS/NMO ambassador’s annual session out at UBC this weekend. It’s a chance to learn about all the current research the MS Society of Canada is doing and we will also have the opportunity to tour the labs. I am excited about touring the labs because UBC does a lot of important research here in Canada and I know several of the researchers. Getting to peek behind the proverbial curtain will be both fun and interesting.
Next Friday, I am attending an all day meeting for the Association of Registered Nurses of BC’s patient advisory committee. I was invited to serve on this committee a couple months ago and this will be our first chance to meet everyone, set our agenda for the foreseeable future and elect a chairperson. I am looking forward to working will fellow health advocates to improve how healthcare is delivered in our province.
Next weekend is also UBC’s NMO Patient Information Day. It will be good to catch up on the latest in NMO research and clinical trials and to connect with our NMO community. We have a new clinical research coordinator for the CIRCLES study whom I look forward to meeting.
The first week of December, I will be flying out to Toronto at the invitation of the MS Society of Canada to speak to over 100 junior researchers about the importance of MS research. The event is called HEAR MS Day, which stands for Hope and Engagement through Accelerating Research in MS. I just completed 2 terms as the Community Representative for British Columbia, serving as a lay reviewer for the grants competition and the MS Society of Canada felt my input would be valuable. I am very excited to be a part of this. I will also be attending the 4 day EndMS conference that follows. They are expecting over 250 researchers and health care providers from around the world to attend. There will be scientific presentations, trainee workshops, poster sessions and networking events. I am very much looking forward to contributing and learning.
I have always had a keen interest in medical science. When I was 5 years old, I wanted to be a forensic pathologist, (I know… I was a weird little kid. Clearly, I watched way too many episodes of “Quincy, ME.”) but I would never in a million years have thought I would be so immersed in the world of medicine, research, education and advocacy the way I am now. I consider myself very right-brained, so all of this really is a departure from my wheelhouse. The thing that hooked me though is the learning-I am never happier than when I am being challenged to learn something new- I will immerse myself and soak up information like a sponge. The other big hook (and to me, the most important one) is the chance to make a difference. Someone I admire very much once said to find the thing you are passionate about and then pursue it with all your might. I am passionate about improving the human condition, especially when it comes to doing everything I can to help advocate for those of us living with NMO and MS. It is an honour and a privilege to be able to serve.
Before I sign off, just a quick reminder that UBC’s NMO Patient Information Day is coming up fast. For more information and to register, click here.