Because…SCIENCE!

self-portrait-llcHello again! It’s so hard to believe there’s only a month and a half left of 2016 and then we will be welcoming a new year!

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.

14
Nov 2016
POSTED BY Lelainia Lloyd
DISCUSSION 3 Comments
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3 Comments

  1. Shirley Douglas

    Hi Lelainia,

    I’ve been healing from NMO since 2011. I believe it brings on RA. I have the pain in my shoulder. I started Rituximab Infusions in July 0f 2016 and had no flairs since. Just had the second infusion yesterday (1/5/17) and feeling great.

    I waned to share with you because Rituximab is recommended for RA also. I have it every six months and I am pleased with the results.

    Sincerely,
    Shirley Douglas
    914-505-3170

    Comment by Shirley Douglas on January 7, 2017 at 5:57 am

  2. Lelainia Lloyd

    Hi Shirley,
    I started Rituxan in August. In Canada, it;s not covered from NMO, but it IS covered for RA. Seeing as I have both, I was able to go on it. I am actually taking 4 meds to deal with the RA and still waiting for them to work. The RA flare is very bad and still not under control. I may end up having to have cortisone injections for the worst joints.

    I don’t know that NMO causes RA, but certainly having one autoimmune disease leaves you open to developing others. I know one NMO patient who has NINE. Crazy! I have 3.

    I am glad the rituxan is working for you. I won’t know if it’s working for my NMO till I get through a summer without a relapse. It hasn’t happened in 9 years, so this will be a good indicator.

    Thanks for checking in! 🙂

    Comment by Lelainia Lloyd on January 8, 2017 at 1:49 am

  3. Shirley

    Hi Lelainia,
    Thank you for responding. It’s very comforting to have this community to talk to as we move forward with our treatments of this mysterious invader.

    I pray the Rituximab works for RA and stop the flairs. I’ve discovered when the affected area gets cold it will hurt. Keeping my shoulder warm at all times works.

    I’m going to look for a support group in my area, Middletown, NY.

    Be blessed.

    Comment by Shirley on January 12, 2017 at 5:29 pm

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