Introducing our new blogger – Lelainia Lloyd

Several years ago Mike (my then fiancé) and I found ourselves at the Guthy-Jackson Foundation Patient Day. After asking a question, Erin found me on one of the breaks because she had a similar question. We started talking and also met Christine in the lobby bar. Before soon, the 6 of us (spouses and us) found ourselves at a sushi dinner. Call it fate or by chance, but NMO Diaries was born over that shared meal.

This blog was a form of therapy for each of us but also a way to give back to the NMO community. You see, several years ago, if one were to Google neuromyelitis optica, it offered a frightening tale that our lives would be over. Determined to not have this disease defeat us, we wanted to share our lives and how we planned to move forward.

Fast forward to today, I’m very proud to say that each of our lives has developed further than any of us would have imagined. There’s so much more each of us wants to do and now we see it as a possibility because of the love and support we’ve received from the NMO community, our families and our friends.

That being said, it’s time for us to include a new blogger to join us permanently on NMO Diaries. I’m very pleased to introduce each and every one of you to Lelainia Lloyd. Based in British Columbia, Canada, Lelainia is just a few years older than us, is very involved with the MS Society and will offer her experiences as a new perspective. To learn more about Lelainia’s NMO journey check out her “About Us” link here.

Thanks for joining us on NMO Diaries. We hope we continue to inspire and motivate each other to live life to its fullest.

Patient Day 2013

Patient Day 2013 was a little bit of awesome. Ok, it was a whole lot of awesome. When I compare my first Patient Day in 2010 to this year (I missed last year having a newborn) I was able to absorb so much more information.

In 2010 I was newly diagnosed with neuromyelitis optica (NMO) and I swear I thought I was the only one, especially in Canada! We were also newly married so as if that doesn’t come with its own challenges, my husband and I had no idea what life with NMO would really be like. I stumbled on the Guthy Jackson website and without much thought I knew I had to meet other patients. When I think about it now I can’t believe I was scared to speak to other patients, especially those I perceived as having it worse. I’m embarrassed to say it now but back then I thought by speaking to those in wheelchairs or with walkers or with visual impairments I would somehow get sicker, even though I’d experienced all that and more. In short, I wasn’t ready to admit I was one of us.

This year another patient and her husband sat at my table – it was their first time. I wondered why they were so quiet until in the evening at the bar they admitted how overwhelming it all was and I instantly recalled my first year. I’m kicking myself that I didn’t focus more on them ’cause after all, we should be there for each other. So other patient (who I won’t name here): take comfort that next year you’ll know us and although I wish we could have met for another reason, you are both part of this amazing network with nothing but endless love and support.

I love my NMO sisters Erin and Christine. They took me under their wings in 2010. For that I am grateful. I am also grateful that my best friend, Andrea, joined me this year. She has been one of my constant supporters and I love that she met the girls, the other amazing patients and we finally had our best friend trip.

Me with super mom, Nancy Reimer, who organized the very first NMO walk/run, and her son Riley.

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Erin Miller is obsessed with Sprinkles, the cupcake shop in Beverly Hills, so every Patient Day we make time to trek out for our bedtime snack.

 

 

 

 

 

 

 

 

 

 

Look everyone!  It’s another workaholic NMO patient! (Me with Sandra Adda.)

 

 

 

 

 

 

 

 

 

With Courtney Engel, me, Christine Ha and Erin Miller.

 

 

 

 

 

 

 

With my best friend Andrea in front of the famous Chinese Theatre.

 

 

 

 

 

 

 

 

 

 

Patient Day 2011

THANK YOU THANK YOU THANK YOU to the Guthy-Jackson Charitable Foundation for arranging yet another successful Patient Day.  Thank you so much for having us and always being in our corner.  Patient Day was a great chance to re-educate and receive new information on Neuromyelitis Optica (NMO).  More than ever, I’m confident that they’ll find a cure one day.  Some exciting stuff I gathered from the event:

  • An aquaporin map treatment is in the works to creat good antibodies.  A paper was recently released by Dr. Alan Verkman.
  • Talk to your doctors about the flu shot but in general, the benefits usually outweigh the risks for NMO patients.
  • Be more active and wash your hands!
  • Remember to get regular check ups like the rest of the population (ie. Melanoma could be a side effect of long term use of Cellcept).
My favourite break out session was definitely the Nutrition and Diet.  Led by John Pierre (who is Ellen Degeneres nutrition guru), he made a very effective argument towards a plant based diet.  Having tried a vegetarian lifestyle for a couple of months this year, I did see results and did feel much better.  I came home energized to try it again and so far in the last couple of days I’ve lost a few pounds and have regained some of my energy.  Although, I did try his gluten free, sugar free blueberry muffin recipe and I’m honestly not a huge fan.

Here are a few highlights from our trip:

 

Jenna