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.

 

 

 

 

 

 

 

 

 

 

11 Comments

  1. PJ

    Well done, Jenna. Glad you had such an amazing time. Jealous I didn’t get to go too. Congratulate Christine on her amazing cookbook. It’s beautiful, just like her.

    Comment by PJ on November 16, 2013 at 11:08 pm

  2. Jenna

    Will pass the message on to Christine. And that’s ok that you said amazing twice. It really is the best way to describe the event.

    Comment by Jenna on November 17, 2013 at 1:37 am

  3. PJ

    I just said amazing, twice in the same post. D’oh!

    Comment by PJ on November 16, 2013 at 11:09 pm

  4. Lelainia Lloyd

    I would have like to have come this year, but I was waiting on a surgery date to repair my broken wrist & my husband had a bunch of 1 yr. post kidney cancer appointments. (Yes, he lost a kidney to cancer & a week later, I was diagnosed with NMO. 2012 was brutal.)

    Anyway, it sounds like everyone learned a lot and had a good time. I talked to Dr. Katya about NMO day in the US when she was here for the one in Vancouver because I really didn’t understand how he travel grants worked. Still not 100% clear on it, but maybe I will get it figured out in time for next year.

    Christine was very kind in answering a couple emails I sent her when I was being rediagnosed. I agree- we have to look out for one another.

    Comment by Lelainia Lloyd on November 16, 2013 at 11:25 pm

  5. Jenna

    Oh wow! Hope you got your wrist taken care of and hope your husband did well at his follow up appointment.

    The travel grants are awarded to the patients who have financial need in order to attend. The process to request a grant is really simple online on the Guthy-Jackson website. It’s a remarkable grant to receive as many patients wouldn’t otherwise be able to attend.

    Hopefully you’ll have the opportunity to attend next year.

    Comment by Jenna on November 17, 2013 at 1:39 am

  6. Jesus Loreto

    We love you Jenna !

    Comment by Jesus Loreto on November 17, 2013 at 3:01 am

  7. Jenna

    And of course we love you too Jesus and Maria!

    Comment by Jenna on November 25, 2013 at 1:55 pm

  8. Nick A

    Hi Jenna:

    I think I might know the husband and wife to whom you’re referring 🙂 Thanks for sharing this post, it definitely puts a smile on our faces to know that we have this amazing support network. We promise to be more social next year!

    -Nick

    Comment by Nick A on November 21, 2013 at 11:55 pm

  9. Jenna

    Hi Nick. Didn’t think you and Amy were antisocial at all just I’m sure, overwhelmed as we all our on our first patient day. The entire concept of collaborative medicine between clinicians and patients is unheard of in the medical community so the GJCF have something very unique. Hopefully we see you next year!

    Comment by Jenna on November 25, 2013 at 1:57 pm

  10. Jessica Herman

    Diagnosed with longitudinal transverse myelitis…possible NMO….negative for antibody, age 59. Now 61…just had my first infusion series of Rituxan at NYU Langone Center in NY. Came through both infusions…tired…flush…but fine. Any experience with this treatment?

    Comment by Jessica Herman on November 22, 2013 at 8:20 pm

  11. Jenna

    Hi Jessica,

    Sorry to hear you’re having a hard time right now. Just because the antibody test came back negative does not mean you do not have NMO. Many of us have had a negative test only for it to come back positive months or years later. I personally have not done Rituxan but both Christine and Erin use that as their primary treatment on a regular basis. You’ll need to work with your doctor to assess if it works with your body or not and the frequency. Let us know how that works out for you.

    Comment by Jenna on November 25, 2013 at 2:03 pm

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