Thanksgiving and a Little Personal NMO History

Thanksgiving is my favorite holiday, though I often greet it with a bittersweet sentimentality. I love the quality time with friends and family, the cooler weather, the sound of football on TV, the unpretentiousness and ease (read: no gifts like during Christmas), and especially the FOOD.

But many Thanksgivings ago, for a number of them in a row, I would get Neuromyelitis Optica/NMO attacks. Perhaps it was the holiday stress, the sometimes frigid climate, or the flu season. Perhaps it was merely coincidental. Whatever the reason or reasons, it was almost no fail for four years in a row that I had with my Thanksgiving turkey either a side of optic neuritis or transverse myelitis.

And isn’t it Murphy’s Law that my attacks would come during the holidays (or once, during a hurricane) when hospital and pharmacy staff were skeletal at best? My neurologist at the time not only had cold bedside manners, but also frequently left me to dictate my own healthcare. So many times I’d have to leave multiple messages with his office saying, “Okay, my vision is getting worse. I really need the dexamethasone stat, please.”

The turning point for me came in 2007 with my visit to Dr. Dean Wingerchuck at the Mayo Clinic in Arizona. He wrote a letter to my primary neurologist recommending Rituximab infusion therapy, and after a lot of back-and-forth with insurance and Genentech (the maker of Rituxan) and a botched first infusion, I’m happy to say I’ve been attack-free for 7 years.

And that, my friends, is something to be thankful about.

My message is one of hope. I know what it’s like to be misdiagnosed and given ineffective treatments. Keep searching, and have faith you will find it. You will find the right doctor and the right treatment, and you will lead a full and fulfilling life. Take it from me.

Depending on how you look at it, my life philosophy can be viewed as either optimistic or pessimistic: I always tell myself the situation could be worse. Maybe it’s a defense mechanism, but it’s kept me sane. No matter what, life could always be worse. This is how I find the small things for which I’m thankful.

Last but not least, it wouldn’t be Thanksgiving if I didn’t talk about the food. Here are a few of my tried and true holiday recipes; try your hand at one or all. Happy Thanksgiving to all of you from us at NMO Diaries.

*These recipes are from my Blind Cook blog. More recipes can be found in my cookbook, Recipes from My Home Kitchen.

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25
Nov 2014
POSTED BY Christine
DISCUSSION 7 Comments
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7 Comments

  1. I am with you Christine-I always think it could be a lot worse. It helps me keep things in perspective & cope. Happy Thanksgiving! (We Canadians celebrated last month.) Be well!

    Comment by Lelainia Lloyd on November 25, 2014 at 9:35 pm

  2. maria

    Your story sounds so similar to my own! Thank you for sharing.

    I too have now been attack free for 2 years since starting Rituxan. I am glad to hear you have been doing so well on it for so long. I often wonder just how long I can be on it…since there are so few of us with NMO and treatments are so varied, it’s great to hear a success story and know there is hope!

    Comment by maria on December 2, 2014 at 10:54 pm

  3. I will read to Alexa. She thinks no one else ever had to miss Thanksgiving because of an Optic Neuritis NMO attack. Thanks!

    Comment by Julie Caudill on December 11, 2014 at 7:51 pm

  4. Dear Christine,
    Like the way you write and are so positive. I have had N.M.O. for the last 30 years so it is not the end of the world, just things need some readjustment. It is only now that I have had to succumb to a wheelchair and I am 69 years old. I was self employed so couldn’t take time off unless it was completely necessary, I was too busy as a breadwinner, rearing a family and getting on with life rather than moaning over the hand I had been dealt. This was my way of coping.
    Keep the sunny side up,

    Tom.

    Comment by Thomas (Tom) Allen on January 11, 2015 at 12:11 am

  5. Christine

    Thanks for sharing. 🙂

    Comment by Christine on January 12, 2015 at 7:57 pm

  6. Dear Christine,

    P.S. I have been one of the lucky ones. T.G.

    Comment by Thomas (Tom) Allen on January 11, 2015 at 11:10 pm

  7. Jenna

    Thank you everyone for your comments on Christine’s post. She’s currently in Vietnam working but I know she’ll read all of your comments in between her busy schedule.

    Jenna

    Comment by Jenna on January 13, 2015 at 8:24 pm

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