Connecting With Others Who Have MS

  • Last Thursday I had a wonderful opportunity to meet some ladies (living with MS) who I previously knew only through online interactions.  A few MS bloggers and one chatter* met together in a centralized location for the day.  We had a FABULOUS time!!


    (*A chatter is a person who participates in a bi-weekly Friday night chat hosted by my friend Joan from the blog A Short in the Cord.)


    One aspect of this gathering focused on food.  The primary focus was on fellowship.


    Joan asked ahead of time if any of us had special needs or requests, including dietary restrictions.  I told her that I personally did not have any restrictions other than preferring NOT to eat a plate of onions and celery.  YUCK!!

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    By reading my blogs, Joan already knew that I have been concentrating on weight loss quite seriously since January.  If you didn’t know already, I’m blogging along this journey and sharing what I learn along the way at MyObesityConnection.


    Joan treated us to a wonderful assortment of food: spicy crab dip and crackers, two types of juicy grapes, tea, coffee, juice, water.  All of this was just for appetizers.  She then prepared a wonderful salad which had apples, cranberries, mixed greens, and almonds.  YUM!!  But that wasn’t all, the main dish was a cheese and broccoli quiche obtained at a local farmer’s market.  One other guest brought one of the largest bottles of white wine I’ve seen in a while and home-made macaroons.


    We had a feast which fed our bodies, souls, and minds.  We had great fellowship.

    Of course the conversation came around to our “worst” or most dreaded MS symptoms and what our experiences have been with relapses. 


    One of the MS bloggers, my friend Jen from MS Strength, commented that she was glad to see that we each were mobile, energetic, and basically looked “normal.”  She pointed out that nobody else would know about our MS but that she noticed we ALL held onto things while standing or placed our hands on the table to stand up.  I wonder if anybody else would have noticed that?


    Joan asked about steroids and it became apparent that Jen and I were the only ones there who had really done the IV steroids (solumedrol).  We didn’t talk about it long but if we had I think I would have won the award for “most steroids used in five years.”


    Later I counted how many significant relapses which required steroids I have had in the past five years.  I have had four five-day rounds of IVSM and one 3-day round of IVSM.  That’s five rounds, not including the original time I did steroids (high dose, but all oral) when I had the blinding case of optic neuritis in 2000.


    OK.  Let’s leave the MS thoughts aside for now and move onto a separate afternoon of fellowship I had yesterday for Easter Sunday.


    My mother and I had dinner with my boyfriend and his mother yesterday afternoon.  She had a ham from Harrington’s in Vermont.  I was asked to bring a vegetable, for which I made garlic-roasted baby red potatoes.  I should have thought to also bring a salad, if not for everybody, but at least for myself, as I am keeping track of all food eaten and watching the scale register lower and lower each week.


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    I had asked if we needed to provide dessert.  “No, Mom is making something for dessert,” my boyfriend says.  Great, she makes wonderful goodies.  Again I should have made contingency plans for myself, perhaps bringing fruit along just in case.


    Yep, dessert was a rich, decadent chocolate mousse made with real whipping cream and rum.  I had a moderate serving and later looked up the nutritional values.  Yikes!!   A modest 3/4 cup serving of mousse would be more than 600 calories.  My taste buds would have been satisfied with “chocolate mousse” made of fat-free, non-dairy Cool Whip.


    I felt horrible afterwards, not just emotionally from letting myself down, but physically from ingesting the type of food I had been avoiding for three months.  I can see it now; I’ll soon become one of those people who take their own special meals with them when they are unsure what really is being served.  (BTW, my potatoes really were the only vegetables included in the meal.  Doh.)


    I should have known better.  The one meal really hasn’t affected my MS so much, but my hands are a bit swollen today (affecting my RA) and I’m craving some FRESH food.


    So I’m wondering, what do you do when you take MS (or new dietary habits) on the road?  I’m kind of new to this way of thinking and open to your ideas.  Thanks.


    Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.

Published On: April 05, 2010