Monday Morning

Monday, the start of a new week.  This week our part of Georgia is celebrating spring break.  Jessie isn’t going to school right now anyway, but I’m thinking that the tutor is on vacation and therefore, so are we!  

Jessie’s headaches were pretty relentless last week and, as always, I’m hopeful that today will find some relief.  We shall see.  Everyone sleeps in except mom and dad this week.  So this is my quiet time.  

Last week we were told to add TONS of supplements to the daily medicine intake, so Jes is now taking, twice a day, Lyrica, Pamelor, multivitamin, coQ10, fish oil, calcium, magnesium, b12, and b2 (which I haven’t found yet).  She adds in Fioricet as needed for headaches.  Jessie actually took a picture of her pile of medicine for Facebook, I think.  

She was also given orders to consume more salt and water and to lie down for 10 minutes every hour.  This is a result of the orthostatic intolerance.  Now as an aside, tell me if you disagree, please.  Okay, first here’s the list of suggested higher sodium foods:  noodles, potatoes, parmesan cheese, dill pickles, tv dinners, sweet & sour pork, lasagna, soup, fish & chips, hamburger, hot dog, fried chicken, pizza, pretzels, soy sauce, olives, and salted nuts.  Gimme a break.  I told Jessie that if a doctor told me to eat more foods like that and lie down for at least 10 minutes every hour, I’d say, “sign me up!”  Realistically, we know that if she ate that way every day (in a gluten-free way) she would gain 50 pounds quickly – not wise.  So we will continue our search today for salt tablets.  Whole foods and Walmart, here we come.  One more thing.  When my husband and son learned that she needed salt, they volunteered to head out to the nearest farm store and pick up a salt block so that Jessie could go out in the back yard and lick it from time to time.


1 Comment

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One response to “Monday Morning

  1. Sue

    Hi, Lori –

    Your new blog is great, and I was fascinated by Jessie’s story. As for the new diet recommended…ew! It’s almost all junk food! The way we’ve approached it is to continue with our normal, healthy diet, but I just add more salt when I cook (or soy sauce, depending on the dish). I try not to add too much salt to our food, though, because while 3 of us have CFS and OI, my husband does not.

    Mostly, as I might have mentioned on e-mail, I discovered we just can’t get enough salt from food alone. V-8 juice is an awesome source of sodium – huge amount in a small glass! My boys both drink Gatorade every day (1 liter a day for the 11-year old and 2 liters a day for the 14-year old, whose OI is worse). Craig prefers the new G2 variety which has half the sugar and half the calories.

    The salt tablets I mentioned before are called Thermotabs, and you can order them through any drug store. They may not have them on the shelves, but just ask the manager to order them for you.

    So, Jessie can get plenty of salt without eating a lot of junk. As for weight gain, the bad news is that the whole purpose of adding salt and fluids is to intentionally cause bloating (some of that added fluid will be blood volume which is the real goal). So, she probably will notice some bloating and water weight gain, but that’s the goal. The good news is that effectively treating OI can greatly reduce most CFS symptoms. My older son felt the extra bulk around his middle was well worth it when he went from being bed-ridden half the time to being like a normal kid again. And, once she can be more active, that will counteract some weight gain.

    One more thing – it’s very likely that just adding salt and fluids won’t be enough. The nervous system dysfunction in CFS prevents our bodies from holding onto salt and fluids. More helps a little, but it’s likely she’ll also need Florinef, a medication that helps the body hold onto more salt and fluids. So don’t be discouraged if she doesn’t see a big improvement at first from just extra salt.

    Good luck! I’ll keep reading…


    P.S. Sorry for being so lengthy in a comment!

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