Friday, July 10, 2009

In Her Own Words - Sister's Soft, Moist Sunday II

Below is a slightly edited version of an email my sister sent after last week's post. It will give you an idea of what she's experiencing, and it will give you an idea of what kinds of things I'm trying to consider when I'm planning my Soft, Moist Selections.

When most people ask me what's wrong with me (besides the normal things), and I say I have MS I get that blank-eyed stare and head-nodding that people get when they have no clue but don't want to be rude. I most always have to tell them that MS stands for Multiple Sclerosis. Almost 99% of the time, after I tell them what it is, I get what I now call the "stare-n-nod-n-OH?" and they still don't get it.

Here is a quick definition in English if you want to use it:

Multiple Sclerosis is a progressive lifelong debilitating disease for which there is no cure, and the only treatments are injections or intravenous drugs. These drugs only serve to "hopefully" prolong episodes of relapse where your symptoms get worse and "hopefully" make the symptoms of the relapse less severe.

MS is a neurological disorder, potentially caused when your own immune system attacks the covering of nerves in your brain and spinal cord causing the nerve to be exposed and create a "lesion" or "lesions" along the nerves. The lesions make it impossible for your nerves to relay messages correctly along their paths, which in turn causes different physical symptoms to appear.

So far I have a very weak right leg with foot drop, a weak left leg, continuous spasms in my ankles, frequent spasms throughout every other part of my body, hand weakness and spasms bilaterally, a neurogenic bladder that I have to catheterize every 4 - 6 hours to urinate, swallowing and choking problems, EXTREME!!! fatigue that doesn't go away with sleep, severe pain everywhere but especially down my back and legs, nerve pain that comes and goes all over my body without rhyme or reason and feels like severe burning inside and out, severe vertigo where the world spins. The vertigo has caused multiple falls, quite a few being down the stairs, and the loss of my driving privileges. I have already progressed from a single straight cane to a four prong cane, and I now have to use a four wheel walker to get around. It has a seat so I can sit if I get tired or dizzy.

I experience progressive cognitive issues where I can't find the words I want, or forget what I was talking about to begin with. I have difficulty conversing or even typing this email because I need to reread it over and over. I am going to different specialists and have appointments at a minimum of three times a week including physical therapy. The therapy is intended to improve my strength and mobility, but we're just hoping it will help keep me as functional as I am now without regression. I'm on injections every other day and multiple other meds every day, and I am getting weekly procedures at a pain clinic to devise a regimen of medications and treatments so I can tolerate my daily pain and keep moving and also not affect my cognitive being negatively. I can't remember if there's anything else wrong with me, I hope not, but I might have missed something in this list.

I'll start trying some first stage smoothies. It's like my own form of Baby Foods, they all come in different stages with more added to them with each level. This is A's Beginner Stage Smoothies. Haha.

See ya

Love A

This Week's Soft, Moist Selection

Watermelon, Strawberry and Romaine Smoothie

(I used frozen & sweetened strawberries for this recipe. They were a gift from a gardening friend. You may want to sweeten the smoothie if you are using fresh or unsweetened berries. You'll also need to make some green tea for this one. I make a pot and store it in a jar in the fridge for use in smoothies. It looks like a huge urine sample. Good times. Use store-bought prepared tea if you must, but remember there's going to be extra sweetener and other unnecessary stuff in it. It's also likely to be more expensive.)

Makes 3 cups

2 romaine leaves (or other lettuce - about 1 cup)
1 cup green tea
2 cups cubed watermelon
1/2 cup strawberries
1 cup ice

- Tear lettuce into smaller pieces as you put it into the blender
- Add green tea and blend
- Add watermelon and blend
- Add strawberries and blend
- Add ice and blend until smooth

Blender Pasta Sauce

(This is an adaptation of Mondo Bizzaro Sauce from the Moosewood Cookbook by Mollie Katzen. There's much more Mollie than Laurie to it I'm afraid, but it's a recipe that should be easy to prepare.)

Makes 2 - 3 cups depending on ingredients

2-4 cloves of garlic
2 tbsp olive oil
1 1/2 - 2 cups tomato sauce. (I used homemade, but pre-made should work)
1 handful of fresh basil (About 10 or so leaves)
2 - 4 cups assorted greens (I used spinach, beet greens and kale)

- Blend garlic, olive oil and 1/2 cup of sauce until smooth
- Add basil and remaining sauce. Blend.
- Tear up greens and add them a bit at a time. Blend until desired consistency is reached. (Mine was like a thick, green milkshake.)
- Toss with hot, cooked pasta.
- Top with parmesan cheese if you want.

Leftover sauce can be frozen.


  1. Hmm, now I remember why I never store leftover green tea in the fridge... ;-) I do, however, love a green tea cooler sweetened with mango juice. Yum!

  2. Hi Rosiecat. Mango juice. I hadn't thought of that. Thanks for the idea. Sounds wonderful.


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