Thursday, April 28, 2011

An Interview with Laura Hillenbrand

Some excerpts:

What advice would you give to others out there who suffer from ME/CFS?
The most important thing I have learned in my 24 years with this disease is to listen to my body. Everyone with this disease has different boundaries, and we find out through trial and error where they are. It’s critical to know where they lie, because when ME/CFS patients overextend themselves, the result can be utterly disastrous. Several times, I have overdone it, leaving myself bedridden and desperately ill for years. Because many patients have been accused of merely being “lazy”—something I heard all the time in my first years with ME/CFS— they often push themselves too hard to prove they aren’t malingering. I did this myself, and paid dearly for it. So my advice is to always put your body first, listen to what it is telling you and respect those signals.

What are some natural treatments and/or ways you use to cope with
I’ve been doing yoga for about a decade now, and it has been a godsend to me. Even when I’m quite ill, there are a few poses I can still do, and it’s wonderful for my body, keeping it flexible and maintaining muscle tone. It’s even better for the mind. Yoga relaxes me, alleviates stress, and quiets my thoughts. There is a beautiful and nourishing mindset that attends yoga, focusing on acceptance of yourself and your situation, living in the moment, awareness of the interconnectedness of all things, and cultivating gratitude for your blessings. There is so much loss, so much anguish, and so much stress involved in being as ill as I am; yoga helps me cope with it and love my life and all I have been given.
Along with yoga, I practice meditation. No matter how sick I am, I can always meditate, and it always refreshes me and fills me with optimism. In spite of what the disease does to me, I’m a very happy person, and I credit meditation for much of that. In my sickest years, I sometimes meditated three times a day.
I am also careful about the chemicals that go into my body. I try to buy products that are natural. I buy products from companies like Loving Naturals, which sells products that are organic, simple, natural and absolutely safe. I try to do this especially with products I use every day, like moisturizers and lip balms. Also, we only use nontoxic, natural products in our home, because we don’t want to breathe in harsh chemicals, and we don’t want to pollute the environment.

Friday, April 22, 2011

Dr. Andreas Kogelnik’s Talk on Re-Evaluating Chronic Fatigue Syndrome and Immunology

This is an extremely thorough summary of Dr. Kogelnik’s talk “Re-Evaluating Chronic Fatigue Syndrome and Immunology” at El Camino Hospital in Mountain View on April 19, 2011.

Re-Evaluating CFS and Immunology

Monday, April 18, 2011

Eating Well: Food Allergy Substitutes!

my favorite allergen substitutes

grated parmesan cheese – grated brazil nuts
ricotta cheese – replace with crumbled tofu
cream – unsweeetend coconut cream
milk – soy milk / rice milk / coconut milk / unsweetened almond milk
cream / milk – if it’s liquid you’re looking for vegetable stock or chicken stock can work.
mayonnaise – make a tahini sauce instead with equal parts tahini, lemon juice and water.
mayonnaise – replace with a horseradish sauce or
in baking cakes – half a ripe mashed banana can work in place of eggs. This won’t work if you need to whisk egg whites.
boiled eggs – replace with another protein source such as cooked chicken or tofu.
wheat / gluten
bread – instead of wraps or bread for sandwiches, use iceberg lettuce leaves to ‘wrap’ your filling
flour – for baking cakes and things almond meal tends to work well.
breadcrumbs – use coarsely ground almonds or other nuts for coating in breadcrumbs
long pasta – make ‘noodles’ by shaving carrots or zucchini with a vegetable peeler.
long pasta – spaghetti squash
short pasta – chop cauliflower into bite sized pieces and
short pasta – use drained canned beans instead of pasta
quick nut switch – if someone is allergic to one type of nuts, but not others, you can usually just use a different nut.
crunch – when nuts are being added for crunch, try substituting another crunchy element – like toasted breadcrumbs, or finely chopped red onion or diced celery
protein and flavour – replace with pan-fried chickpeas or other canned beans.

Mom's Amazing Gluten free Pumpkin Bread

1 1/2 cups oatmeal flour
1/2 tsp salt
1/2 cup brown sugar
1 tsp baking soda
1/2 tsp ginger
1/2 tsp nutmeg
1 tsp cinnamon
1/2 tsp allspice
1/2 cup walnut
1 cup pumpkin puree( I use butter nut squash when pumpkin is not in season)
 olive oil 1/2 cup
2 eggs
1/4 cup water

Combine all the dried ingredients together.
Beat the eggs. Mix eggs in with the sugar, oil, water. 
Add wet mix with the dry mix until well blended.
Mixed in the walnuts gently.
Bake in a medium loaf pan at 350F for 55 min.

Sunday, April 3, 2011

Community Housing Comes Up Again

i'm having this dream of getting better, at least a bit better and creating a place where cfs people could live while they are sick. there could be amazing caregivers who were educated about cfs, an organic garden to help heal our bodies, and a community.

what do you think, dear friends?
    • Kassy Fatooh I've been dreaming this dream and have talked to others who share it. I have a feeling it will happen some day.
      Amberlin Wu Hug bulletin boards labelled "What I do for Pain/GI problems?migraines" etc. and covered with post-its from all of the cfsers.
      Franky Dolan
      I'm feeling really sick today, and this sounds certainly, like a dream...
      Also, an art room. Or perhaps, we can have our own little art rooms, or a huuuge art room and we each get our sections. There could be a lounge room with a TV and super plush couches to completely melt into. I like that. The yard could have fruit trees abundant. Mmmm, we could pick them and eat them under each tree, in the shade on a sunny day. I actually tingle with wishes, as I think about this dream.
    • Lee Lee Ingram count me in !!!
    • Lee Lee Ingram and we'd need some spunky men to rub our feet and shoulders!
    • Kassy Fatooh I love the idea of having our own private small spaces to retreat to but sharing large spaces such as garden, art room, maybe spa?
    • Amberlin Wu a hot tub under the stars!
    • Franky Dolan Oh yes! Yes to it all... Lee Lee, I am IN big time with your suggestion too. Aaahhhh. We could have body rubs in the hot tub, after retreating to our own spaces... Lovely thoughts...
    • Kassy Fatooh It would be nice if someone well would create it for us! Any takers, out there?

      Amber Alissa Chapman When I win the lottery, I pledge to help you all!
    • Cliff Wang It's the best thing I've heard all day. And you will get better in time.
    • Sarah Goforth I'll bring my roller skates and ELO album. :)
    • Amberlin Wu I'd call it, "Comfort House." ♥

A little Levity: You Might have ME/CFS if...

You might have ME/CFS by Heidi Bauer

1. If the name Bill Reeves makes you consider joining the National Rifle Assocation, you might have ME/CFS.
2. If you can replace Bill Reeves' name with at least 5 other scientists'/politicians' names, you might have ME/CFS
3. If dreams of exotic vacations now include hired sherpa and gurney, you might have ME/CFS
4. If you dream of hiring an Oompa Loompa to pick up dropped objects, you might have ME/CFS
5. If you spend your time inventing ways to motorize your bed, you might have ME/CFS
6. If you sound like a human medical dictionary to your family and friends, you might have ME/CFS
7. If you've had experience with doctors who place your symptoms right up there with the Tooth Fairy, Santa, and the Easter Bunny, you might have ME/CFS
8. If you need to use lightyears to measure the distance from your bed to the toilet, you might have ME/CFS.
9. If you've ever dreamed of a full body transplant, you might have ME/CFS.
10. If you could create a colorful mosaic for your foyer with one month's worth of pills.

Sunday, March 27, 2011

Intending to share the journey of treating XMRV.

Santa Fe, NM
"My daughter and I are XMRV positive by culture. We have started specific antiretroviral treatment. My intention is to share our journey with the medicine and science in context as it happens."