Rare disease Day 2/28/14

http://www.rarediseaseday.org/stories/123

TOS Diet days 19, 20, 21

It's been three weeks!
The cravings are hitting full-force.
I'm stuffing banana cookies in my face but they are not meeting the need.
I'm just being honest.

I have stuck to eating clean...until yesterday.
We had Pasties...I really needed a break from cooking, so we threw caution to the wind with these Michigan meal-in-a-pie turnovers smothered in gravy.

I have to be honest here and say that I am in the process of seeking another opinion about my TOS symptoms that have returned. I've had pain more often than not lately, and when I'm in pain I get to feeling depressive and seriously desire to medicate with foods that are serotonin (the feel good hormone) enhancers...carbs.  I even spent some time looking up healthy whole grain donut recipes, thinking that might help me to stay on the wagon, having a healthy substitute.
So far, it's just making me really want an apple fritter and cup of coffee, and feel sad because I can't.

I stopped the gin soaked golden raisins, choking them down just added insult to injury every day.

Every time I feel tempted to quit, I think of my fellow TOSers and decide I can hang in there a while longer.
I do think cutting the sugar and refined stuff may be helping, its just so depressing I'm not sure if it's do-able for the long haul?

That's the scoop. Gentle hugs ~

TOS Diet days 16, 17, 18

Not an hour after I posted my last update, my arms were aching, neck hurt - and here I just told you all I was feeling pretty good.  Then my husband walked by and took my picture-- Busted.

Just look at how I am sitting, horrible! I always start out propped up, sitting straight, but before long this is how I always wind up, trying to get at eye level with the laptop.

One thing is for sure, all the diet in the world will not remedy TOS pain made worse by poor posture and bad ergonomics. 

 I've tried a few things lately to get things up at eye level, and be gentle on the arms. Sitting like that usually last about 10 minutes before I desperately want to slouch again. 

I have been craving carbs like crazy, so I made these banana cookies and was really happy with them. They will be a staple around here now, maybe with a little peanut butter added.

My kids came home with Jets pizza the other night and I had to go lock myself in the bedroom to keep from getting into it. I tried making healthier pizza for lunch using Ezekiel bread-toasted, for the crust, sauce, toppings, nuked for 30 sec-voila! Pizza, right?! Wrong. It tasted like sprouted bread with pizza toppings. Eh.

I have been a good little doobie and not eaten anything that promotes inflammation, no junk, no coffee- sniff. And I've been feeling pretty good. Achy, but the strange Midwest weather is to blame for that.  As long as I can refrain from picking up my grand kids so much (so hard not to) or slouching when I sit, hopefully the pain level will stay calm.

But then with TOS, I never know from one minute to the next how I will be feeling.

Gentle hugs~

My TOS Diet days 12, 13, 14, 15

It is time for a TOS symptom update.

When I began this diet, I was having a lot of TOS pain, so much that my doctor prescribed Gabapentin to see if it would help. I also got a very expensive tube of compounded cream to rub on. 

That was fifteen days ago. I've not started the prescription yet, and the cream is use as needed. Because it is so expensive, I've only used it once so far.

I have noticed that I have not had the usual headaches, and the light throbbing I've become accustomed to in my neck, and arms is very reduced...I barely notice it at all. I've only needed ibuprofen twice in the last few days-another good sign. I think possibly cutting out sugar and refined foods, coffee, and eating only foods considered anti-inflammatory is helping, enough that I am motivated to continue walking by my favorite donuts at the grocery store...and that is saying a lot.

Most mornings I have two cups of green tea, sprouted grain toast, eggs, or whole grain cereal and almond milk, and a glass of water.

Lunch is usually a smoothie, lots of fruit, greens, ground flax. More decaf tea in the afternoon.

Dinner has been challenging, making food that is tasty and anti inflammatory.

Recently we've had:* baked chicken with pesto and cheese on top, brown rice, green beans.

*Turkey meatloaf, spinach tomato salad, sweet potatoes.  

I made banana icecream in the blender couple nights ago, so yummy..the grand kids loved it.

I'm also hanging in there with the gin soaked golden raisins, eight of them every night, on a teaspoon. I take them all at once, chew fast, gag, drink water. My tongue feels tingly after...I'm giving it another week. If the pain gets worse when I stop taking them, I guess then I'll know it was helping.

Today's lunch, pizza on sprouted grain tortilla, two of them. 

That's the diet scoop on day 15.

Gentle hugs~

My TOS Diet days 9, 10 and 11

For the coffee quitting progress, day nine, I had one cup of half caff in the morning, some green tea during the day, and more water. Day 10, just green tea in the morning, a cup of black tea in the afternoon-but no coffee. Day eleven is the same, green tea only so far, and more water. Feeling tired, but I believe that will pass and I hope to be more clear, less headachey, and feel better overall. I'm trying out these organic green teas I found at my local health food store, also Stinging Nettle Tea, which I've read improves inflammation. So far, they all taste like grass water to me. I also drink Lipton citrus green tea, but hope to find a better choice that is organic, less chance of pesticides.

I've pretty much de-junked the cupboards of foods not on my tos diet, so when I get to feeling the itch to snack, I open the cupboard door and there are the nuts, almond butter, exekiel bread, unsweetened applesauce cups, dates, triscuits, almond milk and unsweetened whole grain cereals, raisins, natural dried fruit. Bananas and oranges on the counter.

When I open the fridge, I see apples-malic acid in apples is supposed to reduce inflammation. Also I see almond milk-I blend it fresh in my blender, but you can find it packaged with minimal additives and sugar.

Lots of veggies in there too. I found a mini-food processor at the thrift store and it has been just great to use that to chop stuff, saves my aching arms for sure!

I've continued the smoothies, but backed off from one quart to half that, or more if I want. The bloating is much improved. Pictured here is My TOS Army Green Smoothie: red grapes, spinach, flax, avocado, apple, pineapple juice.

Two nights ago supper was bakes chicken thighs, sweet potaotes and green beans-frozen. Last night supper was chopped salad, my own dressing made with olive oil, balsamic vinegar, raw honey, salt, pepper. Also salmon patties made with 4 eggs, 2 cans salmon, chopped onion and celery, fried in olive oil, salt n pepper. Delish.  

I also made a totally anti-inflammation legal fruit crisp. Ingredients: Mixed fruit/3 chopped apples, 1 can slices peaches(in real juice, drained), 1 cup mixed frozen berries-in a 8x8 baking pan. Topping: 3/4 c. gluten free organic oats ground into flour, 1 c unsweetened coconut shreds, 1 c chopped nuts-walnuts, pecans, 1/2 stick real butter. Drizzle fruit with raw honey or sprinkle coconut sugar, mix topping ingredients together, sprinkle topping over fruit, bake uncovered 350 30-45 min. Yum!

Breakfast has been tea, Ezekiel bread toast, or Ezekiel sprouted grain cereal, or whole wheat squares cereal with raw honey and unsweetened almond milk. That, or eggs and toast, usually a banana too.

I'm including a picture of the chocolate I indulge in every night. Two squares, ok, sometimes four, but it has to be at least 70% dark chocolate for it to be considered anti-inflammitory, according to The Diet for a Pain Free Life book.

Which is fine by me because dark chocolate is awesome.

 Today's smoothie is My TOS pineapple enzyme anti-inflam shake: Fresh or frozen pineapple-not canned. Almond milk, raw honey, ground flax, apple, banana, orange.  For those of you who do not have a high powered blender, I started making smoothies with an inexpensive 'Bullet' blender years ago, so it can be done. Investing in a good blender has been a smart choice though and I highly recommend it.  Thats the tos diet update. Gentle hugs~

 

TOS Diet days 7 and 8

Now, before you see the picture and run away afraid I might try to persuade you to give up your coffee-no no! I am trying to figure out what is best for me-to lower my own pain levels. If coffee works for you, please enjoy some for me. However, I am back to being convinced that caffeine  is too harsh for my nerves, and when you're trying to control nerve pain, anything that is a nervous system stimulant is possibly adding to the problem according to my thinking. Don't get me wrong, I love my coffee, but my intuition tells me I need to seriously cut it out if this diet is going to stand a chance at helping my inflammation and pain levels.
I was telling my daughter my mental dialogue this morning as I thought about not having coffee....despair, life is not worth living, what is there to look forward to, depression and misery...whimper. Just pitiful.

I should've gotten off coffee before I started this diet. I'm going to be so tired and grumpy the next few days while I quit. But it's for the best, I hope.

I've been eating (choking down) the Gin Soaked Golden Raisins, 8 per day. Yuck!! But I'll stick with it 'till the end of the month to see if it helps.

Still eating just anti-inflam foods, though I cut back on the smoothies, was getting too bloated. Maybe enzymes would help with that? This diet has increased fiber intake, but I've not done as well at drinking more water, resulting in slowed down (virtually stopped) intestinal transit. So I'll try to replace coffee with more water.

I am going to post meal pics the next few posts so you can get an idea of foods on this diet.

Any comments, things you'd like to see me try on My TOS Diet, email me. I'm pretty willing to give things a shot to see of they work:)

Gentle hugs~

My TOS Diet days 4, 5 & 6

I've stuck to eating only anti-inflammitory foods the last three days, even though its been a stressful few days with increased TOS pain. I have to fight the urge to treat myself to something sugary when the pain ramps up. I think maybe I'm past the worst of the sugar cravings now at day 6.

It has become even more important to me in the last couple days that this diet work and reduce inflammation and symptoms. So I'm giving it my best shot.

I've talked with a fellow TOSer from the facebook support group who has had success in reducing her TOS symptoms using The Gaps diet. I am very familiar with The Gaps diet because I've witnessed my two year old grandson transform from a little boy covered with eczema to having to clear healthy skin by switching to it recently.  So I've decided to incorporate elements of Gaps diet along with The Green Smoothies Diet, and The Diet for a Pain Free Life.

I made some raw cookies today. Ingredients: dates, vanilla, walnuts, 1/3 cup almond pulp-leftover from making plain almond milk-unsweetened shredded coconut. Pulsed all together
in my Blendtec blender, refrigerate, roll little balls, flattened, dredge in raw cacao powder mixed with coconut sugar, kept in fridge. Sweet and yummy.

I also made kale chips. Tear washed Kale into bite size pieces, fill big bowl, drizzle with olive oil, sprinkle sea salt and nutritional yeast flakes, layer in dehydrator of on cookie sheet in oven on lowest setting for about 10 minutes. Delicious!

It is true that this is pretty health-nut type food. I grew up with health nut parents who sold specialty supplements. My mother made things like whole wheat carob chip cookies for our school lunches. I only got away with trading my cookies for a twinkie or hoho with an unsuspecting kid twice before word got around that my cookies looked good but tasted terrible!

I'm trying to make this way of eating doable for the long term, so I'm using sources as affordable as I can find. I order some things online, glean from clearance racks of my local health food stores, buy frozen produce or off the mark-down rack. I LOVE discounted brown spotted bananas!! Here's why...I peel and break them into pieces, throw in freezer, then at night I put the bananas in my blender with a splash of coconut or almond milk, some vanilla and make dairy free banana icecream :) I add cocoa or peanut butter sometimes too, very healthy and delicious.

So the next couple days I'll keep working on sticking to just one cup of regular morning coffee, and making that cup smaller each day, trying to switch to green tea alone. Also, I will stick to only eating foods that do not promote inflammation. I really hope this works. I know it will take some time, I'll try to be patient.
Gentle hugs~

TOS Diet Days 3 and 4

I am sharing this image of The Spoon Theory with you all today to help explain why I have changed my mind about one aspect of My TOS Diet plan.
You see, if you have TOS or chronic pain, you know you only have so much energy, can deal with only so much before your pain flares up and you're just done, d.o.n.e.

Well I thought stopping coffee would be a good thing to try for this diet. I've done it before. Except, when I am in a state of pain, say about level 5 or higher, my brain wiring short-circuits. I do not think straight when the pain volume gets at that level. I get stuck in a pain-loop. It's kinda scary, and I don't like feeling out of control like that.

Well, stopping coffee has been unpleasant, the usual headaches, tiredness. But, as I've previously mentioned, my bowels depend on coffee for the little nudge, so without it--even with green tea, I've been having, ahem, "a difficult time", which just uses up too many of  my spoons for the day. So, with that said, I've decided to keep the one cup of strong coffee and continue to eat only anti-inflammatory foods, herbs. I hope you're not too disappointed in me.

I'm still doing daily smoothies, which I'm finding spike my blood sugar if I make them too sweet. Need some protein to balance it or I get jittery. Also, I need to prep more and have anti-inflam snacks ready for when the munchies strike, usually in the evening.

Dinner last night was venison lentil stew-no potatoes, lots of carrots and mushrooms and lentils. My son took one look at it and said "this is your diet food isn't it!?"

TOS Diet- Days 1 and 2

 Day 1-
I'm weaning down off my regular large cup of strong coffee, in small increments.
Today I had a small cup of regular coffee, and then green tea after that during the day. Green tea is anti-inflam, and I do like it, so I'm making the switch.

I won't bore you with every tiny detail of what I'm eating, but I am writing it all down.
Had a quart of smoothie today. For dinner I poached some chicken in water, then added herbs to season and boiled a bag of frozen cauliflower then blended it up with a little salt and olive oil, was very smooth and yummy.
After dinner, I was VERY bloated. Need Gas-Ex.
Still feeling affects of last weeks nerve pain flareup in my neck and upper back, but arm is better, pain level 1-2 unless I fold laundry or try to shovel snow off the steps-then I'm throbbing.

Day 2-
Feeling good, pain started out at a 1-but it was a lazy, snowed-in day. Doing a lot of reading.
No coffee this morning, just caffeinated green tea with my Ezekiel Bread raisin toast.
The coffee withdrawal headache hit me about 3pm. I had some decaf coffee and it made the headache worse.
Had another quart of smoothie today.
I've had the munchies today. I am telling myself I can have anything I want as long as it is anti-inflammatory foods, so I had a few squares of 72% dark chocolate(approved in The Diet for a Pain Free Life book). After eating it I felt a little sick. Maybe green smoothie and chocolate does not mix so well?

Trying to drink more water. I'm going to get out an old Gatorade bottle and fill it daily as my water goal. That's 32 oz, an improvement for me. I hate to make myself drink water when I'm not feeling thirsty, makes me gaggy. I'll try adding cucumber or fruit to it-no sweetener though.
Day is winding down now, pains at a 2-3, which happens most days-gets worse as I go through the day.

Found this article about eating anti-inflam foods on Pinterest, a great article to read, leaves me feeling hopeful anyway.
http://tonetiki.com/2013/05/21/cure-your-nerve-pain-with-food/

Gentle hugs~