Saturday, December 31, 2011

PreGAPS part three

Just received my large free jar of coconut oil from Tropical Traditions.  Along with organic tomato paste and some all natural deodorant.

One of the things I've been doing over that last several months is trying to reduce my exposure to toxins.  I figure if I'm having to get weekly IVs of glutathione so my body can rid itself of toxins maybe it is a good idea not to come in to contact with toxins in the first place.  I already ate organic and drank filtered water so that rules out those sources but I was still using dishwasher detergent, shampoo, soap and deodorant.

Last month I went "poo-less", as it is commonly known in the blogsphere.  I'm now using a mixture of 1T of baking soda to 1c of warm water instead of shampoo and 1T of organic vinegar to 1C of warm water instead of conditioner.  It works AWESOME!!!  My hair is soft, easy to comb out, full of natural curls, and much less oily than it used to be.  My scalp is also less itchy.  I thought my head had gotten greasier over the years.  Now I think the shampoos have become less effective.  I would shower every morning and look like a greaseball by the end of work and I was at a desk or lab bench most of the time.  Now my hair stays clean for 2-3 days.  Woohoo!!

I've also been on a quest to find some natural deodorant.  I just can't go deodorant free.  I stink.  Particularly with the hot flashes I've been experiencing lately.  I bought a solid but the scent was too overpowering.  I just got a new roll on today from Tropical Traditions.  The scent is a bit strong at first but it quickly calms down to the tolerable range.  Now I have to see if it works all day.  It has coconut oil, baking soda, essential oils and a few other innocuous ingredients in it.  A vast improvement over the chemical laden antiperspirant I was using.

Since I don't wear makeup that isn't an issue.  I already use an organic fluoride free toothpaste.  All I'm left with now is soap and moisturizer that I need to find replacements for.  BTW, toxins are readily absorbed through the skin which is why I'm worried about this stuff.

As far as the dishes go, the soap is highly caustic and quite nasty to ingest.  Hubs always uses too much of it and my glass would always have a ring of soap bubbles in it when I filled it up with water to drink.  Hence, when I use regular dishwasher soap I run the dishwasher a second time on a short cycle with no soap.  This rinses off the dishes.  I could (but haven't yet) put vinegar in the rinse dispenser which will also help rinse the excess soap off.  I was using Biokleen soap which was awesome.  It left the dishes squeaky clean without any soap residue without having to run the dishwasher twice.  When I ran out hubs went back to the regular crap.  I need to buy some more of the good stuff.  It even comes in a scent free version.

We are still using old school Tide for our laundry.  I'm just not that worried about my clothes.  I should be but I'm focusing my energy on cooking.  I have found recipes to make your own laundry detergent but I don't have the energy to make the stuff even though it is pretty easy.  I did buy the borax for it but still have to find the washing soda.  Maybe I'll have my kid grate up the bar of fels naptha I have hanging around in the laundry room.

I've also been trying to stay away from inhaling stuff.  This can be difficult since hubs is a gearhead at heart and is always out in the garage building cars.  This means all sorts of airborn nasties floating back into the house such as gasoline or paint fumes.  Ugh.  He makes fun of me now but I don't care.  I'm trying to reduce my toxic load so that my body doesn't have to work so hard.

While I have been having detox baths with either epsom salts or baking soda about once a week, the GAPS diet calls for a nightly detox bath and rotates through a series of bath additions: epsom salts, baking soda, apple cider vinegar and seaweed powder.  I have to order the powder still.

In general things are buzzing along.  Prep is well underway.  I have a second source for beef bones and tallow and I'm going to comparison shop with Whole Foods tomorrow since they are a tad expensive.  $5/lb for bones is a bit excessive.  They should run about $2.

Thursday, December 29, 2011

Pre GAPS part two

I'm making some progress in my prep work.  I've ordered the Internal Bliss cookbook.  I checked Wellness Meats and found that they were out of beef bones, chicken backs and tallow.  I'll have to wait to order more.  I found a cheaper source for the fermented cod liver oil I'm supposed to take.  The manufacturer sells it for half the price of the GAPS site.  I won't get that for a few weeks since I don't need it until stage 2 or 3 of GAPS which will be roughly the third or fourth week of January.

I also talked to hubs.  I told him that he will have to sneak ice cream in the garage while I'm doing this.  The temptation will just be too much for me if there is anything in the house.  He agreed to support me on the diet.  When I asked him what he would eat he said we'll just wing it.  I told him that the food won't be that great for a couple of weeks until I can add some variety and a few more cooking methods back in.  I told him that he could always stop for a burrito on the way home if he gets sick of the weird food.

I am very scared that I'll cheat.  I'm weird about food.  I wish... No I LONG, I PINE for normal food.  I love sandwiches and cake and cookies.  I love a bowl of good pasta once in a while.  I love ice cream.  However, these foods no longer love me.  I keep trying to tell myself that what I am doing is healthier for me.  That I'm doing this to fuel my body with nutrient dense foods.  That I'm using food to heal my guts and possibly heal my CFS.  But, OMG the temptation.  The cravings.  For instance, hubs eats normal bread.  The craving tonight for a regular ham sandwich was unbelievable.  It didn't matter that I wasn't hungry.  It didn't matter that it would give me many pains in my intestines.  It didn't matter that I would end up burping up stomach acid at 5am.  By God I wanted an F'n ham sandwich.  I managed not to succumb.  Not sure if I'll be able to do this for a whole month though.

What I did instead of making myself a yummy ham sandwich was poach a hamburger.  This is one of the GAPS recipes.  You poach it in bone broth.  I made it with some peas.  While this was tolerable, it is not the most tasty thing to be eating.  More like chewing on fishy shoe leather.  However, I can deal for the first couple of stages of GAPS with this.  I'm thinking a lot of poached fish will be in my near future.  I like that way better than poached burgers but I do want to rotate through different meats while on the diet so that I get different nutrients.

I'm beginning to suspect that these specific food craving are actually fat cravings.  I want to drink coffee for the cream in it.  I want the ham sandwich for the mayonnaise.  When I was drinking raw milk I would have a nice big glass of milk and I didn't have these problems.  Maybe when I get more fats into my diet during GAPS these weird cravings will stop.  Prior to the intestinal virus I was getting most of my dietary fats from dairy products.  I'm still not back up to the dairy intake I was on prior to the illness.  I seem to have way more cravings now that a few weeks ago.  I've been on a low fat diet for 20 years now.  I just not used to eating a high fat diet yet.  I'm learning though.

More Kitty Humor

funny pictures - Datz me before Jenny Craigz.
see more Lolcats and funny pictures, and check out our Socially Awkward Penguin lolz!

Pre GAPS part one

The Gut and Psychology Syndrome diet.
Warning this post is going to ramble cuz I'm in the middle of crashing from the exciting wonderful weekend I had with my family.

 I've been thinking about doing GAPS for a while now but have been too scared. I was worried that it would make me really sick like the elimination diet did in the spring. So what changed my mind? Having that nasty intestinal infection.

While it was going full tilt, I looked up the foods I could eat on GAPS Intro diet knowing that these foods are easily digested which would give my guts a break and a chance to heal from the infection. For over a week I subsisted on chicken broth, chicken soup, soft boiled eggs, pears and butternut squash soup.

Even though I was horribly sick and in pain, I also had days in between where I felt fine and had no pain at all even though I had stopped all of my meds and supplements. That is right; no joint pain, no back pain, no muscle pain, no headache. I also had a clear head. No fog. I could read books no problem. I had tons of energy. I got a lot accomplished when I wasn't having "an episode" and as long as I adhered to the strict diet. I slowly added foods back in but I'm still not back to my old diet.  I'm eating dairy again but not a lot of it and no raw milk and no yogurt.

So despite having an intestinal virus and despite eating a severely restricted diet, I didn't keel over. I didn't get sicker like I did this past spring. I even felt better from the CFS in between the bouts of intestinal torture. Now that I'm eating grains again and cheated like crazy over the Christmas weekend all the aches and pains are back. I've had to start the Celebrex again. I'm crashed today.

The other thing that I'm taking into consideration is that the pain meds I've been on damage the guts. I've had serious problems with malabsorption of just about every vitamin and mineral they've tested for. I've been taking aspirin or Vioxx or Celebrex for years now. Probably almost ten years. This has got to cause some serious damage and would explain the sudden wheat intolerance that hit me about six years ago.

I was also reading on Ncubator yesterday about a woman that has recovered most of her functionality after 15 years with severe CFS with a combination of things, a biggie being diet.

So what is pushing me over the edge from thought to action?  Well the ebook "What can I eat now? 30 days of recipes and tips for the GAPS Intro diet" is on sale for $14 from Cara at Health, Home and Happiness.  I bought my copy yesterday.  And I just found out that a 30 day challenge is starting over on Our Nourishing Roots on Jan 15th. This will give me just enough time to order supplies in and get the required reading done. I'll try to report on my progress here.

GAPS Plans for this week:

  • Tell hubby what I'm going to do.  Discuss it with him so he doesn't try to temp me with trips to the ice cream store or bring chocolate mousse home (yes he did that to me during my intestinal infection and I was stupid enough to eat it).
  • Order Internal Bliss cookbook from the GAPS store and any other supplies I need.  I already own the GAPS book and Nourishing Traditions.
  • Get together an order for US Wellness Meats for soup bones and beef tallow.  I'm going to have to watch their website since they are frequently out of both.
  • Start collecting GAPS recipes.
  • Read the book.  (this is going to be a toughie since I can't read/comprehend text when I'm crashed)
  • Maybe start introducing some of the foods into my current diet.  Try them out and see if I like them.  I love the squash soup.  I've also made cauliflower soup which was good.  My fav versions aren't GAPS legal since they both have dairy in them which will be a no no on the Intro diet but it is a start.

Thursday, December 22, 2011

Tummy Trouble Part 2

Had my follow up with the doc today.  He thinks my intestines became infected.  He doesn't know how or with what.  Nothing showed up in my tests.  If it was bacterial there was no trace of it in the poo sample.  If it was viral it wouldn't show up.  He told me that viruses tend to be 24 hour things so being sick for over a week didn't make sense.  Since I seem to be on the mend he is going to let it go for now and have me check back in with him in two weeks.  Maybe it was all the activated charcoal and bentonite clay I ate that cleared things out of my system.  Maybe I confounded the tests.  Maybe I confounded the bugs.  It is all speculation at this point.

I've had some odd side effects from this lack of intestinal fortitude: I seem to be able to eat wheat now with no repercussions and I have way fewer aches and pains than before.  I'm also quite warm this evening although the room temp is the same as ever.  Because of my belly aches I stopped all my meds.  I did fine for several days before succumbing to some joint pain.  I started on my Celebrex again which nipped that in the bud.  I decided (and doc agreed) not to start the hydrocortisone again.  It is a nasty med that needs to be used with caution.  However, I am sitting here pain free in the middle of a major rain storm.  This is unheard of for me.  Rain typically kills me.  It has for years.  What is different now???  Why do I feel fine???

I'm just wondering if I just had a "health crisis".  These often happen when a massive change in body chemistry occurs.  It is the state of getting worse just before getting better.  I've been on my new diet since August.  I don't always behave but I'm probably about 80% compliant.  I know I've managed some healing with it.  My head is clearer.  I have a little bit more energy.  I can read books again.  I've been able to read science papers occasionally.  I've been able to plan more often.  I've driven myself around to local appointments occasionally.  Maybe this week of poo is the beginning of my recovery.

I want to get excited but that is foolish.  I keep reminding myself that I have to live in the moment.  Now is the only time that I have and I have to work with the energy level I have at the moment.  But I want to be optimistic.  I want to jump up and down and do my happy dance.  I'm feeling better.  I want to be better.  I want to recover.

Sunday, December 18, 2011

Tummy Troubles

"I am so rumbly in my tumbly."  -Pooh

But in my case it wasn't due to hunger.  Yes, my stomach bug got worse.  Yes, I almost ended up in the hospital due to dehydration.  I've had a CT scan which came back fine and a stool sample done.  Still waiting on the results of the latter.  It seems I can only eat chicken soup, eggs and fruit or I start to feel sick again.  At least I managed to stay home.  I got my appetite back today again.  I ate a real dinner instead of soup.  It remains to be seen if it messed me up again.  I do need to make more soup since it is very healing for the guts.  I'm now seriously considering doing GAPS since I'm barely eating anything anyway.  It would hardly be a stretch for me to do intro GAPS for a week and build back up to full WAPs.

My being sick got me reading about gut health.  In my travels, I ran across this series of articles on GERD and gut health which is very very interesting and explains why I'm starting to have so much trouble with my guts of late.  I have now been on Celebrex for two years straight which is the longest I've ever been on it continuously and I've been taking hydrocortisone since the spring.  Both of which damage the lining of the stomach. Gee I wonder why I'm having so much trouble!?!  So without further ado I give you:

What Everybody Ought to Know About Heartburn and GERD
The Hidden Causes of Heartburn and GERD
More Evidence That Bacterial Overgrowth is Responsible for GERD
How Your Antacid Drug is Making You Sick (part A)
How Your Antacid Drug is Making You Sick (part B)
Get Rid of Heartburn in Three Simple Steps

While some of these articles don't apply to me since I was only on proton pump inhibitors for a very short time, the rest of the information rings true.  Some things I can vouch for:

  • drinking water makes me worse (dilutes what little stomach acid I have)
  • drinking lemon water or kombucha makes me feel better or at least doesn't make things worse
  • eating yogurt makes me feel better
  • drinking raw milk makes me feel better
  • lying on my stomach will often bring stomach acid up (it forces the valve to open due to pressure and bloating)
  • going almost grain free has helped
  • going almost sugar free has helped
  • drinking peppermint tea helps
  • drinking/eating ginger helps

Now I'm wondering if I can go without my pain meds for an extended period of time so I can get my guts working properly again.  That would be wonderful!!  I love food and would really like to be able to eat again.

Wednesday, December 14, 2011

Long Time No See

Or long time no post in my case.  I've been riding the relapse rollercoaster and am presently getting over a stomach bug that laid me up for two days.  I'm still a bit off but I've got my appetite back even though I'm still very limited with what I can eat.

I've been busy watching TV and movies.  Nikita is my current TV obsession.  Not sure why exactly that show appeals to me so much.  The characters are mean and manipulative but the acting is pretty good and the plots don't always turn out the way you expect which I love.  Highly entertaining.  

My other TV viewing includes, Revenge (another bunch of mean characters: this time mean rich people instead of mean assassins), Warehouse 13 (fun SF), Eureka (more fun SF), Fringe (modern day X-Files), Suburgatory (quirky comedy), Spongebob (yes I like Spongebob) and Shaun the Sheep (UK claymation with no words!! and very funny and hubs likes it too).  Once in a while I also watch the UK version of Being Human (it can be a bit gruesome so this isn't everyday fare).  Also I started Vampire Diaries but got bored of it.  I might go back when I run out of more interesting things to watch.

I've been pretty lucky with movies lately.  I enjoyed Limitless which is an SF piece.  Hubs read the book but the movie sounds better (more upbeat).  I finally watched The Truth About Cats and Dogs.  While I've finally decided that Uma Thurman's acting is spotty at best (loved her in Kill Bill and Pulp Fiction but she was terrible in this movie and The Producers), I liked the other lead woman in this and the lead guy is so easy on the eye.  It is a modern day Cyrano de Bergerac with the genders reversed.  The Producers (the newer version) was fun to watch.  Bed & Breakfast was an okay romance.  The predictable plot dragged this movie down.  A better romance was Morning Glory which I enjoyed.  Harrison Ford and Diane Keaton were great as cranky news co-anchors.

With help from the hubs (yes, I've been a bit brain foggy these last few weeks) I finally got a book loaded onto the iTouch.  I'm now listening to The Guernsey Literary and Potato Peel Pie Society.  It is wonderful!!  It is a story told through letters written just after the war in England.  I love the way it is read by multiple actors as well.  It helps me keep the letters straight.  I highly recommend the book and audiobook and I've only listen to about an hour or so of it.

Monday, December 5, 2011


There is this neat stuff that I heard about from another blogger, Cheeseslave.  It is called Zinc Tally.  It is a simple test for zinc.  Now I've been taking a heavy dose of zinc since the spring and was getting curious how my levels were so that I could either quit taking it or maintain my dose.  I happened to notice a bottle of the Zinc Tally on my chiropractor's desk.  I asked him if I could get tested.  You take a few ounces and swish it around in your mouth for ten seconds if it tastes like nothing you are short in zinc.  If it tastes terrible then you are fine.  Somewhere in between and you are deficient but not horribly low.  Guess what?  To my surprise I was deficient.  Yup.  No taste at all.  How weird is that?  I've been on this stuff for over six months now.  Of course, it is one of those supplements that I've not been good about taking thinking I had too much in my system.  So now I need to get a better zinc supplement.  I've been taking 20mg of monomethionine (heck I have no clue what it is and I took geochem).   I need to check with my doc and find out what I should be taking cuz this stuff isn't cutting the mustard.
BTW, you can get Zinc Tally from

Trust & Betrayal Part 2

Sunday, December 4, 2011

A New Plan

I need a new plan.  I am now in my third spectacular crash within the last six weeks.  As soon as I start feeling better I start cooking, house cleaning and driving.  And the inevitable happens.  Why do I do this to myself?  I guess I want to feel normal.  I want to act normal.  I want to have a clean kitchen to work in.  I want good real food to eat.  I want to make yogurt and bread from scratch.  I want to drive myself to appointments.  I want to be able to walk into the docs office under my own steam.

I spent last week driving myself around town.  I went to the shrink, the chiropractor and the masseuse. I cooked yummy real food dinners and made myself omelets and sauteed kale for breakfast everyday.  I picked my kid up from the bus stop.  What was my downfall?  I did the dishes.  I was sick of the kitchen being a mess.  On Friday I showered, dressed, made breakfast, went to a massage, did the dishes and picked up the kid.  Wow!!  I haven't done all that in one day in a dogs age.  I got back from the bus stop and collapsed on the couch.  I'm still there three days later.  I've been using the walker to get around the house when I can even manage to get up.  Why oh why??  I know better.

So I need a new plan.  Instead of being driven by instinct, which apparently is out to get me, I need to come up with something more structured so I don't end up permanently stuck in bed.  I also think I have to go over this game plan with hubby so that he understands what is going on and doesn't expect me to exceed my limits.  Like someone said it is like having a car that only get $5 of gas per week.  Once the gas is gone that's it for the week.  I have to plan my trips better.

Now what?

I think forced resting is going to have to be part of this.  What I did back in September worked well: do something then lie down for at least 20 minutes.  So, shower: lie down.  Cook: lie down.  Dress: lie down.  Drive: lie down.  Etc.  No cheating.  I might have to set a timer to limit my internet activities when I first get up in the morning.  It is like a drug.  I have this urge to go online first thing. It often compresses my schedule when I have to go to an appointment and the rest periods are the first to go.  I need to not do this.  Facebook will still be there in the evening when I can take my time going through things.

And back to the no sugars, no grains, no cheating part of the diet.  Back to at least a Paleo diet plan.  I think I'm going to have to enlist my doctor or my nutritionist for help to incorporate all of the vegetables for Dr. Wahls diet.  I need to be able to eat cruciferous vegetables without the heartburn or Prilosec.

The Plan:
Forced rest periods
Day off between appointments/trips
Make doc/nutritionist apt to take care of stomach probs
Back on Paleo diet with as much veg as I can handle comfortably

Being able to cook breakfast and dinner each day
Make juice daily
Being able to make simple items such as yogurt and easy Paleo baked goods (baked goods reduces the urge to cheat on the diet)
9 cups of veg a day: 3 cruciferous, 3 mixed colors, 3 others/fruit
Being able to drive to local appointments
No more major crashes


This is one of the reasons I decided to change my diet:

Despite the drastic crashes, I am doing better than I have been during this past year.  I'm driving and cooking again.  I'm still not up to the nine cups of fruit and vegetables that Dr. Wahls recommends but I'm getting there.  My biggest problem has been gastric acid.  The cruciferous vegetables produce stomach acid.  The week I managed to eat tons of vegetables with spinach, kale, broccoli, cabbage, or brussel sprouts at most meals I thought my stomach was going to sear a hole right through my chest.  I've backed off the amounts but have added kelp and digestive enzymes to my supplements and am going to add sulfur as well.  Here is my current average day:

breakfast: sauteed greens (kale, chard or spinach) with 1 or 2 pastured eggs either poached or as a cheese omelet with sage
snack: yogurt and Paleo bread (a bread made with almond flour and flax meal)
dinner: pastured meat, 2 veg and sometimes a starch such as potato or rice
late meal: fruit, cheese and nuts
drinks: raw milk, kombucha (fermented tea), fresh carrot juice with a beet added in, filtered water, black tea with raw milk no sugar
treat: handful of dark chocolate

Wednesday, November 30, 2011


I aspire to embrace life with a joyful heart.

Trust and Betrayal

In order to live our lives as reasonably happy human being we have to put a certain amount of trust in others.  Trust in our parents to provide a safe and healthy environment for us to grow up in.  Trust in our family to support us in our endeavors.  Trust in our spouse love and support us through difficult times.   Trust in our workplace that our bosses and coworkers will support us and listen to us.  Trust that our doctors will heal us.  Trust that the insurance you paid for for years will provide the benefits that are listed in the shiny sales brochure.  Trust that if we treat our bodies well they will last until at least 60 before starting to crap out.

But how do you overcome the betrayal when these things don't come true?  How do you overcome growing up in an alcoholic household?  How do you overcome an abusive relationship whether that is a parent, sibling, spouse, co-worker, boss, doctor or even our own bodies?  How do you not spiral down the rabbit hole of self pity, self loathing and despair?

These are a few of the questions that have been rolling around in my head today.  I don't have any answers yet.  I'm guessing that I'm going to have to find other things to trust whether that is Buddhism or a Paleo Diet or something else entirely this remains to be seen.

BTW, trust and betrayal was at the core of my nuclear meltdown last week.  My brain has fused all of these independent events together into one hateful hurtful mass.  Hopefully I'm starting to exorcise my demons.

Sunday, November 27, 2011

Nuclear Meltdown

This blog is not a happy blog.  It is a real blog.  It is the documentation of my illness.  Some days I wish it were a happy blog.  One that would inspire people but some days just suck.  This illness sucks.

Over these last three days I had a major meltdown.  I know the trigger.  I can map out events both physical and mental.  However, it still defies explanation of sorts.  It was such an over reaction to a minor event.  Husband made an off hand comment and three days later I find myself in bed completely limp and unable to open my eyes due to lack of energy.  It wasn't a simple crying jag and then I felt better.  This was a hard core full blown melt down.

Since I decided to ride the wave of bad energy instead of fight it, I'm now on the other side of it.  I feel better.  I physically have more energy.  I'm happy.  I'm in a good mood.  I'm looking forward to tomorrow.   I'm bored, which I always take as a sign of doing better (I'm never bored when I'm at my worst, I'm too busy being sick).  

For me, it seemed more like a purge of bad energy.  I've finally battled some of my old demons and won.  I'm ready to take on this illness and the world again.  Maybe this is part of the decent into Hades.  Part of the rebirth of the Phoenix.  Part of the recovery.  Maybe parts of me have to go up in flames before health and balance can be restored.  While I'm glad I'm doing better, I'm hoping future purges aren't nearly as dramatic.

Tuesday, November 22, 2011

Getting My Head Screwed On Straight

I have read various pieces claiming that blood circulation and fluid circulation is reduced in the brains of CFS patients.  There is definitely brain involvement in my case.  After all I loose the ability to speak when I get really run down and I haven't been able to read consistently since last summer.

One of the stranger symptoms that isn't really talked about is the stuffy feeling I get at the base of my skull.  That is where my constant headache has been since this started.  The headache only goes away with the use of Celebrex, an anti-inflammatory.

I do have to reveal some history about myself, I've had a lot of head and neck injuries over the course of my life.  I've fallen on ice several times both resulting in concussions.  I had a tree fall on my head (weird longish story) which resulted in yet another concussion with symptoms that lasted for months.  It also resulted in neck damage.  I was rear-ended.  Twice.  Within one month.  Severe whiplash both times.  I still have nerve problems in my hands and feet from those and they were years ago.  Needless to say I have been under the care of a wonderful chiropractor for years.  He keeps my neck in line and my head screwed on the right way.

This last crash resulted in the congested feeling at the base of my skull.  I knew my neck was messed up and I hadn't seen Dr. Jones for several weeks so hubby drove me over there last Thursday.  I got instant relief.  I suspect that the flow of cerebral fluid had gotten blocked or at least severely reduced due to my neck being seriously out of alignment.  He had to do a lot of work to get it sorted out.  The congested feeling went away and I started a slow but noticeable improvement.  I wish someone would actually study this illness and find out if neck alignment has anything to do with this illness.

Anyway, I can't say conclusively that all of my improvement over the last few days has been solely from chiropractic adjustments since I bumped up my hydrocortisone doses as well.  Anything to get the inflammation reduced.  I do feel that both the pills and the chiropractic are important parts of my care and I won't give up either one.  I always have at least minor improvement after a visit to Dr. Jones even without any change in my meds.  He may not cure me but he certainly helps me not feel as rotten.

Now that I'm functioning better I want to get back to improving my diet.  I managed to find sprouted spelt bread at Whole Foods.  I have sprouted spelt and sprouted kamut flour in storage in the freezer and spelt sourdough starter in the fridge. I have yogurt culture stored in the fridge and pastured milk in the freezer.  And my meat delivery came today.  So fire up the stove and get ready to cook!  I'm up and about again.  Woohoo!!  Thank you Dr. Jones!

Sunday, November 20, 2011

Disaster Averted

With every major crash there is a sense of impending doom.  Is this it?  Will I recover from this one?  Will I continue to get worse until I'm unable to move out of bed?  Will I be able to feed myself or look out of the window a month from now?  Or is this transient?  Will I recover?  Will it be a day, week, month, year, decade before I gain even a little ground?  With this illness one never knows.

Today, I felt better.  Of course I did too much.  But what is too much?  I had the nerve to take a shower because I stank.  I had the audacity to go to the store to order a turkey for Thanksgiving.  I had the gall to go out to dinner with my husband because I love eating out with him.  Yes, I was brash today.  I did too much and I enjoyed it.  I had a good day!  With this illness one never knows.

Being Human (UK)

I recently reinstated my Netflix account.  I found that Amazon Prime just didn't do it for me.  They have very few free good movies or TV shows.  Anything half decent they charge money for even if you can get it on Hulu for free.  Many of the "movies" are dummy logos with a ten minute interview clip rather than the full version.  The full versions you have to pay money for and you don't get a discount as a Prime member.  It is also really hard to browse around.  The menus keep dumping back to the pay movies.  Not worth the money so I switched back to Netflix.

One of the new shows I found is the British version of Being Human.  I've watched a few episodes of the American version on Hulu.  It passed the time but wasn't anything spectacular.  The English version is fantastic!  Great acting.  Good stories.  And I found myself relating to the characters in an odd way.  

The basic story line is that a ghost, a vampire and a werewolf end up living in a flat together in Bristol (which happens to be the first town I remember living in: I was 6).  All they want to do is be human.  Instead they find themselves isolated and friendless due to their "condition".  They have to make pretend everything is okay when they go out in public.  They hide when their "condition" starts to act up. 

It is a perfect metaphor for chronic illness.  I found myself relating to them.  Not being able to leave the house.  Not being able to have friends.  It being a huge triumph when they finally have the neighbors over for tea.  Success being measured as having a normal day.  An ordinary day.  I am very hooked on this show.    

Saturday, November 19, 2011

Thursday, November 17, 2011


This seems to be a major crash.  I've been set back about three months.  There is no quick recovery out of this one.  No just staying in bed a few days and I'll be back to baseline.  Nope.  All I did today was make scrambled eggs for breakfast, take a quick shower and had hubby drive me to Cambridge for my IV.  By the end of that small set of excursions I had neuro symptoms: couldn't walk or balance well.  He decided that I had to get adjusted so we swung by the chiropractor on the way home and he was running late.  I was nodding off in the waiting room unable to keep my eyes open.  I got adjusted and then, since I hadn't made dinner, we stopped at the local Chili's for dinner.  I knew I was pushing it but I had to eat so there I was in my wheelchair in a noisy restaurant.  By the time I got home I had to use my walker to get around the house.  I've been beached on the couch for four hours now and can barely walk around unassisted.  You have to realize that I've been either in bed or on the couch all week.  I canceled my Wednesday appointment so I could stay home and rest.  I haven't been out of the house since Sunday when I took a ride in the car to get raw milk.  This is seriously NOT good!  And I'm pissed!

Wednesday, November 16, 2011

Getting Worse

I've been getting worse.  Today was a stuck in bed day.  If I got up I got dizzy.  I ate sugar and drank coffee just so that I could sit up and walk around.  I'm probably going to pay for this tomorrow.  I need to get back to no grains and no sugar.  It pisses me off that I was doing so well and now I'm a mess again.  I keep going over what I was doing the week leading up to my crash.  Did I do something to provoke this.  Nothing more than usual.  I'm used this just clearing up in a few days not getting progressively worse.  Crap!

Saturday, November 12, 2011


Still crashed.  Yesterday I woke up with full blown neuro symptoms.  Normally it takes a day of doing too much to bring that on but once in a while I wake up already a mess.  Of course it had to happen on a day when I had to travel to Cambridge.  Not helpful!  So today I got the "hit by a bus" symptoms.  I've been in pain all day and my stomach is making all sorts of odd noises.  I didn't do a lot physically.  Just sat out in the sun too long.  I was tired the next day but mentally alert so I read lots of science papers trying to figure out cell metabolism.  Maybe the mental exertion did it.  I can't believe that using my brain hard would do this much to my physical body.  That is just weird.  Then again this might just be one of those CFS weirdnesses.

Wednesday, November 9, 2011

New Rule

Yes, I am crashed today.  It is a minor crash.  I slept in late, couldn't get out of bed and am dragging my butt around the house.  It is the third time I've crashed after sitting out in the sun so I know it is a real cause and effect not just coincidence.  As I saw on a handwritten poster in a lab once "first time is a fluke, second time is a coincidence, third time is statistically significant".

It is sunny outside and I have to resist the urge to sit in the sun again.  Instead I decided to do a bit of research on the computer (always been one of my favorite geeky pastimes).

So I Googled "inability to tan" and found this little gem from Scientific American:
"A powerful protein known as p53 has long been considered the master regulator of the genome because of its amazing ability to repair damaged DNA. Now scientists at Harvard's Dana-Farber Cancer Institute have discovered that p53 not only mends genetic material but also kicks off the chemical cascade that results in tanning."(1)
Now this explains a few things.  If p53 isn't working properly in CFSers then we can neither tan nor repair our DNA which would result in the well documented mitochondrial damage (2) and the general inability of our bodies to repair themselves.  Upon further investigation into protein p53 apparently it also regulates the growth of tumors and cancers.  I seem to remember something I read a long time ago mentioning that CFS patients were at higher risk for cancer (which makes sense if there is a problem with p53) but now I can't find any documentation to back this up.

I can't believe that this connection hasn't been discussed in the CFS literature.  I've done a little bit of searching but nothing like a proper extensive lit search that is required.  I'll keep looking since this has piqued my curiosity.

The one and only paper I found in PubMed was in regard to the use of resveratrol in mice that had induced CFS.  An unspecified dose was fed to the CFS mice which increased activity levels by 20%, increased the physical size of the hippocampus (which apparently shrinks in CFS patients) and altered the activity of p53. (3)  I'm not a biochemist so much of this article is Greek to me but again I'm working on interpreting it.  While I'm tempted to run out and purchase some resveratrol to add to my daily supplement list, this study was done in mice, it hasn't been replicated in humans, other research into resveratrol indicates that it isn't easily assimilated into the human body.

MIT has published an excellent article that has a more balanced review of resveratrol, "The Longevity Pill". (4)   A company in Cambridge has discovered a more powerful compound but they aren't being forthcoming with details.  They do have a long list of publications but they are way above my head and they are concentrating on longevity rather than CFS.  (5)  I'm currently wading through the list of articles and trying to make sense of the information while taking a crash course in molecular biology.  I'll post again later when I have figured it out and can explain it in layman's terms.

So for now, no more extended sunbathing.  One hour of sun and then I have to move to shade.  Apparently since my skin can't tan it also can't protect itself from UV damage and I have a heightened risk for skin cancer from prolonged sun exposure.  I've picked one hour based on Stephnie Seneff's work. (6,7)  I'm also going to look into adding resveratrol to my supplements.  While I've figured out the no tanning thing, the crash reaction is still a mystery to me.


A Day of Sunshine

Here at the 45th parallel the days are getting shorter as the autumnal equinox has passed and the winter solstice approaches.  The killing frost has already come and gone and the winter coats hang in the vestibule at the ready.

Today was a rare November treat.  It was brilliantly sunny and almost 70F.  So I spent three hours in the sun reading, soaking up those rare November rays storing them up for the long winter.  I feel like sitting in the sun is part of my "treatment" for my illness.  It feels good to me.  I feel like I need it.  I certainly enjoy it and relish days like this.  I expose as much of my skin to the sun as is decently possible in my overexposed backyard.  My skin warming under the rays.  I get sleepy and float away with the clouds.  It is intoxicating.

On a more mundane note, there are some weird CFS side effects I've noticed regarding my sunbathing treatments.  First and foremost I don't burn or tan.  This is very weird since I am fair skinned and my spring sunburn is an annual ritual I've had to endure since moving to this country in 1969.  I have had to purchase hats so that my head and ears don't burn to a crisp.  However since being sick I've needed neither my hats nor my sunscreen.

The other oddity that I've finally begun to recognize is that taking one of my treatments leads to a minor crash.  I don't know if it is my system detoxing after the change in body chemistry or the flooding of my system with Vitamin D and sulfur.  I'm not sure what is causing this but for now I'm ignoring it.  I'm enjoying my sunshine treatments and will continue them as long as the weather will allow.  Maybe I should follow my sunbath with a bentonite chaser.

Tuesday, November 8, 2011

A Day of Reflection

Today was sunny and warm for November 7th here in Massachusetts.  Normally it is chilly out but today was a balmy 67F.  Hence I had the front door open where I sat on the carpet and read a trashy novel while basking in the sunshine.

The novel is set on Cape Cod where I spent my formative years.  The author's clear descriptions of Eastham and Provincetown brought all sorts of childhood memories flooding back.

While I didn't have an idyllic childhood due to poverty and an abusive alcoholic father, there was a lot to like about growing up on the Cape.  It was the happy memories that came back to me today, partly due to the book and partly due to sitting in the sun.


Riding my bicycle everywhere.  My favorite paths were unpaved sandy roads.  These were single car lanes with only a few houses on them.  They always had huge ruts in them and had to be navigated carefully to avoid skinned knees.  They inevitably had hedges right at the lane's edge and you had to be equally careful that you didn't get tangled up in thorns.

Sitting in the sun with my Mom of the steps of the breezeway.  I have never seen breezeways other than on Cape Cod.  They might exist elsewhere but I haven't seen them myself.  These are structures that connect traditional Cape Cod Saltbox house to the detached garage.  It has a poured cement base with a fully framed roof and wooden sides.  However instead of walls there are screens.  The breezeway is an odd form of screened porch.  If you have glass that can be swapped out for the screens then it can extend into a three season sitting area.

Anyway, I always remember my Mom sunbathing.  When we first moving to the US from the UK the neighbors thought she was nuts sunbathing outside in sixty degree weather.  This tradition continued after we moved down the Cape.  One of the clear memories I have down there with her is sitting on the steps of the breezeway in the sun enjoying the warm weather.  The little alcove the breezeway formed with the house sheltered us from the wind so we could sit out in the sun even on cooler days.  I remember watching the honeysuckle that I had planted against the house swaying in the gentle breeze.  I remember watching the neighbor's cat getting dive-bombed by a bluejay that was protecting its nest.  We would watch the various cars pass down the street and she would know which neighbor was coming or going.  I remember listening to the call of the chickadees.  And I remember watching the clouds and pitch pines.  I also spent a good deal of time staring at the sandy driveway and the tufts of grass that tried in vein to grow in to make a lawn.  One of our favorite activities to do when she visits me these days is to sit out in the sun together.

Taking swimming lessons first thing in the morning down at the Bass River Yacht Club.  The water was always freezing cold and I got tired of taking my time getting in.  I was the first one brave enough to just jump in off the dock into the water.  I passed my life guard test there.  I was an excellent open water swimmer.

Taking sailing lessons in a small wooden boat with gaff rig called a Beetlecat.  Tacking up and down Bass River.  Sinking the boats in the spring in order to get the wood to swell after winter storage dried them out.  This made them water tight.  Hitting a nun buoy during one of my lessons and leaving a red paint streak down the side of someone else's boat.  Getting stuck out at the mile marker buoy in the mouth of Bass River and needed to get towed back home.  My god those things are HUGE!  I remember it bouncing up and down in the waves.  I had never seen one close up before.

Knowing every town way to water up and down the river.  Jumping off every dock between Bass River Bridge and Smuggler's Beach.  Getting kicked off several of the docks (they were all private property).  Snorkeling so that I could watch the snails.  Getting stung by jellyfish.  Knowing the tides.  Knowing the lunar phase.  My favorite time to swim was on a turning high tide at 6pm.  This meant there was no current and the water had all day to warm up in the river.  It was like swimming in a bathtub.  Awesome!

The ting ting ting of rope slapping against a mast.  The roar of outboard/inboard motors.  The slap of waves against the shore.  Noisy seagulls.

But mostly I remember quiet and peace and sun.

Sunday, November 6, 2011

A Day of Rest

Nice low key day today.  I did get up early to see my Mom off at the airport after her two week visit.  It was so nice having her here with me even if it was a short visit.  She helped me a lot around the house.  We did laundry and dishes and dinner prep together.  This doesn't sound like much but it is huge after being so sick I couldn't do any of those things.  We also got out of the house several times.  We went girl shopping which was great.  She pushes me much more slowly through stores so I actually have time to look at stuff and she doesn't get mad when I keep asking for stuff off shelves I can't reach.  What a pleasure.  I miss her already.

Of course I went back to bed after eating breakfast.  I managed to sleep for several hours.  I made some soup for lunch, see Fast Foodie for the recipe.  We ate left overs for dinner.  Hubby drove me up to the farm so that I could pick up some more raw milk since I was almost out.  He went out in the garage to play with his cars.  He is building a '57 Bel Aire.  I fell asleep again and I'll probably go to bed early to boot.

I'm feeling a bit run down today.  Not surprising really.  I'm glad I could take it easy today.  More than likely I'm still recovering from Thursday's trip.  Ugh.  I really need to find a driver.

Saturday, November 5, 2011

Shake Rattle and Roll

Yesterday was my trip to Cambridge for my IV.  Normally this trip takes about 45mins by car on some heavily traveled roads.  Hence, someone has to drive me.  It is usually my son and on rare occasion my husband.  Well, the two of them now have regular day jobs so they aren't available for taxi service anymore.

No problem says I, I've been using the MBTA Ride service I'll just call them and book the trip.  Due to territory issues (they have multiple agencies handling different geographic areas) this would mean two van rides each way.  They would drive me to the Oak Grove T station and transfer me to a van to take me to Cambridge.  Now riding in these vans has rattled me before but I was hoping that all of my improvements would allow me to make this trip with little problem.  I seem to be tolerating the car trips with nothing but some minor motion sickness after the IV.  Luckily my Mom was visiting this week so I decided what the heck I'll try this and see what happens.  So Mom and I and my transport chair left for Cambridge an hour and a half before my appointment.

Now, this illness has multiple layers to it.  The glutathione seems to have detoxed my system.  The diet seems to be working its healing magic.  I have gained ground in mental capabilities.  I have better concentration, comprehension, tracking, communication and fine and gross motor skills.  I am reading again and driving a little bit.  I still find that I tire easily with physical or mental activity.  Reading can make me just as tired as walking the yard.

However, yesterday I was reminded that CFS is first and foremost a neurologic illness.  I did little activity.  I sat on the bus.  Chatted with my Mom.  The bus ride was noisy and bumpy as public transportation is wont to be.  I knew I was in trouble by the time we arrived at the clinic.  I was already fatigued badly.  I could barely get down the steps of the bus.  My Mom had my wheelchair at the ready and I collapsed into it.  I hadn't even had my IV yet.

I have the shakes and balance problems by the time we got to the IV room on the third floor of the clinic and I had to use the counters to transfer myself from my chair to a treatment chair closest to me. The IV went well.  I relaxed, closed my eyes and opened them again only to find that the IV had run out.  Mom told me that a half hour had passed in what I perceived as a literal blink of my eye.

Since the van had dropped us off early, we now had an hour wait for the van to take us home.  Mum went next door for coffee and my rare treat of a Boston Cream doughnut.  We sat in the lobby watching the cars zip down Mass Avenue while sipping coffee.  We chatted.   We waited.  People came and went and asked us if we needed to call someone to pick us up.  At the appointed time, we went outside to wait.  Other handicapped vans came and went.  Taxis showed up looking for their fairs.  A half hour passed and now I'm freezing cold as well as exhausted.  I called the Ride dispatcher and was told the driver was running late and would be there soon.  I probably got the guy in trouble but I was worried about the connecting van.

Now the fun began.  I couldn't even walk unassisted at this point never mind climb stairs.  I made the decision to stay in my wheelchair and use the van lift.  Once inside he strapped my chair to the floor, strapped me to my chair and then put a seat-belt on me.  I felt like a mummy all tied up.  But I felt secure and I managed to relax during the ride even though it was loud and bumpy.  Of course there was another passenger on the van who needed to be dropped off before we could return to Oak Grove.  We were now in the midst of evening rush hours so the traffic was horrendous.  While we were still in Medford a call came in from the dispatcher asking his ETA to Oak Grove because the van was waiting for me.  We still had to traverse Malden.

We get to Oak Grove and the next driver was really nice.  By now my neuro symptoms are settling in.  I'm sleepy, having trouble coordinating movements, and speech is getting harder.  She gets me onto the new van and there is some poor little old lady on the van.  God knows how long she has been stuck here waiting, probably at least a half hour if not more.  I felt so bad for her.  The driver strapped me down but my chair wasn't as secure this time.  I know enough about load straps to know that I was safe and the straps wouldn't loosen up.  Thank god because I was popping wheelies on the ride home, up on my back wheels, up on my right wheels and then back on the floor again.  The roads around here are atrocious.  They are full of potholes and many of them need resurfacing.  One hole we hit was so bad I actually bounced up out of my chair.  Yes, despite all the straps my butt was no longer in contact with my chair seat for a split second or two.  After I came back down I was immediately on two wheels leaning severely to the right.  Holy crap!

I did make it home in one piece.  I could no longer talk.  We used the lift to get me out of the van and the chair to get me to the steps of the house.   I could only walk very slowly hanging on to my husband for dear life dragging my feet the entire way up the steps. I went straight to bed.  I was freezing.  My insides were tumbling clockwise.  I felt like I had been rolling downhill for the last two hours.  While I was now resting at the bottom of the hill, my insides hadn't gotten the memo that I had stopped rolling.  It is such an odd sensation.  Also, my skin was tingling like a small electric charge was running over the entire surface.  I just wanted dark and quiet and time for my body to come to rest.

I'm still paying for the trip today.  I'm tiring easily.  I can't do much.  I'm having trouble comprehending what I read.  I can't multitask even simple things.  My muscles ache as if I had been hiking all day yesterday rather than sitting for five hours straight.

This illness HAS to be neurological.  I did NOTHING physical yesterday.  I sat in a chair or bus seat for five hours.  I didn't even do anything mentally taxing.  No reading.  No problem solving.  No computer time.  A little bit of talking but nothing excessive.  I spent most of the afternoon waiting.  No what did me in was the over stimulation.  Getting bounced around.  Loud bus noise.  Being jostled.  Even when I could relax my muscles on the trip home it wore me out.  How very very strange this illness is.  Glutathione won't be THE answer.  It will help with the symptoms but without a cure my body has to cure itself.  All I can do is give it the building blocks it needs to make healthy cells and that I can only do through diet.  This is going to be long slow road but I have hope.

Thursday, November 3, 2011

A Brief Moment in History

There is a Buddhist idea of being in the moment.  It isn't just being physically and mentally present.  It is the idea that the ONLY time we have is now.  This minute.  This second.  This is the only time we have to live so lets make it count.  It is wasteful to ruminate about the past because it has already happened and we can't change it.  It is wasteful to worry about the future because it hasn't happened yet and none of us can predict what will happen anyway so why worry about it.  All we truly really have is now.  Right now.  We have what today has given us: physically, mentally, emotionally, spiritually.  These are the raw tools we have to work with today so lets get at it.

Because my symptoms have never been reliable or predictable I am learning this lesson the hard way.  I was getting pretty good at going with the flow, adjusting my activities to my illness.  With the recovery in progress, the part that I need to concentrate on next is not worrying about the future.  I have no idea which way my illness is heading.  I can't predict the future and neither can the doctors.  I have no way of knowing if this is a remission, a partial recovery or a full recovery.  I know that most recoveries occur in stages that have plateaus in between levels.  Because I can't predict the future I have no way of predicting the course of my illness so instead I must pay attention to my body and use the tools I am given each day to make the most of my life in that particular moment.  On good days I can make pickles.  On bad days I can sit and watch the hawks ride the thermals high into the sky.  Cooking and nature watching both bring me joy so I am living life to the fullest no matter which activity my body can perform on any given day.  I am still learning the lessons my Buddhist teacher tried to instill in me years ago.  I am still the student practicing the NOW.

Wednesday, November 2, 2011

Life is Good?

I'm still standing!  No crash today.  I felt good enough to drive around the corner to the store which I did.  Mom pushed me in the wheelchair and I got to go clothes shopping.  YAY!!  First we toddled around Kohl's and then for larks went around the Salvation Army Thrift store.  We both picked up very good clothing for dirt cheap.  I got a lovingly worn fall coat for $12 and two nice sweaters for $5 each.  Mom got two pairs of pants for $5 each and a pile of paperbacks for 90cents each.  Paydirt!  Just because a girl is on disability doesn't mean she has to go without nice clothes.

Then I managed to drive home!  AND cook dinner!  Holy cow!  I'm tired now and will probably go to bed early but that is okay.  I did awesome today!  I felt normal today. I don't feel normal now.  I feel like my crappy CFS self but this afternoon for a short while I felt normal.  Not the sickie.  And it is scaring the crap out of me.

So here were a few thoughts driving home from my party fun time afternoon:

  • I was just getting used to being sick.
  • I was just getting the hang of the flow of the day based on severe fatigue levels.
  • Now I seem to be rapidly getting better. 
  • Right this second I feel normal.  Like a real normal human being.
  • I feel like I did before I got sick.  Clear head.  Driving around on a sunny afternoon.  Talking with my mom while driving!  Multitasking!!
  • Crap when will I be expected to work again?
  • How will I know when it is time to try?
  • Will I be forced back before I can handle it?
  • When will the insurance company start interfering with my life again?
  • Are they going to tail me on one of my shopping jaunts?
  • What will happen to my having the time to cook real food (time consuming)?
  • Will I be too exhausted from working to do anything else in my life?
  • When can I start skating again?
  • Oh crap, oh crap, oh crap!
My life, too be continued....
BTW, I purchased a book entitled "Nature Walks in Southern New Hampshire" in anticipation of my impending good health.  Something to look forward to.

Tuesday, November 1, 2011

Pacing FAIL

Yup I suck at pacing.  Total fail today.  I only meant to shower, throw out the rotting vegetables in the fridge and buy some groceries.  In one of my rambling walks through the house I discovered that the bag of cat litter had ruptured and the cat had scattered the litter all over the laundry room, possibly using it as an open air potty in the process.  This lead to transferring the kibble from a bucket to a storage jar so I could transfer the litter to the bucket and then sweep up the mess.  Of course that led to a litter box change and more cleaning.  I discovered that my sweaters in the laundry room were still damp so those had to go into the dryer for an air fluff dry.  Which lead to my needing a cup of real coffee and breaking one of my diet rules: no coffee.  But heck I needed one after that little episode.

On to the fridge clean out.  Ick.  Some of the vegetables had melted which meant I had to empty the drawers so that I could clean the goo out of them.  Which lead to my cleaning off the shelves which lead to my removing one of them to scrape the cardboard off that had welded itself to the shelf several months ago and had been impervious to prior fridge cleaning binges.  After two drawer cleanings and a shelf removal and a full garbage can I was done for the day with that little task even though one or two other shelves really needed a cleaning as well.

Instead I sat down to make the shopping list.  Which lead to calling my kid to see if he was coming over for dinner, which lead to my finding out  that I needed a ride to the Marino Center on Thursday for my IV.  Which lead to a phone call to arrange for the MBTA Ride to come get me making sure that the transportation disaster that happened last week won't be repeated this week.

Quick!  Marinade the chicken before you go out or you'll be too pooped to do it when you get back.  Find baggies, decide on dressing for marinade, slice up chicken into reasonable sized pieces, throw in bag, smoosh around, throw in fridge for later.

Now to find my wallet, the shopping list and the reusable bags so that we can head out the door to do the actual shopping.  Oh yeah, the cat needs feeding first because it is now 4pm and it is her dinner time.  Shopping went well but took longer than I expected.  I was beat when I got home and was glad that I had marinaded the chicken BEFORE I left the house.  A quick salad, marinade a large portabello cap and some asparagus and send hubby off to grill dinner.  I'm done.  I'm really done.  Am I going to pay for this tomorrow??  We'll just have to wait and see.  I SUCK at pacing but I'm thoroughly impressed with the amount of stuff I accomplished today and I didn't even get any neuro symptoms!  Of course tomorrow I might end up in bed all day which would stink because I would really like to make pickles and jellied cranberry sauce.

Monday, October 31, 2011

Run Down

Friday must have knocked more stuffing out of me than I realized.  Either that or the cheating on my diet is starting to kick in.  Or, option number three, I had one of those weird CFS adrenaline rushes last night and I'm crashed today as a result.  Or all of the above.

I'm tired today.  My muscles don't want to work right.  I'm dragging mentally as well as physically.  It is just one of those CFS things.  I slept for two hours this afternoon spending a total of three and half hours in bed.  Tonight was a busy night of TV and internet.  I'm just beginning to feel a bit better.  I think one more night of good sleep and I should be back to "normal" tomorrow.

Yesterday I was tired from Friday.  However I baked biscuits for dinner later in the afternoon.  I'M BAKING!!!!  A few months ago I would never have believed that I would be baking again.  So I'm not worried about today.  Its just a hiccup.  I'll work on my diet some more.  Stop drinking coffee and eating sugar and sneaking grains.  Things will continue to improve.  I see more cooking and even some sewing in my near future and I'm excited.

Sunday, October 30, 2011

The Lipkin Study

The most current news I could find on the Lipkin study

Please note that it is dated prior to the implosion of WPI so I'm not sure if the study will continue as described.

Saturday, October 29, 2011

The Good Doctor

I went to see one of the world's experts on CFS today.  He said I have CFS, they don't know what causes it and there is no cure.

Now normally I would have a very sarcastic response to this.  However, my main purpose in going to see him was to confirm my diagnosis.  That way the insurance companies can go suck it.  I now have three doctors on record saying I have CFS.  One of them being an expert from Harvard Medical School.  So yay me!!

The second reason I went there was to see if he had any other tricks up his sleeve for treatments that my other docs haven't tried yet.  He took blood samples and will make recommendations based on the results.  I have a follow up appointment with him in February and should expect a letter with the test results in roughly two weeks.

However,  by the end of the visit I had the distinct impression that he is not a patient centered practice.  The biggest clue was that he had no idea what veinous insufficiency is and how it might relate to my dizzy spells and almost passing out during the tilt table test.  I've read in the literature that this is common and somehow related to CFS but he didn't know anything about it.  Don't get me wrong.  He is really nice.  He listened to everything I had to say.  He asked lots of pertinent questions but his main purpose in life is research work into CFS markers.  He sees patients so that he can find candidates to donate blood for his research work.

This only mildly bothers me.  I went there expecting this so it wasn't too much of a surprise but I do know of one patient that was infuriated by this.  She had gone there expecting help with her symptoms and didn't come away with anything.  Myself?  I signed a waver and left him with several extra vials of blood and a spit sample for his research work.  Anything I can do to advance the cure.   I'll never go into medicine at this point so giving my blood, spit and filling out surveys are the best I can do.  But, it would have been nice to have a few more tools offered to me to help treat the symptoms of the CFS.

The other cool thing that came out of our visit is that I will probably be asked to participate in the Lipkin study.  Woohoo!!  That is so neat.

We did discuss glutathione and my diet.  He was happy it was helping and we agreed that we couldn't untangle how each piece was helping me and if my improvement was due to one or the other or the combination of the two.  He took notes on my diet and didn't bat an eyelash when I mentioned raw dairy.  Curiouser and curiouser.

One last note: I was really impressed with Brigham and Women's facility but damn they need better signage.  We got seriously lost trying to get to the clinic.

Friday, October 28, 2011

More on Gut Bacteria

Discovery News

"The Gist:
  • Research shows that gut bacteria can affect obesity and even behavior.
  • New findings show that gut bacteria play a role in the development of multiple sclerosis in mice.
  • Studies could lead to a better understanding of disease and offer a solution of stool transplants."

 Science News

"Previous reports had indicated that gut bacteria might be involved in autoimmune disorders such as MS, juvenile diabetes and arthritis, says Simon Fillatreau, an immunologist at the German Rheumatism Research Center in Berlin."

As I stated before, I think I'm onto something here.  I think the combination of glutathione for detox and food to rebuild my guts is the right way to go.  I'm doing fantastic.  It takes 3-6 months to get the healing process cranking.  For complete healing it can be up to two years according to the GAPS author.  When my body is doing better and I can detox without the aid of the IVs I will probably do the GAPS intro diet.  I would love my guts to work normally.  Once my guts are working I will probably continue with Weston Price as my daily diet.  Returning to the SAD is out of the question but it would be nice to be able to eat the odd sandwich without having horrible repercussions.

BTW, grains and sugars are creeping back into my diet.  I have to stop cheating if I want to heal properly.

Glutathione IV: Week Six; Part One

1000mg today.  No nausea.  No car sickness on the way home.  I'm wiped out but didn't have to sleep like last week.  I even had a glass of milk with no repercussions.

Tomorrow I see Dr. Komaroff.  I was putting my medical notes together and was reading the notes I made two weeks ago for my bimonthly primary visit.  I can't believe the difference in just two weeks.  I'm cooking everyday now.  Not just breakfast and dinner but extras like muffins and bread and yogurt.  I'm standing for longer periods.  I'm walking around stores again.  I walked into the library today which is the first time in months.  I even made it into the stacks.  I can't remember the last time I was wandering the rows of books instead of hanging out in the new book alcove on the first floor.  I drove yesterday.  Again another first in months.  I stood for part of my shower today.  This morning before my appointment I made muffins and eggs for breakfast, threw together dinner in the crockpot and then showered and I was still okay for the trip to the Marino Center.  Here I am still awake.  No nap.  No collapse.  No neuro symptoms.  WOW!!!  I'm tired but WOW!

I'm curious what the famous doc is going to say.  Is he is going to scold me for drinking raw milk? Is he going to be offended that I'm having glutathione IVs?  Is he going to scoff at my supplement regimen?  The assistant couldn't believe some of the stuff I'm taking.  Of course I wasn't taking any of the traditional western medicine stuff she listed off.  This is going to be interesting....  I'll let you know what happens.

Wednesday, October 26, 2011

Mystery Solved

Talked to my doc today.  Thank goodness he didn't train in the US.  We discussed the last IV I had and all the weird stomach symptoms I've been having plus all the diet changes I've made.  And guess what!?!  I've been eating too healthy!  Yup too much cabbage and kale in my diet.  Turns out they both cause the generation stomach acid.  My doc used to do this on purpose where he trained in medicine so that they could measure a person's ability to produce stomach acid.  They would make the patient fast and then feed them cabbage.  Hence I gave myself a sour stomach from eating kale daily and of course the huge load of cabbage I ate last Saturday.  Not to mention trying kraut juice.

So, the current game plan is to get my IV of 1000mg tomorrow as scheduled.  No more kale, cabbage or kraut juice until my stomach settles back to normal.  Then I start introducing kale back in slowly.  When I can tolerate it I can start adding cabbage juice back in but only a tablespoon at a time.  Then I can add actual cabbage.

I knew that beets and kraut could give me trouble but I never considered cabbage or kale to be a problem.  I grew up eating cabbage, cauliflower, broccoli and brussel sprouts.  I love them.  I stopped eating them since hubby hates them.  I was very excited to reintroduce cabbage into my diet and was excited to try new leafy greens.  Turns out that I love kale and swiss chard.  However, I never knew that I had to slowly introduce them into my diet.  Of course my stomach being testy has been a problem since I first contracted CFS.  I couldn't eat during the entire first month of the illness and my acupuncturist put me on double boiled rice so that I could get something down.  I dropped ten pounds during that time period.  Not the recommended way to loose weight.

Anyway, mystery solved.  It wasn't the glutahione.  I just have to go more slowly with the diet changes.

Tuesday, October 25, 2011

Tummy Troubles

I have been having moderate tummy troubles this week.  There are several suspects to blame so I really don't know which one caused the problems.

Possible causes:

  • Glutathione?
  • The crappy sauerkraut I made last week?  Yes, I tasted it before I chucked it out.
  • The new raw milk I bought last week from a different farm?  They had been shut down about a month ago and reopened after they passed further testing by the state.
  • The new yogurt I just made?  Highly unlikely since I was having this problem last week before I made it and tasted it.
  • Stomach is rebelling against the new diet?
  • Going through herx from die off from diet?
  • Not handling the high fat diet well due to lack of gall bladder?
  • Drinking Kombucha that got left out overnight?  That shouldn't be a problem since this stuff is brewed at room temp.
  • Got a stomach bug?
  • Simply doing too much?  Mom is here so I'm more active than normal.
Stuff I'm doing to help it:
  • Drinking bentonite clay.  This helps but only temporarily.
  • Taking activated charcoal caps.  Again helps but only temporarily.
  • Avoiding cultured foods. 
  • Made chicken soup today.  Only food I could even consider eating.
  • Drinking peppermint tea.  Drinking water and lemon water makes it worse.
The only symptom is discomfort.  Occasionally it turns into full blown heartburn and I have to resort to using Pepto Bismol but generally I simply have no appetite and feel yukky.  It isn't nausea.  I do have some burping, farting and tummy rumbling but nothing else.  It is truly odd.

Apache Blessing

 ”May the sun bring you energy by day,
  May the moon softly restore you by night,
  May the rain wash away your worries,
  May the breeze blow new strength into your being.
  May you walk gently through the world
    and know its beauty all the days of your life.”
                                     Apache Blessing

Friday, October 21, 2011

Glutathione IV: Week Five, Part One

Had my fifth IV today.  800mg.  It seems as long as I tolerate this well it will be increased by 200mg each week until I hit 1200mg.

I must say this week has gone very well excepting the minor crash after doing too much this weekend.  I even had energy when I got up this morning and my head was clear.  I managed to shower prior to going to the clinic which is unusual for me.

On the way home I took my son for some lunch since he hadn't eaten that day.  This involved walking across a small parking lot which is a huge deal for me.  When we were done with food I walked across the lot again to see my chiropractor.  I was starting to get tired and dizzy by this point.

I got home and immediately laid down.  I listed to the news for about an hour until hubby came home.  We talked a little bit and then I promptly fell asleep for two hours.  I just couldn't stay awake any longer.

The nice thing is when I woke up I felt better.  My head is clearer.  I am walking around the house unassisted and sitting up on the couch.  Woohoo!!  I wonder if I'm going to be done with my herx by tomorrow.  That would be phenomenal!!  I would love to do a bit of baking tomorrow.

If this stuff works out the way I think it is going to it looks like I'm going to be more mobile than I have been in months.  I'll be able to function in short bursts and then have to lie down to recuperate.  This is so huge for me.  Once the dosing levels off and I'll be able to adjust my pacing better.

I'm thinking that the IVs are doing the detoxing and I'll keep doing dietary tweaks to allow my body to heal itself.  I might just beat this thing.  Or at least see some considerable improvement.  I'm so happy!!

Now if I could just fix my marriage.  Blech.  One thing at a time.

On a happier note, I met with my primary doc this week.  I told him about the improvements.  Of course he wanted to know what I was doing differently.  I told him about the IVs and the diet changes.  He didn't freak out!!  I even told him about drinking raw milk.  I'm so proud of him!  He is actually okay with my weird diet!  How cool is that!?!

Thursday, October 20, 2011

Bacterium, Viruses and Your Guts

I've been following with interest the studies coming out regarding gut health and illness.  This seems to back up my theory that I can at least partially heal through diet.  Here are a couple of articles that I found interesting today:

BBC writer Ed Yong
How do our bacteria help us?

Science Daily

Research Could Lead to New Treatments for Inflammatory Bowel Disease (IBD) and Viral Infections

Curiouser and curiouser.

Tuesday, October 18, 2011

Food Report

Warning: this post is going to be a bit scatter brained since I'm having a bad day.  I did too much as usual.

As you might have figured out my juicer came the other week.  So far I've been drinking a simple recipe of 3 carrots, 2 celery stalks and 1 small yellow beet.  I love carrot juice so I haven't veered from this yet.  I need to mix things up a bit and have found a couple of other recipes from my juicing book that I would like to try.

Anyway, I've been eating grass fed/free range/organic/pastured meats for about two months.  I've been grain free and sugar free for about six weeks (and yes I cheat a lot on these two).  I've been drinking raw milk for about a month.  While I got my juicer over a week ago I'm still not using it on a daily basis but this is my goal for the upcoming weeks.  Here is what I tend to eat daily.  The schedule is off because I get up at 11am and go to bed at 3am.

Breakfast @ noon: eggs with either spinach or herbs and raw milk cheese, black tea with milk
Snack: yogurt and fruit or cheese and vegetable or fresh juice
Dinner: grilled meat and two vegetables, kombucha or water with lemon
Dessert: raw milk or piece of fruit
Late meal @ 10pm: salad with protein or soup
Late snack (not always eaten): fruit or nuts or cheese or a combination if really hungry or instead of late meal if I'm not very hungry

I try to drink at least two glasses of filtered water a day.  If I'm having stomach issues I add lemon.  For some reason it is much easier to digest than plain water.  I have three cups of black tea with milk in the morning and an assortment of juices and Kombucha during the day.  If I've talked someone into making me some carbonated water I have home made ginger ale which has way less sugar than commercial stuff and it is raw cane sugar not the processed white stuff.

So far I've stopped taking Prilosec all together.  I don't need it.  I'm not even bringing up stomach acid at night any more.  Woohoo!!  The few odd times I do have stomach problems I can trace it back to a cheat on my diet.  I might have eaten out or had some wheat product or cupcakes.  My bad.  However it tends not to be too bad and easily controlled with Tums or activated charcoal.  Yay!

My head is much clearer most days.  I've started reading again.  I've managed to drive short distances a couple of times.  I can read complicated material some days.  I'm not as dizzy.  I can stand for longer periods of time.  I'm in less pain and have cut back on the steroids as a result.

My energy is slowly increasing and my recovery time slowly decreasing.  On my good days I have fallen into the routine of doing something for 1-2 hours and then laying down for half an hour then getting up and doing something for another 1-2 hours and then laying down again.  This seems to work for several days in a row before transmographying into a couch sloth again.  It is hard to tell how long I could keep this up since the glutathione IVs interrupt this rhythm and puts me in bed for a day and a half each week.

It is difficult to tell how much of my improvement is from diet and how much is due to the glutathione.  Since some of the improvements were occurring prior to the IVs and I feel crappy if I cheat on the diet, I do know the diet changes are doing some good.

I've also been trying to be better about taking my supplements.  I had gotten into the habit of skipping a lot of them or not taking enough doses.  I'm very good about taking my morning pills but for some reason I never get around to taking the stuff at dinner and I never touch the oils/essences I'm supposed to take.  Hopefully the better diet will start making up for the lack of supplements.

Food goals:
Eat 9 cups of vegetables and fruit a day: 3 have to be leafy greens, 3 colored veg, and 3 whatever
Juice daily
Shift over from commercial yogurt to home made
Try sauerkraut
Make more Paleo bread (yummy and satisfies my carb cravings)
Add kelp and brewer's yeast