Saturday, September 29, 2012

The Big Carb Experiment

I've been wanting to write this for a while but my keyboard keeps crapping out on me.  So here we go....

Since eating that amazingly yummy pizza I've been experimenting with various carbs.  So far donuts, pizza, pasta, white bread, wheat bread, flour tortillas, English muffins and rice have all been tried.  Rice of any sort seems to be fine.  Corn can be dicey.  I haven't eaten it enough to figure out if I'm fine with organic and it is just the GMO corn that is giving me problems.   Wouldn't surprise me since I've had serious problems with breakfast cereals with GMOs in them before (yes I ended up at the hospital with an ultrasonic transducer up my hoohoo after eating breakfast cereal: the indignity of it all!)  Donuts are a problem as is pasta and even the pizza.  A few pieces of toast or an English muffin seem to be fine.  Regular bread is pumped so full of air I'm thinking it is just a quantity issue.  I'm fine with small amounts but larger doses cause problems.

Skip this bit if you don't want to read the gory details...
Basically it involves lots of burping for about 24 hours, bringing up stomach acid when I lie down (truly painful and results in a swollen throat for several days afterwards not to mention really nasty tasting), and then intestinal cramps until I can eliminate the offending mass.

I've used both activated charcoal and bentonite clay to help with eliminating the toxins out of my system faster after eating carbs.  But it really comes down to behaving myself.  I can have toast once in a while but I have to stay away from pasta dinners even if they are the most delicious thing on the planet (I had pasta and shrimp in a cream sauce that was gastronomic heaven!).

So back to my Primal diet with some rice thrown in on the side.

Talk to you again when my keyboard works again.

Monday, September 24, 2012

Sick Humor

Second New Post

I'm recovering.  It has been slower than I thought but I pushed way too far last Sunday.  The car ride was too much.  A few things would have helped: traveling in my car instead of the '57 Chevy, staying overnight to break the trip up and not having appointments to go to as soon as I got back.  Those three things conspired against me and brought me down way further than I care to go.  The short stay up there, only a few hours, was not worth the crash that followed.  Today is the first day I've made it through the entire day without needing to lie down and rest/sleep/pass out and the first day that I didn't need my walker at some point.  So things are improving.  I made breakfast and dinner today.  A major accomplishment even if they were simple meals.  I've managed to lie out in the sun several days this week.  Recovery takes time and patience.  I'm still not back to pretrip levels but I managed to function all day today.  Woohoo!!

I had several really good moments today.  Hubs took me for a long walk around the neighborhood.  He has never EVER done this before.  He always told me that pushing my wheelchair makes his back hurt.  I figured he would only push me around the block but he went down side roads and went back and forth up and down the street several times.  With the warm sun it was delightful seeing the flowers in the neighbor's yards.  My son even joined us for part of the trip and we talked politics for a while.  Much fun.

I also got to watch the bees today.  They have switched from my catmint to the Autum Joy sedum as the plant du jour.  The plants attract very different pollinators and I want to learn the different types of bees.  If I never had CFS, I would have never learned this never mind seeing this for myself.  Even the bluebottle flies like wandering around the plant heads.  It is pretty amazing watching all the bugs in my garden.  The variety of life and the fact that I am moving slow enough now to see it.  It is fascinating and makes me want to learn more.

I am hoping to recover enough that hubs and I can go away for a short vacation of a few days.  He has agreed that we shouldn't be stingy for the lodging so I'm voting for someplace nice since I'll be stuck in bed/on the couch/on the deck/on the beach for at least the first day that we are there.  I also need a handicapped room so that we can use the wheelchair to get me around the facility.  I still can't do stairs.   I'm looking forward to getting away for a few days.   I now have to decide if I want to go back to Maine or to Cape Cod instead.

Wednesday, September 19, 2012

New Post

I'm still messed up so bear with me....

Went for a drive to York ME on Sunday.  Hubs wanted to go in his 57 Chevy, a car he just finished restoring.  It is a gorgeous car.  He did a fantastic job on it.  He built it for us to go driving in.  He loves driving it.  No that doesn't do it justice...  He LOVES driving it!!!!!

Now you have me with pretty bad neuro symptoms for CFS.  I have daily problems with concentration, memory, attention span... oohh shiny!   You get the idea.  On bad days I can't walk or talk it gets that bad.  Riding in cars makes me worse.  Riding in noisy bumpy cars makes me exponentially worse.  

Hubs wanted to spend the day with me driving in his fancy restored car so off we went on an 160mile round trip drive in a loud bumpy car.  It was a perfect fall day in New England.  Sunny.  Dry.  In the seventies.  By the time we got to York I was a little messed up but we had my wheelchair so he pushed me around.  We had lunch.  We ate ice cream.  We watched the surfers. We watched a beach wedding.  As soon as we got back on the highway for the trip home I was out.  With CFS I'm never quite sure if I'm actually sleeping or gone comatose.  I would love to have someone do a brain-scan when I shut down like that.  Anyway, I slept/passed out for most of the trip home.  I woke up suddenly.  We were near our house but still on the highway.  I had a panic attack.  I never have panic attacks.  I wanted to jump out of the car.  Right then.  Home couldn't come fast enough.  I talked myself down from it since I knew I wasn't in any real danger.  I was just freaked out.  By what I have NO idea.

We pulled in the driveway and I could barely walk.  I couldn't talk at all.  Hubs got me upright and into the house.  He disappeared so using furniture and walls I made my way into the bedroom where I literally collapsed in bed.  He covered me in a blanket and I woke up 2 hours later in the same position.  I spent the rest of the evening using my walker to get around the house, using slurred speech and truncated sentences to communicate.

Yesterday I spent on the couch.  My kid had to cook for me.  I had no strength in my limbs.  All I could do was watch TV shows.  It was all I could manage.

Today I had a doctor's appointment.  I put my papers together as soon as I got up.  I always take a list of meds, a list of supplements and a list of symptoms and activities with me to give to him.  This time I also took info regarding tricyclic antidepressants so that I can start anti anxiety meds and the oxygen therapy info from Dr Cheney.  I made myself eggs for breakfast and took a shower.  I knew I was in trouble even before I walked out the house.  My brain was slowing down.  My pace was slowing.  My brain processing speed was slowing.  By the time I got to the docs I was back in nonverbal mode.  Luckily hubs was there to answer questions for me until I recovered enough to hold a somewhat decent conversation.  I still sounded like I was drunk/high or really stupid.

Strangely enough the appointment went really well.  Hubs was a great help.  And it was really good that my primary saw me that screwed up.   I have disability forms to fill out again soon so having him visually confirm that I'm that messed up that I can't possibly work is a good thing.  I also found out that he had no idea that I used the walker in my house to get around on my bad days.  Hubs injected that car rides to the market often caused me to have to use the walker when I get in later.  Doc was surprised that I went to the market and I had to explain that someone drives me and then pushes me around in the wheelchair.

Anyway, I'm seeing my shrink tomorrow to talk about the tricyclics.  I'll probably start something.  My skin rash has spread all over the place.  A different form of it is now on my open skin on the top of my leg so it is no longer confined to the cracks and folds of my body.  Ugh.  I hate this.  He doesn't want to put me on the pills yet either since they do nasty things to the liver.  So lots of cream must me applied.

I have to stop writing now.  My brain is shutting down again.  See ya later!

Tuesday, September 11, 2012


I've been really bad about writing lately and I'm going to blame it on my keyboard.  Gremlins have gotten into it and it now only works intermittently.  Welcome to the wacky world of wireless comm. and yes I've replaced the batteries.  Several times in fact.  And moved the receiver.  Like I said this is an intermittent problem which means everything works.  Sort of.

Anyway, I'm going to write a post while I can.

Now, everything I've been reading for the last year had me convinced that Paleo was the way to go for some improvement in my symptoms.  I went hardcore Paleo (except my raw dairy) last September for one month.  Yup.  No grains or tubers for an entire month.  Drove my hubs nutty.  I reintroduced rice and then sprouted spelt in small amounts in October followed by white potatoes a short time later.  In addition to Paleo, I added fermented foods, bone broth, gelatin, grass fed cows, grass fed animal fats and lots of sea salt back into my diet in order to aid in gut healing and to add back in nutrients that I've probably been missing for years on my low fat, low salt, whole grain "healthy" diet I've been on for the last 20+ years.  Things went well.  By December I was walking around really well on my own for longer distances.  I was still hampered by significant brain fog but I was able to cook, do light house cleaning, tidy up a bit and occasionally read for short periods.  Woohoo!!

In January I relapsed.  I got steadily worse until I was stuck in bed for most of the day doing only the simplest of cooking.  I canceled all of my appointments for about two months.  It was just too much for me to go out of the house and it would make me worse so I saw no real benefit from it.

This year, I've been doing a so so job with my diet.  It is better than it was last summer but I was definitely more strict last fall.  I've slacked off with the vegetable and fruit consumption.  And I haven't had any ferments of any kind in several months.  I've also slacked off on juicing and making smoothies with whey protein.  Part of it is that I'm just not that hungry this year.  Now that I'm off the steroids my appetite has plummeted.  I have to remind myself to eat my third meal even though it usually consists of a piece of fruit, a bit of cheese and a few nuts.  I'm no longer snacking at all.

Then a few weeks ago I got sick.  It was a weird one and I'm not entirely sure if it was a virus or just a new incarnation of the CFS.  I had a severe headache for 7 days that escalated into an ice pick migraine on five of those days.  And plumbing issues that I'm not going into detail.  During that time I stopped all dairy and didn't have much of an appetite.  I was eating eggs for breakfast and whatever meat and side I made for dinner.  So for over a week I was essentially eating nothing but protein.  After the headaches and tummy issues resolved I still felt terrible.  Not unusual for me.  CFS usually means a crash during and after a viral illness.  But this just wasn't resolving.  A week then two weeks went by and I still felt like crap.  And when I feel like crap I don't cook full meals.  I was still eating eggs, meat and a side.  Maybe a piece of fruit now and again.

Now eating Paleo isn't about eating straight meat.  After lots of reading last year, I decided on a diet of 50% fat, 25% carbs and 25% protein.  I spent several weeks plugging all my food into an online tracker and found out I was hitting my target with my regular Primal diet.  I was consuming between 1600-2000 calories a day with the correct ratios of carbs to fats to proteins.  I discovered that the calorie heavy days occurred when I included rice which also skewed my ratios.  I found that I got all the carbs I needed from my fruits and vegetables and nuts that I was consuming and I really didn't need the rice or potatoes in my diet for the numbers to work out correctly.

Ah but reality doesn't always agree with the numbers does it....

During my illness I ended up with a protein heavy diet with a bit of fat and almost no carbs in it.  Then one day hubs wanted a pizza.  A real honest to god pizza.  And I went "f*** it", me too.  I haven't eaten a real one in years due to a wheat intolerance.  I love pizza.  I always have.  So I threw caution to the wind and we devoured a large mushroom and onion cheese pizza and a salad between us.  And it was good!

A few hours later when I expected the belly ache and heartburn to kick in quite the opposite happened.  I felt better.  I felt much better.  I felt better than I had since I had been sick.  I must have needed the carbs.  Even though they weren't organic.  Even though it was full of wheat (I even ate the crusts).  Even though it was the polar opposite of Paleo.  I felt better.  I needed the carbs.  Apparently I needed a lot of carbs.

So now I'm in a quandary.  Last year getting rid of grains made me feel better and now eating them made me feel better.  What is right?

I have to trust my body.  Things are changing.  I know I am no longer intolerant of wheat.  I ate the entire half of a pizza with only minor intestinal discomfort the next day.  Normally this would have caused heartburn, intestinal cramps, severe brain fog, severe fatigue and pretty bad IBS.  So my guts have healed.  Apparently a lot.  I love pizza, sandwiches and donuts but I know they are full of crappy chemicals and GMOs.  So I guess I'm compromising.  I'll do Primal most of the time but I can have the occasional sandwich or pizza or donut.  These will not be a regular part of my diet.

Also, I have to do a better job of balancing my diet when I feel bad.  I can't just eat protein and nothing else.  I need fruits.  I need vegetables.  And I need the occasional carb.  I also need to add ferments, cultures and raw dairy back in.  So I started my evening large glass of raw milk again.  I've bought some sprouted spelt bread to eat with one egg for breakfast.  And I've added a large tomato slice to my egg breakfast.  I'm going to go back to eating my fruit, cheese and nut plate for my third meal.  And I'm eating fruit for dessert after a smaller dinner.

I'm still not eating as much as before I was sick but at least it is back in balance again.  And what a shock about the pizza!!  Who knew pizza would make me feel better!!!  Maybe it isn't the total evil that the Paleo community makes it out to be.  Or maybe our bodies are just that wonderful that we can eat a wider range of foods than we think we can once we manage to heal ourselves.  What ever the reason it is a cause to celebrate!!   I can eat pizza again!  I've managed to heal my guts somewhat. I'm bummed about the CFS still being pretty crappy but I'm healing other parts of me and I am going to continue that journey.  As long as I eat more ferments, bone broths and vegetables, I will be able to enjoy a pizza once in a while and that is a wonderful thing!

Thursday, September 6, 2012

The Egg or The Chicken

Had a long talk with my shrink today.  At our last meeting he suggested that I go on meds to "even out your mood swings."

I told him about my abysmal record with anti-depressants.  The only one I've done well on is Prozac and that was over 20 years ago.  I've tried many of the new ones.  I had side effects to most other SSRI class drugs and that was BEFORE CFS.  I had a severe reaction to SNRI class drugs that were proscribed in low dose for pain use after I contracted CFS so those are totally out of the question.

Of course I was told by Dr. Komaroff that anything that acts on the central nervous system wreaks havoc with CFS patients so I'm loath to even try the Prozac.  I would have to start out on the lowest dose they make and maybe even mix it into juice and only drink half.  I would also have to be monitored closely for side effects of any sort.

Aside from the drugs themselves, we also talked about why I would be taking them.  I told him that it made me feel like my sadness, my grief wasn't legitimate.  That it wasn't right to feel this way.  That it needed to be wiped out by the drugs.  He gave me an excellent list of things to consider:

Is the sadness overwhelming?
Does it interfere with everyday life?
Is it persistent?
Can I tolerate the sadness?

My sadness comes and goes.  It isn't persistent.  I cry more often in his office than outside so his perception is a bit skewed.  I generally have triggers for the sadness such as watching the Olympics (people doing things I used to do such as swimming or running)  or digging my ice skates out of the closet.  I cry.  I get most of it out of my system.  I go on with life.  I get annoyed that I'm still sick.  I get angry at not being able to do stuff.  I grieve for the life I've lost.  But most of my days I'm okay.  Most days I can function within the boundaries of CFS.

I also realized that I can't really untangle the CFS from the sadness. I don't know if I wake up feeling crappy because of the CFS or because I'm sad at being sick.  The proverbial chicken and egg problem.

I know what would absolutely improve my mood: BEING ABLE TO DO STUFF!!  If i could get a drug that cured CFS I wouldn't have to take any prozac!