Wednesday, July 31, 2013

Day Three and Counting

Well into day three of my post swim crash.  Still doing pretty damn bad but I had to travel Monday to get my IV and see my CFS doc and then travel today to see my regular doc so no lumping around the house for me.  This is also prolonging this crash.  Ugh!

However, I have some good news and a new action plan from my docs.

My cholesterol plummeted since it was last done in January.  The only thing that has changed is that I'm cooking more which means I've been eating higher quality ingredients and roughly 90% Paleo.  During the winter I was too sick to cook a lot of the time so we were eating out more.  I was still eating mostly Paleo but the ingredients were crap.  Now it is pastured meats, pastured eggs, raw milk/cheese, grass fed cream, saturated fats from pastured animals, organic fruits/veg/nuts.  Very few carbs and those are from organic Non-GMO Project items: rice, beans, potatoes or a slice of toast.  My doc was shocked.  I just told him that when I feel better I can cook better.   Apparently that is enough to lower my cholesterol numbers.

The stool test came back with mostly good news.  Only two not so bad things found.  First the good news; no SIBO, no C. diff. no H. pylorii.  They did find I was low on Bifida bacteria (one of the good ones) and genetic remnants of a protozoa or parasite probably picked up from eating something with poo on it.  Considering I eat veg right off the farm this isn't a huge surprise to me.  Also they don't treat it unless I have obvious symptoms of a parasitic infection like bloating, pain and other nasties.  Since I don't have that, we are ignoring this for now.

My urine test showed some yeast/fungal overgrowth but not by a huge amount.  I added more fermented foods to my diet but haven't been retested.  This doesn't really surprise me since I've had this fungal tinea skin infection going for almost the entire four years I've had CFS.  I did discover that a homemade concoction of 1 part coconut oil to 1 part beef tallow to a drop or two of tea tree oil works way better to control the rash than the $300 tube of cream I got from the dermatologist.  WOOT!!

Plan Part One:
Since I do so well on antibiotics (for no reason the docs can figure out), I'm starting Xifaxin today.  There is great debate in the CFS community regarding this drug and if you do a search on the Phoenix Rising site you'll find all sorts of lengthy discussions about it.  To my non medical mind (i.e. I could be COMPLETELY wrong on this), I think I'm rearranging my gut bacterial population and this is affecting my CFS.  I blast my system with antibiotics.  Then blast it with as many probiotics as I can handle.  Effectively changing my gut microbiome.  A few weeks later things settle out to a new higher baseline of activity/ability for me.  This is all a HUGE guess on my part though.  No matter what the why is it works so I'm sticking with it.

Plan Part Two:
When the antibiotics are done, start eating all of my fermented and cultured foods: kefir, yogurt, pickles, sauerkraut, beets, kvass, and anything else I manage to make in the meantime.  Also take Bifida bacteria in pill form along with S. Boullardii and fermented cod liver oil.

Plan Part Three:
Start LDN (low dose naltrexone).   I have a compounding pharmacy making up 1.5mg pills for me so I can start it in two weeks.

I'm beginning to feel like a walking bioreactor or at least a couch sloth being used for experimentation.
Time will tell what works and what doesn't.  Wish I had a more clear idea if this is all worth it or if I am just pissing in the wind or worse doing actual damage to my body.  Ugh.

Saturday, July 27, 2013

Stand, Walk, Swim

There have been four deaths within the last two weeks: my skating coach's dad, my friend from college and two people from the CFS/ME/Lyme community committed suicide.  These have all bothered me greatly.

However, Ada's passing from cancer has really gotten me thinking about my own life.  She had been plagued by illness for quite a while.  She contracted the cancer years ago, beat it into remission and then passed after its resurgence.  I became friends with her during her remission.  Her zest for life was absolutely contagious.  She was so happy.  She would paint her toenails bright lively colors and then post pictures of them at the beach or in a lounge chair, always with pretty scenery around them.  She often invited me down to Puerto Rico to visit her and that was the first on my list of places to visit when I get better.

Her attitude prompted me to buy a bottle of nail polish in bright blue with a pearl opalescent swirl in it.  It is so her.  To me it represents living life to the fullest.  Enjoying it.  Not giving a damn what others think.  Live large!  Enjoy your time on this planet while you can and in whatever way you can.

Then I started thinking about my own illness.  I'm not dying (at least that I can tell) from my illness, although others have.  I'm showing signs of slow improvement.  I can never tell by my day to day activities.  I have to compare to a year ago, the improvement is that slow.  So here is my list of accomplishments during this past month:

  • Standing in the shower to wash the shampoo/conditioner out of my hair.  I still sit through most of my shower but now I get to stand for short periods.  Two years ago I had to be assisted out of the shower after sitting the entire time.  Now I can get myself in and out of the shower on my own and even stand up several times during the shower itself.
  • Going out of the house immediately after showering.  Last year I had to lie down for half an hour after I showered before commencing with any type of activity.  This year I rarely have to do this.
  • I walking around the house more.  Doing more small chores.  Cooking more often.  Cooking more complicated dishes.  Even fermenting vegetables.
  • I walked down the street.  I've only done this once but this was HUGE.  I made it four houses down the street to the next corner.  I still felt good when I got there but when I turned around and saw how far I had gone I got scared I wouldn't make it back.  But I did.  And I was fine.  A little out of breath but fine.  I didn't get PEM the next day either.  WOOT!!!  I haven't been able to walk that far in three years.  Holy crap!  I might be getting better after all.
  • I'm walking unassisted to and from the car more often.  And for longer distances.  
  • I've been swimming.  Yup.  Real honest to goodness swimming.  I just did three laps in the neighbor's small pool using actual breast stoke.  I did it a half lap at a time resting in between.  This is the second time in his pool but the first time I was brave enough to attempt actual swimming.  Again this is the first time in four years.  We haven't even bothered to open our own pool for the last two years because I haven't been well enough to take care of it and three years ago I couldn't regulate my body temp well enough to be able to stay in the water more than a few minutes.  
I'm exhausted.  But really really happy.  I got to swim today.  I got to walk really really far last week.  I seem to be getting better.  At least for now.  Relapses are part and parcel of this illness but I'm going to enjoy this while it lasts.  For now I need to rest some more.  If I get PEM tomorrow it was so totally worth it!  Ada, you are such an inspiration.

Monday, July 22, 2013

Extra Floaty

I just spent the last hour writing for this post.  I had to save it as a draft because I realized that it was a huge justification for how I got this way.  This post is supposed to be how I feel about being this way.  So without further ado...

I am fat.  I am very very fat.  I just weighed myself (I need to throw the scale out) and I'm 270lbs on a 5'2" frame.  My BMI went over the 40 mark a few years ago.  I have gain 50lbs since getting sick three years ago and I've lost a good deal of muscle mass so I've gain more than 50lbs in fat alone.  I'm huge.  I'm now a 3x-4x depending upon brand.

To say that I HATE it is an understatement.  I LOATH it.  I wish it would stop.  I already know a lot about body weight and fat loss.  I know a lot about how my own body functions and how it is broken.  What it comes down to is that my body likes keeping weight on.  I can NOT loose weight by diet alone no matter what foods I eat.  I have only had successful weight loss when I have exercised for three or more hours per DAY.  Yup.  Each and every single day.  Three hours of weight lifting, aerobic activity and stretching.  Don't get me wrong I LOVE exercising but if you work full time and have a family to take care of three hours per day is NOT doable.  I trained harder than many athletes but had the body of a Sumo wrestler.  Not fair!  Best I can hope for is maintenance which I managed to achieve for well over a decade.

Then I got sick.  Housebound and often bedridden I'm having a good day if I mange to circumnavigate my backyard never mind do a solid ten minutes of exercise.  I changed my diet, again; for energy maximization, again.  I've tracked calories and fat/carb/protein grams on myftinesspal.  I should be loosing weight.  I'm not.  I'm steadily gaining.  Each season I have to buy new clothes because I no longer fit into the ones from last year.  I HATE this.

I feel like that fat disabled lady who's edges squish out the sides of her wheelchair.  I've always looked at these people with disgust and hatred.  Now I am one of them.  I am the fat old lady that needs to be pushed around oozing out of my clothes and my chair.  My ass just fits into the chair.  If I have stuff in my pockets I get stuck in it when I try to stand up.  If I get any bigger I will have to buy a bariatric chair.  God I even hate the name of it.  I will be a bariatric patient.  Beyond morbidly obese.  One of THOSE people.  Fat and ugly and sick and HUGE.  This fat hatred.  This body hatred.  I learned this from somewhere.  It doesn't matter where.  All that matters is that it HAS to stop.  I have no control over my body at this point.  I have adjusted my food for energy levels which is the most important point right now.  Weight loss will have to wait.

In the meantime, I have a massive problem with body image.  I have to stop hating on myself and others.  So I've joined fat acceptance facebook pages.  I'm in a Fat Fitties group even though I can't exercise.  I'm following several fat activists.  I'm learning even more about fat loss or lack there of.  How it isn't our fault and it isn't a huge moral failing.  I'm starting to see that a lot of the food bloggers have hidden eating disorders.  Even the writers themselves often don't see the disordered thinking.   I need to distance myself from it.  I can easily get sucked in to the "correct diet" mentality.  Punishing myself for eating a piece of bread or having one too many eggs at breakfast.  I want to establish a new set of food rules for myself but even that is suspect to me.  Maybe I'll wait.  I think I need to do more fat acceptance work instead.

Right now I'm angry that Paleo hasn't cured me of CFS.  Paleo hasn't led to weight loss.  Paleo seems to have led to weight gain (but it might just be my body is that fucked up that any diet would lead to weight gain).  I seem to be eating too much but if I eat less I don't feel well.  I'm confounding health with diet and sometimes it just doesn't work that way.  The food bloggers I follow are all of the mind that you can cure anything via diet and regular western medicine is evil.  Sometimes illness is just too great to be overcome by diet.  One of the bodies that was found frozen in the ice in the arctic had Lyme.    Infection was the number one killer of Paleolithic people.  Diet can't always fix you.  It might make you way worse but it doesn't always make you better.

So I'm sad.  I'm confused.  I'm not sure what road to take next.  I know I can't calorie restrict because it will make my illness so much worse.  I've maxed out my diet to provide my body with the best building blocks I know of for self repair.  Yes I cheat but not too much.  If I cheat too much my body is quick to remind me of what I shouldn't be eating.  Cheating shouldn't be a 'thing' anyway.

In the meantime, I'm reading about fat acceptance.  Even if I get healthy again and start exercising regularly I seriously  doubt that I would get anywhere close to my "normal" BMI for my height.  I would be happy if I break the 200lb mark.  But what I really need to do is stop hating my body.  I need to stop thinking of large people as ugly and unhealthy.  I need to reclaim sanity and a healthy body image no matter what size I am.  I need to stop the self-loathing.

So right now I am extra floaty.  I call myself this because I float so easily in the water.  I got to go in a pool last week and I was surprised at how buoyant I am.  It made it really easy to swim and walk around in the water.  I managed to stay an entire hour in the water, drifting around.  I'm definitely going to start exercising in the water when I get some stamina back.  Being extra floaty is a good thing with CFS.  It makes water exercise possible and that is the first good thing I can say about being extra fat: I'm extra floaty and extra floaty is good.

Sunday, July 21, 2013

In Memoriam

My friend from college passed from this world today after a battle with cancer.  This is my first friend that has passed.  Oh there have been funerals.  Many many funerals but they have all been either family or friends of family.  Most of them quite old who passed after living long full lives.  My friend who passed today was a year younger than me.  She was a lovely lovely lady.  She touched everyone with her kindness and generosity.  She will be missed greatly.

I am struck by sheer exhaustion and physical pain from grief and stress.  The one glimmer of hope I had today was realizing that my son's health has improved greatly since last week.  The antibiotics are working.  He is feeling much better but is still a bit off.  He still can't exercise much and the heat bothers him greatly.  However, he is miles better compared to last week.

So it is with mixed feelings that I head for bed tonight.  Tired.  Sore.  Happy.  Sad.  Grief stricken.  Hopeful.  Tomorrow is another day and the heat wave will have passed.  Things will improve.  Goodnight my dear friend.

Do not stand at my grave and weep;
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain,
I am the gentle autumn rain.

When you awaken in the morning's hush,
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there, I did not die.

Mary Frye, American poet (1904 - 2004)

Saturday, July 20, 2013


This heat is really messing with me.  I'm confined to the only two room of the house with AC.  The poor little portable unit can't keep up and I'm still sweating.  Today it hit 100F and with the 70% humidity the heat index was between 105-110F.  Ick.

My only computer is the iPad so I keep darning the battery dry.  For some reason it is much more tiring to use than my big setup in the family room.  I think it is because I don't have to scroll so much.  Scrolling really wigs my poor brain out.

Generally not a good week.  The day after my last post my skating coach's dad died.  I knew him.  Another sad day.  Pics have been posted of my friend who is dying and she looks awful!  I cry every day for her.  She is so sweet.

Some good news, my son is on the mend.  He is doing fine and got a couple of days of work in.  The heat is bothering him which is very unusual.  Normally he loves the hot weather.  But he is out of pain thank goodness.  I think he'll be fine so I can relax some on that front.

Until the heat wave ends tomorrow night I remain sequestered in my two room.  I hate it when my world gets this small.

Monday, July 15, 2013

The Straw

This last piece of news was just too much.  I'm descending into a huge huge sad.  I won't know if it is going to hang around and officially become depression.  I'll have to wait and see on that front but right now I just keep breaking out into tears.

I watched the Texas senate live the other night.  I witnessed senators quoting the bible as THE argument for why this bill should be made into law in the United States of America: a country that was founded squarely on the separation of church and state in order to avoid things like this; one religion becoming the law of the land resulting in one person's beliefs being forced upon another of a different faith.  I witnessed the senators shut down the session and open it up again (before midnight) claiming that it was the next day so that they could legally vote to pass the bill to severely restrict women's access to a safe medical procedure.  Before the vote they prayed for God's guidance.  Afterwards, I witnessed one of the sit down protesters get picked up and body slammed into the marble floor so hard that it knocked him out cold.  He came too not being able to feel his hands and feet with his head in a pool of his own blood.  He was released from the hospital with a concussion the following day.  I shake my head and wonder what this world is coming too.

The following day I hear that Zimmerman was acquitted of all charges.  I wasn't at the trial.  I didn't see the evidence.  I don't understand the law involved.  However, this still doesn't seem right.  To me this seems like an uneven handed metering of a law that shouldn't be on the books anyway.  Stand Your Ground was written up and pushed by ALEC and spread via the republican party with the full backing of the NRA.  How could this not result in violence?  How could this not result in racial tension?  What can we possibly do to change this?

Then shit got personal.
My son had a headache and neckache since Wednesday.  He thought his neck was out of alignment so came with me to my awesome chiropractor for an adjustment on Thursday.  Friday he woke up with a splitting headache and thought it was from the adjustment but now a fever had kicked in.   I let him sleep in Saturday thinking that he just needed some rest and he would be fine.  After he did get up he offered to take me to the farmers market per usual but he was still having headache neckache problems but now he was having dizzy spells as well.  Thing is he isn't a complainer so he behaves normally.  When we finally got home we both took naps.  Neither of us felt like cooking so we went out.  He was constantly playing with his neck trying to stretch it.  His fever was back.

About an hour after hubs went to bed my son came down from his room and told me that he needed to go to the hospital.  When he says this. it is SERIOUS.  He never ever ever complains.  He has been like this since he was a baby.  So he calls his doc to get permission to head into the ER, while I get hubs up to drive him over.   Meanwhile I had no idea that kid had begun to feel woozy.  Like he had had several drinks when he hadn't had any alcohol in days. Inn the meantime hubs starts throwing a grand mal hissy fit in the middle of the living room.  Why is it HE has to deal with this?  Why is it always HIS responsibility to pick up the pieces?  It got the point where kid just yelled "FINE.  I'll f^ing drive myself to the hospital!!" Then went back to trying to talk to the doc on the phone.  Hubs quiets down and drives kid over there and they start testing him for meningitis.  This involved blood draw, CT scan and a lumbar puncture.  In the middle of this, he starts texting me so that I know what is going on.  After four hours there, the doc decide that he has erlichiosis from a Lone Star tick bite he got three weeks ago during an airsoft game in a farmer's field.  The doc said it was very good that he got into the ER when he did or his kidneys would have shut down from the infection.  They pumped him full of antibiotics, saline and pain meds and sent him home with a scrip for doxycycline.

Now I'm on my freak bus.  Every time he comes down with a virus I get scared he will get CFS like me. It hit me out of the blue.  It tends to run in families.  Erlichiosis can linger in the body.  This tick can also transmit Rocky Mountain Spotted Fever which is a known CFS trigger.  So I'm worried.  I'll continue to worry until his is well and back to his old self.

The Straw
While all of the above has affected my mood greatly, I didn't start my decent into the deep deep black well of sadness until today.  Today I found out that a friend of mine from college is dying from cancer.  She lives in Puerto Rico so I haven't seen her since the year that I got sick with CFS.  I attended my class reunion during the infancy of my illness.  We marched in the alum parade together.  She invited me to visit her in PR when I got well enough to travel.  She hosted a reunion earlier this year for my class to celebrate all of us turning 50.  I heard it was a blast.  Now her family is traveling down there to be with her for what is probably her last days.

This is just too much.  I am so sad.  She is a wonderful wonderful woman.  I was so looking forward to traveling there to visit with her.  I miss her posting pictures of her painted toe nails in various settings.  It became a running gag.  She would paint them a wild color and then when she posted about a trip somewhere she would post a pic of her brilliantly painted toes enjoying the trip.  She is just a lovely person.  And I am very very sad.

Wednesday, July 3, 2013

Mr. Sun

Okay I'm not nuts.  Well maybe a little but that is another story...

I've talked before about sunlight exposure helping me feel better.  Prior to this evening I had no idea why this happened.  I didn't know if it was a placebo effect but that didn't make sense since I didn't expect to feel better after being out in the sun.  I just noticed that I did feel better after being out in the sun.  I did several online searches and only came up with the idea that it might be related to the boost in vitamin D levels.  However, taking supplements didn't have the same effect that going out in the sun did.  So it was a mystery.  Well not anymore.  Here is a great TED talk that explains it a little bit.  There is still more research to be done (when isn't there???).

This has two links to CFS patients.  Several studies have shown that we have reduced blood flow and this man has seen increased blood flow after exposure to UVA.  Also, UVA exposure seems to affect the NO cycle in the skin cells.  Well, there is also evidence that our NO/ONOO- cycle is on the fritz.  So these are two possible explanations for why I feel better after sun exposure and they have NOTHING to do with vitamin D.  So I feel a little less crazy-patient this evening.  There is a legitimate explanation for why I feel better after doing some sun bathing.  Now I just need a UVA lamp for winter so I can get my NO on.