Saturday, August 25, 2012

Weird S**t O' Meter

This one definitely pegs the Weird Shit O'meter:

In short it is a new treatment for autoimmune illness that involves swallowing porcine parasite eggs every two weeks for 12 weeks.  Apparently it makes the body stop attacking itself.  The research is being done at Tufts and the company is couple of towns over from me in Burlington MA.  

Right now they are only testing it on Crone's patients.  If it works I can see them trying this out for other illnesses.  Not sure if they will ever get to us CFSers.  I did talk to one guy from Australia that got a fecal transplant that didn't help but that is a single data point.

Sicko Update

Labs came back normal except for my inflammation markers.  I've been too sick to dig out my old ones so I have no idea if they are more elevated than normal for me.

I was doing pretty good yesterday but spent almost all day today sleeping and resting.  It is like my limbs are made of lead.  I just don't have the energy to move them.  Ugh.  At least my head doesn't hurt anymore.

Tuesday, August 21, 2012


I caught some weird virus and the CFS has just made things worse and confusing.  The worst part of this illness has been the nasty headache that lasted a week along with an ice pick migraine that lasted five days.  I've had other strange symptoms including back pain around my kidneys, sweats while being hot and cold at the same time, no fever at all, plumbing issues and really swollen and sore lymph nodes.  I looked like a chipmunk who just raided the birdfeeder.  The pain was the worst part.  I've been sleeping lots and having really strange dreams.  Probably due to being hopped up on caffeine and pain killers and not eating.

I did get to the nurse practitioner today.  My regular doc is on vacation and I'm not going to a sub who doesn't know diddly squat about CFS.  I called my CFS doc who was busy but I got in to see his nurse.  She was upset but I had the excuse that my CFS doc wanted me to let him know if I caught a virus since he might have to put me back on steroids since my immune system is all messed up.

I gave another five vials of blood to the cause and three throat swabs.  Ugh.  My throat is still killing me from that.  The nurse had me close my eyes while she did a sneak attack on my throat since I have such a wicked gag reflex.  I coughed all over her.  I felt so bad.  Here I am with God knows what and I'm coughing all over her.  I couldn't help it.

So now I wait.  It will be several days but I'm having CBC, CRP, sed rate and white blood cell counts done along with viral and bacterial cultures.  I'm looking forward to seeing how things have changed.

Wednesday, August 15, 2012


I hit a milestone today with my CFS.  I've been sick for 27 months, basically couch bound for two years come October.  This past week I've been walking short distances unassisted.  I'm a poor judge of distance but probably 50-100ft or so.  This means walking with no walker and no hanging on the arm of someone or hanging on to furniture or walls for balance.

But today, TODAY, I actually had the urge to stretch my legs.  I had the urge to walk to get a little exercise.  I wanted to feel the movement.  I wanted to get the blood flowing and the cobwebs out.  I had the urge to exercise.  So I made my husband leave my wheelchair in the car, walked into the restaurant on my own, talked to the hostess myself (I'm usually below counter level in my wheelchair so they talk to hubs instead of me), walked to the table unassisted and, after dinner, walked out to the car with my fingers laced in hubs' hand instead of clinging to his arm for dear life.

I don't know if I'll crash tomorrow.  We'll see.  My little walking adventure last week caused a four day crash where my legs were too week to keep me standing up.

No matter.  Today was a milestone for me.  I haven't had that urge to exercise for over two years.  That urge to move.  I'm not talking about desire.  I've had the desire to move, skate, swim, walk, hike, run, drive, etc.  Heck, I spent a lot of time crying when watching the Olympics.  I wanted to swim in the damn pool with Michael Phelps!  But today was different.  Today it wasn't my head wanting to move, it was my body.  My body wanted me to walk around.  I used to get like this when I hadn't been on the ice for several days.  I would get antsy and have this drive to get the energy out of my system.  Today was the first time I can remember it happening since I came down with CFS.

Maybe this is my turning point.  Maybe this is the start of the real road to recovery.  I have to wait until tomorrow to find out if I survived this minor miracle or if CFS is going to yet again kick me in the butt.  Patience.  Patience.

Sick Humor

Sunday, August 12, 2012

Rubbing Salt in the Wound

Well on top of my horrible week I just got some more crappy news: in 2014 the Adult National Skating competition is being held on Cape Cod which is roughly two hours away from me.  Why is this crappy news?  The whole reason I got into testing and competing in the adult track of USFS (United States Figure Skating) was that I wanted to compete at Nationals.  I was in the middle of my first competitive season when I came down with CFS.  I had one more test to take to qualify for Nationals.  I had already passed three tests and received two medals in competition.  Since the competition is so close several of my old skating buddies will probably go to compete.  If I am lucky, very lucky, I will get to go and watch.  I've been crying for days over this.  It is just one more thing to grieve for.  I HATE YOU CFS!!!!!

Thursday, August 9, 2012

To Drug or Not To Drug. That is the Question.

Sorry Shakespeare.  I just couldn't resist.

Bad week here in this chronic chick's house.  The tumble I took the other week has reactivated the fibro pain in my back.  I've had a tough two weeks moving around and sleeping due to pain in my spine and the surrounding tissues.  I always get cranky and out of sorts when I can't sleep enough.

To add to the not enough sleep problem the neighbor has been tying their dog up to the tree outside my bedroom window and letting it bark.  This happens at all times of the day and night, 8am, noon, 1:30am.  Doesn't matter.  They are too lazy to walk it so they just put it outside where it barks the entire time.  I got woken up twice this morning.  I want to shoot it and I like animals.

I also sat on my damaged ankle wrong the other night and crunched several bones.  Since then it has swollen up again and just aches all the time.  It often hurts to put weight on it but not constantly. I can hardly wait for my chiropractor to readjust it and get it working right again.  That is tomorrow.

I also got a call from the CDC to do a telephone survey.  Cool, I thought.  I can tell them all about CFS etc.  But no!  It was a survey on sexual harassment, sexual abuse and domestic violence over the entire course of my 50 year life.  Man did that dredge up some unpleasant memories.  I swear as a woman in the US you can't live out your entire life without getting at least harassed if not actually felt up or raped at some point in your life.  It sucks but there it is.  Yes, I have been felt up on more than one occasion, the first time when I was just 7.  When I was older, I was pawed at by high school boys and coerced by boyfriends that had only their penis on the agenda.  My sister and I chased off a peeping tom when I was in my 20s and we think it was probably my own dad.  I've had coworkers both feel me up and threaten me in a sexual way when I worked as an automechanic.  I even had a customer wave money in my face and proposition me for sex.  The manager threw him out.  And even in a research setting I was told that I had no right to free thinking since I was a female.  I was told that my husband should think for me and had "Why a Woman Can't be More Like a Man" played over and over again in the lab.  "Just for fun" of course.  And, even now, I've been in a few uncomfortable situations with hubs since getting ill and this is from someone that has been an awesome spouse for 20 years and a great boyfriend 4 years prior to that.  Not the most pleasant of phone conversations.

Also, my Mum has been quite sick.  This on the eve of her 80th birthday.  She never gets sick so we were quite worried about her since she had a odd set of symptoms.  It took the doc a couple of tries to figure this one out since it is a fairly rare disorder.  She is on the mend though.  Once the doc figured it out they got her on the right meds and she is much improved.

Well her treatment actually triggered some anger in myself over my own CFS treatment.  You see the illness she has requires low dose prednisone to tamp down the inflammation in her blood vessels.  Last year, I had a cortisone shot in my shoulder for an unrelated condition.  The cortisone stays in my system for about 30 days.  It is supposed to last longer but in me it doesn't.  Anyway, while the stuff was hanging out in my body making my shoulder work properly, all and I mean ALL of my CFS symptoms calmed down.  I was driving, reading, cooking, walking, shopping, etc.  When the month was up I returned to my bedridden self.  When I told my ortho guy about the reaction he told me that my doc could prescribe low dose prednisone for the CFS.  Of course, when I talked to my doc he said no.  It was too dangerous.  I've been on prednisone before and had no adverse reactions to it but of course that was short term.  So on the way home yesterday from my ortho followup for my knee I broke down and had my first cry.  Why can't I get prednisone?  Why does my illness have no treatment?  My life sucks!!  I want a drug that will help with my symptoms and at this point I'm not too fussy about danger.  I'm just supposed to hang around the house hoping this will resolve when I know a drug is out there and available but my doc is too chicken to give it a go??  WTF!?!

To give my doc some credit it is probably a liability thing.  It would be an off label use of the drug.  He could potentially get his license yanked for turning me into a guinea pig but at this point I DO NOT CARE!  I WANT TO TRY THIS!  I AM SICK TO THE TEETH OF SITTING AROUND THE HOUSE!  I am SO frustrated with him.  My last visit I went in with a list of odd treatments that other CFS patients have tried with some success.  They are low risk so I figured he might go for them.  Not a chance.  He said no to all of them.  I'm to messed up in the head when I'm in the actual office I can't argue my case at all never mind well.  And of course I had forgotten to print out papers regarding the treatments to help bolster my case.

Which brings me back to spouse...   Yes, he loves me.  Yes, we are getting along way better.  Yes, our marriage is recovering.  However, I can NOT talk about my illness in any way or he gets wonky. Sometimes it is a little wonky but often he gets angry.  So much so, that reasonable conversation is no longer possible.  So the idea of me explaining things to him so that he can go to the appointment and actually advocate for me is beyond the realm of possibility at this point in time.

Which brings me to my final rant of the evening, my new waterbed.  We got it three weeks ago.  While I sleep really well on it and it is great for my sore joints, it smells.  It is like going to sleep wrapped up in a brand new vinyl shower curtain every night.  The smell has abated somewhat.  The room no longer stinks.  However, I'm a stomach sleeper so my face is inches away from the mattress every night.  When we first got it the smell made me nauseous.  It isn't that bad anymore but I have to wonder what horrible chemicals I'm inhaling every night.  I really don't know if we are going to keep it.  We haven't had that discussion yet.

Okay, so on to the drugs.  I saw my shrink today and unloaded most of the above on him.  I left out the CDC phone call since that is another can of worms for another day.  Of course I was crying the whole time.  It has been that kind of "me against the world" week.  Also I just cry at the drop of a hat these days.  Must be a hormonal thing from the illness.  I used to be so stoic.

Anyway, after he explained that he in no way considers me clinically depressed, he suggested maybe I take something to even out my moods.  So I'm thinking drugs or no drugs?   Prosac is the only antidepressant I've had any luck with in the past (I've gone through three major bouts of depression over the last 50 years) but that was before CFS.   Dr. Komaroff told me that anything that affects the central nervous system is highly reactive with CFS.  I've already had severe reactions to Gabapentin and Effexor so that whole class of drugs is off limits.  I took Prosac over 20 years ago so I have no idea how I will react to it now.  Also I don't feel depressed.  I have bad days and occasional bad weeks but I'm not classically depressed just really tired of being sick.  So here is comparison of my symptoms:

Depressed me:
"I'm worthless"
"I'm shit."
"Why would anyone like me/want to be friends with me/etc?"
"I'm a terrible parent."
"I'm a terrible employee."
I mope around.  I don't want to do anything.  I'm not interested in doing anything.  All I want to do is sleep and hide.  I'm not happy.  I'm not angry.  I'm emotionally flat.

CFS me:
"I'm angry at my primary doc."
"I'm angry at the CDC/NIH/CFS research funding/etc."
"I'm angry at my CFS doc."
"I'm angry at hubs."
"I'm angry at my illness."
"I'm angry at my broken body."
I cry at the drop of a hat.  I'm so angry I want to punch walls.  I want to yell at people.  I feel like everything is a fight.  I feel like I am on my own fighting with no help.  But on good days I do stuff.  I cook.  I enjoy the outside and the sunshine.  I enjoy the flowers in my backyard.  I like going out for rides with my son. I love going to farmers markets.  I'm often happy.  I love it when my son and his girlfriend come over.  I love it when my friends come over to visit.  I love it when my Mum comes to visit.  I love spending the quiet hours of the morning curled up with my cat on the couch watching Hulu or Netflix.

So, do I want to be drugged so that I'm not as angry?  So that I don't cry as often?  So that I'm not suffering?  So that I'm not in emotional pain?  So that I "level out" my emotions?  Is going through the darkness of this illness something to be fixed with meds?

There is this idea that we need to walk through the darkness and not turn away from it.  That the darkness will make us stronger.  I've been through lots of darkness in my life and I know I'm very  very strong.  I'm a fighter.  I don't give up even when I'm crying.

There is also the Buddhist idea that this is all illusion and impermanent and will change soon anyway so why get attached to it in the first place.  Maybe that is what I need to remember.  I get angry because I am wishing for things that I can not have at this point in my life.  I am wanting.  In Buddhism, it is wanting that is the root cause of suffering.

I need to figure out how to let go of the wanting.  Then I won't need the pills.  And, I'll be stronger for it.

Wednesday, August 8, 2012

Yay Me! And Twenty Other Bloggers!

I started writing this as a diary.  Writing helps me work things out in my head.  Sometimes this means the blog is all gloom and doom but other times interesting ideas pop out.  I write for myself and never expected anyone to read this besides my mom.  Thanks mom!!  Love you bunches!!

Today I was informed by a reader that I won Best Fibro Blogger for 2012 along with twenty other lucky bloggers including one of my online friends, Cranky Fibro Girl.  I never EVER thought people would read my words never mind select me for an honor such as this.  I'm flattered and very very thankful.

You, my readers, have made my day!!  Thank you!! 

Tuesday, August 7, 2012

The Salt of the Earth

If we didn't have salt we would be dead.  No.  Really.  This isn't an exaggeration.  Salt allows our nerves and muscles to work properly.  It allows our brain to talk to the rest of the body.  It is so valuable to life that it is transported across the desert on the backs of camels for trade.  Salt has gotten a bad rap and I fell for it.

Many years ago, about the time of the low fat craze, we were told that salt was bad for us.  That we had to eat low salt diets so that we wouldn't have heart attacks or strokes.  So about the same time I went low fat I also went low salt.  I stopped using salt in my cooking.  That was roughly 20 years ago.  About ten years ago I ditched the iodized Morton's and switched to healthy sea salt for the few odd times I really did need to add a little bit to my cooking.  Mostly it got used for chocolate chip cookies because they just don't taste right without it.

So 20 years of low salt cooking later, I have CFS with bad orthostatic intolerance.  I had noticed the weird dizziness and brain fog years before I had CFS.  My friend told me I probably needed some salt.  She was from India and she was right.  One serving of salty french fries later I felt way better.  So I was definitely short in the salt department even before I came down with CFS.

Now, with my dizzy spells, I've been told to eat more salt.  This works somewhat.  I've been adding salt to the vegetable water and to the meat before and during cooking which is going fine but I'm having trouble readjusting to salty foods.  I've been low salt for so long anything with lots of salt just tastes nasty to me.  This is one of the big reasons I haven't been able to add fermented vegetables to my diet.  They are fermented with salt and lots of it.  Ick.

Okay, so I'm adding salt to my food.  Hopefully I've been building it up a bit.  I've been eating fries more often and making sure they are salted.  I know I'm still not getting enough but I refuse to add potato chips to my diet.  I will continue to slowly increase the salt during cooking.  I'm up to two pinches instead of one so things are moving in the right direction.

A low salt diet also means a diet low in iodine unless you eat a lot of seaweed.  Yuk!  Can't stand seaweed.  For one thing it is too salty.  Ironic huh!  A few weeks back I read an article on Mark's Daily Apple regarding iodine deficiency.  Apparently it causes hypothyroidism in some people.  This results in cold hands, cold feet and fatigue.  There are some other symptoms but these match my case perfectly including borderline hypothyroidism.  Now supplementing with iodine can be hazardous for anyone with Hashimoto's Disease, which is an illness of the thyroid, but I've been tested for that already when they did the thyroid panels.  Because I'm such a close match to the symptom list and the fact I haven't had anything with iodine in it for years (I don't eat seaweed which is the food source for it other than iodized salt), I decided to give supplementation a go.

The experiment turned out much more successful than I expected.  I got the potassium iodide version in 225mcg (microgram) pill form.  That is 150% of the RDA.  I figured start small.  My system is messed up enough I want to start with small doses of things.  Boy was that a good guess!  I took one pill and within the hour was sweating up a storm.  Later I read on Mark's blog that if you have been deprived of iodine for a long time then your system can over react to it.  No kidding.  I skipped a day and then took a half pill.  Same reaction.  Sweating and sweltering hot.  Although this was  a dramatic reaction I knew I was on the right track.  I have probably been deficient in it for years.  I'll just take a half pill every other day or so until things calm down.

It took two weeks but they did eventually calm down.  I now take a whole pill every day in the morning.  I no longer have the instant "hot flash" reaction to them.  My hands and feet and even my whole body is no longer cold all the time.  I'm quite warm.  Even my hubs noticed that my skin is really hot now.  Of course this miracle has occurred at the exact same time as a heat wave so I'm totally miserable.  I'm hot and the weather is hot so I'm melting but I'm very happy that things are going so well.  I even checked with my CFS doc and he is fine with me taking the supplements.

Now one more thing I need to mention is that iodine needs to be taken with selenium.  The perfect food source for selenium is Brazil nuts.  You only need one per day.  Mine arrived in the mail today. I had forgotten how much I love these nuts.  I haven't had them in years.  So I ate TWO before my breakfast.  Woohoo!!

I'm feeling better these days.  Since iodine is the only thing that has changed I am attributing the increase in energy to the supplements.  At least for now.  I've been doing a tiny bit more housework. I cooking more often.  I'm walking longer distances.  My chiropractor even noticed that I've been doing better.  First time I've walked into his office unassisted in months.

Things are looking up!

More on Selenium supplementation.  Turns out it helps with autoimmune disorders.  CFS maybe??
List of great articles on thyroid problems.
List of article on salt.
More on OI, salt and CFS
Doctor written article on OI and salt