Monday, December 30, 2013

Sick Humor

Between the bad weather and all the excitement of Christmas, this was me this weekend:

Saturday, December 21, 2013

Six Cards

For the record I mailed six Christmas cards.  It still really tires me out to do any sort of paperwork.  I'm wondering if it is a Pavlovian response after doing all the paperwork for the various insurance companies.  The minute I sit down with pen and paper a weird brain fog sets in.

Anyway, we do have more friends/relatives than six.  Hubs filled out cards the other day but I don't know who he sent them to since I haven't seen him to talk to lately.  He has been staying late at work and then getting stuck in holiday traffic on the way home.  I'm bummed I missed the solstice concert at the UU church this evening because he didn't get home until starting time.  Herding cats.  It really is like herding cats.

The general plan is that I'm going to see my own family at some point over the next few days, except they haven't told me when.  Would be nice if I got a phone call letting me know what the heck is going on.  Gah.  Family.

My tree looks great.  My son and I finally decorated it today. It looks lovely.  I was telling him about the history of the ornaments as I was unpacking them.  Some of them have been passed through several generations of family.  We decided against the tinsel so it is just lights and heirloom ornaments.  It made me happy to be able to decorate it with him.  I'm sure he has no idea how much it meant to me.  If I told him he would just roll his eyes at me.  LOL

You know those yuletide log vids of a fireplace so that you can make pretend you have a roaring fire?  Last night I found the best one EVER.  Here for your viewing pleasure is LilBub (one of the world famous internet cats) sitting in front of the Yuletide logs purring her cute little head off.  It is particularly effective if you set Pandora on Christmas music while you have the "fire" going.

Thursday, December 19, 2013

Christmas Card Blues

Christmas has never really been a great holiday for me.  My dad would often lock himself in the bedroom and stay drunk for the entire three days we spent celebrating.  My sister, mother and I combated this by trying really hard to support each other and make each other happy.  Since we emigrated from the UK to the US, we had no relatives near us to celebrate with.  Parcels and cards crossed the ocean but transatlantic phone calls were expensive and notoriously hard to connect (we would sit at the phone dialing and redailing the numbers until it would finally go through) so for the most part we were on our own.

Don't get me wrong, as long as dad was locked away for the duration, the holiday was quite nice.  We baked together, went caroling with our friends from school, went to a neighbor's party every year and bought each other the best presents we could afford.  I do have a lot of good memories from that time period.

Then marriages happened and this broke our little gang up.  We had to travel all over the state to visit all the different families.  Over the years this settled into Christmas eve with hub's family, Christmas day by ourselves and Boxing Day with my family.  It worked great until hub's family had a monumental blowout and everyone stopped talking to each other.  Then shit got weird.  And lonely.  Things deteriorated even more when I got in a fight with my mom and sister and they stopped talking to me for a few years.  

Due to hubs being a sound guy, he was inevitably working during the holiday season so he wasn't around to do anything.  My mom and sister moved far away so I couldn't see them anymore.  So no more going out to do Christmas stuff.  I wasn't near anyone and we were barely speaking so I didn't know what presents to get anyone.  I didn't get to go to parties.  No more wrapping presents with my sister and mom until the wee hours of the morning while drinking sherry.  I was really by myself for a while.  And I was really miserable around the holidays.  It got so bad I quit decorating the house.  I seemed to be the only one that cared about Christmas and hubs and kid wanted nothing to do with it so I quit.  I went on Christmas strike for many years.  

It got so bad I started putting up a metal lawn ornament Christmas tree instead of a real one.  I called it my minimalist tree.  It was painted white metal with small white lights.  I added sky blue balls and called it a day.  The only parties I went to were office ones.  We had never stayed in one place long enough for me to make real friends anywhere.  I moved on average every year for almost ten years running.  Hubs HATED Christmas music so I couldn't even play it in the house never mind go to a concert or go caroling.  I don't blame him.  He did two to three shows a day of Pop's Christmas shows for two to three months in a row for ten years.  I would hate the stuff too if I had to listen to that.  But I missed going out to do Christmas stuff.

However, one thing I did do was send out cards.  It made me feel loved to get all those cards back.  I hated sitting down to make them out, but man did I LOVE getting ones in the mail.  Because I did this every year I was still sending cards to people I worked with decades prior.  It was often the only contact I had with these old acquaintances.  

Since I've been sick, I haven't been able to send cards for a couple of years now.  I did manage to get out New Year's cards with short notes in them last year but I missed a couple of years prior to that.  I was just too sick to sit at a table for long enough to write out cards.  It is amazing how many people don't send one if you don't send them one.  I've been too sick to notice or care until this year.  This year I've been putting off writing cards. Cards are bothering me on several levels.    

Unlike Americans, I keep cards.  I'm from a traditional Victorian family and we save all of our correspondence.  It used to be the done thing.  I must say that it is a real pleasure to read over a letter that is ten or twenty years old or run across a letter from a deceased relative.  This is one of the few things I worry about with the invention of the internet and email.  That body of correspondence that brought personal pleasure and a source of historical information is gone in the ether.    But I digress...

Last year my son and husband decided that we needed to decorate for Christmas.  Hubs brought home a tree from a tree farm.  My kid put up the decorations.  I sat and marveled at the whole thing.  We went for a drive to look at the Christmas lights our neighbors put up.  And Christmas turned out pretty good despite my trip to the ER later that night.

This year I'm well enough that I want to decorate and do cards.  However, trying to get hubs, kid and me to do something together at the same time is like herding cats.  It just doesn't go well.  The weekend I was looking forward to buying a tree, putting it up and decorating it with hubs and kid, I was well enough to participate.  I came out of the bedroom to find hubs had taken his work vehicle apart and was in the middle of installing a widget on it.  Kid was on the Xbox and didn't want any human contact because he had just finished finals.  When we finally got into a vehicle to get a tree, it was dark.  I was looking forward to going to a nice large place where we could wander around and look at a variety of trees and pick out something nice.  Hubs literally drove us around the corner to a small nursery where he heard they had cheap trees.  They only had a few out of their wrappings and they hadn't been standing upright so the limbs hadn't dropped and you couldn't tell their shape.  Since we were the only ones there, the kid running the stand was picking out trees for us to look at and it was about ten degrees outside.  I didn't want to be the picky female so I agreed to the second tree that the kid picked up that hubs liked.  I climbed into the car while hubs paid and kid strapped it to the roof for the half mile trip back home.  The entire process took about 20 minutes.  Hubs pulled into the gas station to take a family photo for me to post to Facebook of us getting our tree.  Insert rude noise here.  The pic is still on my kid's phone.

The poor tree spent the next three days upside the garage.  It got covered in snow and then ice.  Hubs finally brought it into the garage so it could melt before being brought into the house.  It took another week for hubs to get lights on to it.  On one of my good days where I wasn't doing something else, I managed to go through the Christmas ornaments and sort which ones we were keeping and which ones were getting pitched.  I haven't been well enough to do this for years.  This is my fourth Christmas with CFS.  Ugh.  Then a snowstorm hit which put me in bed.  Then a doctor's appointment.  Then another snow storm.  The tree still isn't decorated and I'm very sad about it.  I does look good with the lights on though.  I'm happy that we have a nice tree.  

I still haven't done cards though.  I'm putting it off.  While unpacking the ornaments I found a card from hub's mom.  It was from ten years ago and she said that she was looking forward to coming over for Christmas dinner and seeing us.  She passed away the year before I got sick.  I cried and cried.  I miss her.  I miss spending holidays with her.  

Yesterday, I saw a Facebook post that my friend from college was laid to rest on campus.  A small group of fellow students went there with the family to spread some of her ashes under the trees next to the lake.  I cried some more.  I will miss her too.

I miss so much.  I miss baking with my sister.  I miss wrapping presents with my mom and sister.  I miss having large family dinner with hubs mom and my family all crammed around my small dinner table eating off family heirloom fine china.  I miss going to huge family gatherings.  I miss going to Christmas parties.  I miss having so many people over that I have to set up a kids table.  I miss having the house festooned with decorations.  

I sat down to write cards today.  I went through my Rolodex.  It is sad how many people no longer contact me since I got sick.  People I had considered friends but have left to go on with their active lifestyles.  Family that has passed away.  Friends that have passed away.  This year is weird to me.  It is a season of loss but at the same time I'm also letting go of that Rockwell painting in my head.  That perfect family that doesn't exit.  It has never existed.  I can feel the holiday shifting beneath me.  I'm grieving my losses but at the same time celebrating my many small victories.  I'm doing so much better than last year at this time.  This whole year has been better for me from a health perspective.  My marriage is doing better and is slowly healing.  My relationship with my son is getting deeper and we find ourselves talking often about all sorts of subjects including very personal ones.  I have a great new car.  I'm walking short distances.  I have all sorts of cool internet friends.  All I need is a party to go to.  
I'm going to write some cards now.  I feel a bit better after writing this long missive.  I hadn't intended it to get this long but once I started, it all had to come out.  Looking at the bright side I only have a handful of cards to write.  This won't take long.  Peace out!

Monday, December 2, 2013

Sugar and Metabolism

Two very interesting videos both by a very very smart man Dr. Lustig.  I still haven't picked this apart in the context of CFS/ME but it might explain why CFSers/PWME have problems with sugar.  Our livers don't work well and fructose (a component of sugar) does nasty things to the liver.  Things I'm going to research further/think about: FODMAPs, fructose intolerance, liver function in CFS/ME

Without further ado:



I've been doing some research on glutamate.  It looks like in a healthy brain it doesn't cross the blood brain barrier so brain levels of glutamate are unaffected by dietary levels of glutamate.  If the barrier is compromised, then all bets are off and no one knows for sure what gets across.  And, no I haven't figured out if the BBB is compromised in CFSers/PWME.  MSG does affect your body in other nasty ways and I actively avoid it but it isn't a direct contributor to brain levels of glutamate, as far as I can ascertain.  But I'm still reading (when my brain works)...

BTW, glutamate, glutamine, glutamic acid are all different chemicals and are not interchangeable.

Further readings:

Blood-brain barrier and glutamate by Richard Hawkins

Am J Clin Nutr. 2009 September; 90(3): 867S–874S.
Published online 2009 July 1. doi:  10.3945/ajcn.2009.27462BB

Tuesday, November 19, 2013

GABA and Cipro

I've figured it out.  Only took me what?  Four months?  I've finally been well enough to do a little bit of complicated reading.  The original post is here.

The short story is that the brain has glutamate and GABA.   It needs both to function well.  However, too much glutamate can be a very bad thing.  It causes brain fog and can lead to brain cell death. [1]  It is speculated that CFSers have too much glutamate in the brain. [2]  Hence the brain fog.  Turns out Cipro binds with the GABA receptors in the brain causing the brain to create more GABA. [3, 1]  GABA is what gets rid of extra glutamate. [1]  So when I had several IVs of Cipro, I'm guessing that my brain started making more GABA which got rid of the extra glutamate and my CFS got better.  Woot!!  The only bad part is that it made me go lame.  (However the lameness probably came from the Levofloxacin not the Cipro [3])  Now to figure out how I can get more GABA into my system by a safer means so that I won't risk going lame in the process....

Along comes Terri Wahls (I'm beginning to love this woman).  In her book Minding Your Mitochondria, she states that GABA can't cross the blood brain barrier so it can't be taken in through diet.  Instead you have to supplement with the building blocks needed for the brain to produce it on its own, cysteine, taurine and methionine.  Basically supplementing with NAC and taurine might fix this. [1]  I already had NAC in my pill stash and I purchased taurine today.  So the great supplement experiment commences...

I decided since the supplements I'm currently taking are best guesses by a random collection of practitioners, I'm just going to revamp my whole pill schedule based on Dr. Wahls' program.  She recommends getting most of the stuff from food but I'm still not eating enough of the right stuff to get all of my nutrients from my diet.   I'm missing vegetables, greens, fish, and offal.   Stuff I'm lacking is due to the problem of prep work in order to eat it.  It is also complicated by the fact that I get severe heartburn if I follow her 3 cups of cruciferous veg a day recommendation.  I just can't eat the sheer number of vegetables she wants and stay off heartburn meds.  So I'm supplementing until I can further refine my diet.

Here is the master list (I'm not listing dosages on purpose go to Dr. Wahls book for the details):
Methyl B12
D3 (for the winter months)
N acetylcysteine (NAC)
L Carnitine
Alpha Lipoic Acid (ALA)
Ester C (not on Wahls' list but highly recommended by several of my docs)
Calcium (also not on Wahls' list but I find it helps to take it with Magnesium for muscle cramps)
S.  Boulardii (not on Wahls' list but I feel better when taking it)
Biffida (not on Wahls' list but I tested deficient earlier this year)

Stuff I take in food form:
fermented cod liver oil
vitamin butter
probiotics in yogurt, kefir, sauerkraut and fermented beets
selenium as Brazil nuts (I just realized that my mysterious nail breakages have been from eating too many of them.  I have to cut back to one nut no more than three times a week.)

I was already taking a lot of these supplements.  The revamp has added many more pills though.  I should take five sets of pills since some have to be taken between meals.  Ugh.  I'm not sure how compliant I'm going to be.  I hate taking pills so much I can just see me skipping doses.

The one really weird thing I noticed during the revamp was that somehow I dropped the ALA from my regimen.  I don't know when or why or how this happened.  I've been on ALA from early on in this illness.  Maybe I simply ran out of pills and forgot to order more.  I'm really stumped on this one.  Anyway, it'll be good to have it back in rotation.  And hopefully I'll be generating more GABA soon.

For further reading:
[1] Dr. Terri Wahls, Minding Your Mitochondria 2nd edition

Wednesday, November 13, 2013

Happy Car Sad Car

Happy car: sad car.
Well car: sick car.

I figured out what has been bugging me about buying the new car and giving up my old one.  It is another loss to CFS/ME.  My old car represented freedom.  I traveled to work.  I drove to Toastmasters meetings and contests and conferences all over the state.  I drove to garden club meetings and garden parties.  I loaded up gardening club members and we filled the trunk with plants and soil and rocks for our gardens. I drove to college reunions and to the airport.  I drove to Lake Placid several times by myself to spend a week figure skating with my Mom.  We went on family vacations all over New England in it.  I drove to figure skating practice, ice shows and tests.  I drove to the gym and to restaurants.  It was my well car.  My gateway to freedom to roam this planet as I wished.  I have lots of happy memories in that car.  I taught my son to drive in that car.

My new car is gorgeous.  However, I keep crying when I think of leaving my old car at the dealership never to be seen again.  My new car is my sick car.  The one that I had to fit my wheelchair in instead of my gardening supplies and figure skates.  The new car had to fit all three drivers so that I can have my family chauffeur me around because I can't drive myself most days.  The new car had to have a soft ride so that it didn't aggravate my neuro symptoms and leave me unable to walk or talk after a road trip.  The new car had to have easy steering so I can turn the wheel with little effort so that on the odd occasion I do drive it isn't physically tiring for me.  My new car is my sick car.  The one I was forced to buy because of the circumstances forced upon me by CFS/ME.  My life is becoming circumscribed by my illness and I don't like no matter how pretty my new car is.

So while I like my new car and admire its engineering, I also hate it.  Nah...  Hate is too strong a word; maybe dislike is better.  I dislike my new car.  It is shiny and new and pretty and smooth and big but I miss my old car even though it was broken.  I miss it even though the power steering would cut out mid turn and a string of obscenity would fly out of my son.  I miss it even though the passenger seat is stained from spilled milk shakes and coffees.  I miss it even though the rear seats are stained from the wet butts of my kid's BB rifle team after playing in the rain.  I miss it even though it is scratched and pitted and dented.  However, I know where each of those scratches and dents came from: my son scraping ice off my hood with a broom; me trying to squeeze down a too narrow road and having a bush scrape the length of my car; the little dent in the bumper from the lady rear ending me when I was sitting at a stop light on my way to work and she was on her cell phone.  These are the memories of freedom.  Memories of my life before CFS/ME.  My well car.  My happy car.

Eventually my new car might become my happy car.  We'll go on family trips and spill crap in the seats and dent it and ding it.  New memories will be made.  At this juncture I'm dubious.  I don't know which way things will go.  Happy or sad.  So right now; right this minute; it is my sad car: my sick car.  Hopefully that will change.

Tuesday, November 12, 2013

The Car

It is done!  I've bought a new car.  It is a dove gray Mercedes ML350.  Everyone fits in it.  The wheelchair fits in it.  It is kind of difficult for me to climb into but hey I usually don't travel when I'm really messed up.  We've got a month to decide if it won't work.

I must say I do love buying cars from the high end dealerships.  I write a check for an obscene amount of money and they take care of absolutely everything; title, insurance, RMV, plates, inspection.  I just show up and drive away.  Woot!

So here is a stock photo of the same type of car I just bought.  It even has enough room for when I get a full sized wheelchair.  Yay!

Monday, November 4, 2013

Car Shopping

My car is falling apart.  It is literally unsafe to drive at this point.  The steering has a serious issue in that the power steering randomly stops working usually when you are taking a left turn.  Very dangerous.  My son has nearly gotten into two head-on collisions because the steering failed on him mid turn.  Now the exhaust has sprung a leak and it sounds like a ricer car (Japanese race car).  So I've been trying to car shop this past month.

Riding in a car is horrible for me.  It makes me deteriorate into whimpering, sleepy, bobblehead doll that can't speak, walk or make decisions.  So finding the right car is imperative.  I've found that I need something that is quiet and has a very soft comfortable ride.  This allows me to travel further before my symptoms deteriorate.  Due to my fibro and osteoarthritis in my back, I need something that is very easy to steer.  And to further complicate things, my wheelchair needs to fit in the trunk along with groceries. My husband is 6'8" and I'm 5'2" which makes finding a car that we both fit in almost impossible.  Kid is the main driver with hubs secondary and I'm a very distant third.  So the basic starting criteria are:

  • drivers seat adjustable so both hubs and I can drive comfortably
  • easy steering
  • wheelchair fits with a full load of groceries and room for three people
  • quiet squishy ride
  • hub's head can't hit the roof and needs an unobstructed view while driving
  • something I can easily get in and out of when I having a super bad day (no muscle control)
To further complicate things hubs and I are both ex auto-mechanics making us very persnickety about brands.   Hubs is worse than me in this regard.  He is very opinionated and flatly refuses to even try something Japanese such as Toyota or Lexus.  Granted he probably doesn't fit in the them anyway but it sure eliminates a huge number of vehicles right off the bat.

This past month I've been attempting to go car shopping.  For me this is a super human feat.  The trips takes hours and I'm usually a complete wreck by the end.  I've tried to do some of the research on line but I can't retain information about the cars or remember which ones I've looked at or what features I like.  Going out to physically car shop,  I can only drive around parking lots and don't trust myself on roads.  I also can't remember which cars I've tried out and which ones I've already rejected.  This is a very difficult project for me but I desperately need  a new car.  Every time the power steering fails on my son he threatens to drag me out car shopping again.

Today we were supposed to go back and see a Mercedes wagon that it took me overnight to decide that I liked it.  Things weren't going well.  I already had a meltdown and we hadn't even left the house yet.  I was scared that hubs would get mad.  He had that face on.  He kept saying he was fine.  We had discussed finances, how much we could afford, how much the down-payment needed to be, how much the monthly load payments would be and even what the insurance payments would be.  I thought we were all set.  Now one thing to note: hubs own five vehicles that are lucky to see the light of day once or twice a month and his daily driver is a company van.  I'm driving around in a dangerous car that shouldn't even be on the road.

On the onramp to the highway (we didn't even get to the dealership yet), his mad switch flipped on "The car is broken!  My wife is broken!  The bathtub is broken!  I'm being forced to spend thousands of dollars against my will!  Of course I'm angry!"  Me, "It isn't like we didn't see this coming."  (my car has had a this steering problem for over four years but it has only recently become dangerous)  "We've been talking about buying a new car for over a year now."  I shut up so things wouldn't get worse.

We got to the strip of road where all the auto dealers were.  I asked if he wanted to look around the lots we missed yesterday.  "Sure." I recognize that tone.  He's going to pop soon.  This isn't over yet.  So we go cruising around the various lots, Lexus, Toyota, Chevy, Porsche (hey I can dream) and then we get to the Jeep lot.  As we are driving around, I notice a Jeep which I don't recognize the model name and make a comment, "Hey, I've never heard of that model."  And it starts, "What planet do you live on????  Don't you remember that one that lived in our driveway for a month???  I was fixing it for a friend of mine and you couldn't get your crap together to go for a ride in it!!!"  I fall silent.  "What happened to that smart woman I married???  Huh???  You can't remember a damn thing!!!  I have to keep track of everything for you!!!  What happened to you!?!?!"  The words still hurt even as I type them hours later.  Needless to say I just broke out in tears.  He had to pull into the McD's lot to try and talk with me but it was too late.  I was a mess.  "I'm not stupid.  I'm sick.  I'm REALLY sick.  It affects my brain."  He took me home where I devolved into an incoherent CFS pile of bobblehead jello.  I was so upset that my CFS symptoms just escalated to the worst I've been in almost a year.  Shakes.  Head bobbing.  No words so unable to talk beyond single words.  Walking like a drunk sailor.  Foot dragging.  Mess.

I finally fell asleep on the couch.  Best thing that could have happened really.  I needed the rest.  I woke up somewhat recovered.  At least the shakes and bobbing had gone away.  I was still dizzy and had trouble walking.  While I had been sleeping hubs had been welding my exhaust back together.  He pretty much fixed it.  There is still a small hole in it but it no longer sounds like a ricer.  He also attempted to fix the bathtub.  He is being amazingly nice to me.  He is funny.  He SUCKS at apologizing.  Instead he has figured out that if he is super nice to me for long enough I just get over being mad at him.  Trouble is, it works.  It is only lately that I have started to insist on an apology.

I can tell the resolution to this little tiff is going to take several days of negotiation.  I've already fired the opening salvo earlier this evening, "you have six cars.  I need a car that doesn't suck.  Do you understand why I'm angry?"  "No.  I just paid off the house.  I do everything for you." etc.  This is an old argument pattern that started after I got sick so I didn't engage him any further.  Best to wait him out for a bit so I tucked him in to bed instead.

I'm going to have to think on things for a bit and try again tomorrow.  I'm still not totally sure what I want to resolve this.  An apology?  Him to understand why I resent not having a nice car while he has five of his own?  Him to understand my illness better?  Him to have more compassion around my illness?  Fat chance of that last one happening.  Compassion was never his strong suit.  Sigh....  I need more sleep.

Oh, BTW, I have my eye on a nice bronze 2009 Mercedes wagon with a beige interior.  Everything and everyone fits in it.  It isn't black on black so it won't turn into an oven in the summer.  I can afford it since the dealer is selling it at a super low price right now and it drives like a cream puff.  LOVE it!!  Hubs is brining it home for me to drive around the neighborhood tomorrow night.  Maybe he isn't all that bad after all.   Marriage is such a complicated thing sometimes.

Saturday, November 2, 2013

Thump Thump

Like others with CFS/ME I have weird heart issues.  I have an elevated heart rate at rest, 90-98bpm.  I get dizzy with prolonged standing (the time period gets shorter as I my CFS gets worse) and have to sit down but haven't been diagnosed with POTS or NMH.  The cardiac guy did mention vascular insufficiency as a possible cause but nothing ended up in my official record.  I find that compression stockings do help and I wear them quite frequently.  I do get random chest pains, heart racing, heart pounding and butterfly in the chest effects.  All of which occur more frequently on my bad days.

I bring this all up because I just watched three vids by a Dutch cardiologist that treats CFS/ME patients.  Turns out I have nothing to worry about as far as my heart and lungs go.  It is just my CNS acting up.  Which dovetails into a paper I've been trying to read on CNS and brain inflammation. (More on that later.)  So here are the three vids.  I found them to be very informative.  Based on the info I just learned I probably won't go to a cardiologist since they probably won't find anything.  It is just my CFS/ME kicking my butt as usual.

Vid 21 ME/CFS and The Heart:
Vid 22 ME/CFS and Palpitations:
Vid 23 ME/CFS and Cardiac Arrhythmias:

Wednesday, October 23, 2013

Sick Humor: Juicing Edition

Yeah, I fell for it.  I saw Fat, Sick and Nearly Dead and I went out and bought a juicer.  A really nice one.  I do use it once in a while but mostly it gathers dust.

Turns out I really like carrot juice.  Celery, cucumber and apple isn't bad either.  However, the juicer is TERRIBLE at juicing leafy greens though and these are what I wanted to get into my diet per Fat, Sick, etc and the Terri Wahls Diet.  Now before you say "just throw them in the blender" I've tried that.  My blender sucks pond scum.  It really doesn't puree the greens and I end up with leaf chunks in the drink which I find really unpalatable.  I'm weird that way.

When I was first starting out, I also found that juice spikes my blood sugar really hard and I crash a few hours later and need to be scraped off the floor.  It is actually worse for me than drinking coffee.  I also discovered that you need LOTS of vegetables to make juice.  My fridge wasn't big enough and because I only shop once a week much of the produce rotted before it ended up in the juicer.  Bummer.  And I also ran into this problem:
Yup.  I admit it.  I HATE green juice.  It tastes like snail burps.  Blech.  I have a huge tub of spirulina and another of chlorella that are gathering dust next to my juicer.  Snail burps says it all.

Of course I'm always willing to try again so I have some Amazing Grass on its way from Amazon.  An old CFS friend got better drinking this stuff.  I'm only hoping it tastes better than snail burps.

Saturday, October 19, 2013

Broken Mitochondria

After doing lots of reading (mostly during the first year I was sick when I could still read), I decided that my mitochondria were probably on the fritz.  This leads to some interesting problems including but not limited to glutathione depletion; not being able to detox; not being able to produce energy; not metabolizing food properly; and apparently the way I store and use fat.

So here is the latest roundup of articles on the methylation cycle and otherwise misbehaving mitochondria.

And some bonus material on the cause of Fibromyalgia:

Sunday, October 13, 2013

Comments on the Comments

I still can't comment on my own blog.  Sad face.  I've reported it to Blogger, which took a miracle in and of itself, since they don't want anyone to talk to them directly.  After all the hoops I had to jump through, the answer was "we're working on it".

Basically my computer contracted some malware after hubs decided Torrent was a cool item to download.  *insert lots of cuss words here*  The malware took over control of Google Chrome.  After two days I managed to delete 99% of the malware (one little bastard program can't be deleted) and restore Chrome to most of its functionality.  However, this has left Blogger itself glitchy.  It thinks I'm logged out ALL of the time, even if I'm logged in.  I can't comment on anyone's blog including my own.  I miss the interaction with other bloggers.

Anyway, I just wanted to let everyone know, I do read all the comments.  I just can't comment myself so I can't reply individually.  Bums me out not to be able to have a conversation with readers and fellow bloggers.

Friday, October 11, 2013

Insurance Denials

Just to be clear there are two types of insurance, social security and long term disability.  Social security disability has several parts: SSD which is straight disability benefits, SSDI which is supplemental for people with next to no savings or assets, and Dependent benefits which goes to your child if they are under the age of 18 and might continue into college.  Long term disability is private insurance that you buy before getting sick.  The two main differences I discovered is that SSA needs you to prove that you can NOT work but LTD wants you to prove both illness and inability to work.

Just want to add in here that I'm NOT a lawyer and I'm only speaking from my own experience with both types of insurance.  One additional note, LTD forced me to take SSD.  I didn't qualify for SSDI but my son was underage when I first became disabled so he got benefits for a little over a year.

Here are two lawyers with some good advice on disability cases.

Wednesday, October 9, 2013

The Ceiling at Whole Foods

It was bound to happen sometime and this past week it finally did.  I tipped over in my wheelchair.  After riding in it for three years now and going over hill and dale and all sorts of bumps, steps and ramps, I finally tipped over and it was on a beautifully polished, perfectly flat floor.  It was quite comical really.

My Mum was here for a visit so kid dropped us off at the store so we could take a leisurely stroll.  Hubs and I have figured out a very efficient method of shopping: I push a cart and he pushes me.  This means I'm in charge of steering and he is in charge of braking.  It looks goofy but it works.  I've taught this method to my kid and my Mum and a friend of mine (who didn't quite catch on which lead to a few near misses).  This allows two of us to do a large shopping trip without needing a third person in tow to push the cart around.  We had great fun investigating the new store.

After an hour or so, we had finished our shopping and went through the checkout line.  The bagger loaded up my reusable bags with the groceries and put them on my handlebars.  This is normal procedure.  I know enough NOT to stand up with even a light load on the handlebars since the chair will immediately tip over backwards without my weight in the seat to keep it upright.

We decide to get coffees while we wait for kiddo to pick us up, so we head over to the cafe area.  Mum parks me by a cluster of comfy chairs and heads off to the coffee bar leaving me alone to call the kid.  I get out my phone and call him.  He'll be right over to join us for coffees.  He is just as addicted to the stuff as we are.  Putting my phone in my pocket I decide the ottomans look amazingly inviting and decide to put my feet up and have a rest while waiting for everyone to come back.  I put one foot up and roll a little bit to get the to the correct distance to rest comfortably on the ottoman and then pick my second foot up.  That is when I felt it: that slight shift in balance, that ever so slight shift in weight.  The grocery bags suddenly took over and tipped my chair over backwards.  In slow motion I watch the wall and then the ceiling move in front of my eyes as I descended backwards in a slow arc.  Thankfully I landed on the bags themselves which saved me from a nasty headbump or worse from the concrete floor.  As it was, I hit both my elbows on the cement and they both screamed in pain.  So I lay there staring at the immaculate new ceiling in Whole Foods wondering how the heck I was going to get up.  Of course I started laughing since this was absolutely ridiculous.  I was very very stuck.  The arms were in the way so I couldn't swing my legs around or roll out.  I was at an odd angle.  Finally I decided to push off the armrests as hard as I could so I could scooch backwards as far as possible.  After doing that, I was far enough back that I cleared the armrests so I rolled to one side over my shoulder, karate style, ending up in a seated position on the floor.  Sitting on the floor I wondered how I was going to get up, how I was going to get the wheelchair up and what I was going to do with those heavy bags.  Again I was accosted by a fit of giggles.  Here I am a short fat disabled lady stuck on the concrete floor of a huge shopping market.  I felt ridiculous.  Luckily by this point a nice young couple came over to help.  They righted my chair and I used the arms to get myself to standing and into the chair.  They kept asking if I was okay and when they were happy with my reassurances they left me on my own.  Luckily the bags had fallen off the wheelchair handles and were now sitting on the floor.  The lady must have righted them while the gentleman was dealing with my chair.  I slid everything over to the ottoman trying to make myself as compact as possible.  I decided I didn't want to sit in my chair and took harbor in one of the safer, more stable armchairs.  I looked around and wondered why no one in the cafe area had come over to help.  They had all gone back to minding their own business like nothing had happened.

Mum finally returned with the coffees and I had to tell her my tale.  Then kiddo showed up and I had to regale him as well.  I was the only one laughing about it.  I decided that my new chair is going to have a fall arrest on it much to the dislike of my kid who wanted to practice wheelies in it.

Most of the groceries survived intact.  My box of figs were the only things that bought it and had to be chucked out.  The butter and tub of sour cream were smooshed but remarkably the seals were still intact so completely usable.  Woot!  By some miracle I hadn't purchased eggs.  Double woot!  And I didn't have a concussion.  Triple woot!!

The next day I felt all sorts of weird sore spots on my back where I had fallen on various jars, cans and boxes of food.  I'm fully recovered now.  My wonderful chiropractor put me back together again.  I think I had some very mild whiplash from the fall which he fixed.  The sore spots all went away after a few days.

Here is a pic of the coffee and juice bars in the new Whole Foods.  You can see the lovely polished concrete floor and the spectacular new  ceiling.  Not a bad thing to be stuck staring at.  I've seen much worse in doctors' offices.

Friday, September 27, 2013

A Wheelchair! a Wheelchair! My Kingdom for a Wheelchair!

With apologies to the Bard for the lack of iambic pentameter.

Well hubs was to tired to go into Boston on Saturday and then on Sunday I wasn't up for crowds so I was easily talked out of going to the expo.  Instead we settled for trying to go to two local stores.  So he packed me into the car and off we went.  Both were closed because, hey who would want to shop for a wheelchair on the weekend?

So today kid took me back to the place that got the highest ratings on the interwebs.  We walked in to an empty small lobby.  Three power chairs were on display on the left and two chairs and a coffee table on the right with lots of industry magazines in the rack.  I walked into the back area which had a bunch of doors to various offices, a demo or staging area and a receiving/assembly area.  I finally found an office minion and told her I wanted to buy a chair.  She looked really confused; that deer in the headlights confused.  Turns out the sales reps go to hospitals and nursing homes to sell to clients there.  They even travel to private homes. They aren't really set up for walk in customers.  There were no sales reps in the building so she took my name and number and told me that the rep for my town would call me back.  Something tells me that I'm considered small potatoes so I'm not really expecting a call back at all.  I would be shocked if I got one.

My mum is coming to visit next week so I'm going to put off chair shopping until the week after.  Unless I get a phone call.  I need to talk to someone because I don't know much about wheelchairs.  I would like one to fit me properly for a change since I can spend many hours in one if we are out for most of the day.  I do know of another place that seems more walk-in friendly so that might be my next stop but that will depend upon the sales rep.  To once again misquote the Bard, "We wait upon your grace."

Wednesday, September 25, 2013

40 Winks

I've posted before about sleep hacking: Free Range Sleeping
Here is the ebook I referenced: 40 Sleep Hacks: The Geek's Guide to Optimizing Sleep
And now I found this interesting article on how people slept prior to the invention of electricity.  Apparently they had a bifurcated sleep pattern with a period of several hours of waking in between.  So if you are curious read on: Your Ancestors Didn't Sleep Like You
Actually the blog in general is chock full of interesting stuff on sleep:  Slumber Wise

Sunday, September 22, 2013

23 Years

Today is my wedding anniversary.  I've been married for 23 years and known my husband for 29 years.  This is more than half of my lifetime.  Thus, I have been reflecting on our marriage for much of this week.

I came down with CFS/ME in 2010.  One of the HUGE pieces of baggage hubs brought into our relationship was his inability to deal with my getting ill.  He was a great partner until I came down with a cold.  One of our first fights after we got married was over his wanting to go out to a movie because I had a cold and was stuck in bed so I couldn't do anything with him.  I want to say insensitive but that implies cruel intent, it was more like completely clueless.  He literally saw nothing wrong with it.  I was used to being pampered when I was sick.  Talk about a huge disconnect.  He didn't even want to be in the same room with me because he didn't want to get sick himself.  It took a few years to come to a truce over this one.

In 2011, a year into my illness, our marriage was at its breaking point.  The stress of my illness was almost too much for it.  He was so angry about me being ill that a nasty mean streak came out.  I was actually making plans to leave and he desperately wanted to run away.  There was lots and lots of yelling and quite a few things got broken in the kitchen.  Occasionally he grabbed at me.  He never ever hit me but I was scared shitless.  So for my own sanity, my health and my safety, I was actively making plans to get out.

However, that summer he decided to man up and stay with me through the illness.  His attitude changed profoundly.  The mean streak didn't raise its ugly head as often.  Things calmed down.  The yelling stopped.  He found a new job which he loved and our finances stabilized.  Don't ever doubt what a strain finances can put on a marriage.

Over the last two years we have very very slowly been rebuilding our relationship.  It still isn't as good as prior to my getting ill but it is WAY better than it was two years ago.

Last night we went out and had a lovely dinner at a local seafood restaurant that we both like.  We had a nice chat about nothing in particular.  Then went for chocolate shakes on the way home.  Going for ice cream is a tradition that predates our marriage.  We capped off the evening with a science fiction movie that we both like.  Going to see movies is another.  All in all, a really pleasant evening.

I liked that the evening included some of our old traditions.  I liked the fact that we chatted.  When you don't get along with your partner, chatting is very difficult.  I use chatting as a gauge for how we are getting along.  The only thing that went slightly haywire is that instead of going out to see movies we now tend to watch them at home.  This means hubs sprawls out on the couch, gets nice and comfy and promptly falls asleep.  Tonight was no different.  I suppose I should be flattered.  It means he is relaxed and comfortable enough to fall asleep.  When he went to bed I tucked him in, kissed him on the cheek and told him I loved him.  What a difference from two years ago.

Things are shifting in the right direction.  The movement in our relationship seems glacial at times but overall there is progress.  Maybe in another year or so things will be great again.  I'm looking forward to it.

Friday, September 20, 2013

Cue Expo

In a bizarre turn of events, I ended up sitting in a sub shop reading the Boston Herald while waiting for a ride.  I haven't set foot in this shop for many many months maybe even last year.  I never EVER read the Boston Herald (a nasty little paper that is still in circulation due to its small size which makes reading it on the commuter rail easier and the fact that they have extensive sports coverage).  Anyway, I ran across an ad for the Abilities Expo in Boston this weekend.  It is free.  They have a huge exhibitors hall full of vendors selling wheelchairs.  I figure this would be a great opportunity to try a few out from different vendors.

I was so excited about it I kept talking to my son about going.  He has flatly refused to go with me and kept changing the subject because it bores him.  Husband has agreed to take me but is already complaining about parking and driving there.   I don't care.  I would love to take a look around.  I also want to see what other accesibility items are for sale.  Also one of the girls from Push Girls is going to be doing a wheelchair dance exhibition.  Woot!

This expo is traveling around the country.  Boston is the first stop.  Here is the link if you are interested.

Thursday, September 19, 2013

Let's Roll

Both my kid and my husband complain about pushing me around in my wheelchair.  Honestly, I don't blame them.  It is a transport chair with small wheels that get stuck on every little bump and rut in the sidewalk.  And forget about thresholds!  Might as well be trying to roll me over an 8" curb.  We have to get a running start or risk getting horribly stuck in a doorway.  Also, I'm almost 270lbs so not a lightweight by any stretch of the imagination.  Since taking steroids my weight has slowly been creeping up so I'm not sure where I'm going to top out.  If I have something in my pocket or a bulky coat on, the arms grab my legs when I try to stand up and won't let go.  It is like those vids sent in to America's Funniest Videos: chair gets stuck on fat person's ass when they stand up.  *insert rude noise here*  Since the wheels are so small it takes a lot of force to roll me anywhere.  They both struggle with the slightest incline and they are both really strong guys.  So I think it is time to return the loaner and buy me a real wheelchair with normal sized wheels.

So tonight I went shopping on the internet for wheelchairs.  I found they come in a huge variety of sizes and styles.  I also discovered that it is best to go to a shop to get fitted properly for one.  There are so many adjustments on them: seat height, wheel height, seat width, tilt angle, wheel tilt, weight limits, etc.  I found that chairs that support up to 350lbs start in the $1000 price range.  The chair that I really like is over $2000.  Snots!

Turns out I should have bought the darned thing when I had Blue Cross.  They would have paid for it in full.  Now that I have Medicare they will only pay for the most basic item I need to get around the house which would be my walker which I already own.  Double snots!!

Then I checked Craigslist.  There are quite a few wheelchairs listed but most of them are power chairs.  I want a manual chair.  The people selling the chairs don't know anything about them so there are no dimensions, weight limits or even make and model listed.  I have no idea if I would fit in the darned thing or if it could carry my weight safely.  So best to go with new I think.  If I were under 250lbs this wouldn't be a problems since all chairs seem to be rated up to that amount at a minimum.  Triple snots!!!

Why, oh why did I put this off???  Oh that is right.... I thought I wouldn't need one.  I thought I would be walking on my own at this point.  I was hoping to ditch the darned thing and not need one.

Also, hubs and kid strangely don't want to talk about this.  They change the topic if I bring it up.  I think right now they use the crappy chair as an excuse to leave me in the car and if I get a nice chair that is easy to push then they have to deal with me and as my husband put it "your geriatric needs".  Not one of his finer moments.  Yup.  I'm still angry at him for that one.

Oh, and I want to get one before I go on our mini-vaca next month so wheeling me around will be easier.  I would be very happy if I never hear the phrase "you and your geriatric needs" ever again.  And I HATE being left in the car like the family dog!  Just be a nice girl and sit and wait here while the grownups run into the store and do grownup things.  *more rude noises*

This is the one I want.  I can get it in blue or purple.

Wednesday, September 18, 2013

Tuesday, September 17, 2013

Posts and Comments

My computer has never been the same since hubs tried to use Torrent to illegally download movies.  Chrome got hijacked.  It took me two days but I managed to restore most of its functionality and get rid of all the Trojan programs but Blogger has never been the same since.  I still have problems logging in and commenting.  At least I can post again.

If I get onto another computer, I have no problem with Blogger itself.  It is definitely Chrome on this computer that is messed up and I can't get anyone from Google to help me with it.  Their help center redirects me to a user forum when I can't answer their standard multiple choice questions.  I HATE them!  A real company would help out their users!!

I'll probably migrate to Wordpress at some point.  Right now my brain is too addled to figure out new blogging software.  So I'm stuck with Blogger for now with all its quirks.

Exiting the Labyrinth

WOOT I can post again!!  I have had two very frustrating days of not being able to post in Blogger at all.  This is the first time I've managed to get in to the edit page without getting an error message.  It's a miracle!  But I digress..  I'll save my Blogger rant for another post.  I have more important things to write about today.

I'm catching glimpses of the exit of the Labyrinth of Records Collection.  I'm getting close.  I can smell it.

I got a call from my treating CFS doc's secretary and a letter is now in the mail to me.  I haven't received it yet so I have no idea of the content but it has been written.  I await its arrival with much anticipation.  I'm curious what he has to say.  I upset him greatly with my detailed symptom description.  He somehow didn't comprehend the extent of my daily living situation.  Even though I see him several times a year and he knows more about this illness than most of my providers he was still shocked at how disabled I really am and how little I can do.

I had a volley of emails with the world famous CFS doc's assistant and it turns out that due to the restrictions placed on his grant he has to follow the CDC's 2004 definition of CFS which includes the obesity exclusion even though it is dumb as shit (the exclusion/CDC not the doc or the grant).  So I don't get an edited version of his letter but I have to write a disclaimer to attach to his letter and I have to download an up to date version of the CDC's definition of CFS.  More work for me.  Yay.  NOT!

I received a bill from each of the two hospitals that haven't produced my records yet.  Yup, I have to pay for the copies before they will send them to me.  This is now five weeks past the initial contact.  I even looked up HIPAA regulations on this matter and the law states that they have to produce the records within a "reasonable" time period which is 2-3 weeks and no more than 30 days.  If the records are stored off site, then they can take up to 60 days but they have to notify you in writing that this is going to take a while.  With both hospitals, the bills were my first contact with them and those were well over the 30 day limit.  Now that I've paid them for the copies I still have no idea when my records will actually show up.

Like I said I can see the exit in the distance but I'm not quite there yet.  I'm collecting a fresh set of papers on my dining room table.  Just waiting for the stragglers before I can put together the final packet of info for the LTD Ins. Co.  Soon.  Really soon.

Sunday, September 8, 2013

Labyrinth of Records Collections

Warning:  VERY ANGRY RANT to follow but also some semi-useful info for LTD applications at the end of the post (in case you want to skip the rant part)

This past month I've been busy putting together my insurance case.  My LTD is up for its two year review and I have to prove that I can't work in ANY occupation.  The form the insurance company sent looks innocuous enough.  Four pages of questions for my primary doctor and five for me.  Questions like: what meds are you on; what are your symptoms; can you work; etc.  I was fooled by this form the first time.  I answered all the questions in the spaces provided in short succinct fashion.  And got summarily rejected.  I was told that I made everything up.  I had no proof that I was ill.  This was a week before Christmas.  I HATE them!

My appeal cost me over 10K in lawyers fees alone.  Never mind copying and mailing costs and the sheer amount of time I spent putting the case together.  This time I knew better.  I have to mount my case from the start.  Maybe, just maybe I can avoid the lawyer this time around.

Thus, I entered into the Labyrinth of Records Collections.  At the entrance to the maze I had two goals: 1) to obtain letters from each of my providers stating that I did indeed have CFS and that there was no way that I could work and 2) obtain my medical records from each provider and hospital that I had visited during the last three years.

Now I have to mention that I got the letter from LTD Insurance Co. during the first week of August, which, in this country at least, is prime vacation month.  If it wasn't the doctors themselves that were out of town, then their staff were enjoying the beach and cocktails somewhere nice that didn't involve panicked patients and insurance companies.

Add to this mess the fact that I have fairly severe CFS and can only work on this one maybe two hours a day on a good day.  AND, the fact that I ended up in the ER with yet another UTI in the middle of the month.  Put it this way: I was SHOCKED that I got the bulk of the work done and met their deadline of August 31st.

So there I stood at the entrance of the maze on a quest for letters and records from people that were on vacation so that I could put together a 386 page packet of information so that I could prove I couldn't work and keep my disability benefits so I could keep a roof over my head.  Yeah, that.  Eating and living in a house.  That.

First I put together packets for the doctors.  I included their affidavits from my original claim appeal and a short letter describing the information that I wanted in the letter and the list of the diagnosis from my original claim.  I gave four doctors two weeks to write said letters and I gave the form to my primary.  Let the race begin.  Not a single doctor made the deadline.  The first one to produce anything was my shrink who was a day late.  The second was my chiropractor who was two days late.  My primary was out of town so the simple form was three days late.  My world famous CFS doc's letter came after my deadline passed and I had already mailed the packet off to LTD Ins. Co.  And my treating CFS doc never produced a letter at all.  Thanks guys!  At least the ones that did respond all said I couldn't work at all.  Woot!  And they had the correct diagnoses on them.

The only problem is the world famous CFS doc included the old CDC exclusion for obesity.  (They used to claim that fat people couldn't get CFS.  *insert rude noise here*)  This exclusion was removed per CFSAC request at least a year ago because the insurance companies were using it to refuse coverage to fat people for CFS.   Well, DUH!  So now I have to write back to world famous CFS doc and thank him for his letter but could you please edit it and remove the old CDC exclusion and then I get to wait another several weeks for the rewrite.  In the meantime, I'll bug treating CFS doc for his letter.

Next: get my medical records.  HAH!  This game starts with looking up all the contact information on the facilities' websites.  Downloading forms.  Getting the correct addresses.  Writing cover letters.  And mailing packets out to ten different institutions requesting my records.  These were often also chased with faxing the forms multiple times and making phone calls to voicemail recorders where I never heard from anyone.  So many phone calls, faxes and letters later I only have my entire set of records from my primary doc.  And this is mostly because I accumulated this as I went to see him so only needed a few missing visits and tests and I'm buddies with the office manager.  I manage to get my set of records from my treating CFS doc's office only after I called my doc's secretary several times in a row after she kept trying to dump me into the voicemail system of the records department.  This is a department that I had sent two faxes to and left daily voicemail for a week with no return phone calls.  The girl felt so guilty that I had been trying to get my records for three weeks she didn't charge me for the copies.  Small win.  The only other records I got prior to the packet deadline were my SIBO test results.

Once Labor Day came and went, now records are starting to show up, orthopedics and dermatology.  Today I got a letter from the hospital where I went for my UTIs.  They didn't want to send me my records because they didn't have the appropriate information.  They included my original letter and a form for me to fill out.  Now this was a facility that I went to their website and followed their directions.  I wrote a letter that included why I wanted the records, who they were being sent to and the dates of service.  Guess what the form asked for?  Go on!  Guess!  Why I wanted the records, who they were being sent to and the dates of service!!!  Wholly f'ing s**t guys!!!  What the f is wrong with you!?!?!  I need my f'ing records!!!  TWO WEEKS AGO!!!!  Why the f didn't you put the f'ing form on the website for download like other hospitals!?!?!?!?  Why did you make me write a letter with the EXACT same info you want in the form!!!  Good God!  Thank goodness you don't have to put a satellite up in space.  You'd miss the damn rocket launch!  TWO WEEKS late and you are only now asking me to fill out a form.  Holy mother of God!

And don't get me started on the three other facilities that haven't bothered to send me my records at all....

It is only my HOUSE on the line here FOLKS!!  Only my ability to feed, clothe and keep my family warm that we are talking about!!  I want to curse at the top of my lungs!  I don't have enough curse words to express my exasperation with these idiots and nincompoops!

So I have my to-do list for Monday.  I have to request a new letter from my world famous CFS doctor because he hasn't bothered to keep up with the CDC definition of CFS.  I have to fill in my form for the hospital and write a cover letter suggesting that they put the F'ING FORM on their website as a pdf for download.  And then I get to make phone calls asking where the heck my missing files are.  What fun.

I'm almost at the center of the Labyrinth.  If I jump high enough I can see the path.  I have no idea if I'll make it out no matter how high and how hard I jump.  If people don't choose to cooperate, then maybe I'll just have to sic a lawyer on their asses.  If it does come to that, I have NO sympathy for them.  I'm not asking for much and my ability to feed and house my family is at stake.  They are supposed to at least supply my records to me: it is a legal thing.  The letters they can give me the runaround on.  I'm hoping that I hear something soon from LTD Ins. Co. before I spend too much time chasing the malingerers down.

And by the way LTD Ins. Co., I hope you choke on the 386 pages I sent you (with more to come).  That is revenge for denying me coverage the first time around.  Asshats!

Now that I've sort of got my rant out of my system here is the list of documents that I included in the packet to prove that I can't work:

  • List of providers with contact info
  • List of meds and supplements currently taking
  • List of meds tried but had to quit due to side effects or ineffectiveness
  • List of symptoms (I make these every time I see a doc so I had a stack of them covering 3yrs)
  • Daily journal of symptoms and activities (this is also submissible to SSA for disability) I only had a couple of weeks of this.  I'm really bad at keeping a daily journal because I forget about it constantly.
  • Detailed list of daily activities (good, bad and severe days + average number of each type of days per week)
  • Detailed list of capabilities including: lifting, bending, reaching, memory, cognition, walking, sitting, lying down, carrying a conversation in person and on the phone, writing, reading, fall risk, puzzle solving, following directions, etc  Any skill that you need to perform work.  Again I split this up into good, bad and severe days.
  • Detailed job description (no one has a clue what I do from my job title)
  • List of last five jobs (to show what type of jobs I've held: all technical in my case)
  • Detailed list of all training received to perform job (in my case this includes education, safety training, Toastmasters, specialized software, engineering classes, basically everything I could think of)
  • Detailed list of why I can't work (this is a melding of capabilities list and job description list)
  • Letters from docs with diagnosis, statement of work capability and variability of illness
  • Clinical notes (medical records of every visit and test I've had done since the last packet I sent them: don't leave ANYTHING out or they think you are hiding something.  I know this from experience)

Friday, August 23, 2013

CFS and the Quinalone Antibiotics

So I'm going to take a WILD guess here and say that maybe perhaps my CFS improvement has to do specifically the Quinalone class of antibiotics, more specifically Cipro and Levofloxacin.

I am trying to read this article that gets into detail about how this drug class interferes with the CNS.  Of course I don't understand most of it but what pops out at me is that it diddles with the GABA receptor sites.  Now I know that GABA is a problem in CFS/ME.  I just can't remember if it is a shortage or abundance.  Maybe someone can tell me.  I'm too muddled up right now to go hunt it down myself.

In the six days I've been on the Quinalones, I'm already doing better than ten days on Xifaxan.  Yesterday was my last day on the drug so now I'm in the detox phase.  Tomorrow I'll start eating ferments to load up on my probiotics.  I can hardly wait to see how my CFS is doing in a couple of days.  I just might be back to walking around the neighborhood.  WOOT!!!

BTW, my left knee hurts like the Dickens and I've now got a very bad limp.  I'm crossing my fingers that it goes away.  That would be very nice.

Antimicrobial Safety: Focus on Fluoroquinalones
FDA Beefs Up Fluoroquinalone Warning

Tuesday, August 20, 2013

CFS vs My Left Knee

About five years ago, when I was healthy and relearning how to figure skate, I spent my entire practice session doing three turns.  This involves a nasty torquing of the knee.  For some reason my left knee took issue with this and blew up like a balloon.  After that practice session, it was never the same again.  I had multiple cortisone shots into it which didn't last very long so I turned to my awesome acupuncturist, who kept me skating without resorting to surgery.

Step forward five years to January of this year and the raging UTI that put me into the hospital.  But what does this have to do with my left knee you ask?  Bear with me... To cure this nasty infection, I had an IV of levofloxacin and was sent home with Cipro pills.  A week later I was back in the hospital and this time had an IV of Cipro and was sent home with Bactrim pills.  Not only did this get rid of my UTI but I made a huge recovery of function from my then severe CFS symptoms.  This left the docs scratching their heads and me going for pee tests, poop tests and even SIBO tests.  Of which, nothing showed up other than I needed more Bifida in my diet.  Nothing pointed to why the drugs helped my CFS.

Two months after the hospital visits my doc and I decided to give another round of antibiotics a whirl to see what happened.  My CFS symptoms had slowly gotten worse since Christmas so what the heck.  I took ten days worth of levofloxacin in pill form.  Again I had significant improvement of my CFS symptoms.  Due to holidays, doctor vacations and kid going back to work full time (no more taxi service for me) I couldn't get another round of antibiotics after this even though I wanted to try them again to see if I could improve further.

Now, somewhere along this timeline and of course I have no memory of when exactly my left knee started hurting.  It blew up like a balloon and behaved as if I had been ice skating and weight lifting.  I started to ice it daily.  I had to be careful standing up since it occasionally wouldn't bear my weight. It hurt to go up and down stairs.  I occasionally limped.  My chiropractor tried adjusting it which only made it worse.  Again this was another medical mystery, since I had been couch bound due to the UTI and moving even less than normal for me, there was NO reason that my knee would suddenly start hurting so badly.

Then I finally saw my CFS doc and he told me that Cipro and Levo can cause muscle and joint problems in some patients and he didn't want me taking it any more.  So we came up with a plan to try Xifaxan instead, which I did three weeks ago.  The whole thing was a cluster fuck disaster which I'll get into in another post.

Last Friday I came down with another raging UTI.  Now these things take off fast in me due to my compromised immune system thanks to the CFS.  Within 12 hours I go from "gee there is something wrong" to "get me some f'ing pain killers NOW".  So I was back in the ER being pumped full of IV Cipro again.  I'm now on Levofloxacin pills.

Two days ago I found this:

FDA Drug Safety Communication: FDA requires label changes to warn of risk for possibly permanent nerve damage from antibacterial fluoroquinolone drugs taken by mouth or by injection  

Yes, this include Cipro and Levofloxacin along with a few other antibiotics I've never heard of.

So HELLO knee pain.  It is from the drugs.

However, upon reading the release from the FDA I decided to look into both Cipro and Levo more in depth.  It turns out that this class of drugs can affect the central nervous system, brain and/or heart in some individuals.  Could this be the reason my CFS symptoms improved???  These drugs are doing something to my brain, heart or CNS to make me more functional again?  I mean I was swimming for cripes sake!!  I walked several hundred feet with no crash afterwards!  This a few months after being unable to make dinner most days.  To me it was a miracle!

But now I face a decision:  stay on the drugs and risk permanently injuring my left knee or continue to take them so that my CFS improves.  Talk about being stuck between a rock and a hard place.   I can't bring myself to talk to anyone about it and every day that I take one of these pills my knee gets worse.  The pain never really went away since it first started in winter.  Now I'm having to keep it bound to reduce the pain and swelling and so that I can walk on it.  If I permanently injur it I may never skate again which would devastate me.  But I want to get better from CFS.  I can't stand being so sick I can't shower, cook, clean, walk, shop, read...


Friday, August 9, 2013

Interval Training for CFS

Back when I was healthy, I used to do interval training.  This is where you exercise as hard as you possibly can for a fixed amount of time and then drop to a low intensity for the same amount of time.  It makes you feel like you are going to drop dead of a heart attack but it is very effective at increasing lung capacity and cardiac capacity.  I used to do one minute intervals on a rowing machine.

CFS crash recovery reminds me of interval training.  For every 30 minutes of light activity I have to lie down in a quiet shady spot for 30 minutes.  This allows me to get things done without causing my symptoms to worsen.  Activity is cumulative when it comes to crashes.  Unless you allow yourself to return to baseline, it can quickly become a downward spiral.

I was fighting this crash.  Mostly because I was doing so well prior.  I assumed that I would recover in a couple of days and go back to having tons of energy.  I pouted.  I railed.  And yesterday, after some crying, I accepted that this was going to be a prolonged crash and that I needed to start CFS interval training.

Today, each time I got the least bit brain foggy or tired, I went and laid down in a quiet spot.  I never slept but would close my eyes and empty my mind.  I would just shut off for a bit.  After a while my eyes would open and a while later I would get restless and start fussing.  Time to get up again.  So my day went: breakfast, rest, dinner prep, rest, dress, rest, paperwork, rest and so on.  My rhythm turned out to be 20-30mins on and 30 mins off.  Paperwork causing brain fuzz much faster than physical work which I found surprisingly odd.

So, I'm plodding through my LTD paperwork.  I got quite a bit done today.  I had decided not to stress out over it and not to set any goals.  With the intervals, I managed to get out three faxes, two emails and a letter all requesting medical records.  I also managed to fill out four forms which are always extremely hard and taxing for me mentally.  I also made a wonderful crockpot chicken dinner, scrambled eggs and sausage breakfast and managed to get dressed.  WOOT!!

You can't deny that this method works.  I'm slightly fogged tonight but I'm not the headbobbing incoherent mess that I was yesterday or the day before.  So it looks like CFS interval training for me for the foreseeable future.  I would love to say this crash will end soon but there is just no way to predict things with this illness and this is definitely a prolonged crash.

BTW, today is my last day on Xifaxin, an antibiotic.  Tomorrow I load up on probiotics.  I'll probably start my day with a large glass of clay to help flush stuff out.  By tomorrow night, I'll be eating fermented pickles, beets, cabbage, and maybe some yogurt, kefir, and kombucha.  One of the food bloggers I follow call kraut, kefir and kombucha the trifecta of ferments.  She believes they will cure anything.  Here's hoping!!

Wednesday, August 7, 2013

Day 11

Yup.  I'm still fucked up.  I'm not helping myself though.  As soon as I get a good day I think I'm all set and overdo it.  Turns out this is one of those lllloooonnnggg recovery crashes.  I have to be careful everyday or risk getting stuck in bed the next day.  I slept most of Sunday.

Now to add fuel to the fire, I got notice from my private LTD that my case is up for review and I have to get all my records to them by the end of the month.  This includes all medical notes, all test results, letters from my treating physicians, names, addresses, diagnoses, prognoses, why I can't work yada yada yada.  I'm too messed up to read or think straight right now and I need to be able to put together a HUGE packet of information since this will cover the last three years.  I need to get letters out to docs requesting they write letters; I have to get requests out to clinics and hospitals for test records; I HAVE to be organized.  This is such a nightmare at this point.  I'm now kicking myself for going swimming the other week.  I could handle this if my brain still worked but it doesn't.  At least I know better than to just fill out the dinky form they sent me.  What I have to send them is more like my medical tome.

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.