Wednesday, June 29, 2011

Sick Humor: Not Far Off

XKCD: Connoisseur

"Our brains just have one scale, and we resize our experiences to fit."

I'm not quite at the point of evaluating photos of people eating sandwiches but I did find an ant annoying a dragon fly fascinating the other day.  CFS definitely reframes your world.

Tuesday, June 28, 2011

Couple's Therapy

It has been a while.  I've been sicker than usual.  More tired and very very dizzy.  But I do have some good news.  Hubby has made some monumental decisions:  he has decided that he doesn't want to be Angry Man and he has decided that it would be wrong to leave me.  I guess he figured out that he loves me.  It is the situation that he hates.  In his words, "my parents raised me better than that."

So, things have been going better around here.  There is less yelling and fewer broken kitchen items.  He does still loose it once in a while but mostly it has been pleasant again.  This has all coincided with his starting a new job.  It turns out he is enjoying himself; he is working with nice guys; and it is a slower pace than he is used to.  Between these and the financial relief the income will bring things have been quite nice here.

We are going to couple's therapy.  We have only made it to two sessions so far.  We agreed to check in with each other once a day so he doesn't have any nasty surprises.  I tend not to talk about being sick with anyone.  No one wants to hear the laundry list of weird symptoms I experience on a daily basis.  Occasionally I do unload on my poor Mom and I'm forever grateful to her for that.  But my not talking about it has lead to some unpleasant surprises for my poor hubby.  For instance, I figured out that my afternoon mood swing is probably blood sugar related.  Sometimes I have a deadly combination of a CFS crash and a blood sugar crash coinciding around 5pm.  This makes me cranky and very very short tempered.  This is when I tend to yell and throw things.  He had noticed the mood swings but never noticed that they always occurred around 5pm or that they were probably food related.  So now I try to eat something protein like at 3pm and he calls me around the same time to check up on me.  That way he doesn't walk into cranky wife from CFS hell when he gets home.  He had no idea this was illness related.  So we have made some progress thanks to the couple's therapist.  I like the guy a lot.  I wish we could go more often.  Maybe once we settle into the new work routine we'll make it over there more often.

Now if only my CFS symptoms would ease up I would be a happy woman.

Monday, June 27, 2011

Dr. Jekyll and Mr. Hyde

I am very honored.  Some of my blog has been quoted in Chronic Marriage with some excellent suggestions.  So if you are living with Dr. Jekyll and Mr. Hyde as I am head on over for some great advice.


I have heard from several people that they have been unable to leave comments.  Apparently it is a known issue with Blogger and is fairly complicated since they still haven't fixed it and it has been months now. 

BTW, I've had issues myself both with logging in to my own account and also leaving comments on other people's blogs.  The only advice I've found is to upgrade your browser and uncheck the 'remember me' box.  I found Google Chrome to work better than Internet Explorer but I'm running older versions of IE.

My advice is to upgrade and try try again.  It will work again eventually.  I do miss your comments though.

Addendum:  I have the least problems when logged into Google Chrome with my gmail account.   Right now I'm logged into Blogger with my earthlink account while useing an old version of IE and I can't comment on my own post.

Wednesday, June 22, 2011

Dear Mr. Sleep Dentist,

Dear Mr. Sleep Dentist,

You do great work.  I love the dental appliance you have made for me so that I can sleep without snoring.  I've been seeing you for four years now and am about to get my third appliance since I refuse to sleep without it. 

Before I see you I very carefully floss, brush my teeth and eat peppermints so that my mouth is clean and smells great before you have to work in there. 

Please please please could you at least eat a mint before working on me?  Honestly!  Your breath smells like dog crap.  I'm not kidding.  It is seriously nasty.  You apparently like really strong coffee and it makes your breath really stink and then you don't wear a mask while working on me.  Your stinky breath oozes right into my face.

I love you to bits and you do great work but OMG your breath could peel paint off the wall.  As a service to your customers please go to Costco and get a large tin of mints.  PLEASE!!  I'm begging you!

Your Patient


Back in March my right arm didn't work very well.  I knew what it was because I had the same problem a couple of years ago after falling on the ice.  I went to my awesome ortho guy and got a cortisone shot in my shoulder.  The calcium deposit in my shoulder joint had made a reappearance which had inflamed all the connective tissues in the joint including the rotator cuff tendons.  Once rotator cuff tendinitis sets in it is almost impossible to use the arm.  Hence the shot.

Now, I've lost count but I've had about a half dozen of these shots in various joints due to skating injuries.  This was the first one I've had since contracting CFS.  I had an interesting reaction to the shot; my CFS symptoms lessened.  At first I thought it was all the vitamins I had started but when the steroid wore off my symptoms worsened. 

While I was in steroid bliss I started driving again, taking short walks and cooking!!  I was so happy!  Now they have worn off I've had nothing but setbacks.  I'm doing terrible right now.  If I do anything I crash.  This week has been particularly bad.  I haven't slept well all week and I'm getting really wanky from it.  I've had to use the wheelchair for even short distances.  Hubby has had to help me walk around the house several times.  It has been bad.

I went and saw my holistic doc today.  I meant to get back there sooner but between the insurance crap, the Diet From Hell crash, and the specialist visits I just never made it back there.  This is the doc that diagnosed my CFS and regularly treats CFS patients.

Now I've told my regular doc, my rheumatologist and a pain specialist about the steroid miracle and no one wanted to put me on low dose prednisone even though my ortho doc recommended it for me.  Today I told my holistic doc and he said it was a great idea.  However he uses hydrocortisone instead of prednisone.  I guess it is closer to being bioidentical.  He is having me do another saliva cortisol test and I'm doing my six month fasting blood work next week so with some short term med/supplement adjustments I'm doing the tests and then starting low dose hydrocortisone. 

I'm very excited.  If this works anything like the shot my life is going to get so much better.   I'll be able to get off the couch.  I won't need people to help me walk around or hubby to help me get out of the shower.  I'll sleep better and more normal hours.  I may even start driving again!! 

Thursday, June 16, 2011

Sick Humor: My Illness Narative

Ah the stories we tell ourselves.  They don't always make sense.....

In a galaxy far far away, a long time ago there was a Fairy Princess who worked in a garage as an auto mechanic.  One day as she stood under a car trying to wrench out a piece of the front end a sharp stabbing pain hit her in the side of the head.  Something not quite like having an ice pick driven into her skull just above her right ear.  Thus began 30 years of atypical migraines.  She believed that it was the spirit of her long dead evil father come back to exact his revenge on her for not being a perfect daughter.

A few years later, the Fairy Princess ran away from the land of Sears Autocenter and ended up taken in by the kindly engineers at Coulter Scientific Corporation where she built lasers and was happy.  There the elders taught her soldering and optical mounting and computer programming and she became wise.  But suddenly, out of the blue, an evil spell was cast upon her and she suddenly felt like she was 60 years old instead of 25.  She was stiff in the mornings and her joints hurt.  She didn't know what was wrong but she found hot showers soothing and took refuge in an aerobics class for seniors at the local YMCA.

As the Fairy Princess grew up she went from doctor to doctor telling them that she was tired and sore and stiff in the mornings.  The doctors did blood tests and MRIs and sleep studies only to find nothing.  She was turned away with the admonition to "just loose some weight and you'll feel better".  Occasionally a doctor would take pity on her and send her to physical therapy for a while until the evil insurance company cut her off telling everyone that she should be cured by now.  And she crawled off back to the gym as that seemed to be the only way she could get some relief from the stiffness and pain.  If she stopped moving, her body turned into that of a 90 year old lady, gnarled and cramped and limping in pain.  It wasn't until many many years later a Kindly Rheumatologist finally solved the mystery and revealed to the Fairy Princess that she had Fibromyalgia.   Although the Kindly Rheumatologist was wise enough to solve the mystery that had plagued the Fairy Princess for decades she did not posses the magic powers to release the Fairy Princess from the grips of the evil spell.

Eventually, the Fairy Princess was all grown up, had married her Prince Charming and even had a Little Prince of her own.  Life was good, work was good and she had discovered the age old fairy princess tradition of figure skating.  On the ice she whirled and twirled and had a wonderful time.  She skated for several years with the other fairy princesses in their sparkly outfits and they all passed tests and won medals for being the best fairy princess skaters.   She was very happy.

But then a third evil spell was cast upon her.  She and her son, the Little Prince, came down with a terrible virus.  They both had fevers and very very sore throats.  In a stroke of luck the Little Prince recovered but it was too late for the Fairy Princess.  She had been caught and swept away by Mr. ME.  A horrible evil man that tried to steal the Fairy Princess away from her Prince Charming and Little Prince.  He made her very very ill.  Sometimes she couldn't walk or talk or even think.  She could no longer skate with the other fairy princesses in their sparkly outfits.  She could no longer roam the lands with her Prince Charming or play with her Little Prince.  Evil Mr. ME locked her up in the tower of her own castle where she couldn't see anyone or go anywhere.  When she cried out to the doctors and insurance companies for help and told them she was locked in a tower, the doctors being ignorant and the insurance companies being evil themselves, they told her there was nothing wrong with her, Mr. ME was a figment of her imagination and if she just thought happy thoughts the door would magically unlock and she would be free.  So no one came to her rescue and she was very very sad.

Then a Fairy Godmother appeared and declared that she was working on a cure for a new virus called XMRV.  She would have a treatment within a year.  So now the Fairy Princess is waiting in her castle.   Her hair is growing long like Rapunzel as she awaits rescue from being trapped in the tower by evil Mr. ME.  She longs to rejoin her Prince Charming and Little Prince on their adventures in the wide wide world.

Sunday, June 12, 2011

The Chracter of CFS

Be more concerned with your character than your reputation, because your character is what you really are, while your reputation is merely what others think you are.

~John Wooden

In an earlier post I wrote that I felt like I had married into a dysfunctional family.  CFSers are yelling at each other demanding that we see things their way for whatever reason.  If we don't buy into their belief system we get yelled at.  Is this anyway to treat each other?  I don't like it.  It isn't helpful to me.  It makes me want to withdraw and not post here or on Facebook because I don't want to incur someone's wrath.  The stress makes me feel worse than I already do and I can ill afford that.

We each have our own beliefs surrounding our illnesses.   How we became ill.  What made us sicker.  What made us better.  I've heard everything from "drink raw milk" to "take antivirals" to "do nothing".  People are desperate. 

Because our illness beliefs aren't the same we also don't believe in the same cures.  Not having a scientific understanding of our illness doesn't help.  We don't know for reals what is making us this sick.  A virus?  A genetic defect?  Something we haven't discovered yet?  So everyone is left guessing including myself.  We are guessing at the cause, the how, the why.  We can't even settle on a name.  There is no consensus even among the experts so how can we, the laypeople, presume to know more.  I'm smart.  I used to work at MIT but I don't have a degree in virology.

Instead what I am finding is that a doctor has a theory; they put everything they have into that theory, research dollars and reputation and ego; they write papers/books; the sick, desperate for answers, read everything.  This is understandable.  I do it myself.   However, here is the kicker, each patient decides at some point which professional is correct.  They then join that doctor's camp and proceed to shoot arrows at everyone else.  Professional or patient it doesn't matter if you aren't in the same camp you get shot at.

I understand why this happens.  People are angry.  People have been abandoned by the medical community and family alike.  I get it.  However, I choose not to participate in this shooting match.  I have my own beliefs.  I'll continue to write about them here but I am probably going to continue to withdraw from Facebook CFS related stuff.  My blog isn't widely read and my readers seem to be the kinder sort.  Luckily I'm not part of the Twitterverse yet so I haven't become embroiled in any of those battles.   I'm too sick to participate in any of the negative stuff.

I am making a conscious decision not to shoot arrows.  I don't want to live a negative life.  I don't want to live a life arguing to defend anyone's camp.  It is too early in the scientific game to choose sides yet.   We don't have enough answers.  There is an old saying "you catch more flys with honey than vinegar".  I want to live a positive life.  I think we can do far more good by being kind and considerate and this applies to everyone, patients and professionals and even journalists.  I don't want to come across as angry pissed off person demanding stuff.  I can refuse but I can refuse in a polite respectful way.  This keeps things cordial and open for further negotiations.

So I am left with questions:
What do I want to do with my days?
How do I want to interact with the CFS world?
How much do I want to interact with the CFS world?
How much and what type of advocacy do I wish to participate in?

Guiding principles:
Do no harm: This includes patients, doctors, scientists and journalists.
Do not spread rumors.
Do not post anything that is unsubstantiated.  (backed up with verifiable medical evidence)
Clearly list when something is my opinion rather than fact.
Clearly state when I'm guessing.
Do not participate in pissing contests.
Do not post inflammatory articles or comments.

If you are curious, I'm currently in Dr. Bell's camp.  I believe CFS has a viral etiology.  I believe that virology is in its infancy as a science.  I believe most of what we know about viruses has come directly from the world of AIDS research which may not be applicable to CFS.  Due to my minirecovery while on steroids I believe there is a strong inflammatory component to my symptoms.  This would also explain that anything we do to reduce inflammation makes us feel a tad better.  I am guessing that our cure may include both an anti-inflammatory and an antiviral or antibacterial treatment.  My belief right now is that I have caught a virus and it is causing inflammation in my brain and/or spine which is resulting in my symptoms.   However, without any science to back me up I could be totally wrong. 

I also believe that if I live a joyful life I have a better shot at recovery.  I also refuse to become a bitter old crankpot.  Life has too much joy in it.  There is too much good in the world for that.  So, I'm going to try to lead a more positive life.

Friday, June 10, 2011



Just finished The Help.  I couldn't put this down and actually gave myself a headache reading it.  I love the way it is written.  I love the story.  The only criticism I have is that the ending was too nice.  Considering the political reality of the south in the 60's I was expecting much more serious consequences for the action of the characters.

The Complete Photo Guide to Crochet by Margaret Hubert.
Since I am cognitively challenged more often than not I find written instructions hard to follow.  I've been trying to learn crochet to combat boredom but have been having trouble following the instruction books.  Because this one has large photos it is easy for me to learn from.  It also shows lots and lots of different stitches.  The format is so easy to follow.  After teaching the basic stitches it has large photos of sample squares followed by the instruction on which stitches to use to replicate it.  While there are some patterns in the book the majority of the book are the sample squares.  They start easy and get progressively harder until you are making 3D flowers.  Right now I have a copy from the library but I like it so much I'm probably going to get my own copy.


Ladies in Lavender
I found this hidden gem on Netflix.  How can you go wrong with a Judi Dench movie?  Two older women who are sisters find a young man washed up on shore near their house.  They decide to nurse him back to health.  An unexpected plot twist made this a very enjoyable movie.  I highly recommend it.

X-Men First Class
Yes, I managed to get to the cinema with my husband!!  This is the first time we have gone since last year and the first time I went in my wheelchair.  Yay!!  We had a great time and loved the movie.

Jane Eyre
This is one of my favorite stories.  Second only to Pride and Prejudice.  I found an old version with William Hurt as Mr. Rochester on Netflix.  Mum and I watched it.  Much of the story had been chopped out to make it two hours long.  I also wasn't too happy with William Hurt's interpretation of the character.  That said we did like the movie.  My favorite is still the latest BBC version which is three hours long.  That one has kept most of the story intact and I love the character interpretations.  Mum had seen an older version with Orson Wells.  She couldn't remember much of it since it was so long ago.  I'm looking forward to seeing the new one that just came out in the cinema.

Ethan Frome
I had never read this classic book.  It was probably the wrong movie for me to watch considering my own situation but I couldn't resist a movie with Liam Neeson in it.  Great movie even though it is a bit dark.  I don't want to reveal too much of the plot just in case you haven't seen it/read it before.  Lets just say it is about what happens to a marriage when the wife become chronically ill and the husband can't deal.  The movie itself is well done and well acted.  Just be prepared for the darker nature of the movie.

Practical Magic
Great movie.  Great cast.  How can you go wrong with Nicole Kidman, Sandra Bullock, Aidan Quinn and Stockard Channing?  This is a chick flick and my Mum and sister enjoyed it as much as I did.

Dangerous Beauty
Not a kids movie.  Full frontal nudity and adult story line.   That said it is an excellent movie.  Great story and great acting.  A woman in Venice confronted with the choice of an arranged marriage, exile in a convent or becoming a courtesan.  This is based on a true story.

Falling For Grace
An okay chick flick love story.  Standard mistaken identity Cinderella story.  No surprises.

Death at a Funeral
LOVE the English version with Mathew Macfadyen (Pride and Prejudice fame)!  This is dry British humor to the max.  I had to rent it again so that my Mum could see it and we were both snickering through the whole thing.

Toy Story 3
Nice family movie.  Fairly predictable plot.  I think I am most fascinated by the animation itself.  I am continually amazed by the detail in the animation.  It is just gorgeous.  Being raised on Disney animation I am just blown away with the details that can be done in the digital realm.

The Imaginarium of Doctor Parnassus
I finally watched this again.  A great Terry Gilliam movie and Heath Ledger's last movie.  The first time I watched it I had severe brain fog and got totally lost and couldn't follow the plot.  This time I thoroughly enjoyed it.  Hubby watched this time around and he loved it as well.  Strange plot.  Great acting.  Love the costumes.


TV so bad you just have to watch it:  Tekwars.  OMG, this is horrible.  Probably some of the worst TV I've ever seen.  This is based on the equally horrible books written by William Shatner (Star Trek's Captain Kirk).  Of course he stars in the series.  I watched two episodes one night at two in the morning when I was bored out of my mind.

Borderline TV:  Beauty and the Beast.  I still can't make up my mind on this one.  I saw several episodes when it first aired in the 80's and found it oddly fascinating despite the fact that it is marginal TV at best.  I think it is probably one of my guilty pleasures.  Odd story line.  Odd characters.  Standard plots.  Dated costumes.  Something fun to watch if you are bored.

More Borderline TV: The Jeff Dunham Show.  I love his stand up routine.  He is a gifted ventriloquist and has several Comedy Central specials posted on Netflix.  I laughed my socks off during his specials.  The TV shows don't seem to have the same effect on me.  Not sure if it was due to my mood at the time or the fact that the material seems to run along the same lines and once you've seen several of his shows it all seems to be similar.

Great TV:  I've watched all of the episodes of Dresden Files (a warlock series), Glee, BBC's new Sherlock series and Eureka (a witty light hearted SF series) twice.  I'm still working on X-Files, Farscape, Dr. Who, Merlin, The Scarlet Pimpernel and Spongebob.  Do you see a trend here?  Can you tell I'm an SF junkie?


I don't have words for how I'm feeling.  I guess the best description would be waffling.  One day I'm ready to give up on my marriage, the next I think everything will be fine.  One day I've got some energy and think I'm going to beat this, the next I'm crashed and thinking that I'm going to be sick forever.  One day I'm happy, the next sad.  

Hence I really haven't been able to write.  Things are in flux.  Everything is in flux.  I have no pearls of wisdom.  Instead I feel adrift tossed about by events beyond my control. 

I haven't even been able to see my shrink because she works out of a second floor office with no elevator.  I've been so crashed these past few weeks I can't make it up the stairs.

I need to rest to get better.  If I don't do anything around the house my husband gets mad.  If I push myself to get dinner on the table, I get tired, then cranky, then snippy and then my husband gets ticked off with me.  If I lie down a lot he gets mad.  I'm stuck between a rock and a hard place.

I can't control my illness.  I can't control my recovery.  I can't control my marriage.  I can't control my finances.  I can't control my medical care.

I am so angry.  Angry at my body for betraying me.  Angry at my insurance company for betraying me.  Angry at my husband for betraying me.  Angry at various doctors for betraying me.

What do I have left?  Do I have the strength to survive this?  Things need to change.  Something needs to change but what?

Sunday, June 5, 2011

Incy Wincy Spider

This is now the forth pain med that I've tried.  This latest one is Lyrica.  Pain wise it was great.  It took about three days but the pain was seriously reduced to very low level or gone completely.  Yay!  The bad news?  Horrible insomnia and dizzy spells.  After my very first dose I was awake for 25 hours straight.  I usually sleep at least 9 hours per 24 hour cycle.  That first night I wasn't sure if it was sugar, an adrenaline surge or caffeine so I stayed on the med.  I slept maybe 4-6 hours tops each night for the following week.  I was exhausted but when I lay down I just could not sleep.  All my old tricks didn't work; listening to the radio, concentrating on my breath, nothing.  Of course this was happening at the same time as my husband's terrible announcement so I wasn't sure if the insomnia was due to the pills or the heartbreak.  I stayed on the meds to see what happened since I didn't know what was going on.  A week later I've decided to stop the meds so I didn't have any today.  I was beginning to suspect that the meds were making my CFS much worse.  So today for the first time in a week I've had a clear head.  I've done lots of things today and I was surprised I wasn't quickly brought to my knees like yesterday.  Instead I've had a great day.  However, a few hours ago the bugs started crawling all over my skin.  Many of them biting me.  Little ones.  Sometimes it goes away but often I feel like I'm rolling around in a bed of needles.  It is rather like having a diffuse case of pins and needles over my entire body.  Lots and lots of little pricklies.  Of course there is nothing there.  Apparently this is a lovely undocumented withdrawal symptom of Lyrica.  I wonder how long this is going to last???  Poo.  I just can't win.

"Should I Stay of Should I Go Now?"

I had a revelation today.  During my son's graduation ceremony today at his high school, my husband came up to me and squatted down next to my wheelchair to share a story with me.  Without thinking I ran my hand over his hair and down his arm.  I'm still in love with this guy.  He can be very nice.  He can be very sweet.  I married him because of this.  This is why I find his behaviour so baffling.  I've known this guy just shy of 25 years.  That is a long time.  The meanness, the temper tantrums, the spitefulness is all new.  I've never seen this in him before.  Living with someone for 25 years means this isn't behaviour that has been hidden away.  It is brand spanking new.  It is why I've been blindsided with it.  I so didn't see this coming.  It also makes the whole idea of divorce so messy.  If he was always nasty this would be a no brainer.  I would up and leave in a heartbeat.  But he swings hot and cold.  One day he is super nice to me; takes good care of me and even gives me hugs.  The next day he is slamming doors and telling me he wants out.  I am so very confused.  The messages are so mixed.  I just don't know what to do other than to drag his butt back to couple's therapy and try and wait this out some more.

Wednesday, June 1, 2011

In Sickness and In Health

Yeah.  Right.  Big fat lie.  Twenty years ago my husband and I made a solemn vow before God and the Catholic Church that we would stay married until death, through the good and the bad.  Well it looks like that only applied to me.  When he went through bad times I stayed by him.  When he lost his Mum I was there.  I was there for the 20 year long roller coaster of a ride called his career.  I kept the family afloat and provided health insurance and steady income for us even though  I gave up my career so that he could pursue his.  Now he is threatening to leave if I don't get better soon.  He has decided that "I have only one more year left in me" and that "I can only take so much" and "I want to travel, bungee jump and do stuff."  Of course his now famous lines are "This is no fun for me" and "This is punishing the whole family."

So the question I keep asking myself is do I wait out the year and see what happens or just turf him out now?  The big reason I don't want to turf him out besides chucking a 20 year marriage in the trash is that I'm seriously scared that a divorce and move will make me sicker.  I don't want CFS to take up permanent residence in my body.  I have a good chance of beating this if I spend the year blissfully ignorant of the impending doom.

We vowed when we got married that we would go to counseling and try to work things out prior to ditching everything.  What happened to those promises?  What happened to "in sickness and in health"?  How this all go so wrong so fast?