Monday, January 31, 2011

A Bad Day

Good God I hate coming off psychotropic meds.  The sunburn has gone and my regular aches and pains have returned with a vengeance.  But OMG am I ever in a foul mood.  Usually I have a reason that I'm in a dark mood but not this time.  I'm having all my regular thought patterns but I'm depressed.  It has got to be a chemical reaction to coming off the meds. 

I did find out that Cymbalta is chemically different than the generic crap the insurance company would pay for.  I also discovered that they will supply 30 days worth of pills for free and it comes in a much lower dose than the generic stuff I took.  So I'm going to give it another whirl.  I downloaded the coupon off their website and I'm going to give the doc a call on Monday.  I'm going to insist on the lowest does they have and then cut the pills in half.  The fact that all the joint pain and nausea went away and I was in a great mood yesterday makes me want to try again.  I like it when my body doesn't hurt.

Sunday, January 30, 2011

A Good Day

The drug is still in my system which means that my arms still feel burned.  However, I spent the day with no pain and no nausea.  I also got up at 9am which is the first time in months and had decent energy levels today again the first time in months.  So despite the "sunburn" I had a good day.  Things I got to do today:
  • Made a kickass omelet with Gruyere, pecorino and Parmesan cheese
  • Cleaned up my sewing area
  • Hemmed a curtain (first time I've sewn since becoming ill)
  • Threw together a crock pot dinner with the help of my son
  • Helped him do the dishes after dinner
  • Got to watch the figure skating national competition on TV
  • Did some internet surfing and blog reading
I did have a minor crash and had to lie on the couch not moving for about 3 hours but I didn't have to sleep.  How cool is that??  I'm dreading the pain coming back and as the sunburn diminishes I'm getting twingy again so I expect to be hurting by tomorrow.  It is amazing what pain does to one's mood.  I am so despondent and grumpy when I'm in pain.  Give me one pain free day and I think I can actually conquer this illness.  It would be nice if that turned out to be true.

Saturday, January 29, 2011


I had my second dose today.  I've been in bed all day with muscle weakness, sleepiness and severe brain fog.  Now I feel like I have sunburn particularly around the knees and forearms.  Even my clothes are irritating my skin.  I truly don't know if I should take another dose tomorrow or not.  I can't think clearly enough to read all the drug precautions on the websites.  I'll have to have hubby check it out tomorrow.  Maybe I'll have him call the doc before I take another one.  In the meantime I'm terribly uncomfortable.

I just looked it up and somnolence (23%) and parasthesia (3%) are known side effects of the drug the pharmacy actually gave me.  Of course my insurance wouldn't cover actual Cymbalta so I got the generic of a substitute drug.  Now I'm wondering if I would have these problems if they had let me have the Cymbalta in the first place.

I did make it to Lahey for the thyroid ultrasound before I crashed.  Truthfully I am nervous about it.   She took too long.  Lingered in certain spots too long.  Took too many pictures.  And kept measuring things.  Not good.  Very not good.  Now my throat is bothering me.  It feels slightly swollen and dinner irritated it when I swallowed even if I chewed well.  I don't know if they are going to contact me ahead of time or if this is going to be a very long week until I see my endo doc to get the results.

Friday, January 28, 2011

A Random Walk

Not much to say today on any single topic so I'm just going to ramble a bit instead.  I've being going through an IBS bout this week which has just made me miserable.  Nothing like being tired, have all my joints hurt and then my stomach starts to bother me as well.  Yuck.  I did manage to eat an adult sized meal today for the first time in three days so that is an improvement and the nausea subsided yesterday.  Although it continues to make a fleeting appearance now and again for no reason whatsoever. 

I have noticed that I have more energy if I can eat the correct proportion of carbs, protein and veg/fruit.  So anytime my digestive tract goes on the fritz I get even more tired and achy than usual.  Add to that the nausea where I can't drink then I get dehydrated to boot.  Bad news all around.  At least I'm doing better.  It is slowly resolving itself on its own. 

I did go to the doc today for my monthly check in.  He has put me on Cymbalta for the FM.  I was just reading about it and the pain relief typically doesn't kick in until 6-12 weeks into the course of treatment.  UGH.  I was hoping for something more instant.  I need painkillers like NOW!  Instead I have to wait 2-3 months. 

He also gave me a sleep med prescription but we aren't going to start that until we figure out if I am having any side effects from the Cymbalta first.  I'm kind of excited about the meds.  I'm hoping some combination will help me feel better.  The FM is causing all sorts of sleep issues for me lately.  I'm always nervous about side effects but he started me out on very low doses of everything so I might be okay.

He is letting my endo doc put together a team over at Lahey which is awesome.  He might be a bit slow to treat but he does have his good qualities such as a reasonable sized ego which can be hard to find in a doc.  He is going to talk with her tomorrow so I should have a neuro consult and brain MRI soon.

I'm generally grumpy.  I've felt crappy most of this week.  I'm bored.  I've been stuck in the house again for most of the week. 

I really really wish I could go out and play in the snow.  The closest I can come is riding shotgun when hubby goes out plowing.  I love just riding around with him and looking at all the scenery.  We talk about random stuff and go have a meal when we're done.  My job is to swing the passenger mirror out of the way so he doesn't rip it off the truck when he plows close to a building.  I can handle that.  I'm usually pretty beat by the time we get back and I'm not even the one driving!  

I am enjoying the snow more than usual this year, mostly because I don't have to shovel or drive to work in it.  It makes it so much more enjoyable and I loved my little walk to the end of my street last night.  That was just magic.

Thursday, January 27, 2011

The Blizzard

I went for a walk at midnight.
So that I could listen
to the trees sing in the wind.

I went for a walk at midnight.
So that I could hear
the snow flakes rattle against my coat.

I went for a walk at midnight.
To feel the cold bite into my legs
while the scent of snow delights my nose.

I went for a walk at midnight.
So that I could pretend that I am well.
At least until the edge of my garden.

Wednesday, January 26, 2011

Mr & Mrs Perfect

I am a perfectionist at heart.  It is buried so deep into my soul I've tried (and failed) for many years to eradicate it.  I use the Buddhist idea of everything is perfect as it is and there is always room to strive for perfection.  I think the wisdom comes in knowing when to back off.

I remember years ago going to visit Mr & Mrs Perfect.  They were old family friends of my husband.  They were rich and had a big fancy house.  I come from a blue collar background so this was one of my first social visits to someone from a higher class than me.  I had come with a hostess gift of a plant out of my garden that I had grown myself.  She said she loved it and then asked my why plants just suddenly die for no reason that she could fathom.  I looked at my plant and knew that my gift was doomed.

We went to sit out by the pool which apparently was more for show than use since it was a bit dirty.  Not that I care.  While I'm a perfectionist myself I do understand that things take time and keeping a pool spotless isn't on the top of most people's list of things to do.  So we sat in the poolside chairs with our drinks and expected Mrs Perfect to sit down and join us for a chat.  Instead she must have noticed that things weren't perfect out here.  She jumped up and turned the pool cleaner on.  Then grabbed some rubber gloves from out of nowhere and the garden hose and stretched it across the pool and commenced scrubbing the poolside bar which we weren't using.  The dirt must have embarrassed her.  She got so engrossed in her cleaning tirade that she didn't notice that the hose had stretched across our laps and the two of us were forced to defend ourselves against its onslaught.  She must have felt the hose bouncing around since she just as abruptly stopped cleaning and apologized profusely. 

We then went up to the deck for the BBQ dinner.  Now my family doesn't eat cows or hotdogs and here we had beef hotdogs with peppers and onions.  So as polite guests we each ate one and vowed to stop in at a diner on the way home.  My son who loved hotdogs ate several which I knew was a bad idea since he was used to eating pork ones not beef.  But it is difficult to explain this under your breath to a six year old.

After we finished dinner she took us on a tour of the house which was lovely.  She made great presentation of the antique and art items in the house.  She was very proud of them and they were very neat.  I felt so out of place there.  Everything was perfect.  Everything was clean and in its place.  They even had a gorgeous very expensive piano that no one knew how to play.  I started to wonder how much of this stuff was to show how perfect they were.  Did they do anything?  Did they themselves paint?  Or just purchase art?  Did they garden?  Or just hire someone?  Why do they have a top of the line piano if no one in the house plays?  The more time I spent there the more it seemed to me that they had purchased their perfect life.   We had nothing in common with them.  We had no places where our lives intersected that allowed us to carry on a conversation.  It was such an odd experience I'm still baffled by it and morbidly fascinated with it. 

And of course the crowning glory of the day was when my son threw up all over the Italian leather couch from eating all those beef hotdogs.  Mr Perfect nearly jumped out of his skin.  He had no idea what to do.  He had no idea how to handle things.  He looked at my son like he had grown three heads.  I dare say he never took care of his own kids when they were ill.  Needless to say we left shortly after that incident and we've never visited with them again. 

On the ride home both my husband and I were saying that we would never become like that.  But to this day I wonder what it was that I disliked so much?  What made me so uncomfortable there?  The house was lovely.  They were nice people but something was off.  Lack of connection to this planet?  Everything being purchased for show?  The requirement that everything be perfect?  That little kids don't throw up?  That you have to understand plants to take care of them? 

While I have a perfectionist streak running through me down to the bone, I don't want to be that perfect.  I don't want my house to look like something out of Architectural Digest.  I want it to look lived in.  Slightly messy.  I want to not care when someone is ill in my house.  I want them to know that it is okay and I care more about them than our furniture. 

Of course being chronically ill I have had to take imperfectionism one step further.  I have to not care that the dishes aren't done when someone comes over to visit.  I have to not care that I'm still in my pjs and not showered when hubby comes in the door with a friend he wants me to meet.  I am ill.  Take me as I am.  While I might be a perfectionist, I'm not perfect.

Sunday, January 23, 2011

The Story of the Pill

I was in a lot of pain yesterday.  My hands, forearms and elbows were tied for first place with my knees a close second.  My hips and back were a distant third and forth respectively.  I also haven't been sleeping well for several weeks now due to the steady increase in my pain levels.  I'm now averaging 6 hours with the pain forcing me out of bed in the morning.

I had some percocet left over from when I twisted my ankle.  I think I took one or two half pills back then so I still have most of the bottle left over.  I hate taking pills.  I particularly hate taking the newer meds because I always react to them strangely.  I've had all sorts of side effects from various meds docs have tried to foist off on me over the years.

So last night in all my pain and tiredness I decided that I was going to try taking a percocet and see what happens. I had nothing to do today and no where to be so it was perfect timing for an experiment.  I had already tried aspirin and that didn't touch the pain in my hands so at about 1am I took one percocet and waited.

About 2am I got horribly tired.  My hands still hurt but I couldn't stay awake so off to bed I went.  2am is early for me.  I typically go to bed between 3am and 4am.  I slept heavy.  I do remember waking up and being in pain but I couldn't stay awake.  I immediately fell asleep again.  This happened repeatedly until 2pm today.  I finally managed to stay awake.  I hurt everywhere.  A lot.  It was the I-had-been-in-bed-too-long pain.  I recognize this from years ago when I got deconditioned.  It normally makes sleep impossible and forces me to get up much earlier than I intend to.  BTW, I normally get up around 11am so this was a marathon sleep session for me.

I'm still groggy and it is 3:30pm.  I'm still waiting for the after effects to wear off.  My stomach is upset with me but that is probably because I haven't eaten anything for over 14 hours.  I'm still not coordinated enough to make food yet.   The granola bar isn't cutting it and no one is home to cook for me.

I had vivid and strange dreams.  My husband and kid had hung slings on tracks all over the house to help me get around.  The house was under construction so wires were literally hanging out of the walls including the shower stall I was showering in.  I remember thinking that electricity and water don't mix and the water will weep into the walls from the shower.

All in all, the experiment was interesting.  The pill didn't touch my pain.  I still had lots of pain and it still woke me up.  However, I was too tired to care.  The pill did keep me asleep for 12 hours and make me groggy today.  I don't think this med will be the answer.  I need something different.  Maybe I'll double my Celebrex dose.  I'm seeing the doc Thursday so I'll discuss it with him and see what he suggests. 

Dancing in the Rain

Gene Kelly aside, the first time I saw people dancing in the rain for real was up in the mountains in western MA.  Hubby and I went to a festival on the town green.  Now the green is surrounded by the town buildings.  All three of them.  These are tough as nails coutry folk who live off the land and often off the grid and today was party day.  So when it started to rain they just took off their shoes and continued to dance.  Turning smiling faces up to the clouds in sheer joy.  It was a beautiful day!

I need to do the same.  I need to learn to dance with joy in this time of rain.  I need to remember that I am alive.  I have a loving family.  I have people who care about me and pets that adore me.  I am lucky to be alive.  I need to remember that I too am tough as nails.  I have been given the rare gift of life.  I should live it with joy despite the rain.  After all, it is a beautiful day!

Saturday, January 22, 2011


I'm feeling generally beaten down by my illness today.

  • Woke up with my hands aching like crazy.  Aspirin didn't touch it.  I finally rubbed some Trameel on and it helped a little.  Keeping them warm has helped the most.
  • Had to stay in bed today.  Too tired to do anything.
  • Missed the photography show I wanted to go to.  It was an alum club thing so I would have met other women from my college that live near me.  An opportunity to make new friends.
  • Missed the community theatre show hubby is doing sound for tonight.  Again another meet and greet missed.
  • Kid is cranky cuz he thinks I don't need a wheelchair and he shouldn't have to push me around in one.
  • Can't type well cuz my hands hurt too much.
  • I'm looking at way too many medical visits in the upcoming month.
  • Just got the paperwork for my colonoscopy.  There is only one medical procedure that I hate more than this, an EMG.  That is where they stick electrodes in your muscles and shock you to see if your muscles and nerves work and it hurts like hell!  I guess I should be thankful that I don't need one of those.
Things I should be grateful for:
  • hubby actually laid down in bed next to me today just to keep me company
  • I had a wonderful dinner of Thai ginger chicken and rice that my kid went and got for me
  • My cats keep me company
  • I only in annoying pain not excruciating pain
  • I do have good days now and again
  • I can still watch movies and TV which I like doing
  • I learned all about olive oil while listening to America's Test Kitchen on the radio today
  • I can read books which I like doing
  • I got some good movies from the library to watch.  I saw Ironman and the English version of Death at a Funeral and Two Weeks Notice which I am about to watch again.
  • I have an awesome Mum who knitted me wristies to keep my wrists and hands warm and are the bestest present she has ever given me.
  • The shawl my friend gave is me amazingly soft and warm and pretty and I love it.
  • It was sunny today.

Friday, January 21, 2011

There's No Place Like Home

Today is one of my grumpy days.  I have days like this.  More often than not they start with a really bad nights sleep.  Couple that with higher than average joint aches (another storm is coming and my joints always hurt worse during bad weather) and the fact that my stomach has been upset since I ate yogurt at 2pm and a cranky teenage kid and I'm not to happy about my life right about now.

Of course seeing my therapist today probably has something to do with it also.  I'm pretty much stuffing my emotions regarding my new diagnosis. I'm trying not to think about it too much.  I don't like this one because it can't be fixed. 

Then there is the multifaceted problem of my kid moving out.  He will either be going to boot camp in June or away to college in September.  Either way he is moving out.  This will have huge ramifications on my relationship with my husband. 

My son, while cantankerous, helps out around the house and in a total role reversal has become my taxi driver.  He takes me to all my appointments.  Asking my husband to drive me anywhere is one of his hissy fit triggers.  I usually save this favor for the trips into Boston since I figure my kid will get lost trying to find his way around or get hit or both.  Boston is brutal to drive around. 

However, my asking hubby for a ride usually triggers a rant that goes on for at least 15 minutes.  He also can't hear anything I say after the rant starts.  I've proved this.  I got a date wrong and corrected myself but he was too busy being angry to hear the correction.  So I'm going to miss my kid. 

It isn't just the rides and the housework though we have become closer since I've been stuck at home.  He isn't the most verbose kid to start with so he is really difficult to get to know.  The mere fact that we are bumping around the house together has made us interact more often and we seem to like each other's company even if we don't talk that much.  I like having him around and I am going to miss him tremendously when he leaves.

So I'm sad today and a bit weepy and sore and have an icky tummy and cranky myself.  And I've eaten my way through quite a bit of ice cream.  But, as my mother says "This too shall pass."

Thursday, January 20, 2011

Second Set of Puzzle Pieces

I talked with the Rheumetologist yesterday.  All my tests came back.

Parvovirus is negative
Inflammation markers still elevated but still trending downwards
Vitamin D is low 24

She doubled my vitamin D dose from 1000IUs/day to 2000IUs/day and wants me to have a brain MRI and a neuro consult.  I don't remember her exact words but she is not taking me on as a patient.  She is only consulting and my primary is going to have to arrange the follow up tests.  So I've been dumped by another doctor.

My blood work also came back from my primary and I have low iron levels, 35, but my B12 is back in to the normal range, 512.  Also tested negative again for Celiac by blood test.  Interesting thing the endo doc mentioned that if one of the Ig number is off it will skew the Celiac test.  She is going through my charts to see what my blood tests showed.  I know the ID doc ran those.

So here is where I stand:
No infectious diseases
No bacterial infections
No viral infections that they can test for.  So far all docs have refused to order the XMRV test.
Malabsorption of B12, iron and D
Positive Fibromyalgia points
Elevated inflammation markers
Thyroid numbers have returned to normal
B12 is back in normal range

My To Do List:
Still waiting on the endo tests: blood work for thyroid and pituitary function and saliva tests for cortisol levels
Ultrasound of thyroid is scheduled for one week from this Friday
Need a rheumetologist and neurologist and a brain MRI
Trying to schedule a colonoscopy cuz primary thinks something is wrong with my plumbing because of all of the malabsorption issues
Trying to schedule a neuropsych test to demonstrate cognitive decline for LTD
Follow up with Endo doc is the first Monday of February.  I'm going to ask her to put together team Chronic Pride

Tuesday, January 18, 2011

Eye See You Mr. ME

Being an optics geek and a geek in general I've always been fascinated by eyeballs and how they work.  My early fascination with them probably started when I had eye surgery when I was six to correct lazy eye and I've been learning about them ever since.

Eyeballs are pretty primitive actually.  You can think of them like a water balloon.  Kind of roundish and squishy.  They are literally a sack filled with fluid.  Then if you cut a hole in the balloon exactly opposite the knot and glue a lens in place, you have a pretty good replica.  Now add an imaging plane (photographic film) inside the balloon centered over the knot and you have an eyeball.  I think of the knot as the nerve cluster that heads off to the brain to transport the visual data from the imaging plane to the visual cortex in the brain.

The main problem with eyeballs is getting the balloon to focus the image coming from the lens onto the film so that the picture isn't fuzzy.  This is done with muscles.  So now add a pair of hands squishing and squeezing the balloon and you have an eyeball that can focus an image onto the film that can now be transmitted to the brain and the picture will be in focus.

What does this have to do with Mr. ME?  Muscles.  You are using muscles all the time you are using your eyes.  Muscles not only move your eyes around in their sockets but also squeeze them to maintain and change focus so that you can see objects up close or at distance.  Mr. ME doesn't let us use our muscles much before they become fatigued and this includes our eyes. 

Now reading and computer work in particular are difficult things for our eyes to do for any length of time even if we are healthy.  Eye fatigue from computer use is very common.  Did you know that you blink less when you stare at a computer screen?  This causes our eyeballs to dry out even in healthy people and increases eye fatigue. 

Our eyes aren't designed to be static.  When outdoors we are always looking around and constantly changing our focus.  Reading a computer screen is like standing still holding a 5lb pail out straight with our arm.  It isn't heavy at first but just wait until your arm gets tired.  It soon feels like it weights 5 tons instead of 5lbs.  This is what we are doing to our eyes using a computer.  We are forcing our eyeballs to stay at exactly the same focal distance for hours.  Now add CFS to the mix and it is no wonder that we have trouble reading and using a computer.

What to do?  Here are some tips and tricks from cubical world to help with reading:

  • Use indirect light.  Never ever ever have a light pointed directly at or over a computer screen.
  • On the other hand use really good lighting when reading a book or get the audio version.  My library has books that can be downloaded to my computer or I can get little dedicated MP3 player books from the library itself.
  • Use incandescent light in areas that you are trying to read (books or computer).  Eliminate florescent lighting in the area including CFLs.
  • For computer work use low room lighting directed away from your screen which is preferably incandescent.
  • Look away about every 15 minutes, defocus your eyes, look out the window to get your eyes to focus long distance.  The further away the better.  This is done naturally when flipping a page in a book.  Use a software timer to interrupt you if you get absorbed in material like I do.
  • Site your desk or chair near a window so you can look up and out frequently
  • Look away and blink rapidly and then close your eyes to remoisturize them
  • Lower the brightness level of your screen
  • Lower the contrast levels of your screen
  • Move the computer monitor as far away from you as possible.
  • Use writing software that allows you to change the background color.  White is very fatiguing.  Just look at the Kindle; they actually use a soft gray screen so that it is easier on the eyes.  It is also another reason books are easier to read than a computer screen.
  • Use an antiglare shield on the screen
  • You can even adjust the brightness of the TV set so that it is softer.  Again use low room light and sit as far away from the TV screen as you can.
  • Take frequent breaks.  Put down the reading and do a little stretching.  You don't have to necessarily get up.  Just move around a bit.  Wiggle.  Rest the eyes.
  • When I watch commercial TV I close my eyes during commercials to give them a rest.
  • Use the zoom function on the computer to enlarge the screen.  It makes things way easier to read.  I have it permanently set at 150% and often increase it to 200% or 400% if I am having trouble focusing on something in particular.
  • Fiddle with the assistive tech built into the computer software
    • On Windows go into the Control Panel and look for the wheelchair icon.
    • Vista has text to speech, contrast controls, mouse controls that make it easier to point and click and see the cursor, the ability to stop animations and get rid of background pics
  • Use text to speech software
  • Use speech to text software.  I used Dragon Naturally Speaking about six years ago when I was having problems with my hands.  I used the full version which is expensive but it is one of the better products on the market.  I did hate the autofill function which often guessed wrong and I did spend a considerable amount of time fixing what it typed.  You can get a home edition at Costco for about $60.
  • Do some eye palming (see first video)
  • Do some eye yoga (see second video).  I used to do an almost identical practice with my yoga teacher.  This is an excellent video and the exercises can be done lying down.  Bonus!!

Other resources: vision exercises and nutrition by an ophthalmologist While this about ergonomics for healthy people, FM and CFS folk are even more suseptible the effects of bad posture and repetition.  This site has tons of information and resources. state libraries for people with print disabilities i.e. LOTS of digital books

Feel free to add to the list of suggestion or links.

Laser Geek

Just had to post this since I'm a laser geek:

7 More Vials

Going to a new doctor is always such an adventure.  You don't know where you are going.  You don't know where to park.  You have no idea if the office staff is wonderful or a bunch of form Natzis.  Well after seeing three different specialist I think I just hit the doctor jackpot with number four.  Today I went to see an endocrinologist at Lahey Clinic North Shore.  I am in LOVE with this doctor.  The facility itself is quite nice and very clean.  The elevators are too small but hey I'll deal.  She is a petite Asian woman that is smart as a whip and loves her job.  She went through a lot of the papers I brought with me.  Listened to my history.  Quizzed me on all sorts of issues such as my own health, health of my family and generally grilled me on weird symptoms that I didn't even think to put down on paper.  She did a thorough exam and noticed all sorts of stuff my regular doc missed such as my being dizzy, weaving when my eyes are closed, slight swelling in my ankles, etc.  She even tested me for OI without my even asking her!!  Woohoo!!  She then proceeded to tell me her thoughts and her action plan.  Did I mention I love this woman?  I don't have OI but since I have all the symptoms she is thinking that my cortisol levels are totally whacked.  She thinks I've had FM for a while even prior to my getting sick.  Then, when I caught my virus back in May, my thyroid went into overdrive to the point where my immune system started attacking my thyroid (hence the elevated thyroid numbers that showed up during the ID docs blood panel).  As I was recovering from the thyroid problems (the numbers went back to normal within a month) the FM flared due to deconditioning.  She is now the third doc who suspects that some of this is neural so I now have two of them wanting a brain MRI.  So the plan is: ultrasound of the thyroid, lots of blood tests for thyroid and pituitary function, testing of cortisol levels, MRI of the brain and a neuro consult.  She is going to expedite the tests and get together a team of doctors to take care of me including her, a Lahey rheumetologist (the Tufts one said she was only consulting and didn't want to follow up unless needed), and a really really good neurologist (her words not mine).  I am SO excited!!  I mean over the moon excited!  She wants to help me!  She has a plan!  She is getting a team together! This is so awesome!

Another awesome thing that happened was a girl thing.  Since my body got really wacky in September I now cry at the drop of a hat.  Prior to that point I was a stable human being and even though I am a girl I rarely cried.  I mean only once or twice a year tops and it had to be something really horrible.  Now anything will start the tears going and it just gets worse the more tired I am.  I've now cried in my primary docs office and my councilors office.  I came damn close to crying in the lawyer's office and in the ID Doc's office.  Now guys have a universal reaction to this: I get the dumbfound look and then the inevitable "Are you depressed?" question.  Guys just do not get the hormonal thing.  When I burst into tears in her office while I was explaining how stupid and shaky I get she came over, held my hand and told me "what has happened to you is awful and life altering.  I'm going to help you feel better."  She didn't ask me if I was depressed.  She didn't think I was a freak.  I have a patient crush on her.

Oh, in case you were wondering, the blog title refers to the additional 7 vials of blood they took for testing today.  I think I am close to 50 vials now.  And, the first cortisol test requires me sucking on a sponge for two minutes so they can test my saliva.  I just did my first one.  I'm sucking another sponge tomorrow night.  It has to be done at midnight.

Sunday, January 16, 2011

Sacred Healing Prayer Shawl

My friend came over for a visit today.  In her hands was a lovely pale yellow knit object made from incredibly soft yarn.  I could tell it was handmade by the fancy stitch work.  She hands me this beautiful thing and tells me that she got me a Healing Shawl.  Such a little thing means so much to me these days.  It is a sign of friendship, of caring, of good wishes.  We were supposed to watch a movie but we sat talking for five hours instead.  We really do enjoy each others company a lot and don't see nearly enough of each other.  After she left I read the card that was attached to the new lovely gift and I cried.

As you wrap yourself in your prayer shawl....  May you be surrounded by its love, enfolded by its prayer, embraced by its warmth and cradled in its softness.  Let it be your sacred place where you can meet with your God and receive the healing energy you need to bring you into wholeness and wellness on every level of your being.
May this shawl bring you comfort and joy in every moment of your blessed life and remind you that someone really cares.
Background: Shawls have been made for centuries and provide warmth and comfort to the wearer.  Prayer shawls have been given during illness, recovery and loss, as well as during times of accomplishment, joy and celebrations.  Each shawls has been made by a volunteer who has hand knitted a prayer for your healing and well being.
Created for you with thoughts of blessings, light and love. 
-The Greater Boston Church of Spiritualism

Friends like this are so precious.  A gift from God.  I am very very lucky.

Off In La La Land

I would love to write a nice long coherent post but I seem to have crashed again today.  I had some great ideas to write about while I was lying down but they have run off in the fog.  This is such a strange illness.  Two days ago I was doing well.  I dragged kid off the market to get some supplies in after our big snowstorm.  22" here in town with about one hour with no power.  The day after I needed some more meat for dinners for the next couple of days.  We went to two markets (ah maybe this was the mistake) so that I could make amazing chili and our favorite America's Test Kitchen Baked Ravioli.  I have to get the ravioli and sausage from the real Italian market the next town over.  I drove since the kid had lost his wallet.  Now I haven't driven in MONTHS.  I was so happy that I was clear headed enough to drive.  It felt weird and wonderful.  Of course I made the kid push me around the market in my wheelchair so I didn't use any of my precious energy walking up and down the aisles.  He HATES pushing me in the wheelchair.  It is the one issue that he pushes back on with my illness.  He desperately wants me to walk around the market under my own power.  He doesn't mind driving me all over the planet but he doesn't want me in the chair.  Anyway, we got the stuff.   I started to feel a little woozy on the drive home and knew I was done for the day.  I threw together the chili in the crockpot and sat down for the afternoon. 

Yesterday, we went for a little trip to the library and the health food store.  I had just received hate mail from the library for keeping several books for over two months and I desperately needed B12.  I was down to my last two pills and I was totally out of GF bread for my breakfast.  I was tired yesterday.  I didn't want to do anything but the trip to the health food store was ten or fifteen minutes tops.  It is a little store.  Smaller than most convenience stores these days.  I didn't think it would be a big deal.  I had to skip making the ravioli dinner.   Hubby wanted to go out with the guys anyway so I just ate some leftover chili.  I spent the evening on the couch watching the movies I picked up from the library.  I figured I would be fine. 

Then today.  I was tired when I woke up.  I was only up two hours when I had the overwhelming urge to sleep again so I went back to bed.  I'm not sure if I slept or not but three hours later hubby came in to find out how I was doing.  As soon as I stood up I knew I was going to be in trouble.  When I get really bad I get the shakes.  Hubby says I look like a Parkinson's patient since I loose control of my head movements as well as my hands.  I don't have fast small shakes but rather slow large adjustments of body part location.   The ringing in my ears gets wicked loud and I also get really thirsty.  So here I was sitting on the couch trying to read a book but my head was bobbing and weaving and my hand was shaking.  I ended up putting a pillow on my lap, putting the book on the pillow and then propping my head in my hand so that I was still enough to read.  Of course my comprehension left something to be desired and I kept having to read the same passage over several times for it to sink in but the book was good enough that I was willing to put up with that.

I had the shakes so bad by dinner that both my son and hubby pitched in to help with the ravioli.  They both love this dish so I didn't even have to ask for help.  Oh my, what a difference a month makes.  Dinner prep was so pleasant.  No yelling, no hissy fits.  Just everyone pitching in and helping each other cook.  It was awesome.  So here I am in a fog with the shakes, very loud buzzing in my right ear and terribly thirsty with not much to say.  Bleh....   I wonder if I'll be like this Monday when I see the Endocrinologist.  That should be interesting.  I'll have to make a list of stuff I want to ask her since hubby won't be there to help me out at the appointment.  I really want to get tested for OI/POTS. 

Saturday, January 15, 2011


"If you don't know where you are going, you will probably end up somewhere else."   -Laurence J. Peter

Friday, January 14, 2011


I have no idea where this originates from but I like it:

One evening an old Cherokee told his grandson about a battle that goes on inside people. He said, "My son, the battle is between two "wolves" inside us all. One is Evil. It is anger, envy, jealousy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, and ego. The other is Good. It is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion and faith."

The grandson thought about it for a minute and then asked his grandfather: "Which wolf wins?"

The old Cherokee replied simply, "The one you feed."

Me, Myself and I

My body and I have an adversarial relationship.  We've never liked each other.  Well at least since puberty anyway.  Being an extreme introvert I live mostly in my head.  My body is just along for the ride.  It keeps annoying me once in a while when it wants feeding or sleeping or stretching after I've been sitting too long but most of the time I'm pretty good at ignoring it. 

However, even as I write this I realize that isn't entirely true.  I've also been active.  Not in the American athlete way.  I've never been on teams.  I was always the last one to be picked during gym.  But, I started ice skating when I could stand up and ballet a few years after that.  In my early teen years I took gymnastics and did real training as a figure skater and took ballet lessons until I started point work.  During college I swam almost daily for the entire four years I was there.  I also learned to cross country ski for a geology class (winter field work).  In my 20s I joined my first gym and started taking aerobics, stretching and weight lifting classes.  I even did yoga for a number of years.  All of which I've liked. 

However, I have never considered myself athletic for two reasons: 1) I am not gifted in any of these pursuits and 2) I've been varying degrees of chubby since puberty.  I'm okay at these sports and do them because I enjoy them not because I'm particularly good at them.  While my body and even my mind have enjoyed these activities I have never defined my life by them.  They are just something I do.  It isn't something I bring up during casual conversation when people are tying to get to know me.  Maybe this another aspect of ignoring my body.  My gift is my mind not my corporeal self.  Yoga has helped me integrate my body into my self more than it used to be but I'm still pretty stuck in my head.

Hence, I'm pretty damn good at ignoring my body.  If I get engrossed in a book or an interesting subject on the internet, hours go by before I notice the outside world again.  This has some interesting side effects.  I can play all sorts of head games with my body.  I can ignore pain for instance.  When I was an auto mechanic (yes, I was a grease monkey for four years just after I got out of college) I was constantly bashing my knuckles and various other body parts.  I would get cuts and scrapes daily.  After a while of doing this I built up a tolerance level for it to the point I often had no idea that I cut myself.  I remember walking up the desk one day and a customer told me I was bleeding.  I looked down and sure enough I had an open cut on my hand that was dripping blood on the floor.  It didn't hurt at all.  I just wrapped it up and continued working.  Pain tolerance was also part and parcel of the machismo of working as a mechanic.  You had to be tough to work there.

About a decade after that I took yoga.  I started it because I was having back pain and the doctors couldn't find anything wrong with me (sound familiar?).  At this point I had been diagnosed with osteoarthritis of the spine.  I had spurs on several vertebrae that were impinging on the nerves that wrap around the lower part of my left rib cage.   However, I had also become deconditioned after a serious bout of depression.  My back had the worst pain but my joints also ached.  I remember this happening when I was in my early 20s.  After I deconditioned after leaving the garage, I would wake up in pain and would have to shower to get everything moving.  I would be fine after my morning shower but I felt like I was 60 instead of 20.  So, to try and get my body back after yet another round of deconditioning I took yoga.  I figured it was time to get my body and mind back on speaking terms.  I also decided that it was time to stop ignoring my spirit and yoga was my path to joining the three back together again. 

I was lucky.  I ended up in a class with a true yogi that had been trained by B. K. Iyengar among others rather than an aerobics instructor that happen to get her yoga certification.  My teacher had also trained in yoga for physical therapy and as a healing modality.  She had been practicing for over 30 years.  From her I learned a different way to relate to pain.  That not all pain is cause for alarm.  That you can be in pain but not be worried about it.  While the pain from my arthritis was annoying there wasn't anything that I could physically do to fix it so I needed to accept it and dismiss it.  I spent three years training with her and after two I was no longer in pain of any sort.  I distinctly remember when it hit me.  I walking down a hall at work.  I was used to moping around due to the constant pain in my back.  Instead when I checked in with my body there was nothing.  The pain was gone.  My brain couldn't wrap itself around this concept.  "What do I do now?  I can't blame my pain for anything.  I can't justify moping around.  I can't worry about it anymore."  It was a strange day.

Four days ago I got diagnosed with Fibromyalgia.  I'm still processing this.  I've been thinking about my weird association with pain over the course of my life mainly because I've been reading The Pain Chronicles, which is an excellent book by the way.  Prior to the diagnosis I've been ignoring my pain.  Dismissing it as deconditioning.  After all this is what doctors have told me in the past, "There is nothing wrong with you.  You are just out of shape.  (my being perpetually chubby doesn't help with this one)  You need to exercise."  and generally I've found that I feel much better on all levels if I am doing something whether it is lap swimming, weight lifting or figure skating.  So I embark on yet another exercise routine and my body generally feels better and I tend to be in less pain.  But when I look back on my life I now wonder if I have had FM for many years.  Maybe since my 20s when I used to have to climb in the shower in order to get moving in the mornings and having all of my joints ache.  Because I've been so active for most of my life I have probably managed to keep the FM to a dull roar with it only annoying me when I end up deconditioned for whatever reason.  My tolerance for pain also allows me to ignore it most of the time.  I notice it and then dismiss it.

However, since the diagnosis I've been in more pain.  I think it was been there before but I've managed to ignore it.  Now every time I notice a body part aching I immediately think "I've got Fibromyalgia.  I'm in pain.  There is no cure."  Whereas prior to the diagnosis it was more like "I'm in pain.  Oh, I'm just deconditioned.  I'll be fine once I can exercise again.  Go away.  Stop bothering me."  I'm worried about the FM pain.  I'm worried that it will get worse.  After all it has steadily gotten worse since I first became ill in May.  Originally I wasn't in pain at all once the initial flu like symptoms were done.  After I had the TB tests then the joint pain set in.  I had to start Celebrex so that I could get off arpirin.  Now even the Celebrex isn't enough.  I'm probably going to have to start either a different pain med or an additional one.  Now that I have the diagnosis I'm taking the pain more seriously. 

I had the worst night's sleep last night.  The pain in my joints kept waking me up.  Every time I moved I hurt something.  Now this isn't the first time this has happened but prior to this I just dismissed it.  Now because of the diagnosis I'm paying attention to it.  I'm noticing it.  I'm acknowledging its existence and because of that I hurt worse.  I'm probably in the same amount of pain but it hurts worse.  Now I want to divorce my body again.  I'm done with it.  I want a new one.  All shiny new with no aches and pains.  I want one that is svelte and athletic and can land Axle jumps on the ice.

Wednesday, January 12, 2011

CFIDS Christmas

My Christmas Tree
Yes, that is one of those trees that you are supposed to put on your lawn.  Please note the lights not working on the top tier and the fact that there are only decorations on the section of the tree that can be reached when seated in the adjacent chair.  I was informed at the beginning of December that I had no job and no LTD hence the lack of presents under the tree.  Most of what is there was sent by my mom and sister.  Bless their wonderful hearts.  I also got a lovely flower arrangement from my brother in law which was totally unexpected and made me cry.  He found out how sick I was and sent this:

Despite being sick and suddenly having no income Christmas was wonderful.  I think it was because we went into it with no expectations.  We knew there wouldn't be a big party.  We knew there wouldn't be any presents.  So we were happy when we got a little extra money from plowing and could go out and buy a few things.  We were happy when we got to have a wonderful dinner.  We were happy that I felt well on Christmas day.  We were happy when we went on a drive to look at the neighborhood Christmas lights.  We were happy when friends came over and made us a big turkey dinner because I was too sick to cook.  We were happy when a neighbor sent over a homemade GF cake.  As my husband says "its the simple things" that bring real joy to our lives.

I Figured It Out

When I first became sick I posted this entry in my other blog that I was writing at the time, Silver Blades:

Before I was a skater I was a Mom, wife, gardener, optical communications specialist (I play with lasers), etc. Now I am sick. I finally decoded my diagnosis. After doing lots of blood tests and even chest x-rays my doctor said I had 'viral syndrome'. I figured it was a bucket diagnosis meaning he had no clue what was wrong with me so go home and be sick for a while. After doing some reading on the Internet it turns out he left out a few crucial words and a hell of a lot of explanation. What I have is "post viral fatigue syndrome" which is a subset of Chronic Fatigue Syndrome. Apparently when someone has a viral infection like I did over Mother's Day it can often led to PVFS. This means that I basically can't do anything and most of all can't tolerate any sort of aerobic exercise. This would explain the flu like symptoms the day after I went skating which happened not once, not twice but three times! Okay I've taken the hint no skating for a while. I have to rest. My body needs to heal.

An odd subset of this are the ideas coming out of the alternate healing community. That this is mostly a woman's disease; that it comes of doing things for others; that it comes from not taking care of oneself; that it comes of putting all others before self. Hence the 'cure' is resting, doing things for oneself, taking care of oneself. While I'm not totally sold on everything they are saying it did get me thinking.

What have I done lately for fun?
What do I for fun?
Does everything have to become work?
Does everything have to be perfect?
Can I put myself first?
Do I always have to use my spare time cleaning the house?
Do I really have to take on the role of breadwinner while my husband's business tanks?
Do I have to be breadwinner and housekeeper at the same time?
Can they even coexist? Particularly when I throw athlete into the mix?
Should I have a career or a job? Are they mutually exclusive?

So I sat in the backyard this morning. Contemplating all things me. What I was supposed to be doing was watching the bees and clouds meander by and instead I find myself thinking that I should: pick some weeds, put my tomato plants in, go take a shower, get dressed, start skating figures as soon as I can get back on the ice, brush off the patio furniture, fix the broken wheel on the planter, move the bricks in the walkway, etc, etc, etc.... I really suck at this relaxing thing.

So in between the list of shoulds I managed to watch a Red Admiral butterfly. I saw the honey bees which I knew would be busy in the catmint I moved from the front of the house years ago when it got to big for its original spot. I saw a dragonfly the size of my hand and ones the size of my pinkie. All of them were enjoying the flowers I had put in years ago when I was a gardener and skating hadn't become my obsession yet. I felt the sun warming my skin and finally didn't feel cold. I felt the breeze tousle my hair and make the seed heads on the grass sway. I heard the birds sing and the chipmunk squealing from somewhere in the hostas. The breeze picked up and my wind chimes started to do a random walk through the Gregorian scale. Then one pipe was hit and the note sustained reminding me of the Buddhists call to prayer. The call to meditate on the healing powers of nature. And the world finally fell away.

The ideas coming out  of the alternative healing community have always bothered me but I wasn't able to put my finger on it.  You know the:
  • You got sick because of all the stress in your life.
  • You never took the time to take care of yourself.
  • You got sick because you always put others first.
Which leads to:
  • If you just rest you'll get better.
  • If you just think happy thoughts you would get better.
  • If you just exercise more you would get better.
  • If you just got up earlier you would feel better.
  • If you just imagine your life as perfect it would manifest itself.
I had an epiphany this morning.  I know why all these statements bug the crap out of me.  They are all blaming me for getting sick.  They make me responsible for some weird virus taking up residence in my body.  If I hadn't done _____ then I wouldn't be sick.  If I just do ________ I would get better.  WTF!?!  I caught a virus and never got better.  How is it that I'm responsible for that?  What the true problem is that science hasn't figured out this illness yet.  They don't know what it is or how to cure it.  It has nothing and I repeat NOTHING to do with how I lived my life prior to getting sick (other than the fact that I happen to not live in a virus free bubble) or with how I live my life now. 

How I live now can make me more miserable than I am or make me feel better both mentally and physically but it WILL NOT CURE ME!!!  I am sick.  I need science to figure this out.  And mostly IT ISN'T MY FAULT!

Sick Humor

  • I used to have a handle on life, but it broke.
  • You're just jealous because the voices only talk to me.
  • I'm not a complete idiot.  I'm just missing a few pieces.
  • Consciousness: that annoying time between naps.
  • Ever stop to think and forget to start again?
  • I smile because I don't know what the hell is going on.

Disclaimer: most of these I cribbed from an email floating around the Internet.  However, I just found the entire list almost verbatim from the blog I scarfed the Maxine cartoon from so I have the sneaking suspicion these are all Maxine quotes.  Because so many of these apply to the chronic life I feel like they are very appropriate.

Tuesday, January 11, 2011

Sick Humor

You know you're in tough shape when your cat starts yelling at you....

funny pictures - Your meds.
see more Lolcats and funny pictures

First Real Diagnosis

I have fibromyalgia.  This came as a bit of a surprise since I'm not really in much pain.  I have some mild joint pain and muscle cramping which gets worse when I'm tired but most of the pain is well managed with Celebrex.  For me the worst symptom out of the list is the debilitating fatigue.  It stops me from doing anything.

However, during my rhumetology exam this morning she pressed on all the fibro points and every single one hurt.  Some more than others but I had pain at every single site.  The weird thing is that she doesn't treat CFS at all and knew nothing about XMRV.  She didn't even know what it stood for never mind that it the virus probably linked with CFS.  So I asked her point blank for a referal to a CFS doctor.  How could a fibro doc not know anything about CFS when they are more than likely related??

Anyway, the upshot of this whole morning is that I'm being tested for the parvovirus (the one and only virus missed by the ID doc), vitamin D deficiency (how was this one missed) and the usual inflamation markers (to see if they are still trending downwards).  Another six vials of blood and my first urine sample.  She wants me to have a brain MRI and a neuro consult for the memory loss, brain fog and confusion.  We discussed the usual possible meds for fibro including Lyrica, Neurontin and Cymbalta.  Not sure if I want to go the med route yet particularly since I already have headaches and nausea and some of the meds make these worse and I'm not in much pain. 

I am begining to suspect I have a high pain threashold.  Not surprising after I worked in a garage for years as a mechanic.  You have to be 'tough like bull' to work there.  After four years I often didn't even know when I was bleeding all over the place.  When I had my kid I lasted an entire day in full labor with no drugs.  It was at my husband's insistance that I finally gave in and had an epidural.  But I digress...

I just have to wait for the official letter and phone call with the test results which should be next week.  Then it is on to a CFS specialist, the endo doc and a neuro doc.  I just hope I get through all this prior to the deadline on my LTD.

Scooby Doo

At 7:30am this morning I was rudely awoken by my neighbor's dog barking its head off.  She had tied it up to the tree on her property that is next to my bedroom window.  I normally get up around 11am.  I kept lying in bed hoping he would shut up but after about 20 minutes I was wide awake and he showed no signs of stopping.  So I got up, took my mouth guard out and in my pjs and my wild uncombed hair opened the window to let in the 20F air.  I cupped my hands to my mouth and yelled as loud as I could  "Gina!  Shut your f*&^ing dog up!"  It was only many hours later that I realized that I had just shouted profanities at the top of my lungs for entire neighborhood to hear.  That's what happens when you get a CFS person up too early I guess.  Lots of brain fog and crankiness.

Now while yelling at the dog did little other than making him bark even harder and give me a sore throat for the day, I did derive a perverse pleasure from it.  I am now left wondering what tomorrow morning will bring.

Monday, January 10, 2011

The Week in Review

I've been thinking about my week.  Here is a recap:  Monday and Tuesday woke up with tons of energy, could have bounced off the walls but restrained myself, very very happy, couldn't sit still (i.e. not my normal self); Wednesday crashed hard, slept all day, couldn't get out of bed; Thursday still crashed but managed to get out of bed, took two naps during the day, dragging; Friday still crashed but had to go to Boston to meet with lawyer, got brain fogged after only half an hour of talking, had to sleep when I got home; Saturday woke up with a massive headache, got so bad I had to lie in bed with eyes closed, took migraine meds; Sunday fine back to normal energy and happiness levels.

Now, if I didn't know any better I swear I was hopped up on adrenaline the first two days and then suffered the crash afterwards.  It wasn't my normal happy it was wired can't sit down bursting at the seams happy.  I don't think this is a pacing problem.  I think it might be a body chemistry problem.  I am not normally like that.  Today was one of my normal days, slightly sleepy, slightly foggy, slightly dizzy and generally in a good mood with enough energy to shower, make tea and sit in a car for a ride.  Bouncing off the walls is definitely NOT my new normal.  I've talked about this feeling a bit manic depressive.  It is almost like the physical version of it rather than the psychological one.

I can hardly wait to talk to the CFS specialist about it.  I'm seeing her on Tuesday and I'm all excited.  I'm actually trying to make myself tired so she sees in bad shape with the shakes and not being able to talk.  I already told hubby he HAS to go in with me if I'm going to make myself that bad.  I can't even talk properly when I'm like that.  Its a tough call; being able to communicate like an intelligent human being or showing up in obviously bad shape but not being able to discuss things. 

Saturday, January 8, 2011


There has been quite a bit of discussion lately on various blogs regarding POTS and OI.  I'm still learning about this and upon reading the description that Sue sent me I have probably had this condition since I was in college almost 30 years ago.  I still remember almost passing out one day when I went from sitting to standing.  It was damn scary.  My vision got all black around the edges and I had to sit back down fast before I fell down.  More recently I've had trouble at work when sitting at the computer for long periods of time.  I'll get lightheaded when I get up to move around.  Someone told me to eat something salty and that worked quite well.  However, I still had trouble when paired with an office mate that like the heat turned up.  I would actually get nauseous as well as lightheaded.  I would have to take my work to another location so I wouldn't become physically ill and all this happened before I had CFS.

Of course at the time I had no idea what was wrong with me.  I knew that heat didn't agree with me and I had to have a cooler office than most people liked.  The one time I went to a doctor about it when I was in college I was told that there was nothing wrong with me and that I just wanted some attention so I never went back to a doctor for these symptoms although they bothered me for the next 25+ years.  Of course I wasn't helping myself since I have been eating healthy all those years and hence had cut almost all salt out of my cooking.  It turns out that I should have been adding it.  Anyway, here are some useful links regarding POTS and OI.  Let me know if you have found any others in your internet travels.

Ten Tips from
About OI from
Meds for OI from
POTS Wikipedia
OI Wikipedia
National Dysautonomia Research Foundation
POTS Links
Sue's blog article

Thursday, January 6, 2011

Intestinal Parasites

I just read an article in the Huffington post by a doctor that has worked with a lot of patients that have CFS type symptoms but actually have intestinal parasites.  Turns out two of them in particular cause symptoms close enough to CFS that many of the patients are misdiagnosed.  Once they are treated for the parasites the CFS symptoms go away.  I believe the ID doc tested for these in myself but now I'm curious and have to go check.  They are Giardia lamblia and Cryptosporidium parvum.

"In evaluating these patients, I found that the majority had intestinal parasites, food intolerance or a lack of healthy intestinal bacteria. (For more information about intestinal bacteria, see Probiotics or Friendly Bacteria) These conditions were not mutually exclusive. Many patients had more than one reason for chronic gastrointestinal problems."

Wednesday, January 5, 2011

That's Where the Other Shoe Went

I knew it was going to happen. It was just a matter of when. I was hoping to get a few more good days in first but it was inevitable. I feel like absolute crap. I'm lucky I'm not in much pain but OMG am I tired. I slept until 4pm today and didn't get out of bed until 5pm when the neighbor's dog started barking. I've been on the couch since. I have total brain fog and can't speak clearly. I just can't get over the disabling fatigue. Yesterday I could have bounced off the walls and today I'm dragging my ass out of bed. What the hell happened???

More Sick Humor

Sick Humor: The Golden Girls (1989)

The description is spot on because the head writer, Susan Harris, suffers from CFS.  The sad part is that 20 years later the exact same thing is happening in doctors offices all over the country.   Why is this disease so misunderstood??

Cautious Optimism

As much as I detest our expresident, this particular phrase best describes the last two days for me. This is the best I've felt in months! I mean months!! I'm waking up clear headed. I have a bit of energy. I feel like doing jumping jacks but I know better. Instead I put in two loads of laundry and picked up a few things off the living room floor. I also typed up an entire document for my LTD case. I had to have my usual low key few hours around dinner time but if I had done all this work even last week I would have been asleep instead of watching cooking shows on PBS. I'm shocked. I'm joyous. I'm filled with life. I'm excited. Could this be it? Could I really be getting better? Is the worst over? Am I going to relapse? Truth be told I have no idea. Only time will tell. In the meantime I'm cautiously optimistic that I might be on the mend.

Tuesday, January 4, 2011

A Little James

This SO matches my mood today.   Another "normal" day.  Woohoo!!

Day 3 of 2011

Mixed day today.   I woke up feeling normal which these days is a rarity.  This weekend I had made a list of things I needed to do with the intention of tackling it over the course of the week.  I made my usual breakfast of soft boiled egg and toast and started my day off by burning my expensive GF bread.  Oh pooh.  I gave the worse of the two pieces to the birds that have been hanging out in my Forsythia bush.  I then got disgusted with how filthy the kitchen was.  Some days my two guys just don't clean it well.  They seem to think doing the half the dishes and pushing everything into a pile on the far counter counts as a clean kitchen.  (God I hope hubby doesn't read this entry.  Love you hunny!  You do a wonderful job cleaning!)  There was days old pancake mix stuck to the counter, spaghetti sauce stuck to the stove and god knows what all over the sink.  So I used some of my spoons (spoons=energy) to clean the kitchen.  Typically I save spoons for other things like cooking or working on my LTD case.  I did the remaining dishes.  Scrubbed the counters.  Cleaned the stove top.  Had the kid sweep the floor.  The kitchen actually looked decent by the time the kid and I were done.

Then I went off to the office to see what email had come while I was sleeping the morning away.  Big news; my stuff is ready to pick up from work.  They must have needed the office space and wanted my stuff out of there.  Not a big surprise.  What was a surprise was the list of library books that they didn't find.  I only had a pile of six at the house and they were missing almost 20.  Now I know for a fact most of them never ever came home and I told them so.  However there were a few that might still be in my possession.  So here I am using more spoons rooting through book shelves and book piles trying to find library books from work.  I did find one that had gotten mixed in with my stuff but that only got my book count up to 7 out of 20.  Sorry, I'm done looking.  The only one on the list that might have gotten buried at my house is a now very out of date programing book.  Mac doesn't even have that operating system anymore.  Not worth using up any more of my precious energy for.  After a few email volleys we settled on me going in on Thursday to pick up my box o stuff.  Not sure how I feel about this.  I don't think I like it very much.  While I was having issues when I left it really was the best job I ever had.  I LOVED the work.  I had trouble with the politics and the people but that comes from me being such an introvert.  I was using work to learn how to deal with people better.

While going back and forth with work I looked into getting a lawyer for my LTD case.  I called the MA bar association that has a lawyer referral service.  I called the lawyer that they gave me and you could have knocked me over with a feather when she called me back within the hour.  I now have an appointment set up for Friday afternoon to go over my case.  I'm very excited about this.  Her rates are reasonable.  It is just a pain to get to her office.  If you need a lawyer calling the bar association is great.  You get a discount off the first consultation and you usually get a great lawyer as well.  Hubby has had really good luck.

Hubby came home in the middle of this phone call and sat down next to me to kill zombies.

I proceeded to write a letter to the LTD insurance company to request a copy of my policy.  Can you believe I was never given one?  I asked the ladies in HR at work and they didn't have a copy either.  Someone negotiated this contract.  Someone has to have a copy of it.  Note to self: in future ALWAYS get the policy that you purchase in writing!!  Duh, I should know this.

I also wrote an email to my acupuncturist requesting my clinical notes for the last year and possibly a letter if he feels like that would be a better summary.  Several of my care givers are going to provide me with letters either in addition to or in place of their clinical notes for use in my appeal.

While I'm doing all of this, checks showed up in the mail for the flowers for my uncle's funeral in England.  Crap, I had completely forgotten that I was supposed to order those this past weekend (love my short term memory lately).  I called my favorite local florist and she is so nice she gave me the phone numbers of the shops in Worthing so I could call them myself to save myself a few bucks in delivery charges.  Well it turns out that they have online stores (another duh) so I found a nice arrangement and purchased it online using my credit card.  I know approximately what the currency exchange is so I stayed in budget and got some gorgeous flowers to boot.  Because I got them online I also could send a picture to my sister and mom who pitched in for them.  Love the internet!! 

I'm really bummed about my uncle passing away though.  He died rather young from Alzheimer's.  He was married to my dad's sister.  I didn't know him very well but we had a good visit when we were over there four years ago so I have nice memories of him.  I'm glad my son got to meet him.

By this point hubby was doing weird grumpy things.  He made a strange comment about him needing to take care of dinner.  Like that was wicked complicated: turn oven on, put frozen pie in oven, set timer.  I was so fogged by this point I kept getting distracted from what I was doing; kept mangling days and appointment information; and couldn't talk and type at the same time.  I kicked both hubby and kid out of the office so I could finish emails.  I kept making strange noises when I got frustrated from loosing track of what I was doing.

I also worked on my paperwork for the lawyer meeting on Friday.  I fished my old briefcase out of the closet and had to clean all the pencil shavings out of it.  Where the hell did those come from???  I use mechanical pencils.  How weird.  I put all my medical files and insurance documents in there to get ready for Friday.  I figured out that I need to do some typing before the meeting and organize my personal notes a bit better.  More work.  I already have a small mountain of papers for the lawyer.   I can't believe I need even more.

I looked at my list and I had done everything on it!  Everything!  Wow!  I had such a productive day!  A clean kitchen, flowers sent to England, picking my stuff up from work and I now have a lawyer.  But hubby was acting weird.  We got into a strange not-argument.   It wasn't a good discussion but it wasn't a full blown argument either.  It had a strange flavor to it.  Sort of weirdly irritating like a friend giving you Indian sunburn.  I asked him about a ride to a doctor appointment and he started a rant about how he needed to work and couldn't take me to all these appointments and he had been driving me all summer to all these appointments and he needed to work instead and he couldn't just drop everything to drive me into Boston.  Of course I'm pretty addled by this point so I can't stand up for myself and I know it is pointless engaging anyway since he is busy ranting.  I just have to wait it out so I just sat there staring at him all googly eyed.

Dinner was very quiet.  He didn't want to talk.  I asked him later when I was crashed in front of the TV is he was mad at me and he said no.  When I tucked him into bed for the night it turns out that I had gotten the doctor dates mixed up and he was so busy ranting that he didn't hear me when I corrected the information and he can take me into Boston next Tuesday after all.

So it was a mixed day.  I got tons of important stuff done.  Good things happened.  Bad things happened and today was one of my husband's strange days.  Oh yeah, I got to take a shower so I'm all clean and smell wonderful with the new soap I bought the other day during one of my outings.  Grin!
All in all not a bad day at all.  Also, my weight has stabilized.  Woohoo!!!  I was scared that by the time I could exercise again I would be 300+ pounds.  I've only gained about 20lbs according to the scale but I know that doesn't take into account the loss of muscle mass that has occurred.  I'm just glad the weight gain has stopped.  This makes me very happy!

Monday, January 3, 2011

A Day On the Internet

I have spent all day (except for grocery shopping and making dinner) on the internet.  I just didn't feel like watching TV or reading books today so I've been online for twelve hours.  You would think I would have run out of stuff to do by now but I haven't.  I've read the news.  I've read Dear Abby.  I've read the chronic blogs.  I've read the skating blogs.  I've written a post on my food blog and updated the tips page.  I've commented on numerous blogs ranging from holiday wishes to the first time I was on the ice when I was 2.  I read through Amazon's recommendations for me and gone book shopping putting several new titles on my wish list.  Even listened to some music samples.  I've looked at random pictures on imgur and posted weirdness on Facebook.  I've written emails to my friends.  I've been distracted by cats on YouTube.  My brain has finally turned to mush and my ass hurts so I think I am finally going to have to call it quits for the night.  Besides, I'm hungry so in the tradition of computer geeks everywhere I'm off to have my midnight bowl of cereal and settle down with my cat in front of the tube for a while.

Sunday, January 2, 2011

2011: Best Laid Plans of Mice and Men

Here's to a new year!  I hope it is better than last year which was pretty stinky.  Although I am housebound and occasionally bedbound and generally a sofa sloth I actually have some resolutions for the new year and I am not typically a resolution type of gal.  I guess being sick has made me more introspective than I normally am.

  1. Take MIT's bio 101 class online via their open courseware.  This one is going to take a while but I already watched the video of the first class and I learned tons of stuff.  I hope to work up to their virology and epidemiology classes.  Hopefully I'm better before I get that far and can attend class for real.  The main reason for doing this is to learn enough biology that I can read the virology papers that are being published on XMRV.  However, I get bored intellectually and need some brain candy to keep me going.
  2. Eat better.  Although I eat pretty well I'm still sorting out the food vs energy equation and the cooking vs energy battle.  I'll be seeing my old nutritionist for some help on this one.  If I can also stop the weight gain that would be a nice side benefit.
  3. I'll keep posting new recipes and blog links on Fast Foodie.  I'm hoping to build up that readership a bit more over the next year and if I get enough recipes together maybe publish a real book.  How cool would that be?
  4. Figure out the whole pacing thing.  I still haven't got that one down yet.  I get so excited when I feel normal I jump around and do all sorts of stuff until I hit the wall and feel like crap again.  I need to start timing myself and sitting down between things or every two hours whichever comes first.
  5. I want to start exercising again.  I would love it if I can get enough energy reserved that I can start a very very mild exercise program just a few minutes of yoga or a gentle walk a couple of times a week.  I miss moving my body around.  Before I got sick I was figure skating, weight lifting, off ice training and had a personal trainer as well as a skating coach.  I miss being able to move around.  I'll take any small improvement in this arena.
  6. Win my LTD case so I don't have to worry about money.  First I have to find a lawyer.  Project #1 for Monday.

The best laid schemes o' Mice an' Men,
Gang aft agley,
An' lea'e us nought but grief an' pain,
For promis'd joy!
(The best laid schemes of Mice and Men
oft go awry,
And leave us nothing but grief and pain,
For promised joy!)
Robert Burns, To a Mouse (Poem, November, 1785)