Tuesday, November 30, 2010

The Cold

I can't believe how fast this cold has spread through my system.  This is only my third day being ill and it has already settled into my chest and by the feel of it I'm getting a lung infection.  I've had to take stronger and stronger cough medicine to stop the violent coughing fits.  I've lost my voice from coughing so much.  My entire torso hurts from coughing and I keep giving myself headaches from it.  I also keep swinging between being freezing cold and hot and sweating buckets so my thermostat is on the fritz again.  It got into my right ear last night and caused some serious pain and vertigo.  Thank goodness that had passed by the time I woke up this morning or I would have been in the docs office today.  I'll have to see how bad my lungs get tomorrow.  I have a doc appointment on Friday anyway but I wouldn't be surprised if I had to go in a day or two early with bronchitis. 

Adding Insult

Too add insult to injury, I now have a horrible cold on top of whatever I have.  This is my first time being sick on top of being ill.  I'm wondering how long this cold is going to last; if it is going to make me crash; and if I am going to have any complications.  I only got it yesterday.  I have no idea where from since I'm stuck in the house unless it rode in on a library book.  Within 24 hours I have one of the worst head colds of recent memory.  It has migrated into my ear and is causing all sorts of pain and balance problems.  Luckily I got to sleep in this morning which was nice.  I'm ready for bed again though and it is only 12:30 in the morning. 

I just spent two hours on line filling out all the forms for social security disability.  I had to keep calling my husband over to check my answers and my typing.  I wish he would have filled it out for me but he was approaching hissy fit stage so I couldn't push it.  I couldn't even read the directions by the end.  I printed everything out so I can go over it when my brain is working a bit better.  I wanted to do it earlier this month but I kept waiting for my brain to work and apparently it has been a bad month for that.  I highly recommend NOT filling out government forms while fighting a chronic illness and simultaneous head cold.  I hope I filled everything out correctly.  I know I left a few blanks, like I remember what I was earning 15 years ago.  Seriously??  What possible relevance could my salary from 15 years ago have to my current disability status???  At least I made the deadline.  When I get better I'm going to have to go to the SS office a few towns over.   I'm not looking forward to that.  I'm wondering if it is another realm of hell that is close to the DMV (dept. of motor vehicles = the third circle of hell).  The forms themselves aren't really that bad.  If I had been fully functional I would have done better and gotten through it a lot faster.  Sigh.  It is done.  I'll have to take corrections with me when I go to the office.

Sunday, November 28, 2010


Be forewarned, I'm not a biologist never mind a geneticist.  Here is a link to an interesting article with papers cited regarding how XMRV functions in the body.  I believe that the studies have only been done in animals so may not work quite the same in humans.  If you have any questions please go to the original documents.  Like I said, I play with lasers not microbes.  So here goes....

  • XMRV latches on to other viruses.
  • These viruses are very specific virus types.
  • XMRV holds the chemical key to open 80% of our cells.
  • XMRV makes perfect copies of itself.
  • XMRV doesn't need to mutate to hide since it latches on to other viruses which makes the new molecule invisible to the immune system.
  • Since XMRV is a chemical key both it and its piggybacked virus can invade 80% of our cells.
  • This invasion can cause a variety of symptoms because it can latch on to different viruses.  Hence the different types of CFS.
  • This invasion can cause cancers: currently there is some evidence linking XMRV to both prostate and breast cancers.
  • Since it can latch on to a variety of viruses, illness can have different triggers such as:   HHV6, EBV, etc  (even Lyme maybe?? my guess here)
  • This also explains why people that have volunteered to be human guinea pigs and are taking antivirals are not having identical responses to the various drugs available to them from the HIV arsenal. 
  • Because XMRV has essentially mutated to include one of a variety of viruses, the only 'cure' would be a drug cocktail engineered to the specific XMRV+virus hybrid that has invaded the host.

The Holiday Ice Show

I managed to get out of the house tonight.  I went to the local arena to watch my friend skate in the club holiday ice show. 

Before I got sick I was training for figure skating competitions.  Yes, there really are adult figure skating competitions.  Competing was something that I had wanted to do as a kid but couldn't pursue for many complicated reasons.  Anyway I had been skating in adult group lessons for about two years and made a bunch of friends at that rink.  Skating is unlike other sports, while it is ultimately an individual sport, as adult skaters we support each other unconditionally.  We help each other physically, emotionally and psychologically.  We become a skating family of sorts. 

It took two years for the local club to figure out that we weren't going anywhere and that the adults kept coming back for more torture, i.e. we were reliable repeat customers.  Prior to this year we had been individual members of USFSA due to finances.  Regular club fees and not-so-volunteer hours kept us from joining the local clubs, but this past year this club came up with an outstanding offer for the adults to join their club.  Unfortunately for me, it was around the time I got sick.  However, one friend joined the club while all three kept skating in the group lessons.  One of the benefits of being in the club means you get to solo in the club winter show.  Hence my friend skating tonight.  I had cut her music about a month ago and this is going to be her competition music and with some modifications (harder jumps) it will be her routine for this year's competitive season.

Kid drove Mum and I to the rink.  I knew I didn't have to walk far since it is a small place.  However, I did have to bundle up since I can't keep warm for beans anymore.  Luckily my friend that was performing was there early and sat in the top row of seats close to the front door.  It was easy to toddle over and sit down with her.  Our skating coach showed up next and then the male member of our little skating cohort.  Our fourth member was a no show but with a new baby to deal with this wasn't a surprise.

We all chatted up a storm and they all asked how I was doing.  Everyone said that they missed me.  Turns out the guy only came to the show because he found out that I was going to be there.  I got the warm fuzzies.  Then my coach asked me if I was going to get back on the ice and I lost it.  I started crying.  I told her that I was getting a wheelchair on Monday since I am having so much trouble getting around.  I couldn't stop crying until she changed the subject.  I miss this so much.  I miss them so much.  I miss the smell of the ice.  I miss lacing up my boots.  I miss the sound of my blades etching deep grooves in the ice.  I miss skating in shows.  I miss being nervous before competitions.  I miss the silence of the rink during test sessions.  I miss all of the hard work for one minute and forty seconds of skating before judges.  I miss stretching out on yoga mats in the back of the rink.  I miss the weird stares we get from parents as the three adults start jumping rope in the rink lobby in our skating dresses.  I miss wearing crash pads that make my butt look even bigger than it already is.  I miss chatting with my coach.  I miss talking during group lessons.  I miss screwing around with various tricks with the other adult skaters.  I miss the rink gossip.  I miss this.

My friend did a good job with her skating.  They put her at the end of the show.  This is the kiss of death for an adult skater.  We stiffen up easily.  She told me later that she had lost all feeling in one of her legs by the time they let her on the ice.  She still did well but missed her Axel.  I could tell she was stiff.  She didn't skate as fluidly as she normally does.  Even so it is always good practice to get out in front of an audience.  I can't wait to see her skate in the competitions in the spring.  She will be spectacular.

Friday, November 26, 2010

My First CFIDS Thanksgiving

It was a nice day.  A very nice day.  My Mum flew here to keep me company, help me with dinner and to spend time with our family over Thanksgiving.  My husband had the day off and my kid is still here (he will be leaving for college next year).  I slept as much as I needed to and got up at my normalish 11am.   Mum and I had our usual soft boiled egg and toast for my breakfast/her lunch.  It seems to be the best breakfast for my body.  It likes the protein and carb combination. 

After our meal I made GF brownies from a mix and got that in the oven.  Mum, hubby and I prepped the turkey.  It was too heavy for me to lift, a measly 12 pounds.  I have no muscles left.  Anyway, he lifted it for me while I slimed it with olive oil and herbs.  After adding the sherry to the cooking pan, draping oil soaked cheesecloth over the top and tenting with foil, hubby lifts it into the oven.  I am exhausted.  Mum and I clean up a bit and I get my kid to empty out the dishwasher so we have somewhere to pile the dirty dishes.  I'm really beat.  

I go lie down in bed and stare out my window for a while.  The sun is barely breaking through the overcast sky and I'm looking at it through the bare branches of the Linden tree in the front yard.  I think of the cold tundra of Alaska.  I would love to go there someday.  For some reason I'm fascinated with Alaska and the wilderness there.  Like Alaska the sun doesn't bring any warmth today.  It is quite chilly outside and I'm glad I'm in my warm bed.  I put on the radio and listen to a lady talking about the lyricist of Guys and Dolls.  Of course I can't remember his name just that he would have been a hundred years old if he were still alive.  I listened to stories of his life, of his getting in a huge fight with Frank Sinatra and punching the leading lady in the nose.  I add more blankets to the bed and drift off to sleep with the smell of rosemary and turkey filling my bedroom.  I wake up two hours later thoroughly refreshed.

I put on my new black slippers with little white kitty paw prints that my Mum got for me when we went grocery shopping.  I wandered out to the kitchen and called my husband to help me with the turkey.  It hadn't been basted in the two hours I had been sleeping.  He pulled it out of the oven and it looked and smelled spectacular.  I basted it and he shoved it back in.  I called my son in and loaded up his arms with vegetables from the fridge and supplies from the pantry.  This dinner was going to be a group effort for the first time ever since I've been making turkey dinners.  My son prepped the green beans; my Mom prepped the potatoes; I dumped the bag of carrots out in a pan and measured out the ingredients for the Pepperage Farm stuffing.  It was to be a simplish meal.  A combination of partially prepped food and stuff from scratch.  Anything that would make things easier but still tasty and healthy.  The menu was all natural turkey from Whole Foods, Pacific Foods GF turkey gravy, home made mashed potatoes, carrots, greenbeans, peas, Pepperage Farms stuffing mix and frozen dinner rolls and GF Against the Grain frozen rosemary rolls.  The only butter used was for the rolls and in the mashed potatoes.  The only indulgence was the GF brownie sundaes for dessert.

It was only the four of us for dinner but I was happy.  I didn't feel left out like I usually do.  Everyone had pitched in to help with the meal.  Hubby had lifted things and taken care of the basting after I showed him how to do it.  Kid prepped vegetables and did dishes and set the table.  Mum helped me with everything.  It was wonderful.  The only thing that bummed me out is that my stomach has shrunk since I have been eating much smaller meals than I used to.  I couldn't eat a huge meal or even have seconds.  I did have a wonderful meal that was delicious with my family. 

I was tired again so Mum and I sat and watched the Rockettes Christmas show on PBS.  Again I was grateful for her company.  Usually I end up watching stuff like this on my own.  Instead I could hear my Mum's foot tapping out the beat of the music on the television while I thought about both of our past involvement with theatre, shows and ballet.  It was a shared moment that made me very happy.  Hubby walked in and found out that I was cold so he added more wood to the stove and put a blanket over me.  What a wonderful day.

Thursday, November 25, 2010

The Parrot

A young man named John received a parrot as a gift. The parrot had a bad attitude and an even worse vocabulary. Every word out of the bird's mouth was rude, obnoxious and laced with profanity. John tried and tried to change the bird's attitude by consistently saying only polite words, playing soft music and anything else he could think of to 'clean up' the bird's vocabulary.

Finally, John was fed up and he yelled at the parrot. The parrot yelled back. John shook the parrot and the parrot got angrier and even more rude. John, in desperation, threw up his hands, grabbed the bird and put him in the freezer. For a few minutes the parrot squawked and kicked and screamed. Then suddenly there was total quiet. Not a peep was heard for over a minute.

Fearing that he'd hurt the parrot, John quickly opened the door to the freezer. The parrot calmly stepped out onto John's outstretched arms and said "I believe I may have offended you with my rude language and actions. I'm sincerely remorseful for my inappropriate transgressions and I fully intend to do everything I can to correct my rude and unforgivable behavior."

John was stunned at the change in the bird's attitude. As he was about to ask the parrot what had made such a dramatic change in his behavior, the bird spoke-up, very softly, "May I ask what the turkey did?"

Happy Thanksgiving Everyone!!

Tuesday, November 23, 2010

Other Perspectives on the Holidays

Some excellent suggestions for coping when you don't feel up to it:

A 64 page planner for Thanksgiving extravagance:

BTW, the 64 page planner was what got me got me into trouble this year.  I have been trying to convince myself that simple was the way to go by preaching this view to anyone that would listen.  Well, Craftzine published the link to the planner on their Facebook page and I had to comment on it.   I just couldn't leave it alone.  64 pages?  Really people?  Does it need to be that complicated?  After some banter amongst various commentators the whole FB entry disappeared. 

But I was left thinking about my reaction to it and the holidays in general.  And thus was born my very long previous post.  I'm sure I'm not done discussing the holidays.  After all this is my first one with CFS and I had issues even before I was sick.  CFS is going to put a weird unexpected twist on things.

As to the planner, it is very useful if you are needing to plan a large party; if you aren't used to cooking for groups of people;and/or if you need assistance organizing things.  Don't let the length put you off it has lots of good lists, charts and timetables in it.

Christmas Confessions


Christmas Lights
I've struggled with the holidays even before I was sick.  I still don't have them sorted out.  I've never managed either the Martha Stewart version or the Norman Rockwell version.  Although I have tried to attain these on several occasions.

So here is some of my weird background:
  • I come from England my family has very different ideas of the holidays from Hallmark et al.  We don't have Thanksgiving.  The house is decorated Christmas eve with a small tabletop tree and a few heirloom ornaments and the decorations stay up for the 12 days of Christmas.  All of the kids' presents fit into a pillow case at the end of their beds.  Only the rich upper class had the Dickens' version of Christmas.  Being a blue collar family, we were more like a modern day Tiny Tim household.
  • I emigrated to the US in 1969 which made family get togethers during the holidays an impossibility but our standard of living shot through the roof.  I still remember the first Christmas here as a kid with a tree that hit the ceiling and more toys than I knew what to do with. 
  • Since we had no family in the States, one of my dad's coworkers adopted us and we spent the holidays with his large family.  My sister and I would spend the entire visit running around the house with the four younger kids.  The two older kids hung out with the grownups.  Eventually we moved away and no longer spent holiday's with them.
  • As I grew up my Dad's alcoholism took hold of him and by my teens he spent most holidays locked up in his bedroom blind drunk.
  • So my sister, Mom and I rallied together and cooked, decorated and celebrated as a tight knit threesome.  We had fun together and enjoyed the holidays despite my dad.
  • Roughly about the time I started dating hubby Mom divorced which was a great relief to me.  Dad had turned into a mean drunk who was verbally and occasionally physically abusive.
  • Shortly after I got engaged my dad passed and my hubby's dad passed.  We never met each others dads.
  • I married into a huge family that had the oversized holidays that everyone attended.  They were fun.
  • Then ten years into our marriage, hubby's family had a huge fight and falling out and there were no more get togethers.  I still miss huge family get togethers.
  • Sister moved down south.  Brother moved to Hawaii.  Mom moved down south.  Sister and Mom moved up north.  Brother moved back to the Boston area but decides to spend all holidays with his wife's family. 
  • Three years ago hubby's Mom passed.
  • Presently my Mom and sister are six hours away by car.  Mom no longer drives.  Sister's fiance doesn't like coming here because he gets bored.  Hubby's family still doesn't do large get togethers.  I haven't seen my brother in over two years.
Hum.  Looking at this list no wonder I have holiday issues.  Anyway, families are messy and not always pretty.  So here I am with husband and son neither of which are into the whole holiday scene.

Prior to getting ill, I worked 40-50 hours a week, played taxi mom and took care of the food, cooking and bills as my share of the house chores.  I just didn't have time to decorate the entire house, cook breads, pies, cakes and multiple dinners even if it was only for three or four people.  I did try, particularly after we bought our house ten years ago.  I spent the first several years decorating for the holidays.  After doing all the holiday stuff by MYSELF for three years the novelty wore off one day when I was standing in the dining room in a sea of boxes holding an ornament in my hand faced with the enormous task of putting everything away with no help.  I vowed no more!  I'm not doing this again.  I don't have the energy.  No more huge tree that leaves every single needle in my living room rug when my husband tries to stuff it out of the front door.  No more packing boxes and boxes and boxes of ornaments away on my own.  If no one wanted to help with either the decorating or the cleanup I was done.  I was sad about it.  I am still sad about it seven years later.  I miss that holiday feeling of being a team that I got with my Mom and sister.  This just wasn't happening with hubby and kid.  I did all the work and they just weren't that into it.  I decided that my house didn't need to look like Christmas Tree Shops barfed in it.  But it still makes me sad.  I still miss the team that me, my sister and mom used to make when I was a teenager.  Despite the nasties that came along with an alcoholic father we managed to generate the holiday spirit between us.  We had fun.  We enjoyed ourselves.  We were merry.  I wish they lived closer.

My shrink and I discussed this ten years ago.  She asked me excellent pertinent questions.  What traditions are important to you?  Why are they important?  Can you make new traditions with hubby and kid?  Now, years later, I am coming to the realization that while I live with hubby and kid we are not a cohesive unit.  We suck at doing stuff together.  What happens when you put three introverts together?  We all go off and do our own thing.  Ten years later do we have any new family traditions?  I make a turkey dinner.  We trade presents.  That is about it.  I'll watch the parades on my own in between peeling potatoes and putting the carrots on.  Hubby is usually out in the garage playing with one of his cars and kid is playing video games.  Generally it sucks.  Hubby usually gets all sad that his parents aren't around and that nothing will be the same without them and he will never have a good Christmas ever again.  I can't stand being the sole provider of the holiday experience for my family.  It is tiring and lonely and generally not much fun. 

They have even managed to suck the fun out of cooking.  I love cooking.  I love experimenting with new recipes and flavors and ingredients.  However, remember that one holiday tradition I mentioned earlier?  The Turkey Dinner.  It MUST be composed of turkey, gravy, mashed potatoes, carrots, stuffing, rolls and Ocean Spray jellied cranberry sauce with chocolate cake for dessert.  There must be no diverging from this menu; no pies; no extra vegetables; no experiments. 

I have mixed feelings about this.  It makes the holiday way easy since it is a simple dinner to prepare.  I don't have to go on a recipe hunt.  I don't have to buy strange kitchen equipment.  I don't have to find odd ingredients that will sit on a shelf for the rest of the year.  We all love the dinner.  It is yummy after all.  I usually cook it about once a month for the entire fall and winter season.  But having an intractable menu means no creativity.  I can't experiment.  I can't make extra side dishes or apple desserts or pie.  This bums me out.  I actually loved it when his mom or friends joined us for a holiday meal because I could use the guests as an excuse to make cool extra food.

So what did our holidays morph into before I got sick?  I put up a white metal Christmas tree in our living room that is supposed to be a lawn ornament.  It comes in three pieces so I can set it up in under 10 minutes.  I hang some sky blue glass balls on it, fix a few broken bulbs and call it a day.  Usually the kid digs around in the attic and brings down a few more decorations that have special meaning to him and he scatters them around the house.  I make The Turkey Dinner.  We spend a quiet day at home each doing our own thing.  It is nice.  It is pleasant.  It is nothing like I grew up with.

I am dreading this year.  I'm sick now.  I can't cook.  I can't decorate.  I can't travel.  I have no idea if any of my family will come here.  I would love it if my sister came.  She would take charge and help me in the kitchen.  We could decorate together.  I know she has given up on the Martha Stewart thing herself.  She has simplified her holidays as well.  I wonder if that would change if we got back together this year?  I have visions of me, my sister and my mom sitting around my kitchen table peeling potatoes together.  Something I miss dearly.

Every year I keep trying to look forward to the holidays. To get excited about them but I just can't capture that feeling I had when I was younger. It isn't something that you can generate on your own. It comes from people hanging out with each other. It comes from people helping each other and taking care of each other. It isn't the tree or the presents or the food. It is the interactions with family and friends that make or break the holidays. I have no idea what is in store this year now that I'm ill.

This post was originally supposed to be a treatise on how it is okay to choose simplicity for the holidays.  That we shouldn't be slaves to Dickens, Hallmark or Martha.  That it is okay to do our own thing.  But the truth is I like oversized holidays.  I want that.  I miss the big family gatherings.  I miss the women hanging out in the kitchen cooking together.  I miss a pack of kids running around the house playing tag.  I miss the adults sitting around the table telling family stories.  No matter how many decorations I put up I just can't create that on my own and it makes me sad.  I've settled for quiet.  I've settled for simple.  I've settled for The Turkey Dinner and white metal Christmas tree.  And, if I am brutally honest, all the justifications in the world aren't making me happy about it.

Monday, November 22, 2010

My Tag Cloud

I set up my tag cloud to display the most used tag in the largest font.  I am very happy to see that after six months of posts 'humor' is at the top of the list :-)

Sunday, November 21, 2010

As Seen on TV

I haven't done a pop culture post in a long long time so I am due.  Here are some of the movies and shows I've been mostly downloading off Netflix instant watch.  If you are an SciFi nut you'll like half of them and if you're a chick flick nut you'll like the other half.  So I'm a girl geek :-)

It's Complicated
     Love it.  I'll probably watch it again.  The lead characters are great and there are some great funny moments in it, one of which had both my Mom and I in tears. 

Billy Elliot
    Again love it.  A movie about a boy that prefers ballet to boxing.

    Good date night movie.  Watched this one with hubby.  It is a good heist movie with Demi Moore and Michael Caine.  Good plot twist.  The two things I adore about this movie are the sets and costumes.  It is set in the 1960's.

The Imaginarium of Dr. Parnassus
     Love it but watch it when you're brain is working.  It is the last movie Heath Ledger made.  It is a wonderful weird movie that I'm going to have to watch again since I was in a brain fog the first time I saw it.  Terri Gilliam need I say more.

The Brothers Grimm
     While I haven't seen this one in a while I need to see it again.  Another Terri Gilliam movie with Heath Ledger.  Wonderful costumes, sets, makeup and a great plot.

     Another great date night movie.  Hubby and I watched this about a month ago.  It is a parody of the original Dragnet TV show which I am old enough to remember.  Dan Aykroid is brilliant in this.

     Good Mom and me movie.  I had never seen either the play or the movie before and I was pleasantly surprised at the sophistication of the plot.  Of course the music and dancing were fun too.  I can see why the revival did so well; the story is just as relevant today as it was when it was made.  The version available for instant view is the old movie.  I think the new one with John Travolta is only available on disk.

Something to Talk About
      Okay Julia Roberts movie.  Good way to kill time on a slow day.  I prefer some of her other movies such as Notting Hill or Runaway Bride.

Love Me If You Dare
     Strange French movie with subtitles.  I liked this movie because I couldn't anticipate what was going to happen.  However from a moral standpoint this movie leaves a lot to be desired.  This is a couple that needs some serious therapy due to a highly dysfunctional relationship.   Don't watch it if depressed due to the ending.  I have serious mixed feelings about it.  I was fascinated by it and had to watch the whole thing to see how it turned out but horrified by the cruelty the two main characters inflicted on each other.

Mystic Pizza
     Finally watched this movie to see what all the fuss was about.  Another good movie to kill some time on a rainy day.  Again not one of my fav Julia Roberts movies but not bad either.

New In Town
     Fun Renee Zelwegger and Harry Connick Jr movie.  Not cinematic excellence but I'm going to watch it again for the heck of it.

The Snow Walker
     I really liked this movie.  It is neither a chick flick or an SF movie.  It is a survival movie about a pilot who goes down in the Alaskan wilderness.  I highly recommend it.

     Another French movie with subtitles.  This one I liked a lot.  It is about a girl who finds a box of lost toys in her apartment and tries to reunite them with their owners.  Another strong recommendation.

Mrs. Winterbourne
     Good fluffy movie.  Shirly MacLane, Riki Lake and Brenden Frasier.

Confessions of a Shopaholic
     Only see if you a totally bored and are semi-brain dead and have run out of other things to watch on Netflix.

Marilyn Hotchkiss's Ballroom Dancing...
     I really liked this little film.  I had never heard of it before but enjoyed it.

My Best Friends Wedding
     A decent Julia Roberts movie.  I've seen it a few times on regular TV.

Rory O'Shea Was Here
     Fantastic movie.   Highly recommend it.  A bit heart wrenching in bits but a great message about living life to the fullest.

     Wonderful Indie movie.  I saw it the first time on my own and then had to show it to my Mom.  Yes, it is the movie that the new TV show is based upon but the movie is SO much better.  I highly recommend this one as well.

Science Fiction
X Files
Dr Who
Torchwood (a more adult orientated spin off of Dr Who: LOVE IT!)
Dead Like Me
The Tick
Stargate Atlantis
Stargate Universe (It is very dark and depressing so I only watched a few episodes.)
Dresden Files (LOVE IT!)

Chick Shows
Doc Martin
Robin Hood (BBC version)
Pushing Daisies
The Tenant of Windfell Hall
North and South

Other Randomness
Better Off Ted (comedy)
Art 21 (art documentary series)
Jeff Dunham (comedy specials)
Tudors (historic drama series)
Spongebob Squarepants (yes I'm a closet Spongebob fan)

Going through my Netflix history I can't believe the number of things that I've watched over the past six months of my illness.  I also can't believe the number of movies I've watched that I have absolutely no memory of.  I'll just have to watch them again.  I'm really going to have to start rating them all so I know when I go back over the list which ones are worth seeing again if I've forgotten them.

Saturday, November 20, 2010


With this illness there are always consequences.  Of course this is true even when well.  If you eat too much sugar you get a sugar buzz.  If you drink too much you get a hangover.  If you have too much caffeine you can't sleep.  But with this illness everything has a consequence.  No matter what you do the result is the same you end up on the couch unable to move.  Monday and Tuesday I was recovering from Baffled's excellent weekend.  Today I'm recovering from picking my Mum up from the airport.  Thank goodness my hubby was driving.  I wouldn't have been able to handle this minor disaster if I had gone on my own.

First a little background information: I live near Boston so Logan airport is the closest airport to my house.  Logan is an international airport and huge.  It has five terminals each with two floors.  Departures are on the top floor and arrivals are on the bottom floor of each terminal.  And thanks to the TSA we can no longer dally around the pick up area.  It takes ten minutes to drive the loop back to the terminal where your passenger might be. 

Now the story.  Mum flew in to visit over Thanksgiving.  Yay!  I was so excited that I didn't sleep well the night before.  I kept waking up.  And of course when I finally fell into a deep sleep the neighbor's dog started barking and woke me up.  Anyway, the day finally arrived and hubby and I went to the airport.  We drove into the passenger pick up area of the arrivals level of terminal C.   No Mum.  There were too many cars to pull up curb side so we decided to drive the loop and try again.  Well since the whole Big Dig thing in Boston, Logan has been under construction as well.  It took a bit of navigation on my husband's part to get around the loop correctly.   Of course, in true Boston fashion, the signage sucks and are even totally missing in the major intersection.  Not an improvement by my definition but hey no one asked me either.  Anyway, loop two.  Still no Mum.  This time there was curb space so we pulled over and sat waiting.  Still no Mum.  Finally the TSA cop came over and waved us away.  Loop three:  I decided to get out of the car and walk around the inside of the terminal to find out what was going on.  Hubby drove off for round four and five.  Now of course she flew in on a small airline that shares space with JetBlue.  I walked up to the only monitors in the lobby only to find out they only list JetBlue flights even though Cape Air shares their facilities.  So no flight information.  I go to the information desk, "could you find out for me if the Cape Air flight from New York has arrived yet please?"   "Cape Air doesn't fly out of New York."  "Oh yes it does.  My Mum is on the flight."   "No they don't."  I guess stupidity isn't limited to doctor's offices.  "Lake Placid."  "Oh.  Let me look."  Now check a map folks; Lake Placid is defiantly in New York.  This information person isn't going to win Where in the World is Carmen San Diego? anytime soon even though she works in an international airport.  Anyway, when she finally figured out that Cape Air does indeed fly out of Lake Placid NY she told me that it had been delayed and that I needed to check upstairs to find out when it was going to land.  Ugh.  I'm already tired.  My legs feel like lead balloons.  Off to the escalator.  I get to the upstairs lobby and all I see is United and JetBlue agents.  Then tucked in a corner I see one little desk for Cape Air.  By this point, the desk looks like it is miles away.  I feel like I am traversing several football fields rather than a few feet to the desk.  Luckily it wasn't busy and there was no line.  In fact the girl behind the desk was reading a book.  That is a first at Logan.  Anyway, she tells me that the flight was not delayed and that it had in fact already landed.  Okay, back downstairs and to the batcar.  I am so very lucky that there are lots of seats out on the passenger platform.  I am now walking as slow as molasses.  I sit down and wait for husband to arrive.  He picks me up and since there is no curb space we drive off again.  We stop at the deli on this loop so he can get a sandwich.  We have now been circling the airport for 45 minutes.  We make loop 6.  Still no Mum or parking so off we go again.  Loop 7: I get out again.  I make another walk through of the lower lobby.  The same three people are sitting there as the last time.  No one is at the bank of phones.  There is no luggage on the carousels.  And still no Mum.  I go back out to the platform and sit down again.  I'm toast.  I keep looking around while waiting for hubby to come back on loop 8.  We have now called the house to leave a message with my kid in case grandma calls the house.  We've called my sister in NY who called the NY airport to see if she had gotten on the plane, which she had.  My sister was now in a panic and all I wanted to do was sleep.  Crap.  We finally decided that we had to park the car in the garage and go look inside, check the bathrooms and get security involved.  So hubby beaches the car in the garage.  Of course the only parking spots were the furthest possible from the terminal C.  Hubby insisted that I stay in the car and try to sleep while he went walking around the airport.  For some reason he didn't want to peel me off the floor since I was close to collapsing.  So here I am on a lovely sunny day, sitting in a crappy diesel VW half sleeping in the parking garage of Logan airport with no idea where on the planet my mother was.  I was so tired I couldn't get really worried about it.  My sister was in a near panic and I was falling asleep.  What the hell is wrong with me???  I doze off a few times.  I finally rested enough for my brain to turn back on.  I turn on the car radio and find out that we had now been at the airport of over an hour and still no sign of Mum and now my husband had been missing for over a half hour.  Of course I didn't bring my cellphone because we had done this twice before flawlessly.  We had picked Mum up with her only waiting five minutes at most.  Not so this time.  I was actually starting to worry.  Finally, after one hour and fifteen minutes at Logan my husband comes into view dragging a suitcase behind him and Mum in tow.  I jump out of the car and yell "Yay!  He found you!"  We hugged a long time and finally climbed in the car. 

It turns out the plane was horribly late.  But when my Mum got here she walked out of the upstairs floor to wait since she didn't have any checked luggage.  She was on the departures floor instead of the arrivals floor.  Hubby somehow spotted her when she went back into the lobby to find a phone to call someone to let us know where she was.  I think we are buying her a cellphone for Christmas.

Friday, November 19, 2010

Quote of the Day: Success

Success isn’t about achieving something in the future, but about doing something right now that you love.

So doesn’t that mean I care about success? Well, sure, if you define success as whatever it is you care about, then of course you’re going to care about success. But then “success” really doesn’t have a meaning, does it? If it can mean anything, then it means nothing.

So forget about “success,” and just find joy, passion, love, awesome-ness right now, in this moment. *That* is a success you can achieve, without any self-help course, without any method. Just go out and do it.

-Leo Babauta, ZenHabits.net

Wednesday, November 17, 2010

The Little Engine That Couldn't

I think I can
I think I can
I think I can
Well maybe not

I've crashed again.  A bad one.  It started yesterday.  I was tired but I expected to be after my exciting weekend.  I had a friend over, I cooked several meals, I went out on a date.  Not a bit surprise that I was tired.  Today I was worse.  I thought I was okay when I woke up.  I had slept for 12 hours I should be okay.  I took a shower since I stank.  I hadn't managed one since Saturday night when I was prepping for my date.  The shower sucked the last of the energy out of me.  Instead of going grocery shopping like I wanted to do I was lying down on the couch because I couldn't even sit anymore.  If I got up I was dizzy and wozzy.  I lost my words again.  I couldn't complete sentences.  Now ten hours later at least I'm sitting up and able to type.   I'm not quite as dizzy when I stand up.  I thought my crashes like this were B12 related.   I've been feeling so good since I've been taking it that I thought I wouldn't have such a severe crash again.  This bums me out to no end.  Just when I thought I figured something out.  Just when I dared to think I was getting a little better.  This happens.  This sucks.

Tuesday, November 16, 2010

Thankgiving Dinner Cake

Okay, so maybe I'm a little obsessed with food lately.  After all I'm cooking a few times a week again.  I'm SO sick of eating take out.  Anyway, just found this

Funny Food Photos - Thanksgiving Dinner Cake
see more My Food Looks Funny

Yes, that is ground turkey and stuffing 'cake' layers with potato 'frosting' topped with sweet potatoes and marshmallows.  All you need to do is add a cranberry reduction to pour over the slices or maybe gravy or both.  I think this could work....

Sunday, November 14, 2010

The First Date

For the first time since I've been sick I went to a real movie in a real cinema!  Yay!!  Hubby took me to the matinee of Megamind and then we went for an early dinner at Cheesecake Factory.  We had a date!  A real date!! 

I got the idea from another CFS/ME blogger.  I prepped by showering the day before and then started the date at 2pm so we were back home by 6pm when I crash.  It worked!  I functioned like a seminormal human being and we had a great time!  Hubby was so happy that I was out of the house and spending time with him.  The only weird bit was being surrounded by little kids at the movie but what the hey.  We had a real date!!  Woohoo!!

Saturday, November 13, 2010

Gnocchi Yumminess

We just had the potato gnocchi for dinner tonight. It was quite good. I'm sure it would be out of this world eaten the same day. I'm glad they held up well in the fridge. I made a sauce out of left overs from the Baked Ravioli I made the other night. I can't believe I'm cooking again. It is wonderful to eat real home cooked food again. My husband walked past the stove and said "it is good to see you cooking again." Meaning that he is happy that I am feeling well enough to be able to cook. I do enjoy cooking most of the time. Sometimes it gets annoying. I have a much wider pallet than my husband so I like a much wider variety of foods. I can get bored with making the same thing day after day. Being so ill has made me try new things since I can't cook most of my old recipes. Most of them are too complicated. Anyway, check out the recipes over at Fast Foodie blog.

Math Silliness

My favorite: math, food and geek humor....

Recursive cupcakes:

Funny Food Photos - Cupcakes on Cupcakes
see more My Food Looks Funny

4 Things Meme

My blogfriend over at A New Kind of Normal started this delightful survey.  Feel free to copy, participate, link, etc. and otherwise get to know one another.

4 things in my handbag:
  1. Prescription authorization for my next doc visit
  2. Vacation schedule and alternate contact list for one of my specialists
  3. Datebook
  4. Chapstick
4 things in my bedroom
  1. My figure skating medals
  2. Pictures of my Mum
  3. Pile of clean laundry
  4. Pile of dirty laundry
4 things I've always wanted to try but haven't gotten around to yet
  1. Go rock climbing
  2. Hike a chunk of the Appalachian Trail
  3. Go winter camping
  4. Retire
4 things I enjoy very much at the moment
  1. The company of my cats
  2. The lovely fall weather we are having along with the colorful leaves (I live in New England)
  3. Sleeping anytime I want
  4. Sitting on the deck in the sun with my tea
4 songs I can not get out of my head (sorry I'm going to fall short on this one: there isn't much going on in there at the moment)
  1. The music Craig Ferguson plays when his fake Secretariat horse comes out to dance
4 things you did not know about me
  1. I was born in England and emigrated to the US when I was 7
  2. Both of my parents were skaters in a circus
  3. According to the Myers Briggs test I am an extreme introvert (yes, I had to and am still learning social skills)
  4. Some of my jobs have included pipe organ builder, auto mechanic, laser jock, and sound engineer for summer theatre.

Cooking with Friends

I spent a wonderful afternoon with a dear friend. She came over and we made gnocchi together. We both cook and we are both foodies so this is a natural thing for us to do. Thing was I was tired even before she came over. I was doing fine until I showered. Gee, I didn't want to smell awful and have stringy hair while my friend was here. What a surprise!

Anyway, we had a great time talking politics and classism and food while trying to make these little bites of potato dumpling love. They came out wonderful. We also made pumpkin ones which I messed up (I put too much flour in them) but other than them coming out a bit chewy they had a wonderful pumpkin flavor to them. Of course they are both GF. We made a mess, were covered in flour and stepping on dumplings that had dropped to the floor and generally had a fantastic time.

Of course I paid for it. I put the gnocchi away in the fridge. I was too tired to continue with the sauce phase of the cooking. Luckily they keep well in the fridge and freezer. I'll have to make a nice cheese and panchetta sauce tomorrow for them. The pumpkin ones will be getting a butter and sage sauce. I collapsed on the couch and closed my eyes. Exhausted but very happy. It is wonderful to have friends over! It is good for the soul!

Thursday, November 11, 2010

And Now For Something Completely Different.....

Small Victories

America's Test Kitchen

I made a kick ass dinner last night.  Hubby drove me to this cool Italian grocers so I could get really yummy supplies.  I used the Baked Ravioli recipe from America's Test Kitchen's Cover and Bake cookbook but used my GF ravioli for me.  It is easy to make but a little fussy so I needed to do this on a relatively good day.  Of course I sit at the kitchen table to chop things and get the meat out of the sausage casings so the only stand up work I had to do was sauteing and assembly.  It is a three step process, boil the ravioli and saute the onion, garlic and sweet sausage meat, then assemble and top with mozzarella and Parmesan and then bake.  It was awesome!  I'm really glad we got the high end ingredients instead of the prepackaged crap from the supermarket.  It made such a difference in the food.  I am so happy I made such a nice dinner.  I think it was the best one since I've been sick.

Joke of the Day

You know you are chronically ill when...

you wear out your slippers before your street shoes.
you go pajama shopping instead of dress shopping (online of course).
you wear out your bathrobe before your coat.

Wednesday, November 10, 2010

One Potato, Two Potato, Three Potato, Four...

I feel like the proverbial hot potato today.  I got a call from the infectious disease doctor this morning and they are now done with me.  After 18 vials of blood the only things they found was a slight B12 deficiency, a slightly elevated thyroid number and high inflammation numbers.  None of which seemed to concern my primary doc.  So now I am getting a referral to doctors number four and five, an endocrinologist and a rheumetologist.  So back to waiting.  I'm guessing it is going to be a month before I get to see either one and I'm also guessing that they will want to take more blood samples.

Tuesday, November 9, 2010

Quote of the Day

Buddhist Quote of the Day

All states that can be returned to external causes are obviously not you, but that which cannot be returned to anywhere, if it is not you, what is it? Therefore, you should know that your mind is fundamentally wonderful, bright, and pure and that because of your involvement with the things of the world you have covered it up and lost it. In this way you are caught on the endless wheel of becoming this or that, sinking and floating in that sea of endless becoming. Awaken yourself now to your own bright mind.

-Surangama Sutra
From "The Pocket Buddha Reader," edited by Anne Bancroft, 2000.

Monday, November 8, 2010

Christmas List

I'm starting my Christmas list.  And number one on my list is an art kit.  On the odd days that my brain is functional I'm bored.  I used to draw and sculpt when I was in high school and college.  I think it is time to take this up again.  Since I haven't done this is over 20 years I have no trouble stating with art kits that have instruction books in them.  I like this one since it has a little bit of everything:

It is from Walter Foster who makes art supplies.  I probably own some somewhere.  I also like their calligraphy kits (another art form I haven't done in decades) and pencil drawing kits.

Funny You Should Mention That

Talking of thyroids look what just popped up at Zenfully Delicious - Hashimoto's Thyroiditis  This is the type of thyroiditis you typically get post viral infection.  It also explains that my high TSH number means that I'm hypothyroid not hyperthyroid which makes way more sense.

Some more info:

GF Pancakes

Scarfed from

Fro those in the US Bisquick just came out with gluten free mix.  It makes "normal" tasting pancakes!  Yay!  Since I make them for one, I just mix up the wet ingredients and only use half putting the rest in the fridge for the next day.  Then I mix the half wet with half dry and *poof* pancakes for one.  Of course I usually mash a banana in to it.  These are the first non yucky pancakes I've had in the five years I've been GF.  This is very exciting!

Sunday, November 7, 2010


Good God what is happening to me?  Friday I was in a great mood.  My cranky husband couldn't even put a dent in it.  I felt wonderful even if my body didn't.  I managed to grocery shop and make dinner.  I was on top of the world.  Today I crashed and burned hard.  I had a little tumble with depression.  What is it with the wild mood swings?  I can understand being a little moody but these are severe swings between extremes.  What is going on with my body?

I just read about all things thyroid and my blood number is slightly elevated only 0.5uU/mL above normal but my symptoms more closely match hypothyroidism rather than hyperthyroidism.  My body is so out of whack it isn't amusing any more and I'm just not understanding what in hell is going on.  Bizarre to say the least.

It Hurts

This isn't fun for me.
I miss the person that I married.
You are broken.
You are punishing the entire family.
Our marriage is worn out.
Pushing you around in a wheelchair is not my idea of fun.

Don't get me wrong, I'm not always this miserable, but this weekend just takes the cake.  My defenses are down and I just don't have the fight left in me to deflect these missile attacks.  I've been locked up in the house for days and haven't had anyone to talk with.  My kid has even been sick so he is even more morose than his usual teenage boy self.  After six months of these comments it is wearing me down.  I'm getting depressed and crying a lot.  I feel like I'm alone.  It is just me, my illness and my cats.  While I have moments where I feel totally worthless I try to remind myself that I have given up my career for these two.  I spent the last 17 years taking care of my kid and the last 20 taking care of my husband.  I've lost promotions because I couldn't work late or had to leave often to take care of the sick kid.  I didn't get to go back to school to get an advanced degree because I was too busy being wife and mom and full time employee.  In my field you have to put in long hours to get ahead.  40 hours doesn't cut it.  I can't tell you how many times I've been passed over due to the mommy factor.  While this stinks I made peace with it years ago.  I'm happy that I could be a wife and mother.  It was more important to me than being A1 engineer.  I have provided food, income, nurturing and health insurance for my family for 20+ years.  Even though I've been ill for six months, due to the fantastic job I have (still have waiting for me), I got full pay for 6 months, 60% pay for the next two years and all my insurance premiums paid in full.  Even while I'm sick I'm still providing for them.  But apparently this isn't enough.  This isn't good enough.  20 years wasn't enough.  I'm not interesting enough or entertaining enough or provide enough meals or cleaning services.  I'm so jealous when I read of others whose spouses arrange for trips and take them places and spend time with them.  I'm just a lump on a couch that occasionally gets asked if I'm ok.  I'm broken.  I'm alone.  And very very sad..........

Friday, November 5, 2010

Cranky Pants

I have my cranky pants on.  I put them on just before dinner.  As I've mentioned before everything about the dinner ritual can get contentious in my house.  Dinner is almost never a pleasant experience anymore and I dread it daily.  To make a short story long....

I had an excellent morning.  After the neighbor's dog woke me up for the millionth time this year, I spent the morning lounging in my favorite chair reading Craig Ferguson's autobiography American on Purpose.  It is a hoot and I highly recommend it.  That guy can write and make even horrendous stuff funny.  Anyway, so there are me and the cat enjoying our quiet warm house on a blustery rainy morning.  Finally my kid got up around 1pm.  Turns out he is now sick.  He caught it from hubby who had been sick since last Saturday and is just getting over whatever he had.  Since I was feeling pretty chipper, I decided to make my little germ factory drive me to the supermarket.  $300 later we drove home with tons of groceries.  We were both in good spirits at this point but I was dragging.  I left my sick kid to put all the groceries away while I curled up on the couch with another book, Jim Butcher's Grave Peril.  It didn't take me too long to end up closing my eyes for a while.   I think my foul mood started during that rest.  While my body craps out on me like this, my mind often remains very active.   It gets restless and bored while my body has to take time off to recover from whatever abuse I laid on it.  So I was off thinking of food, planning elaborate meals I couldn't possibly cook and generally annoying myself with ideas that were beyond my body's capability.  Because the mind got restless my body followed suit.  Instead of taking the much needed nap I got fidgety but couldn't really do anything about it.  I was on the couch with the regular TV and nothing good was on.  I was stuck.  Too tired to read and nothing to do.  I found myself waiting.  I wanted my husband to come home to keep me company and to talk with me for a while.  I called him to remind him to pick up my new meds from the drug store and got a surly person on the phone instead of the loving attentive hubby that I was craving.  (cue whiny voice) I know he is at work.  I know he is busy with other stuff.  But sometimes I am in an unreasonable mood and this afternoon was one of them.

He was late coming home.   I had an odd feeling that I couldn't start dinner before he got here.  After he arrived I found out why: he had made plans to go out to dinner with the guys tonight.  He offered to skip dinner which is unlike him, which means what he really wanted to do was eat with the guys.  I had just bought all the food for dinner at great energy expense on my part (I just laid on the couch for three hours and still felt beat) and now he tells me he wants to eat with his friends.  This is just a bad confluence of events.  He is big on family dinners.  In order to please him and maybe for once have a peaceful meal together, I went out of my way at great expense to get food into the house, cook a nice meal and now he wants to duck out.  Normally I don't mind him going out but I had been craving his company, looking forward to a real family dinner and was dead on my feet.  My dream was shattered.  My good intentions wasted.  And did I mention I was tired?  I wasn't exactly mad yet but I was a powder keg.

While I was sitting at the table going through the recipe I was going to attempt, hubby was gnawing away on the loaf of fresh bread I had just bought.  I looked at him and asked him to break off a small piece for me and he jokingly pushed a crumb over to me.  I blew.  I mumbled a few expletives under my breath that I'm sure he caught wind of while I stormed off to another part of the kitchen.  He suddenly became very helpful with dinner which is unusual for him.  Probably a case of the guilts.  I guess he really wanted to go out.  He hasn't gone for quite a while since he has been so busy working. Like I said normally I don't begrudge him that.  Today I was tired and I have an amazingly short temper when I'm tired. 

So this is the point where I put my cranky pants on.  I put together dinner while he hovered around trying to be useful.  Again very weird behaviour on his part.  This is normally what I crave but I was too pissed off to enjoy.  I shocked myself and made a very decent Chicken Saltimbocca on my first try.  A little salty but pretty good.  I want to switch to some better ingredients next time but it is worth trying again.  I couldn't believe how easy and fast it cooked up.  For the recipe go here.  Just type in junk@junk.com when it prompts you for an email address.  (I didn't do the flour dredge and it came out fine.)  I was so tired by the time I was done even though it was really easy.  I should have taken him up on the offer of no dinner but I didn't want the meat to go bad.  And maybe I was being a tad stubborn.  Like I said just a bad confluence of events.  We enjoyed the dinner.  The kid picked the prosciutto off but ate the chicken.

Now, kid is upstairs being sick.  Husband is out with his friends.  And I'm stuck by myself at home on a bad TV night.  I'm still cranky and restless and bored.  Crap I hate this.  And I was in such a good mood this morning.  ARGH!


Thursday, November 4, 2010

ID Bloodwork Round 2

I went for another visit with my infectious disease doctor and his fellow yesterday.  This is at a huge hospital in downtown Boston so it is scary that the staff know me now.  Anyway, I got what I consider some very good news.
  1. All of my inflammation markers are going down.  This means that whatever I had my body seems to be recovering from it.  Yeah!
  2. My thyroid is out of whack.  Now this I find a bit weird since I had it tested back in June and it was normal but the ID doc told me that sometimes there is a delayed thyroid reaction to an infection.  They took four more vials of blood to check all things thyroid and I should hear back in a week.  If the second tests confirm the first it is off to endocrinologist to get some meds.  In a stupid way I hope it does come back positive since thyroid problems are relatively easy to fix.  Even if this doesn't cure me at least I will feel way better and that is a step in the right direction.
  3. She (the fellow) put me back on the B12.  The odd thing is she said that the B12 shouldn't effect me as fast as it did.  This is making me doubt myself: was it some kind of placebo effect?  Am I mentally deranged and making myself sick?  I'll have to ask my regular doc about this and/or my shrink.
  4. He finally heard what I was saying about lack of energy vs tiredness.  He is talking to a colleague at MGH about my participating in an XMRV study.  I find this very exciting on two fronts.  First that he is now seriously considering CFS as a potential diagnosis (which isn't good but it is validating) and second, as a scientist and patient, I am very excited to do anything to further the information on XMRV and CFS.  We need a cure.  Even if I end up not having this disease there are millions of others that need help.  While I'm too sick to do anything else at least I can be a guinea pig to further our knowledge and this makes me very excited.
So all in all a good visit.  I crashed hard afterwards which was a bummer.  I was having trouble even hobbling around the house.  Still haven't gone shopping.  Doubt I will get there today.  I have an appointment with my regular doc regarding my stomach issues and then it is off to the chiropractor.  Looks like this week is all restaurant food.  Bummer.

Wednesday, November 3, 2010

What Not To Eat

I don't know if you have ever seen this, which is very cool by the way:

What the World Eats, Part I

So here is the Homer Simpson version:

funny food photos - Wait, Homer is a Glutton?
see more My Food Looks Funny

Tuesday, November 2, 2010

Treatment News from the UK

Surprising results from a survey done on ME/CFS patients on the effectiveness of various treatments including: pacing, graded exercise, supplements, yoga, behaviour therapy and many more.  spoiler alert: graded exercise does NOT work.  No surprise there.


Pain Pain Go Away

Well the Celebrex wore off yesterday.  OMG I have never herxed that bad coming off that stuff.  I usually feel a little extra joint stiffness when I stop taking it.  I've been on and off the stuff for my osteoarthritis for years.  I used to take Vioxx for it before it was taken off the market.  But back to yesterday.  Normally I would say I was hit by a bus but this was more like being run over by a dump truck.  A really big dump truck.  Like....
Scarfed from
See the guy leaning up against the wheel?  It was BAD.  "How bad was it?", you ask.  It was so bad that one of my really bad headaches woke me up at 4:30am.  Out of a dead sleep.  I had to get up and take some pain meds, which I wasn't supposed to touch so my stomach could recover, and then sit watching TV hoping I wouldn't throw up from the pain.  It was a bad morning.  So today despite what my doctor said I took my Celebrex. 

I'll take the blue one.
Now I feel human again.  I have some pain but it is mild.  I am not under attack from the killer headache monster who can morph at a moments notice into a migraine.  I'm a little achy and the head is a bit twingy.  I guess the headache monster doesn't want me to forget it can attack at random.  He is probably lonely and just wants some company even though he isn't welcome here.  So even though I have some pain and even though I still can't get off the couch much,  I am happy today.  Yeah me!


Monday, November 1, 2010

Round and Round We Go

I ended up back at my docs on Friday with lots of bowel pain and problems digesting my food.  He took me off B12 and Celebrex and Protonix and put me on Nexium.  I can now eat but I'm getting stupidly tired and weak again and everything HURTS again.  OMG, either I can feel okay and not eat or feel like crap and be able to tolerate some food. 

So I started looking into stomach issues and CFS and ran into two interesting items:  CFS patients have low stomach acid (as far as I know this is only anecdotal since I haven't found any published papers on it yet) and there is a specific gastric bugs that show up in CFS patients.

Here are the links for further reading:

Low Stomach Acid in CFS Patients

Stomach Virus

Chronic Fatigue Syndrome Linked To Stomach Virus
ScienceDaily (2007-09-17) -- Chronic fatigue syndrome, also known as ME, is linked to a stomach virus, suggests new research. The researchers base their findings on 165 patients with ME, all of whom were subjected to endoscopy because of longstanding gut complaints.

This makes me wonder if my infectious disease guy is onto something.  He is worried that something is wrong with my guts.  I'm now looking forward to seeing him on Wednesday.  I am going to bring up the whole low stomach acid thing and see what he has to say.  My stomach problems started with the B12 doses not the start of my pain meds but I was put on them since I was eating a lot of aspirin.  There was definitely a problem with my stomach even before I got chronically ill.  I had to take calcium, magnesium and zinc supplements or suffer leg cramping when I skated.  I also had to eat large servings of protein to keep my energy up.   I had to balance my meals very carefully to keep my blood sugar even and my energy at a constant level. If I had a vegetarian meal I was hungry and tired within a few hours of eating.  I remember being concerned about how much meat I was eating but it was the only thing that stopped me from being hungry and/or tired later.  We are basically working backwards: I have a documented B12 deficiency, now we have to find out why and then find out the cause and hopefully there will be a cure.