Friday, December 31, 2010


The FDA has a form that you can use to report fraudulent medical devices:

This form is for non life threatening problems.  For life threatening problems use

Power of the pen!!  We can protect ourselves and others.  Please report any crackpot cures to the FDA.

Quack Quack

While I love my relatives to bits and I know they are trying to help, I could do without the magic cures.  Worst thing is I don't know how to tell them it is all a crock without offending them particularly since they got the information from a doctor that used these doohickies to cure her own FM.  While I don't doubt her feeling better I have serious doubts about the scientific basis of the patches she used.  There is a list of papers on the website but they are all self published, i.e. not peer reviewed, and some don't look like they were published at all just formatted in the style of science papers.  To top it off, the trials are not double blind with a control group receiving a placebo, which is the gold standard.  The thing is I know the doctor is a nice person but there is no way to tell if the patches actually did something, the doc had a placebo reaction to them or it was the doc's time to get better.   But crap, companies passing on pseudoscience to sick people just frosts my onions.

According to this web site if I just spend $300 I can get rid of all that pesky electromagnetic radiation (EMF) that is making me sick.  Now, prior to getting sick I played with lasers, used optical modeling software and generally know more about EMF fields than the average human walking this planet.  When some company declares that if you plug their $300 widget into the wall to negate all that EMF floating around trust me it is a crock.  Tidbit from physics class: all light even that from the sun is EMF even light from a candle so if their little widget worked your house would turn into a blackhole and none of your appliances would work.  Of course they don't actually explain the circuitry or the science behind why it works, but you will have a magic cure.

They also claim it is all the pesky wireless devices that we have in the home are the culprits while ignoring the fact that the sunshine streaming in through the window has a stronger field than your phone.  Don't believe me? Just wait until the solar flares start up again over the next few years.  I'm betting it is going to wreck havoc on all wireless devices.  I do understand being concerned if I had a cell phone stuck to my ear all day.  There have been some valid studies done on brain tumors vs cellphone use but I think it has been well over two weeks since the last time I even turned my cell phone on and I haven't spoken on one since loosing my Mom at the airport last month.  I'm not a chatty Kathy and I'm not particularly fond of cellphones in general so I don't think wireless EMF has made me sick.  I also like the claim that it was exposure to wireless during my childhood that made me sick as an adult.  Um, let me think I was born in 1962, yup they had AM radios and wireless telegraph back then.  I grew up on Cape Cod back when it was fairly bucolic and phones still had cords attached.  We did have FM radios by then but computers were still the size of a small house.  What a crock!

Stuff like this makes me so angry.  It is a company taking advantage of people with very little science background who are desperate and very very sick.  It just makes my blood boil.  I wish these guys would put this much effort and money into solving the real problem of XMRV.

"A fool and his money are soon parted."  -Thomas Tusser
"Let the buyer beware."  -Latin Proverb

Wednesday, December 29, 2010

Curiouser and Curiouser

Had my physical today.  My B12 has gone up 100 points.  Yay!  Other than being sick and gaining weight I'm in perfect health.  Even my thyroid numbers are back down to normal.  The only abnormality that showed up was low iron.  This is a new one so we are back to a GI workup which they decided against back in October.  They took 5 more vials of blood for iron and Celiac tests.  The Celiac test is going to be useless since I haven't been eating wheat for over 5 years.  Even if I had Celiac the test would come back negative.  I'm beginning to wonder about the IQ of my doc or maybe he is at the point of stabbing at ghosts since I'm still sick and he can't find anything obviously wrong.

Heh, I decided that it would be a good thing for him to see me crashed so I did too much yesterday and again this morning.  By the time I was in his office I had the shakes, couldn't walk straight and was having trouble speaking.  When I get that bad I also cry easily so of course he was asking me complicated questions and when I tried to answer I got so pissed off at not being able to talk properly I started crying.  I was also having trouble understanding him so when he asked what was wrong he got the dumb look from me.  I couldn't figure out what he wanted to know.  Then he asked if I was depressed which I'm not just having a bit of a cry.  I've already forgotten a good deal of the meeting and I was there for two hours.  I'm still baked.  I wonder how many days it will take to recover from this?  I think it was worth him finally seeing me at a bad point instead of my usual chipper self.

Sick Humor

The original website for this cartoon has succumbed to webrot.  The site I scarfed it from is here

Monday, December 27, 2010

Husband 3.0

After being married for over twenty years I couldn't in good conscious title this Husband 2.0.  He isn't the same person I married twenty years ago but that is a good thing.  He shouldn't be.  He has matured and in many ways much smarter than he was twenty years ago.  He must be coming into his wisdom as he ages gracefully.

Anyway, you know that I have posted many times about the strife this illness has caused in our marriage.  Well, a miracle occurred.  One morning about a month ago hubby woke up and accepted the situation as it is.  He is no longer angry.  I mentioned to him the other day that he had been much more pleasant to live with of late (no more hissy fits) and he told me about this strange day he had.  He couldn't explain it.  He said he wanted to change before that but couldn't.  He didn't like the way he was behaving or how he was feeling.  He was too angry I suppose and maybe it just needed time to get out of his system.  Whatever happened, grace of God maybe, he is now wonderful to live with.  Not perfect but wonderful.  He has been helping me with everything.  He always asks how I am doing during our first conversation of the day and he is genuinely concerned.  Most times I am okay but some days I burst into tears and he comes over and holds me.  He takes me for rides in the car to get me out of the house for a little while.  We've seen the neighborhood Christmas lights twice.  He has taken me shopping several times in my wheelchair even though he doesn't like me giving him directions (we haven't quite worked out the logistics of the wheelchair thing yet: I'm not used to being totally dependent upon someone else and not being able to wander off on my own and he hates being told where to go).  He has been helping me with food prep and cooking.  He makes sure I'm getting enough rest often telling me to go sit or lie down or nap.  He makes me tea or snacks when I ask.  He helps me out of the shower on bad days.  He has been taking me to my doctor appointments.

I am amazed at the transformation.  It is wonderful.  I am way less stressed and no longer feel guilty for being sick and a burden.  This crap happens.  It happens for no logical reason and it is no one's fault.  I decided a long time ago, long before I was married, that things like this are meant as life lessons.  We are given hardships to help us learn to be better people.  I wish some of the lessons weren't so harsh and so difficult but I wouldn't be the person I am if it weren't for my trials.  I am just so relieved that my husband is no longer in so much pain.  It was hard to see him suffer so much.

Friday, December 24, 2010

Christmas Carols CFS Style

Can't go out?  Crashed?  Here are some awesome Christmas songs....

Christmas Questions

Egg Nog or Hot Chocolate? While I like both I prefer home made hot chocolate.

Does Santa wrap presents or just sit them under the tree? Santa has to use paper bags now due to his arthritis.
Colored lights on tree/house or white? Both, white on the tree and colored on the house.

Do you hang mistletoe? Sometimes.

When do you put your decorations up? The weekend after Thanksgiving.

What is your favorite holiday dish? The fullmonty turkey dinner

Favorite Holiday memory as a child? Having our first tree that touched the ceiling after we moved to the US.  In England we only had a tree that sat on a table top.

When and how did you learn the truth about Santa? I was 6 and caught my Mom putting our presents in our pillowcases at the end of our beds (another English tradition).

Do you open a gift on Christmas Eve? Yes, we get to open one present on Christmas eve of our choosing

How do you decorate your Christmas tree? Plug it in.

Snow! Love it or Dread it? Love it

Can you ice skate? Absolutely.  I was competing before I got sick.

Do you remember your favorite gift? A small sewing machine the first year I was here in the states.

What’s the most important thing about the Holidays for you? Sharing a nice meal together and listening to all the family stories being told at the dinner table.

What is your favorite Holiday Dessert? flourless chocolate cake

What is your favorite holiday tradition? Going to midnight mass

What tops your tree? nothing, you have to see it to understand

Which do you prefer giving or receiving? Both.  I love shopping to get the right gifts for people but I also love getting presents (I feel like I'm ten again)

What is your favorite Christmas Song? Gloria, I can't remember the actual title, I'm having a CFS moment

Candy Canes: Yuck or Yum? The organic ones are to die for

Favorite Christmas Show? Grinch

Thursday, December 23, 2010


Well I seem to be done crying about it.  I am now happy and excited.  I just put together a menu that my kid will be able to help with.  It also turns out that I can make the meat sauce ahead of time which will help cut down on day of work.  I'm going shopping to the Italian grocer today to get the supplies which is also exciting: a trip outside the house!  So dinner is going to be a bit different this year, we're doing Italian instead of the roast turkey dinner since there aren't as many things to cook and we just had a full out turkey dinner last weekend.  In fact we are still eating the leftovers.

Italian Bread with garlic herb olive dipping oil
Mescalin greens salad
Baked ravioli with tomato sweet sausage sauce
Green beans
Flourless chocolate cake with fresh whipped cream

I also am thankful for some Christmas miracles:
The secretary at my doctor's office gave me a 2011 appointment calendar
My sister and mom sent my family presents even though I told them we weren't doing presents this year because of me loosing my job.
I found out that I'm getting paid my accrued vacation pay so we could buy my son presents.
I got all of the cards done and out the door BEFORE Christmas (sometimes this didn't even happen when I was well)
My relatives sent me the most gorgeous flower arrangement with a lovely card expressing their concern over my health.
Friends came over and helped my husband cook a full turkey dinner as a Christmas present.
They then gave me a lovely Reiki treatment that actually made me feel better.
They invited us over their adopted Mom's house on Christmas eve for dinner and socialising.
WPI is opening a clinic and are working on treatments!

I am ecstatic!

XMRV Treatments

Wonderful interview with the ladies of WPI.  The best news comes at the end of the video; they are starting to understand how XMRV is making us sick, they are opening a clinic and they might have treatments within a year.  How awesome is that!!   That would be the best Christmas present ever!

Wednesday, December 22, 2010

Life of a Cell

CFS is believed to be related to dysfunction in the mitochondria of our cells.  While the idea is somewhat controversial, it does make some sense since the mitochondria are the energy factories for our cells.  I wish I could embed these videos in my blog but you are going to have to scoot over to the Harvard web site to watch.  I recommend the one on mitochondria and the narrated Life of a Cell.  Now I am no biologist and I can't follow half of what they are talking about but the animation is just amazing and I am truly in awe of how our body functions.  Can you believe that all of these little cellular engines are constantly at work in our bodies making us able to eat, talk and breath?  It is truly amazing!  Don't worry I'm going to keep reading and learning biology.  Someday I will be able to interpret what they are saying in the videos.  Hopefully there will be a cure for CFS before then and I won't be posting that interpretation in this blog.

Tuesday, December 21, 2010

Poopy Mood

This is my first Christmas with Mr CFS.  I'm very very angry at him and we aren't currently on speaking terms.  In fact I'm doing the wifely thing and not talking to him at all.  He's being such a shit anyway.  He has made me miss every single Christmas event that we've been invited to.  When I did manage to go out to the Christmas ice show he crashed me hard for two days.  He has stopped me from shopping which is one of my favorite Christmas activities.  He has stopped me from cooking.  He has stopped me from planning anything.  He has stopped me from decorating the house.  I also miss my extended family, all of whom are off doing other stuff so I won't see them over the holidays.  Mr CFS basically has me under house arrest and is only letting me out for doctor appointments.  If I dare go off and attempt anything else he beaches me in bed or on the couch.  This sucks!  I'm angry.  I'm upset.  I keep crying.  And I am so not talking to that ass.

Not in the Mood

I just haven't been in the mood to write lately.  I think I've just had a bummer of a month and I'm still not recovered from my crash.  I am doing a bit better.  Today I made it to the chiropractor and made dinner before collapsing.  Now though I'm in a strange mood, have severe heartburn so I can't sleep, am restless since I've been lying on a couch for the last ten hours, I'm bored out of my mind but too tired to do anything about it.  Crap.  I hate this.  I want to get out of the house again.  I'm definitely getting a bit stir crazy.  At least in the summer I can go out on my deck and sit or lie down in the hammock to watch the clouds.  Instead I've memorized all of the Christmas commercials.  Blah.  What is even more of a bummer is that my eyes are all googly today so I can't focus on print which makes reading really hard.  What I need to do is settle down so I can sleep.  Sigh.  I'm tempted to go for a walk in the snow with my greasy wild hair and my bathrobe.  I might make it two houses down before I have to turn back.  Ugh.

Friday, December 17, 2010

Life Skills Magazine: Christmas and ME

Many of my blogging friends have written articles for this special edition of LSM. Enjoy!

Thursday, December 16, 2010

Spoon Theory: In Her Own Words

Fast Food

I vividly remember the very first time I tried to cook for real.  I was standing next to my mom in our kitchen in our Boston apartment.  I was seven and had just immigrated from England so that my dad could work in the brand new sports complex at Boston University.  He was off at work and I was home due to Christmas break.  Mom and I were going to make a pie together.  I don't remember what kind.  Could have been meat could have been apple.  My mom laid the cookbook in front of me open to the pie crust recipe.    She also piled the ingredients in front of me on the table.  I very carefully and precisely measured out each item in the ingredient list and placed it in the bowl.  I felt very grown up and wanted to do this perfectly.  After putting everything in the bowl I got to the instructions and realized that there were specific steps to follow and I immediately burst into tears.  I was mortified.  I had screwed up everything.  My wonderful mom consoled me and told me that it was okay and that everything would be fine and it wasn't a big deal.  Hence the memory is seared into my brain.

I've cooked ever since then going through various phases.  I've gone through the homemade bread phase, the baking phase, the vegetarian phase, the gourmet chef phase.  I'm still in the organic phase.  I am self taught.  I've only ever taken one chocolate making class in the now defunct Kitchen Etc store.  Since I have been cooking for 41 years now I have gotten quite good at it. The Joy of Cooking and The French Chef cookbooks no longer scare me and I have a huge collection of pans and utensils.  I also make a killer pot roast and flourless chocolate cake.

I have found that now that I am living the chronic life I have had to change my cooking style drastically.  I used to make elaborate meals where I even made the dinner rolls from scratch.  Nothing came from a box and everything was fresh.  The only thing in my freezer was ice cubes and the only cans in my pantry were cat food. 

The first adjustment I had to make was about ten years ago when I found out that I had osteoarthritis of the spine.  I have bone spurs on several vertebrae right at my bra line.  They pinch the nerve that wraps around my left lower rib cage and on a bad day makes it very painful for me to even breath.  Turns out my arthritis is aggravated when I hold my hands out in front of me for any length of time, i.e. doing any type of assembly work such as sewing or chopping vegetables.  I gave up sewing until recently and had to modify my cooking.  Since that day I gave up making dishes that required lots of vegetable chopping such as ratatouille and I gave up breadmaking from scratch.  Kneading bread sent me running for the bottle of pain meds.  I started hunting for anything that was presliced.  Thank goodness baby carrots had just some onto the market and someone had the bright idea ot sell presliced mushrooms (love my fungi).  So I couldn't make bread and ravioli from scratch anymore, not a huge loss.  A few minor adjustments and I kept on cooking.

The second adjustment came about five years ago and was massive.  I discovered I had a severe wheat sensitivity.  While I didn't have a true allergy (eating wheat didn't send me into anaphylaxsis), eating wheat regularly made me bloated, caused plumbing problems (to put it politely), caused horrible fatigue and severe brain fog.  It was affecting my work horribly and almost cost me my job. 

Now five years ago there weren't any prepackaged GF anything available.  You had to make everything from scratch and Betty Hagman's books were the only ones on the market.  I bought her books and found she couldn't cook very well (sorry) so I had to modify a lot of her recipes.  I found rice bread unpalatable so gave up sandwiches; one of my all time fav foods on the planet.  And to this day I crave pizza that tastes like the real deal.  I discovered that in the US wheat is added to EVERYTHING.  OMG, what is the deal with the American pallet?  Anything that came in a packet had wheat in it.  So I struggled along, made lots of rice, ate more vegetables and built up a new cooking repertoire.

Now the third adjustment.  I am on the verge of having an honest to God CFS diagnosis.  I am on the severe end of the scale.  I am mostly housebound and have the occasion several days running where I can't even get off the couch.  I go out for doctor appointments and now that I have a wheelchair I can go grocery shopping again.  I live mostly on my couch.   Thank God I have the internet and I love to read, write and watch movies or I would be having a nutty about now.  To give you an idea of how bad I am hubby had to buy me  a shower stool so that I could bathe myself.  Most days I can't stand up in the shower either I dont' have the energy or I get too dizzy and it is just safer if I sit.  You can imagine that as prime cook for the family this has caused some HUGE issues in our marriage and family life.  I've written about some the blow outs in prior posts.

So I'm in the middle of my third huge adjustment to my cooking.  I started the food blog Fast Foodie to chronicle some of the recipes and tips I discover along the way which can help other chronic chicks in the kitchen.  So what does my kitchen look like now?  What is in my freezer besides ice cubes and my pantry besides cat food?

We had to buy a fridge with a bigger freezer.  Most of my GF baked goods I buy frozen.  This makes it easy to defrost (keep fresh) as needed since I am the only family member with this problem.  The stuff is so expensive I don't want any of it to go to waste.

Also in there are bags and bags and bags of vegetables: chopped onions, sliced carrots, peas, chopped broccoli, diced squash, veg mixes.  There are also a lot of herbs.  I found these wonderful frozen cubes of basil, garlic, parsley, oregano and the like.  Each cube is the equivalent of one teaspoon and the garlic cube equals one bulb.  However since it is frozen fresh beware; the garlic is atomic and one cube has the flavor of 3 or 4 bulbs depending how long the fresh has been sitting around.

Packets of frozen rice.  This is a wonderful invention and I encourage you to look for it.  I've found it in my local grocer in the organic freezer section or at Whole Foods.  The rice is already cooked and flash frozen so all you need to do is heat it up.  Either it can be served as is or I tend to add it to soups or crockpot dishes.

  • Single serve packets of tuna. 
  • Many many jars of tomato sauce and cans of diced toms. 
  • Many cans of beans of different types; lentils, black, butter and baked.  I love how I can just rinse these off (except the baked of course) and dump them into a dish.  Very convenient. 
  • Several aseptic packs of chicken and mushroom stock.  Also aseptic packs of GF turkey gravy. 
  • Cans of peaches and pears.  I love eating fruit and can't get to the market often enough to keep fresh in the house all the time. 
  • Packets of all sorts of rice and pasta ( I prefer corn and corn blends to rice pasta).  I love different flavors of rice.  I must have every type of Lundberg rice mix they make along with some specials like bamboo green rice and Bhutanese red rice. 
  • Lots of packets of GF mixes for brownies and cakes.  And recently GF Bisquick mix which makes wonderful pancakes.
  • Bottles of different cooking wines; they have a long shelf life and add an easy burst of flavor. 
  • Boxes of risotto mix.  I can only make this on good days though since it involves too much stirring.

Indispensable Tools:
  • Rice cooker.  Must have!  Just add water/stock and rice, turn on and walk away. 
  • Crock pot.  Another must have.  Again throw stuff in, turn on and walk away. 
  • Mandolin slicer.  This takes way less energy to slice things up than a knife.  You just have to be careful not to take the tip of your finger off with it. 
  • A very good vegetable peeler.  I don't use this much just for peeling cucumbers but I prefer a weird type that slips over your finger to fit into the palm of your hand.  Very ergonomic. 
  • A bottle opener from Oxo good grips.  This takes very little energy and strength to open stuck lids.  Love the thing. 
  • Sharp knives and several cutting boards.  I try to use them as little as possible but they are necessary.  The sharper the knives are the less energy it takes to chop things.  It is worth it to invest in some good quality knives and keep them sharp. 
  • A good nonstick skillet with lid and spatter screen.  The screen allows you to cook messy stuff without having to clean up the stove afterwards.  Make sure the screen can go in the dishwasher so you have minimal cleanup.
  • Microwave oven.  Poohey on anyone that balks at this wonderful invention.  I use it to defrost my breads prior to toasting.  I cook the frozen vegetables in there in the serving dishes.  Hey, no pans to wash!  Bonus!  I also use it to heat up frozen rice.
  • Collander/strainer.  Another must have for draining and rinsing beans and pasta.  Again make sure it is dishwasher proof.
  • Food storage containers.  Keep all leftovers and freeze.  These can reheated in the wonderful microwave for homemade instant dinners.
Another adjustment I made is to sit down at the table to do the prep work.  I used to stand to cook but now I sit whenever possible.  Gotta save those spoons somehow.  Like my mom I pile everything I need on the table including bowls and measuring cups and spoons and then sit to chop, measure and stir.  BTW, I keep all of my measuring spoons in a coffee cup on the counter.  Makes it way easier to find what I'm looking for since I never liked having the little buggers chained together.  If it is a stovetop dish then I put the measured ingredients into separate bowls to take to the stove.  Yes, more dishes but that is why I have a kid and a dishwasher. 

I still haven't gotten to the point of making too much food and then freezing the leftovers.  No one in my house will eat leftovers except me and my freezer is already full.  However, it is a good idea and I might incorporate this strategy in the future.

As a chronic cook I am also constantly on the lookout for books and recipes that are fast, easy to make, have very few steps or I can modify as such.  Here are some resources:

Wednesday, December 15, 2010

Happy Day

I'm still crashed from my cold.  It is still here.  I'm still coughing.  However, I've had a nice day today.   I had a good doc visit.  This one was to go over an action plan to get me into the right docs so that I can fight for LTD.  I now have appointments for a CFS specialist at Tufts who is also a rheumatologist.  I also have appointments for an endocrinologist and a neuro guy for cognitive testing.  Yay!  I'm so happy that went well even though I was totally brain fried when I went there.  My son said "but mom you've been working on this for a week.  Of course it went well.  You got organized and wrote stuff down."  Out of the mouths of babes. 

Other happy things:
Finding the anti bacteria soap I just posted about.
Having a friend offer to come over and cook for us on Sunday.  What a great Christmas present!
Seeing some very funny videos on I can has cheezeburger
Discovering the Simon's Cat channel on YouTube

HIV Cure?

An American who has been infected with AIDS for years and developed a type of resistant leukemia under went stem cell treatment in Germany.  They injected him with stem cells from another patient with identical blood and immune system type except the donor is naturally HIV resistant.  They don't have
"a cellular doorway, called CCR5, that the AIDS virus uses to get into the cells it infects"
Once the new stem cells integrated into the patient he also became CCR5 deficient and hence the AIDS virus no longer had access to his cells.  The initial injection was done in 2007 and they only recently declared him cured (with the caveat that they can't really tell until they do a PCR on his cells post mortem).  Here is the news article.

Now here is the reason I'm excited about this.  Although this is a preliminary test and it was only performed on one patient and it is VERY dangerous procedure (high possibility of death), the dude survived and is AIDS free as far as they can tell.  The docs figured out the chemical key that AIDS uses, found a population of CCR5 deficient donors and performed a stem cell transplant that worked!  But how does that relate to CFS?  I'm wondering if XMRV possesses the same chemical key, CCR5?  If so, the same stem cell treatment might work.  If XMRV uses a different chemical key, are there any people deficient in the XMRV receptor, i.e. does there exist a population that can not catch XMRV?  If so, can stem cell therapy be used to transplant cells from the resistant population to the sick population?  Enquiring minds want to know.

Sick Humor

Things that make my geeky heart happy: soap in the form of a Petri dish with bacterial growth!

This lovely specimen and others can be found on Etsy.

Tuesday, December 14, 2010

Train Wreck

I haven't been posting much but that is because I've gotten derailed.  I'm an emotional wreck.  I hated the letter from the insurance company.  They don't believe I am sick which makes me feels horrible.  I got my termination letter from work which makes me feel adrift.  HR called me today asking me if I would return the keys to my toolbox.  I'm loosing my tools.  The things I plie my trade with will be gone.  I feel lost at sea with no sight of shore.  Then all the other crap got piled on top.  The only thing I seem to be able to cry about is the loss of Dominique's dog, Dekker.  I'm bummed.  I'm blue.  I'm crashed.  I'm still wearing my pjs and I've been up for 12 hours now.  I can't get off the couch.  Now my son wants me to meet with a military recruiter.  I just don't have it in me right now to do that.  I don't want to let my son go into that.  I'm going to have a hard enough time letting him go off to college never mind letting him go into the military where he might get injured or worse.  He has been my company while I've been sick.  He has been the one driving me to doctor appointments.  We've made friends over the summer.  I don't want him to go away.  I've already lost so much.

Monday, December 13, 2010

Crappy Week

This is only going to be a summary.  I've had a crappy week.  I already posted about loosing my LTD.  I got the official letter on Wednesday.  I wrote a post about it but lost half of it when I lost internet.  I'll post it later after I've rewritten it.

I got the official letter from work regarding my termination.  I've worked there for 12 years.  Apart from 5 months when I was unemployed I've worked continuously since I was 14, that's 34 years.  Needless to say I find being jobless odd and a bit disconcerting.

My kid just came downstairs and told me that someone from his scout troop died while skiing today.  That was a shocker.  I know the kid and I've met him.  Of course I can't remember but I did recognize the name.  My son wasn't friends with him per say but my kid is still in shock from the suddenness and finality of it.

Hubby went to a Christmas party last night and hung out there for three hours talking with his friends.  One of whom just got married in October.  On his way home he got in a horrible car accident.  His wife was ejected from the vehicle.  They were both medlifted to Beth Israel in Boston.  They both underwent emergency surgery today and are both in ICU.  We have no idea if they are going to make it.  He has multiple broken bones and she has severe internal damage.  She lost her spleen and one of her kidneys.  We are just waiting now for more news.  I know both of them.

Another friend of hubby's rolled his truck.  This one fared a bit better and is walking and talking fine.  But he doesn't have money to fix his vehicle.

One of my blog acquaintances, Dominique, over at 4 Walls and a View has to put her lovely pug down tomorrow.  I cry every time I read the post.  I adore her dog even though I haven't met him.  The way she writes about him I can tell they adore each other.

Wednesday, December 8, 2010

The Balancing Act

I just read an interesting article in the Huffington Post entitled "Six Ingredients for a Good Life".  The basic premise is that life is a balancing act.
"The true measure of greatness is our capacity to navigate between our opposites with agility and grace -- to accept ourselves exactly as we are, but never to stop trying to get better."

I love the author's ideas and think that even though I'm chronically ill they still apply to me.  Here is my synopsis:
We need to find balance between three pairs of extremes.  While either end is a good thing too much can lead to problems and a balance between the two ends is the ideal position.

  • Constantly seek to learn and grow, but accept yourself exactly as you are.
    Learning and growing require a willingness to look honestly and unsparingly at our shortcomings. Start with your own greatest strength. When you overuse it, it's almost surely a window into your own greatest weakness.  By being aware of my inclination to overuse a strength -- by recognizing my own vulnerability -- I was [sic] able to make a different choice.

  • Add Value to Others and Take Care of Yourself
    Gratifying our most immediate needs and desires provides bursts of pleasure, but they're usually short-lived. We derive the most enduring sense of meaning and satisfaction in our lives when we serve something larger than ourselves. Giving to others generates an extraordinary source of energy.

  • Focus Intensely and Renew Regularly
    Unlike machines, however, human beings aren't meant to operate at the highest intensity for very long. Instead, we're designed to pulse between spending and renewing energy approximately every 90 minutes.
    It's not the hours you work that determine the value you generate, but rather the energy you bring to whatever hours you work. The more skillfully you renew, the more energy you'll have.

    1. The first one I learned as in my yoga class years ago.  It is a Buddhist idea.  You always strive for perfection but know that everything is perfect the way it is now.

      The second one we, as chronic chicks, have to be careful with.  We are often at the extreme end of giving to others.  We need to pull to the other end and take care of ourselves so that we can get better.  I have found writing this blog, writing Fast Foodie and reading/commenting on other blogs is my way of giving back to the community in a way that doesn't deplete my energy stores.
      "Selfishness is about making your own gratification paramount. Self-care is about making sure you're addressing your own most basic needs, so you're freed and fueled to also add value to others."

      I particularly like the last one.  I think I'm going to try an experiment where I set up a timer and go lie down and close my eyes every hour and a half no matter what I'm doing.  If the body naturally resonates on this schedule this could be a great help to recovery.  I know that prior to getting ill I was a pusher.  I would work for hours without a single break.  I would sit down at my workstation in the morning and then be surprised that it was time to eat lunch.  Where had the last four hours gone?  For me, pacing is the hard lesson of the chronic life.

      Tuesday, December 7, 2010

      Just Ask

      Remember that old adage "it never hurts to ask"?   Well, it works.  If you don't ask, people can't help you.

      I got the idea late last night to contact my friend that is high up in HR and tell her my plight and what I needed.  This is based on a tactic I learned in a "Dealing with Difficult People" seminar that I attended years ago.  If you very clearly lay out what you need and why, more often than not you will get what you want or close to it.

      So, at about 1am in the morning, I composed an email to my HR friend.  I told her that I had been denied LTD.  I told her that I was appealing the denial.  I told her that I was the sole provider of health insurance for my whole family (husband and son).   I told her that I had doctor appointments pending.  And then I asked her the following questions:

      1. What is my status at work?  (employed/not employed)
      2. What is the status of my health insurance? (exact date of cancellation)
      3. Can my sick leave be extended to include the period of time of the LTD appeal?
      I got a very nice response today.  After six months if an employee is still unable to work then they are terminated.  Sick leave can not be extended during the appeal process.  However, they can tinker with my termination date so that I have health coverage during December which will give me enough time to arrange for insurance to start on January 1st.  This means I won't have a lapse in coverage!  Yay!  I thought this was a great compromise.  And, as a bonus they are going to help me with the appeal process!  How cool is that!?!

      I knew I stayed at that company for a reason.  The benefits are fantastic!  And the people in HR are great to work with.

      Monday, December 6, 2010

      Good News: Bad News

      I just called work and not only do I have no sick pay, I also have no job and no insurance of any kind.  The good news is that it is all reinstated once I win the appeal with the LTD company.  The bad news is that I carried the insurance for the whole family for health, dental and vision as well as life for myself.  So not only do I have no income source at all I also have no way to go to the doctor unless I pay out of pocket.  The good news is that I live in MA which is the first state to mandate health insurance.  Since hubby made so little money this year due to the bad economy we might qualify for the state subsidised health insurance.  The bad news is that it won't kick in until Jan 1 and I need tests and appointments done pronto for the appeal for LTD.  Good news is that I have found a lawyer that does insurance cases for individuals (there are tons of law firms that do them for businesses but few that work for the individual).

      So in summary:
      • Waiting for the lawyer to call back
      • Waiting for the rejection letter from LTD
      • Waiting for the info packet from LTD company so I can start a battle plan
      • Need to file for insurance through the state but need pay info from hubby first
      • Need to cancel all unnecessary doc appointments for the rest of the month
      • Need to return CPAP machine (no big loss there: I detest that thing)
      I'm trying to see the good in all of this.  I'm trying to tell myself that things will be okay.  But I am getting stressed out.  I want to cry and I'm getting overwhelmed and fatigued and can feel a crash starting.  Things are just crap right now.

      Saturday, December 4, 2010


      or My Very Bad Day

      It started out well enough. My cold is getting better but my cough has been keeping me up. That coupled with the decongestant gets me wired so I was up until 4am again. Then the neighbor's dog started barking outside my bedroom window at 8:30am. When I haven't slept well for days I start to have trouble falling asleep at all and once woken up I can't go back to sleep again. Thanks to the dog and much to the shock of my family I got up before 11am and had breakfast with my husband.

      Since I felt better than I had in days I did a load of dishes and cleaned up the kitchen a bit. I knew at the time that it was probably a bad idea to be using up my precious energy stores cleaning the kitchen but I was tired of it being so horribly messy.

      When I was done with that I got dressed, loaded my Mum in the car and drove off to the yarn shop. I knew which side street I could park on so I could walk a very short distance to the shop.  I also knew there would be seats in the store so I would be ok.  Once there, I sat and looked at pattern books while Mum ogled the yarns. Mum is the knitter. I never did master the art of even a simple scarf. I pull the stitches so tight I can't jam the needles through anymore. Anyway, Mum found some wonderful pink yarn to make me some bunny slippers for my Christmas present. She also found the needles she needed and even picked up a pattern for a sweater that I would like for my birthday.

      Then we were off to the library. I got a great parking spot right in front of the door and I headed right into the new book area where there are chairs to sit in. I pulled a few books off the shelves to peruse while Mum picked up some more books to read over the weekend. She is one of the fastest readers I know on the planet. It isn't unusual for her to finish a whole book in one day. A week later I'm only half way through my first library book and I've got two more to go.  I was so happy to be out of the house for a change and it felt so weird to be driving my car.  I couldn't believe how well I felt although I still had the remnants of the cold hanging on.  I was in a great mood.

      I swing round the bank on the way home to pick up some cash while I was still mobile. My kid tends to suck all the money out of my wallet. At least it takes me a month to go through the pocket money I used to burn through in a week and a half when I worked. It is much cheaper staying home in some regards.

      We finally got back to the house and I was pooped. I knew I needed to sit down but I also wanted to get some food into the crock pot first. I'm sick of take out food and wanted some real food to eat for a change. I found a simple chicken in applesauce recipe and started filling the pot with ingredients. I was just adding the applesauce when the phone rang. It was the insurance company: my claim had been denied for "insufficient medical data to support inability to work". I kept it together and asked about the appeals process, the amount of time I had to make the appeal and how long it would take them to reassess it after submission. I hung up the phone and burst into tears. Mum came over to hug me. Holy crap what am I going to do? I have NO income this month and Christmas is three weeks away. Am I going to loose my house? Will hubby get his wish and we'll end up in a trailer in the NM dessert? WTF?!?  How did this happen?  What the hell went wrong?  My doc had assured me that the insurance wouldn't be a problem.  I had tons of tests and I knew that the insurance company had gotten all of the results.  What the hell?

      I pulled myself together enough to finish slapping dinner together and collapsed in a kitchen chair. Now what? Call hubby and ruin his day too? I wanted his shoulder to cry on. I tried talking with Mum but I kept tearing up. I couldn't get any words out. This anger, this frustration, I needed a way to funnel it into something constructive so I hit up the internet. Thank goodness I had the presence of mind to attach CFS links to this blog. I looked up the legal advocacy group and sent them an email I looked up the disability and insurance information on the MA CFIDS site. I got the number for MA Disability Lawyers Association.

      I found out that under ERISA I could request the documents they used to asses my claim, the documents they rejected for the assessment and the clinical criterion they used to make the decision.  I was back on the phone with them within a half hour of the initial phone call.  They were now going to send me the complete document packet along with the letter of denial.

      A wonderful lady from the advocacy group emailed me back within an hour with some great information. She told me that the insurance company is looking for test data to support my claim. My word and the doctor's word aren't good enough. I need test data. This makes sense. So now my engineering brain kicks in; what tests do I need to prove I'm not functional? Again back to my blog page to get the link for Dr. Komaroff's lecture. I knew he had lists of tests to show CFS along with papers to support his claims. I also came up with a few extra tests that could show cognitive impairment and joint degeneration. I was on a roll. I emailed my doctor and explained to him about the denial and my idea about getting more tests lined up. I also attached the link to Komaroff's talk   A battle plan was forming in my head. Talk with the primary, review the letter of denial, figure out what tests we need to supply and file the appeal. Suddenly I didn't feel helpless and lost. I was still upset but I had a plan.  I was lining my weapons up prior to going into battle.

      Now that I was calmer, I called work and left a message; I needed to find out if I was going to loose my health insurance and what would happen during the appeal process. I have money to cover the bills during that period but it would be a disaster if I lost the insurance.  I knew I wouldn't hear from them until Monday.  It was too close to quitting time on a Friday afternoon for them to call me back.

      I did some more research and then cleaned up my desk and the desk drawers. I spent the next two hours sorting papers.  I didn't want to stop doing stuff. I was exhausted. Words were starting to jump around the page and I was having to read things several times over for them to make sense but I didn't want to stop. If I stopped I would have started crying.

      Hubby came home. I broke the news to him and then told him of my plan. We discussed it for a while and I could tell he was having trouble digesting all of the information I was throwing at him. I was starting to slur my words.

      He made the sides for our dinner and we sat and ate in silence. I was beyond tired. I was freezing cold and coughing up a storm. My throat had that weird too tired CFS ache. After dinner I went back to the internet and sent off some more emails, including a Christmas is canceled one to my sister. I had already gotten out of doing presents with my brother. I decided that until the LTD settlement was resolved that we had to stop spending money. no more eating out, no more clothes, no presents, no books. It would have to be a financial clamp down for the next two to three months. I don't want us burning through our savings faster than we have to.

      Hubby and I sat and talked a bit more and I was now mangling sentences. I couldn't get words out. I would use the wrong words. English just escaped me. He knew I was burned out and needed to be left alone for a while so he went off to kill some zombies.

      I decided to look through the list of funny links on my blog. I needed to laugh. After some great pictures at My Food Looks Funny and some good stories on Dr Grumpy I felt a bit better. Mum had come over to find out why I was laughing and joined me looking at cute animal pictures. We then watched our favorite BBC show Doc Martin, which turned out to be a great episode.  Everyone headed off to bed except me.  I'm feeling just shy of normal again. I'm scared that if I stop typing and go to bed I'll start crying and worrying so I'm up too late again. When I finally get to sleep tonight I'm betting I have a huge crash in store for me tomorrow.  Bummer.  I was just starting to feel better.

      Friday, December 3, 2010


      Cute Baby Animals - Dwarfhamster = Dumbledwarfhamster
      see more Daily Squee

      The Cold: Day 5

      or Better Life Through Chemistry

      I could kiss my doc.  I'm doing so much better today.  The cold seems to have run its course and the drugs are doing wonderful things like letting me breath and stand up without the room spinning.  While my hearing is still a bit dull, I can now pop both ears and I no longer have the stabbing pain everytime I move my head.  The congestion in my chest is loosening up and thining out and starting to run clear so the antibiotics are kicking some major bacterial butt.  Take That!!  It is wonderful when you can eat food and breath at the same time. 

      I now have the mother of all cold sores setting up shop on my upper lip.  Holy cow this thing is huge!  I have never had one this big even when I contracted the original virus over twenty years ago.  I had been so happy that each time the virus had a party on my upper lip that it was smaller than the previous one and that it took longer and longer between parties.  I thought I had vanquished its ugly butt.  I guess I was wrong; it just needed a little backup from good old XMRV.  Now they are doing the tango together on my upper lip and having a grand old time.  It is gross and ugly and makes me look as diseased as I feel.  Hah, visible evidence of the viral war raging inside my body.  At last some proof that I am indeed sick.  Some outward ugliness.  A horrible battle wound.  Hopefully I won't have a horrible battle scar when they finally poop themselves out.

      Wednesday, December 1, 2010

      The Cold: Day 4

      I am truly shocked at how fast and how thoroughly this cold has wrecked my body.  Day one was a simple sore throat that quickly progressed to a full on runny forgot to turn the taps off nose.  One box of tissues and one day later it was in my right ear causing all sorts of pain and swishing noises along with lots of vertigo.  I couldn't move my head in any direction without shooting pains and the room swimming around as if I had just stepped off a Tilt-a-whirl.  The nose continued to run unabated but the mucus had disturbingly thickened up occasionally producing the green goo indicative of a sinus infection.  Luckily I had no sinus pain to speak of just one hell of a cough.  I did however start spiking mild fevers.  The worst one was in the middle of the night when I got so cold my teeth started chattering.  At 4am I wasn't about to go hunting for the thermometer for confirmation so I just piled on the blankets and went back to sleep.  Day three the coughing fits were so bad I was turning bright red because I couldn't breath.  Hubby was worried I was going to pass out or have an aneurysm.  No more fooling around I hit up the stash of left over prescription cough medicine.  This helped a lot but I was still having the occasional coughing fit.  I could feel the congestion in my lungs.  I have a history of colds turning into bronchial infections so I knew where this was heading.   I also started swinging between being hot and cold with the occasional sweats thrown in just to make this interesting.  Although the pain in my ear had subsided, I could no longer hear well on the right side.  I probably had an ear infection as well.  I spent most of the day sleeping.  When I woke up this morning I was coughing up green goo balls .  When I called the doctors office, the receptionist informed me that 'green goo balls' isn't a medical term but I needed to come in to see the doctor.  So now, four days into what should be a routine cold I had a chest infection that was probably bronchitis and an inner ear infection.  I went home with orders to take a decongestant, an expectorant, an antibiotic, and prescription cough medicine.  Of course this is in addition to my B12, C, D, Zinc and prescription anti-inflamatory meds.  And I hate taking pills.  Ugh.

      Oh and by the way, one hour before I went to the doctor a cold sore showed up on my lip and grew exponentially.  By the time I got to the doctors office, it was a quarter of an inch in diameter and already had a pussy head on it.  OMG, I haven't had one of these suckers in over ten years.  I also get a 24 hour warning before one pops up and it takes days to get this big.  WTF??  I had to get cold sore medicine along with all the other pills at the pharmacy on the way home.

      At least I'm on meds now and can maybe at least slow this thing down and maybe avoid pneumonia.  I am truly flabbergasted how fast and how extensively this has spread.  I am also surprised that I didn't get a sinus infection along with all the other infections.  Hopefully tomorrow I will see some improvement.