Monday, February 28, 2011

Oscar Night

I just watched the Oscars on TV.  It made me realize how many movies I've missed this year due to illness.  I love movies.  I always have.  Movies were one of the first things I used my pocket money for when I was a kid.  When I was a teenager I used to attend science fiction conventions and I spent most of the weekend in the movie hall.  It wasn't uncommon for me to sit through 4-6 movies back to back.  By the time I hit my 20's I had seen Star Wars 14 times and that is when I stopped counting.

Anyway, in honor of the Oscars I wanted to review some of the movies I've watched recently on Netflix and that wonderful new invention RedBox (pay a $1 and get a movie for the night from the local gas station). 

Loved it but don't watch when brain fogged.  This is a difficult one to follow.  I had to explain it to hubby at the end.  And both of us were scratching our head at some of the visual effects.  I'm actually going to purchase this movie.  We both want to see it again and probably again and again.  Good stuff.

This is just a fun movie.  Love Helen Miren in it.  These are all ex CIA types that end up coming out of retirement for one last job.  Not very plausible but just plain fun.

The American
Total waste of time.  Odd movie.  Neither myself nor my husband liked this one.  There were bits of it that got me worried that my neighbors thought we were watching porn.  This one is mostly George Clooney being a paranoid gun builder that is hired to build one last sharp shooting weapon for a sniper.  He is so good at sex that he has a prostitute fall in love with him (gag!) and he kills the bad guys off.  Blech.  I also don't like the way it was filmed.  Very odd look to it and almost no musical score.  If I remember correctly it was done on a very low budget.  Which I don't mind but the story sucked.

Another fun movie.  I enjoyed this one.  Hubby liked it so much he rented it twice.

Enchanted April
Didn't like this one.  Not sure what the point of it was.  Sometimes I am just dense when it comes to social interactions so I might have missed something here.  Gorgeous countryside.

Maid to Order
Your basic Cinderella story.  Spoiled rich kid magically turned into a maid so that she can learn humility and compassion.  The movie itself stinks but it was filmed in the 80's so it was a total kick to see all the hair, costumes and set design from that era.  It totally dated the movie. 

Sweet November
Wonderful movie.  This is an unusual romance movie.  Keanu Reeves and Charlize Theron.  It is Charlize that makes this movie special.  I don't want to say too much because this movie is full of surprises.  I really enjoyed it.

Donnie Darko
Hubby and I finally watched Donnie Darko which is a SciFi cult classic.  I really like this one.  I'm going to have to watch it again since I was brain fogged the night I saw it and in typical good SciFi movie way it was mind bending so I need to see it again to pick up on the minutiae I missed the first time.

The Maiden Heist
A pretty good heist movie.  Hubby and I always like watching heist movies.  Again this is a bunch of retirees that come back to do one last job.  The cast is just awesome though and make this a fun movie to watch.  Great date night movie.

North and South
This one is actually a BBC mini series.  I loved it so much I had to see this one again.  The acting is really good and it has a great story.  Just a well done piece.

Saturday, February 26, 2011

Hitting Bottom

This was a cumulative effect.  The colonoscopy crashed me harder and longer than I had anticipated.  I figured a couple of days and I'd be back on my feet and back to my old schedule.  Boy was I surprised when I loaded the dishwasher last Saturday and had to sleep for three hours afterwards.  I managed to make ONE and only one dinner this past week.  Again this was a combination of events.  My son is now working as well as attending college in the afternoons.  He is no longer around to run errands and then help me with dinner.  Since I was crashed so badly from the surgery, it was impossible for me to cook and we didn't have any groceries anyway.  And cooking that one very easy meal sent me back to bed for hours again.  I didn't even have the energy to hold up the butcher's knife I was using to skin the chicken.  I kept having to put it down since it was too heavy for me.  I have never been crashed that badly before.  Scary!

This lead to the next nasty event.  Hubby threw a grand mal hissy fit and stopped talking to me.  He was furious.  He hit his peak on the day my migraine started.  So there I was on the couch with my knitted wristies over my eyes because I couldn't stand light or motion, with the TV on low so that I could listen to the quiet tones of the documentaries on PBS for distraction and unable to move so that I wouldn't make the pain worse than it already was.  Dinnertime came and he was crashing around the kitchen.  Every door slam made me wince in pain.  He made himself dinner and once he was done finally came in the room and said "Want anything?" in that 'I dare you to answer' tone of voice.  I asked him what was for dinner and he told me he already ate and since I didn't say anything he assumed that I didn't want anything.  WTF??  When have I ever skipped dinner?  I live for food.  We've been married for 20 years so this is not secret information.  And here I am parked on the couch unable to move or talk above a whisper and you have been avoiding me since you got home from work.  So how the hell was I supposed to ask about dinner?  More crashing about the kitchen produced a bowl of ravioli and another question "Am I taking you to the Hospital?" again in that  'I dare you' tone with an undercurrent of 'gee can I get rid of you?'  He left me alone the rest of the night and eventually snuck off to bed leaving me in my misery.  I was starving and thirsty and reluctant to move.  My son made me a bowl of oatmeal and got me a drink which helped tremendously.  Boy does he make terrible oatmeal but I was happy for the food and the lack of abuse. 

For the next several days I got the silent treatment.  No concern.  No hugs.  No 'how are you feeling today?'  Nothing.  Then Friday comes and I have my neuropsych follow up.  Two weeks ago I took a series of tests for memory and cognitive functioning and Friday was results day.  She did a thorough job with the report.  I had gone there to see if I had deficits that would qualify me for disability or at least a test that showed that something was wrong.  The testing did show problems with slowed motor skills and poor working memory and the tests showed that my brain was intact and physically functioning just something was interfering with the memory and motor skills.  Now this is where things go horribly wrong.  She says that this all can be fixed by proper sleep, vitamins, exercise and cognitive behavioural therapy.  She says that I am fine to go back to work barring any physical problems.  This just sent me over the edge.  I fell down the well very suddenly and very unexpectedly.  On the drive home I hit bottom.  The thought that it would have been so much better and easier if I had just died a year ago rather than get horribly ill.  We wouldn't be burning through our savings account.  CJ wouldn't be mad at me.  The kid would have his college fund.  I wouldn't be wasting their time driving me to specialists who all tell me I'm okay and I just need cognitive therapy to stop me from benefiting from being ill.  It would be so much easier if I just disappeared.  The house would have been paid off with my life insurance policy.  CJ could go live where ever he wanted and probably even buy a new business with the leftover money.  It would have just been easier.

A night's sleep cures many ills, particularly mental ones.  I'm doing much better today.  I'm in better spirits.  I started my Celebrex again to stop the headaches and joint pain.  I wasn't supposed to start it for another few days but I couldn't stand the pain any more.  I'm back on my diet so I get to eat good carbs and fruit and salad again.  CJ and I started talking again last night.  I told him that it was okay to be angry.  I get that.  This whole thing sucks.  However, it is NOT okay to take it out on me.  He still isn't at the point of asking me how I'm doing but at least he is talking to me again and behaving more like a human being.  He actually kissed me this morning.  First time in days!

The sun is out and it is another day.  I see a holistic doctor next week.  He is part of an integrative medicine practice.  I'm hoping that this will work better for me since I would love some help with my diet and supplements as well as better pain management.  I'm even willing to try CBT.  I will probably derive some benefit from it.  However, I'm under no illusions that this will make me better or fix my brain functioning.  That chick has no idea what CFS is or how it affects the brain.  While I agree with her test results I don't agree with her interpretation or her recommendations.  I sent all the information to my lawyer and I'm wondering if she can get the neuropsych lady to change her report.  In the meantime I'm looking for papers that refute the CBT & GET model for curing CFS.

I might have hit bottom yesterday but I'm bouncing back up again pretty fast.  Things are looking a lot better today.  I still have a lot of fight left in me.  I guess I'm not going away that easily after all.

Wednesday, February 23, 2011

Colonoscopy With Mr. ME

This is the second colonoscopy I've had in my life.  The first one was two years ago before I got "sick".   While I loved seeing my insides during my first test (yes, I'm a science geek), the prep was horrible and I was tired afterwards.  For those of you that don't know the prep consists of several steps: go on a low fiber diet for a week, stop any meds or supplements that would interfere with the test, no food the day before the test and drinking a horribly salty solution that makes you eliminate everything out of your colon.  And I do mean everything.  The result is you are tired and sitting on the John for 12 hours prior to the test.  If they find something and have to do minor surgery to remove it you have to stay on the low fiber diet for another week, not lift anything over 5 pounds and no aspirin or pain meds that thin the blood for ten days.

The first test I had two years ago was hard on my body.  I was tired and hungry.  They found a polyp which was removed and the cells were found to be abnormal triggering the second colonoscopy that I had last week.  However, I was relatively well back then and it only took me a couple of days to get back to normal.  I felt even better a week later when I could return to my normal high fiber diet that included raw fruit, salads and whole grains.

This time was different.  I had Mr. ME with me and he is a vengeful sort.  I had to stop my pain meds along with my supplements and eat a low fiber diet for a week prior to the test.  He didn't like that very much and decided to take revenge.  He stopped up my plumbing and sent my pain levels through the roof.  I could no longer sleep for more than a few hours at a time before my shoulders, arms and hands would wake me up.  He had lit them on fire while I was sleeping.  I think he was angry.  I could no longer get into a position that was comfortable.  It didn't matter if I was laying down, sitting or standing.  He tortured my joints every chance he got.  Then he started on my muscles.  He made them cramp.  He made them twitch.  He made them spasm.   I caved and took an illegal dose of aspirin so that I could sleep for a few hours. 

Finally prep day came.  I was already tired from the pain keeping me awake.  Now I was hungry as well.  I was allowed a liquid diet that included juice pops, chicken broth, jello and Gatorade.  Mr.  ME made sure I got a first class ticket on the sugar express.  How the heck I could be tired and wired at the same time is still a mystery to me.  Needless to say between the sugar and the trips to the John I was up all night prior to the colonoscopy.  I finally passed out and got three hours of sleep before the procedure in the afternoon. 

Mr. ME came with me to the doc's office.  My speech was messed up by the time I was wheeled into the room for my procedure.  He asked me something and I told him I couldn't since the blood pressure cuff was on my ankle (it wasn't: it was on my arm).  Doc looked at me funny and then had the nurse drugged me into oblivion.  I do remember seeing chunks of lemon jello stuck to the walls of my colon so I must have woken up at some point during the procedure but I slept for most of it.

When I woke up in recovery I had an oxygen tube up my nose.   I don't remember that from last time.  My blood pressure was also really low.  First time I had ever seen it under a hundred.  Of course this is the time when you get to lie in a curtained area and fart a lot.  They pump your intestines full of air to fit the camera up there so you end up tooting afterwards.

Mr. ME was totally incensed by this entire procedure and forced me into a wheelchair for the ride out to the car.  Every day since then I have been extra tired and weak.  Stupid me I woke up last Saturday and felt okay so I thought I was all set.  I loaded the dishwasher and Mr ME showed up, clocked me upside the head and sent me to bed to sleep for the rest of the day.  Since that day I've stopped doing anything.  I've rested.  I've laid down a lot.  Sat in the quiet a lot.  Stared out the window a lot.  Tried to sit in the sunshine and get fresh air as much as possible.  Last night I fished through my old meds and found some left over Tylenol #3 that was left over from the last time I had surgery (yes, they found another polyp so I am still not allowed to take my meds and supplements) and took a half pill before I went to bed.  Mr ME stayed away for six full hours.  I got to sleep with minimal pain for six whole hours!!  I woke up and took the other half pill.  I slept six more hours.  Woohoo!!

Mr. ME is still pissed off.  My joints are killing me and my muscles in my arms are still cramping up but I got to sleep really well for 12 hours.  I feel more normal.  I took it easy today and some friends came to visit and gave me a Reiki treatment.  This is energy work.  It left me feeling lighter and less twisted.  I actually could feel my spine straightening up during the treatment.  I felt better afterwards.  I ate really well today.   I've been craving protein so I've been eating more meat than I normally do.  I did start some of my supplements that help with muscle cramping so I'm on potasium, calcium and magnesium and back on my large doses of vitamin D.  This is also helping.  So Mr. ME is becoming pacified again.  He is backing off a bit.  I hurt a little less and feel more like a human being again.  I plan on taking another half pill of pain med again before I sleep tonight.  I have a massage planned for Thursday and I get to take my regular pain meds in a couple more days so I'm almost done.  Now I just have to get some energy back.  At least so I can shower and make an occassional dinner without Mr ME knocking me out cold for the rest of the day.  I wonder how long he is going to stay pissed off??

Just in case you were wondering: they found the original polyp had regrown.  I don't have the biopsy results yet but the doc said I don't have to do this again for four more years.  Yay!  I also have hemroids and diverticulitis which are supposed to be caused by a low fiber diet.  They sent me home with papers on eating whole grain, raw fruit and salads.  Since I already do that I put the blame squarely on Mr ME since the other cause is Miss IBS which Mr. ME brought with him to the party.  It is all his fault!   When can I beat him up? 

Sunday, February 20, 2011

Fear Is The Mind Killer

Fear of getting worse
Fear of becoming bedridden
Fear of exercise
Fear of housework
Fear of walking
Fear of sleeping too much
Fear of sleeping too little
Fear of bankruptcy
Fear of loosing my house
Fear of "it's all in your head"
Fear of family/friends reactions
Fear of isolation
Fear of loneliness
Fear of boredom
Fear of misunderstanding
Fear of intimacy
Fear of divorce
Fear of ignorance
Fear of ostracism
Fear of being left behind
Fear of being left out
Fear of missing something
Fear of loss
Fear of poverty
Fear of strangers' reactions
Fear of misbelief
Fear of medical tests
Fear of depression
Fear of pain getting worse
Fear of getting well

"I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.

     -Bene Gesserit Litany Against Fear."

From Frank Herbert's Dune

Friday, February 18, 2011

The Wrestling Match

I can't write.  I keep starting posts and then erase them.  I've spent the last two weeks ruminating about difficult stuff.  Things I don't want to look at head on.  Things I don't want to admit to myself, never mind posting in a public blog, but this is part of the illness isn't it?  The self doubt.  The self questioning.  Wondering if you are handling your illness, medical care and treatment plan the "right" way. 

What started me down this road was reading other patients' illness narratives.  So far I have been reading mostly medical literature.  What are the scientific facts?  "Just the facts, ma'am." (said in a low voice like the guy from Dragnet)  I'm a scientist so I want objective, quantifiable, identifiable information.  I want double blind studies not speculation.   I've even started watching MIT's bio 101 class online to learn the lingo so that I can understand the papers that I want to read.

While I have been reading other chronic chicks' blogs for months now they deal with day to day stuff.  How they handle the boredom.  How they handle their illness.  What makes them angry/happy/sad/etc.  How they save spoons.  I have made friends through these blogs and I love reading them.  We are our own support group.  But this month three things happened; 1) I started reading Recovering From CFS:50 Personal Stories, 2) I started a mind/body course (that I have successfully totally avoided so far), and 3) run across multiple posts of patients participating in mind/body/spirit training to over come some of the symptoms of CFS.  This threw me into a huge downward spiral of self doubt.

Based on the scientific literature I had read, I came up with a treatment plan of rest, pacing, low stress and supplements to at least control symptoms and hopefully improve my situation.  Maybe I would even get better.  But now I was getting pummeled on multiple fronts about the role the mind plays in illness.  Since I don't believe in coincidences, I started wondering what these messages were trying to tell me.  This went downhill very rapidly.  It started with simple questions like "what part does my mind play in my illness?" which rapidly deteriorated to "Am I making myself sick?  Is it my fault I am sick?"  This lead to a mini depressive bout which made my symptoms worse.  Downward spiral begins.  And then came the physical component....

Of course spending my first chronic Valentine's Day by myself since my husband was working didn't help matters any.  I had just spent the weekend in bed since I had to stop all my meds and supplements for a colonoscopy today so I felt like absolute crap.  This meant that I hadn't gone out of the house so I didn't have a card or present for him.  I hurt so bad the very idea of having an intimate evening caused pain.  Then I got all grumpy from that.  I started doing my "I'm fat.  I'm ugly.  I'm smelly (hadn't showered in days).  I'm revolting."  Downward spiral continues.... 

So all these mental things combined with the physical symptoms brought on by the horrible diet and lack of meds and supplements for the colonoscopy procedure became my perfect storm.  I have been a horrid mess for about a week. 

However, things are looking up.  The test is done.  I got to eat a wonderful meal of mango fried rice and gyoza from a new Thai place in town and they sent home some complimentary tea that tasted fantastic.  I got to take some of my supplements and some Tylenol this evening.  I get to eat a real breakfast tomorrow and take all of my supplements.  And I have nothing planned for the next four days so I can let my body recover from this latest physical assault.  As an added bonus they only found my original polyp regrowing which they removed again.  Nothing else is wrong.  My large intesting is in general good health and I don't have to have another colonoscopy for five years!!  Woohoo!!

I also had the guts to start the mind vs body discussion with my shrink on Tuesday.  While that didn't go very well, at least I started it.  We'll sort it out and discuss things further.  I'll be able to look at some of the things I'm so afraid of with her help.  I need her help with the mind part of the mind/body equation.  I'm obviously too affraid to do that one alone.

However, something she said stuck in my head; she asked me "What would you do if you weren't afraid?"  (I won't go into the fear topic today since it is a biggie and makes for a great topic for another long post.)  As a result, I have found myself walking around this week asking myself what would I do if I weren't afraid, whenever I've been confronted with a decision.  Consequently, it is affecting all of my decisions.  Hubby looked at me yesterday and said that I had more energy than usual which took me by surprise but when I thought about it this new found energy was a result of the fear question.  Have I been so scared of crashing I might be limiting myself too much?  Hard to say.  I think I need to track myself in a symptom journal some more to see if this is true.  I might just be fooling myself.  I might have just been having one of my random good days.  I might have have saved enough spoons from my weekend in bed that I actually had energy to do stuff on Wednesday.  Maybe there is something to this mind over illness thing.  Then again it might be all crap.  We'll see.  This is such a work in progress.

Monday, February 14, 2011

Sick Humor: Pain Meds



Feel like absolute crap since I've stopped all my meds and vitamins.  I guess they were doing a lot of good.  No longer sleeping well due to pain.  So very tired and grumpy during the day.  I can hardly wait until Thursday is over so I can go back to eating a healthy diet and taking my pills.

Thursday, February 10, 2011

Healthy Diet??

I finally found the papers with the instructions for my colonoscopy next week.  Good thing I did since I have to start my special diet today.  Turns out all the healthy food that I normally eat is in the "Do Not Eat" column: such as brown rice, nuts, whole grains, fresh fruit and vegetables and anything corn.  So what is in the "Eat This" column?  White bread, white rice, pasta, cooked to death vegetables, pudding, jello and ice cream.  So with my wheat allergy this leaves overcooked vegetables, pudding, jello and ice cream.  Since my blood sugar is so wacky with this illness I'm going to be a total wreck this week.  Maybe I'll just eat meat and lots of eggs.  Otherwise it will be pudding and ice cream with the concomitant sugar highs and crashes.  I'm SO not looking forward to this.  Oh yeah, I had to stop all my meds and supplements as well.  So on top of the mood swings and energy rollercoaster ride I have to manage a week with muscle cramps, severe joint pain and headaches.  UGH!!!

Wednesday, February 9, 2011

Anger Issues

I am ticked today.  I mean royally pissed off.  I haven't quite figured it all out yet but it has to do with being sick. still.  never ending mess.  I have another list today of things I am ticked about:
  • being sick
  • endocrinologist being unavailable and not having someone to help with her case load
  • not hearing from her office regarding a neurologist and rheumatologist and MRI
  • My LTD deadline looming
  • being brain dead and having NO energy this past week
  • having a four hour neuropsych test on Friday morning (I don't do mornings)
  • having to go off pain meds for my colonoscopy next week
  • having a colonoscopy next week (oh what fun)
  • not having any news for my lawyer
  • being sick for Valentine's Day and no money to go anywhere anyway (Gosh I would love to go out for a fancy dinner that day)
  • all the annoying valentine's day commercials
  • people saying that they cured themselves by changing their attitudes and forgiving people
  • having no one to yell at because this isn't anyone's fault
  • having no energy to be able to take this out physically

Tuesday, February 8, 2011

Sick Humor: Bad Day

I was sad that I was having so many bad days in a row and then I remembered this:

Hyberbole and a Half

Monday, February 7, 2011

Newton's Law

A body at rest stays at rest
A body in motion stays in motion
unless acted upon by an outside force.

This is Newton's First Law of Motion taught to every physics student.  I guess I need to find more force since my body is tending to stay at rest these days.  I miss moving.  I miss using my body.  I miss walking.  I miss running.  I miss skating fast.  I miss dancing.  I miss hiking.  OMG I miss just stretching. 

I never thought of myself as an athlete, specially since I was never particularly good at anything and I have been chubby since I hit puberty.  However, looking back on my life now that I'm spending most days in bed or on the couch, I realize that while I never quite qualified for the term athlete I was active.  I was always involved in movement and it started when I was very young.

Figure Skating:  as soon as I could stand up Mum and Dad strapped double runners on my feet and took me on the ice.  It was love at first sight.  I don't remember learning how to skate.  It is something that comes as natural as walking to me.  I've started formal lessons when I was 6 or 7 and continued until I was until 15 or 16.  Although I quit formal lessons I remained on the ice regularly until I went to college.  I even started formal lessons again as an adult.  I passed three tests and won two medals before becoming ill.

Ballet: started when I was 5 or 6 and continued until I was 10 or 11 after starting en pointe work.  I took a course in college for a semester which I enjoyed immensely and have taken the occasional class as an adult.  It is a sport that I would love to take up again.

Gymnastics: another sport that I loved as a kid but wasn't very good at.  I participated during middle school and even took group lessons at a gym but decided to pursue ice skating instead.

Aerobics: this wasn't around when I was a kid but I took it up after I left college.  I've taken classes on and off for years and got quite good at step aerobics.  My favorite class was taught by an exdancer who would string dance steps together one at a time until she had the entire class dancing a routine lasting several minutes.  We all had a blast.

Swimming:  my Dad taught me how to swim when I was about 8 and growing up on Cape Cod I spent every summer in or on the water.  When I went off to college I spent all four years in the pool swimming laps.  I have done lap swimming on and off as an adult but haven't gone since my car accidents a few years back screwed up my neck and shoulders making swimming painful.

Sailing: again I took lessons as a kid and spent my summers on or in the water.  I never pursued this as an adult although I liked it a lot.

Weight Lifting: I learned this a few years before my son was born so I've been doing this on and off for about 20 years now.  I even lifted through most of my pregnancy back when women weren't supposed to exercise while carrying.  I just didn't tell my doctor about it and took several precautions to prevent any injuries.

Other sports I've done over the years:
Horseback riding
Speedskating (love that one and would love to take formal lessons for long track)
Yoga (did restorative yoga for over three years and really enjoyed it)
Tap dancing
Jazz dance
Cross Country Skiing (did this all through college after I learned for a geology field trip)
Downhill skiing (didn't like this as much as xcountry)

Sports that I still want to try but haven't had the time:
Speedskating long track
Scuba diving
Backcountry survival
Synchronized Skating
High mountain hiking/camping

I miss my visceral life.  I no longer DO anything.  Not only have I lost sports but I've lost cooking, sewing and even cleaning my house.  Instead, I connect to the world through my computer keyboard.  I live a vicarious life now through books, movies, radio and the internet.  I want to be able to DO things again.  I want to touch, move, jump and feel.  I want to hear and yell and taste.  I want to be in motion and never stop.

The Lost Weekend

My family used to apply this phrase to my Dad when he had gone on a bender.  Now I get to apply it to myself.  I lost this weekend to neuro symptoms.  I spent Friday, Saturday and part of today lost in a haze.  I still haven't figured out a trigger for these symptoms.  At first I thought it was just me doing too much and not resting enough.  But after experimenting with this, my doing too much doesn't necessarily lead to the head bobbing and coordination issues.  Then I thought it might be chemical exposure but looking through my symptom journal that doesn't seem to be the case either.  After all I wasn't exposed to anything Thursday or Friday that would have triggered the latest round of bobblehead syndrome.  Another thing that turned up in my journal is that this happens about once a week.  So what makes these symptoms different?  On one of my 'well' days I'm tired but my head is relatively clear.  I have joint aches and occasionally IBS symptoms.  These all come and go as erratically as the neuro stuff.  However, the neuro stuff scares me and always makes me cry.  What are these symptoms:
  • uncontrollable head bobbing
  • uncontrollable movements of hands
  • loss of balance
  • ringing in ears gets even worse
  • can't think straight
  • can't talk
  • loose language skills; have trouble talking, forming sentences
  • can't remember words
  • severe memory problems
  • can't concentrate; almost have ADD
  • side to side motion on TV causes motion sickness
  • can't type: mangle words, use wrong words, can't control fingers (I touch type), have to go very slowly and have to do lots of corrections 
  • pain is much worse
  • need help walking; have to concentrate on leg and foot movements
  • stairs are a problem due to lack of coordination and muscle weakness
  • loss of muscle strength and coordination: have trouble holding glasses, manipulating utensils, cutting food
  • short term memory is even worse than usual
I'm going to keep up with my symptom journal.  It includes activities, food and symptoms.  I am hoping that it will help me see if there are any connections between what I do/what I'm exposing my body to and my symptoms.  There might be nothing but if I can figure out a connection I might be able to make myself a little bit better.

Sunday, February 6, 2011

Crap, Crap, Crap

I knew coming off the meds would be crappy.  This one was more exhausting than the last one but I didn't have the depressive mood swing that I got with the generic.  Small gifts I guess. 

Today was a stupidly tired day.  I went to bed last night with my throat feeling all swollen making breathing an odd experience.  I woke up tired and very very sore.  All my joint pain is back and then some.  My left knee has swollen up as if I had been skating on it.  I've had the neuro symptoms off and on all day which makes me do an excellent bobble head doll impersonation.  As soon as I get like that I cry.  It always makes me cry.  Probably because when I get that bad I can no longer talk.  Words escape me.  Language doesn't make sense anymore. 

I always put the neuro stuff down to not having enough sleep however this is the second time that I've had them upon waking.  I also made the symptoms worse by playing a word game on Facebook that is like Boggle.  They didn't go away until I stopped using my brain and just watched X Files where I didn't have to think very much.  So what is up with this? 

I'm a bad typist as it is but when I get like this typing is really hard.  I skip words.  Type random characters.  Mash other words together.  Type the wrong words.  I actually find playing Scramble interesting on days like this because I can tell my reaction time is down and my typing skills suck.  Normally I type about 40wpm.  I should test myself when I'm having a challenging day like today.

I think I'm going to lie in tomorrow and listen to the radio or a book on tape instead of getting up.  I was hoping to take a shower today but I'm too much of a mess.  I'm just going to have to wait this out I guess.  I wouldn't mind so much if I were taking the neuropsych test tomorrow but that isn't until Friday.  I would love to see the crappy test scores when I'm zonked like this.

Saturday, February 5, 2011

Bad News Today

When I got up I thought I might be in for a good day.  My migraine had passed and it was a sunny day.  I was fogged and had the usual migraine hangover (I'm never sure if this is from the headache or all the meds I take trying to ward it off) plus I am detoxing from the Cymbalta so I wasn't in peak physical/mental form.  But I did have hope. 

Then things started going wrong.  First I broke the lid to my favorite blue teapot which I've used every morning to make my tea since I bought it a year ago.  I love that thing.  Then the endo doc office called to move my appointment.  Turns out my doc's son is in the hospital and it is serious so she is going to be out of the office for at least another week if not longer.  My follow up appointment is now in mid March. 

This news resulted in a cascade of thoughts and feelings.  I'm worried about her son and concerned for her.  I'm also scared that I'm not going to get a diagnosis in time for the LTD appeal.  I think if it were just me trying to feel better I wouldn't be so upset about it but I have to win this legal case or I'm financially screwed.  I was also looking forward to working with her, getting this team of doctors together to figure this out and get all the testing done.  I would like a diagnosis for heaven's sake.  It's been ten months now since I got sick and no one is willing to say that I have CFS.  I am so frustrated.  I want this to move forward.  I don't want to wait anymore.

Last night while surfing the net I discovered that Dr. Nancy Klimas, one of the leading CFS docs, has opened a CFS clinic in Miami FL.  I want to go there.  I'm scared that traveling will make me sicker but I want to talk to a doc that knows this illness cold and isn't just guessing.  I have a friend that lives near there so  I would have lodging while going to the clinic.  I would have to pay out of pocket for the visit but right now I've got the money to do this.  I was going to wait until my follow up apt with my endo doc to make a decision regarding the clinic but that is now six weeks away.  I only have until May to get the appeal filed.  Ugh.  I just don't know what to do.

Friday, February 4, 2011

No More Sunburn

Talked with the doc today and he has decided that I have an allergy to the Cymbalta class of drugs so he has taken me off them and added them to my list of allergies.  Now I have to detox for a couple of days and then start the generic version of neurontin.  I've taken this stuff before after I had nerve issues after a car accident.  I remember being groggy but I was working at the time and couldn't afford to deal with the side effects just for some hand and foot tingling. 

I truly don't know how I managed to sleep last night; even the seams in my clothes were bothering me.  I had to take my pj bottoms off because of the seams.  Thank goodness I have a very soft tagless top that I can wear to protect my skin when it is this sensitive.

I also keep chewing my tongue.  It is irritated and also feels burned.  I can't taste anything either.  I made this really nice dinner and it tasted like nothing to me.  Hubby told me it was awesome and he loved it and to make it again.  Wish I could have tasted it.  When I can I'll publish the recipe on Fast Foodie.

So now I'm fighting off a migraine.  I've taken migraine meds, muscle relaxants and coffee and my head is still killing me.  Just can't win some days.  I'm not looking forward to the detox.  I'm expecting another down in the dumps day due to the chemicals.  Blah....

Anyway, here is some internet flotsam to cheer things up a bit:

NIH Undiagnosed Diseases Program
33 Ways to End Your Day
GF Food Blog
Heart Rate Monitoring and CFS/ME
Crochet Greedo

Thursday, February 3, 2011

It's Back

It took three doses this time but my 'sunburn' is back.  My clothes are bugging the hell out of me.  First I cut all the labels out of my new pjs but after a while even that didn't help.  I had to find the softest shirt I own and put that on and now even that is bothering me.  My hair can't even touch my shoulders.  This 'sunburn' is more painful than the last one but isn't as widespread as of yet.  I guess this med is not for me.  I'll be having another talk with my doc tomorrow.  I'm bummed because I wasn't in pain today and my tummy was back to normal and I had a great night's sleep last night since I wasn't waking up hourly in horrible pain.  So now I get to detox again and go back to being in pain.  Blah...

Wednesday, February 2, 2011


You know how your tongue feels when you've eaten something too hot?  You get a bit of a burn and it is tender to the touch?  Mine feels like that and I haven't eaten any burning hot food today.  I haven't even eaten anything particularly crispy today.  I'm beginning to suspect that it is a weird side effect of the Cymbalta.  Yes, I'm trying the real stuff this time.  I found a coupon on the Lily site for a free month of meds and they make a 20mg dose.  I figured it was chemically different than the generic I tried and at about half the dose maybe I would tolerate it better.  So far I've only got the burned tongue feeling.  My skin seems to be okay so far but I've only just taken my second dose.  The experiment continues.....

Just want to note here that I'm not a doctor.  I'm not offering medical advice.  I'm just following my own doctors orders for my own set of symptoms and reporting here what is happening to my own body.  I don't expect anyone else to have the same symptoms or reactions as myself.