Monday, February 27, 2012


I haven't been writing because I haven't had much to say.  Things have been the same.  I'm crashed.  It has been two months now.  Mum came for a visit because hubs flew to Portland OR for training and I needed help around the house.  She read books while I slept.  We managed to go out a few times but mostly we watched movies.  So here is my movie list (BTW, I'm writing this while watching the Oscars so this is very apropos):

USFSA US National Figure Skating Championship 1961
The Sport Spectacular show that featured the winners of the 1961 nationals competition.  This is complete with the old commercials (picture figure skaters smoking L&M cigarettes).   I loved watching this.  My figure skating coach was taught by Maribel Vinson Owen, a famous figure skater in her day.  This competition documented one of her daughters winning gold in pairs and her second daughter winning gold in women's singles.  It is great seeing the old competition.  The old styles of skating.  Watching this taught me how far the sport has come just in my lifetime.  Pretty amazing.

Hot Ice
A figure skating show in Blackpool UK.  This is more like a Las Vegas show than the Disney style shows done here in the US.  Some of the music was terrible but it was lots of fun watching the skating.  They even had two acrobats in the show who did amazing work.  We didn't recognize any of the skaters names.  They are all from overseas.

Leap Year
A fun little movie about a girl that chases her boyfriend over to Ireland so that she can propose to him on Leap Day.  Of course things go horribly awry and she ends up falling for her driver instead.  Nothing earth shattering here but a fun movie.

Love and Other Drugs
I can't decide about this one.  It isn't a great movie.  Too much gratuitous nudity and too many gratuitous sex scenes in it for this prudy movie viewer.  The story line follows a pickup artist that rips through girl friends who happens to meet a gorgeous woman who happens to have early onset Parkinson's.  They have lots of meaningless sex (hence all the nudity) until they fall for each other.  Of course dealing with the illness now gets thrown into the mix and stuff gets weird.  Because I'm chronically ill and watched as my 20 year marriage came to the brink of disaster due to my own illness, I find the couple's dealing with the illness almost trite and perfunctory.  They touched a little bit on the ugliness of chronic illness but it was brief.  Of course you also had the woman trying to toss the guy out to save him from dealing with this.  I was never this noble.  I'm not sure how many people would be.  I guess my suggestion is if you don't mind a lot of nudity/sex then this is a good time waster.   For this type of story line I much prefer No Strings Attached.  Less nudity same idea, friend with benefits who fall in love.  A much lighter movie.

Its Complicated
We had both seen this before but neither of us could remember it.  Seeing it a second time was just as delightful as the first.  Good story, good acting, some comedy, some romance.  Tons of fun.  I will more than likely watch it again.

The Devil Wears Prada
Same with this movie, we've both seen it and neither of us could remember much of it.  Streep is just amazing.  We both enjoyed watching this again.  BTW, Streep just won best actress for The Iron Lady.  She is such a joy to watch in any movie.

We saw one more movie and of course I can't for the life of me remember what it was.

Movies I want to see:
Tinker Tailor Soldier Spy
Adventures of Tin Tin
The Descendants
The Artist
all the Harry Potter Movies (I've missed the last few and can't remember the story line from the earlier ones)
Breaking Dawn
The Help
Midnight in Paris
Rise of the Planet of the Apes
My Week with Marilyn
the new Mission Impossible movie
Casino Jack

Tuesday, February 21, 2012

Things That Make You Go 'Hum'

On Friday afternoon, I finally managed to haul my butt into the shower and wash some of the stink off.  I put on fresh clothes and settled back down on the couch to recover from the exertion even though I shower sitting down.  About 2am Sunday morning, roughly 36 hours after my shower, I realize that I put my underwear on inside out.

Yup, it has been that kind of week.

Wednesday, February 15, 2012

Saturday, February 11, 2012

Sick Humor

Instead of my whining about my guts again here are some sick jokes that showed up in my email today:

 A man rushed into a busy doctor's surgery and shouted, "Doctor! I think I'm shrinking!" The doctor calmly responded, "Now, settle down..You'll just have to be a little patient."

An Indian chief was feeling very sick, so he summoned the medicine man. After a brief examination, the medicine man took out a long, thin strip of elk rawhide and gave it to the chief, telling him to bite off, chew, and swallow one inch of the leather every day. After a month, the medicine man returned to see how the chief was feeling. The chief shrugged and said, "The thong is ended, but the malady lingers on."

A skeptical anthropologist was cataloging South American folk remedies with the assistance of a tribal elder who indicated that the leaves of a particular fern were a sure cure for any case of constipation. When the anthropologist expressed his doubts, the elder looked him in the eye and said, "Let me tell you, with fronds like these, you don't need any enemas."

and because I'm an engineering geek here is a math one (hint: think back to geometry class):
There were three Indian squaws. One slept on a deer skin, one slept on an elk skin, and the third slept on a hippopotamus skin. All three became pregnant. The first two each had a baby boy. The one who slept on the hippopotamus skin had twin boys. This just goes to prove that... the squaw of the hippopotamus is equal to the sons of the squaws of the other two hides.

Wednesday, February 8, 2012

Pros/Cons Docs

Just had an interesting conversation with my shrink.  The whole thing got started because I went on a rant about my doc instigating the possible revocation of my driver's license.  After I got the rant over with and we got through the discussion of what to do next, we moved on to whether I should keep my doctor or not.  Of course my husband wants me to dump him.  Hubs reasoning is simple: 1) hubs has no tolerance for indecision and the "wait and see" mentality and 2) the concierge service is expensive.

First let me explain concierge medicine since this is integral to the rest of the post.  I pay an annual fee of $1500 so that I get access to my doctor 24/7.  I get half hour appointments often same day.  I always see him and not a nurse.  I can call him directly after hours without having to go through an answering service.  I have his email.  Blue Cross pays for the medical services, appointments and tests.  What I pay for is access and continuance of care.  And yes, it is elitist and classist and I had to really think hard about it before I signed up years ago.

So here is my pros and cons list with regard to my doctor.  This exercise is to help me decide whether I should stay with him or not.


  • He believes in CFS/ME.  He knows it is real.  He doesn't doubt me or any of my symptoms.  This is HUGE!!!  
  • He treats me well and listens to what I have to say (most times).
  • He tolerates my use of alternative medicines.
  • I always see him even for little problems, which leads to a continuance of care that I haven't had with other practitioners where I get foisted off on the nurse practitioner.
  • I have half hour appointments.  Longer if need be.
  • I can talk with him on the telephone or via email for off hour care or problems.
  • He is good about giving me referrals I ask for.
  • He is good about adjusting meds for my weird reactions.
  • I've been with him for years so he knows me prior to CFS.  He knows I'm not faking or seeking attention or a slacker.
  • He is good about giving me med samples if he has them so I don't have to pay for new meds that may not work for me.
  • He is good about filling out forms for work, insurance, legal and anything else.
  • He is good about dealing with my lawyer and writing affidavits.
  • I can get same day or next day appointments.
  • I don't have to wait. He runs on time.
  • He is a pretty good physician.
  • He is genuinely concerned about my physical and mental health.
  • He is part of the Winchester Hospital network which is one of the most highly rated hospitals in my area.  My hospital care has been top notch.
  • I have access to Tufts Medical in Boston with some of the best specialist  in the area.
  • He has a wait and see attitude.  If I want something done I have to push.  It took my husband going in with me for me to get to see a virologist when I first became sick.  This lead to me not seeing the specialist in Boston until I was sick for six months.  This is a BAD problem for me since I tend to not push for things but I know how to deal with this problem and it isn't insurmountable.  I just have to grow a pair.
  • He sometimes skips tests that later would have helped diagnose/document problems.
  • He always says my gait is fine even if I am using a walker to get around with and can't walk unsupported.  Not sure why this keeps happening.  
  • He forgets to set up referrals, particularly if he doesn't think they are important but they are ones I've requested.  I have to call to remind them.
  • He doesn't like prescribing pain meds.  I will have to find a pain clinic if things take a turn for the worse.
  • He didn't discuss the potential revocation of my driver's license with me first.  I wouldn't be so angry if he had explained his reasoning first, instead of my finding out from the copy of the placard application.
  • It costs $1500 to see him.
So I guess I'm staying with him.  At least for now.  The cons aren't that bad and I have work arounds for most of them.  I get to much good stuff by staying with him even if I do have to pay extra.  Hubs is just going to have to accept it.

Tuesday, February 7, 2012


Had my glutathione IV this afternoon.  This is the first time I've gone two weeks without one.  I'm feeling so much better.  My head is clear.  My good mood is back.  I'm walking around the house unassisted.  I'm going to have to tuck my walker away.  My headache is gone.  My body aches have disappeared.  My lymph nodes don't ache anymore.  Woohoo!!!

Well, I know the answer to one question I had, "is the glutathione still helping?"  Why, yes it is and I'm not going to go more than one week without one for the foreseeable future.

I also talked to the prescribing doc about the lipoic acid IV reaction.  He said he thought it was a detox reaction but I don't agree with him.  I've been through several detox reactions now and they weren't similar to this at all.  All my symptoms match the list for blood sugar crash.

My interpretation of what happened is this:

  1. Monday: blood sugar crash from lipoic acid IV
  2. Tuesday: CFS reaction to stress from blood sugar crash
  3. Wednesday: inability to sleep from lipoic acid
  4. Thursday on:  toxin buildup from lack of glutathione leading to headaches, dizziness, brain fog, bad sleep
I feel so much better this evening.  I can't wait to get a good nights sleep under my belt.  I should be somewhat functional tomorrow.  How great is that!?!  At any rate the doc and I agree that I won't be having any more lipoic acid IVs which is just fine by me.

Sunday, February 5, 2012

Another Blow

And yet another blow from the medical community.  As someone else said, trying to navigate the medical community is no job for a sick person.  After all the specialists that didn't understand or want to deal with me, after the affidavits for the insurance companies, I thought I was back in safe territory.  I thought I was okay for a while.  But no.  

My handicapped placard expired and I had to send in papers to get a new one which meant getting the doctor to fill out the paperwork.  Silly me.  I left it blank instead of filling it out for him and just having him sign it.  What did he do?  Said that I needed a competency driving test.  

Yup.  That's right.  I'm in the middle of a crash where I've been canceling most of my appointments. I've also been driving less than normal.  However, I've discovered that it is less stressful if I drive myself to my local appointments than using the Ride (handicapped van service) but now my license is going to be revoked unless I show up at some distant office and take a road test.

Oh the joy.  So here are some of the hurdles my doctor has just flung in my path:
  • I have to read the driver's manual since it has been 35 years since I did a road test and the rules have changed.  
  • Did I mention that I have trouble reading and memorizing information???  The MA driver's manual is 168 pages long and I have to memorize it.
  • I have to practice driving since I haven't done it much this past year and I never could parallel park even when I was healthy.
  • I have to find a car/rent a car that has an emergency brake in the center console of the car so the guy testing me can use it if I screw up (they seem to think the ebrake will actually stop the car: dumbassses).  Yes my state no longer provides cars to take a road test in and unless my car meets their standards I can't take the test.  I drive an American car which has the ebrake on the floor, well out of reach of the passenger.
  • I have to pay for the car rental, the test and possibly license replacement (if my license expires prior to working this all out I have to pay for the new one).  If I fail the test or surrender my license I might have to pay for the full driver's ed before getting my license back.  This is over $1000 plus testing fees.
  • I have to make an appointment months in advance and hope to God that I'm going to be well enough on the day of the test that I can drive.  If I'm not crashed I might be able to boost this by having caffeine and sugar prior to the test and just suffer the consequences later.
  • I have to find someone to drive me to my road test in the rented car.  Which also means I have to pay for two drivers on the rental agreement.  Which also means my son can't be my driver since he is under 21.
  • I'm guessing that i'm going to have to surrender my licence in the meantime.  SUCK ASS!!
  • This means I'm going to have to go back to using the Ride or drive illegally and hope I don't get caught or in an accident.
So I'm angry.  This all sucks pond scum.  And yes I'm ranting.

However, I do have to wonder if loosing my license might not be a bad thing.  If the state decides that I'm medically unable to drive the insurance company can't turn around and claim their is nothing wrong with me.  As much as this sucks, as much as it inconveniences me, surrendering my license might be an advantage when my review comes up next winter.  So the real question is do I surrender it willingly or do I attempt the test and see what happens.

Wednesday, February 1, 2012

Sick Humor

Another Failed Experiment

No.  Not the diet.  Still working on that.  This one is a new med I tried Monday.  One of my holistic docs decided to try me on an alpha-lipoic acid IV.  I don't know the dosage but it was the standard starting dosage.  The nurse told me that she didn't know anyone that had any side effects from it and it was considered very safe.  It even helped a lot of people.  But I digress.  I need to back up a little temporally....

I saw both of my holistic doctors the other week.  They both ordered blood work but I had to be fasting.  I had already eaten so I figured I would do the fasting bloodwork prior to my Monday IV.  We got there ten minutes early, just enough time to have the blood drawn.  Of course the one and only nurse had gone to lunch and I couldn't get it done.  Poop.  On to the IV.

Now my glutathione IVs last about 15-20 mins.  So I had brought yogurt and cashews for a snack and I was going to eat a real meal when I got home about 3pm.  As soon as I got settled in the cushy chair, I had my snacks and the nurse came in.  She told me that the lipoic acid IV takes an hour and a half.  Rats.  I was going to be cranky and starving by that point.  Oh well.  I'll deal.

We got chatting and she informed me that the ALA had no side effects and people had done well on it.  She has been doing this for decades so I trust her opinion on these matters.  The IV went in fine and the ALA infusion was uneventful.  I felt fairly normal for a trip to Cambridge.  Tired.  Slightly dizzy but this was normal for me.

On the ride home my friend, who has been driving me for weeks, noticed that I was getting a little snippy.  I said I was very hungry and my blood sugar was probably dropping.  The ride home was without incident.  She dropped me off around 4pm and we said our goodbyes.

I made myself the last egg in the house and a piece of toast and a cup of tea.  I was still starving but I hadn't gone shopping so we were short on food.  All I had was a freezer full of rock hard slabs of meat.  Not something that can be thrown together for a quick meal.  Suddenly all the energy drained out of me and I HAD to lie down.  This is not uncommon for me.  Particularly after traveling and having my eating schedule seriously interfered with.  I enjoyed an hours quiet rest.  After which I forced myself to get up.  I still felt really lousy and knew my blood sugar was still off.  Okay.  I decided to give it a kick in the pants since I wouldn't be eating until hubs got home and took me out to dinner.  I made a Nutella sandwich.  Lots of sugar.  And a big glass of milk.  More sugar.  I should feel sort of better right???

We got the restaurant and now I felt nauseous and my guts were starting to hurt.  Uh oh.  Was it the milk?  Was it the sugar?  We ordered dinner and our salads came.  I ate but was feeling worse not better.  The main course came and I forced myself to eat.  My guts were in full rebellion mode by this point.  What did I do??  Was the milk bad??  Too much sugar??  I felt much worse than my normal sugar crashes and food always fixes them.  What the heck was wrong??

We drove to the supermarket.  The plan was to do our grocery shopping.  The list was in my head so hubs couldn't do this alone.  I needed to go with him.  However, by the time we pulled into the parking lot I was on the verge of throwing up.  I felt so sick.  My back was screaming in pain.  My guts were roiling.  My muscles were cramping.  My intestines were cramping.  He came to my door to help me out of the truck and I just burst into tears.  I couldn't do it.  I was so angry at being so sick I can't even get pushed around the market in my wheelchair.  When is this going to stop!?!  He hugged me and told me to stay put.  He got the eggs and mayo that were needed for the next day and rushed me home.  I took aspirin and settled into my sofa sloth pile of pillows.

He went out to run one more errand and I asked for some ginger ale.  Now I don't normally drink store soda due to the high fructose corn syrup in it but I needed something to settle my stomach which was still doing contortions.  The soda did the trick.  I started to feel better.  Of course now I was hopped up on sugar but my guts settled down to the occasional rumble and my muscles were no longer cramping up.  I was feeling somewhat normal.

So what happened??  I did a little research and it turns out that ALA can cause a serous drop in blood sugar levels.  Apparently I had gone fairly hypoglycemic but because it was drug induced rather than insulin induced the small amounts of sugar didn't work.  It wasn't until I drank the whole soda that I started to feel better.  I also think the aspirin had something to do with it as well.  I should have gone to the hospital but rational thought doesn't work too well during a sugar crash.  Also with this damned illness it can be difficult to determine if it is the CFS that has gone wonky or something else.

I was feeling guilty for eating so much sugar last night.  But after I found out about the severe drop in blood sugar from the ALA I figure it probably saved me a trip to the ER if not saved my life outright.  I was only a few steps away from passing out.  No more ALA IVs for me!