Sunday, November 28, 2004

Fighting back

The gang from the FMS/CFS list has decided to inundate TV talk shows with letters asking for a show on FMS/CFS, showing the devastation it can cause -- some of the gang have been bedridden for years. I'm one of the fortunate ones ... most days, I'm able to get out of bed, though I might exhaust myself merely walking as far as the couch, and many days even a small amount of housework is impossible.

On the other hand, while I don't have the severe physical problems that they do, I'm having to deal with a bunch of documented lies in my medical records from someone who doesn't believe there is such a disease, and who set out to make sure that I wouldn't get disability benefits. If that meant lying that positive test results were negative, he was willing to do it. I guess he figured that I'd never read -- or wouldn't understand -- the actual lab reports.

And now he's testified with as many lies as there are in his medical records.

The Medical Board apparently feels that he can lie all he likes; their letters intimate that only if I'd died or lost a limb would the situation be serious enough to investigate.

Thank goodness, I knew to look in Business & Professions Code, and found out that the attorney general has power to investigate B&P violations. The A-G can't tell me anything more than "we're looking into it", so I won't know the status of their investigation unless I suddenly find that the doctor has been defrocked (de-stethoscoped?)

But at least I feel like I'm doing something pro-active, instead of just letting him get away with lying (and causing me to permanently lose any chance at State Disability benefits).  His refusal to give me either pills or referrals (or to tell me I'd be better off with another doctor) may have cost me any chance at returning to full-time work; statistically, if you haven't recovered after five years of relapse, you more than likely won't.  And I was three years in at the time I finally got an effective sleeping pill; at that point, I'd gotten so deep into the hole that I had a long way to go to get back out of it.  If he'd worked on the sleep problem right away, I might not have gone that far downhill.

If you'd like more information on CFS/FMS, visit And it would be really great if you could make a donation for research while you're at the site. They have found some organic problems that explain the symptoms, but need more money to find a treatment/cure.

Wednesday, November 3, 2004

Christopher Reeve, you are still my hero!

Shortly before his untimely death, Chris taped a political commercial in favor of Proposition 71, the initiative to fund stem cell research in California. Thanks to Chris, the proposition won. My hope is that this will find a cure for what I have, as well as the more-accepted things the commercials said they believe they can help.

Wednesday, October 27, 2004

Look! Up in the sky!

It's a bird, it's a plane, it's a......... flying pig?!

Under the non-light of an eclipsed moon, the Boston Red Sox win the World Series in a sweep.

Long live Fantasyland!

<singalong> Somewhere over the rainbow, skies are blue, and the dreams that you dare to dream really do come true!

For the first time in a long time, I have not been rooting for the Series to go the full 7 so that I (selfishly) will go the least amount of time between the end of the current season and the beginning of the next.

'Scuse me, I gotta go dig a big hole to see if Hell has indeed frozen over.

Monday, October 25, 2004

Happy Monday!

Thankfully, I was feeling good last week, when I had to go to the UN and my friend's initiation, so I managed to do both.  But, after a week of trying to act like a normal person, I came down with a bad cold and spent the whole weekend in bed.  This morning, all I had to do was go to the doctor to get some forms signed and stop at the grocery for more juice and soup; I came home completely exhausted.  Fortunately, I did think ahead while I was at the grocery, and picked up some frozen entrees, so I had Ginger Chicken for lunch, and will be having a good dinner, too, without much work.




Wall of Fame

Wrote this on 10/16, but haven't had a chance to post it here till today


Greetings from one of the Wall of Fame's first inductees, and one of the newest!

Skelly and I both converged on Copiague to raise a little hell for Homecoming Weekend.  Tonight was the induction ceremony, and Skelly made sure to point out that not only was his sponsor one of the initial honorees, but also the person who had come the furthest for the event.  (JetBlue $99 -- you no longer have any excuse for not coming to visit me!)

When one of the emcees made a comment that certainly Skelly was the only Copiague grad in South Dakota, he was quickly corrected by Skelly that Ray Decker is also there, and by me that I know *both* of them.  Skelly's going to be eating a bit of crow when he gets home -- there's a West Islip grad whom he has been razzing on the radio about how Copiague was going to kick some W.I. butt in the homecoming game, and ... well, you know what our football team is traditionally like.  Ray, could you bring him a tall cold one to wash down that crow, please?

We've both been having fun wandering around town and counting how many people scream "Omigawd, is that YOU?!!!"  25 years after leaving, and we still can't go anywhere unrecognized.

Anyone who wants to be nominated next year, just get in touch with either me or Skelly, and we'll be proud to affix our names to your application.  (In fact, we've got in mind to do a joint nomination of someone who shall remain nameless until he/she gets the congratulatory call inviting him/her to participate in next year's induction.  Bwahahahaha)

Skelly had bribed me with the offer of dinner if I nominated him.  I settled for brunch.  Anyone want to join us tomorrow morning?

Karen & Joe

World Peace Ribbon

I wrote this on 10/12, but haven't had a chance to post it here till today.

Ever since we donated the World Peace Ribbon Project to the International Day of Peace Vigil, my contact with that group has been after me to come to NY to meet with her.

So, Mom and I ventured into The City today, to have lunch with a representative of the United Nations.  We now have a lovely thank you letter (which I will retype for you later -- much too long to do right now).  After lunch, she suggested a visit to the UN gift shop.  Susana was, unfortunately, summoned back to work, so she arranged for her friend Lina to meet us at the gift shop so we could use Lina's employee discount.  So, I got some T-shirts and a tote bag, at 20% off.

Then Lina invited us to have a snack at the coffee shop, so we could sit and talk some more about The Ribbon, which apparently *everyone* at the UN has now seen and appreciated.

The Ribbon has been shown at the annual International Day of Peace Vigil, at Red Cross events, at 9/11 survivor support group meetings, etc., and everywhere it has been shown, it has been appreciated, and people come up to Susana to say how touched they are that complete strangers made this ribbon to memorialize their friends and loved ones.  And Susana makes sure to tell them about the people who had the idea, rather than taking the credit herself -- she sees herself as just the caretaker for this work of art.

Thanks to everyone who participated in this project, and especially to Nathalie for having the idea!!!


Tuesday, September 21, 2004


I just had a phone call from Comcast High-Speed Internet.  Got it out of the girl that she's 17 years old.

She's trying to tell me something about computers, and I pointed out that I have had a computer since 1982.  She said that was impossible, they didn't start selling home computers till 1990.  (Oh, then what WAS that on Larry's dorm room desk in 1978, if not a computer?)  By 1990, I was lusting after Heidi's T-1000 laptop.

Then I said I was perfectly happy running a 56,000 baud modem.  She corrected me that it's either "bits" or "bytes".  I suggested her homework for the day was to look up baud and determine that the old lady did, in fact, know more about computer technology than she does.  Then she corrected me that "anyway, it's a 56K modem, not a whatever you said."

At this point, why would I want to buy anything from someone who is clearly both a liar and a moron? 

So she screams at me some more about how she knows more about computers than I do.  Oh, yeah?  I'd just like to see her deal with a computer that only speaks DOS ... or worse yet, C/PM.

Clearly, she knows nothing about either computers or telemarketing.


Friday, September 17, 2004

Bonds. B Bonds. #700

One blessing to my being so sick for so long is that I have been home, in bed, resting, and thus watching all of his milestone home runs, live, instead of only on the 11 PM news.

It never rains but it pours! I'd just spent several hundred dollars on a larger hard drive and a CD burner to back up my computer, and today needed to spend another bunch of money replacing the power supply. Most definitely NOT what I was planning to do with that much money.

Thursday, September 16, 2004

Found out that both my friends in the path of the hurricane came through with just minor damage. I hope this means I'll sleep better tonight, not worrying about them.

Monday, September 13, 2004

The bath salts helped! I was able to do a few minutes' stitching this afternoon. No day is wasted if you have stitched. I wish I could stitch for hours as I used to, but at least I'm improved from last year, when I couldn't stitch at all for several months.

Sept. 13, 2004

By way of introduction, I'm Karen, age 46.  I've been diagnosed with Chronic Fatigue Syndrome since 1988 and fibromyalgia since 2001 (though it probably existed since the early 90s).  Since 2000, I've been off work due to the symptoms; I'm still fighting for Disability benefits because one doctor filled my records with lies, in a clear attempt to make sure I never got a cent.  (For example, he ignored the diagnoses of two specialists and claimed I was "self-diagnosed".)

Had a sinus headache when I went to bed last night, and woke up with it still.  A long nap didn't help.  The other day at Target, I found some bath salts for colds, fragrant with eucalyptus, which seems to help a little. 

So far today, I have not felt up to doing any stitching; I don't have anything at the mindless stage, so I have to be alert enough to count properly.  The piece I've been doing lately has a lot of color changes in the section I'm now at.

Fortunately, I got some teriyaki take-out from the Kobayan Temple Fall Fair yesterday, so I had some good food that just needed to be heated.