This is TOO Choice!

A little googling and we found where the culprit is hiding out these days since she fled Usenet.

Her version of the story there differs from the one she told the judge, and makes her appear to be the innocent victim of me.  She just doesn't seem to have a clue why I would be annoyed with her after being told by the police I wasn't allowed to even set foot in my own house, not even to get my medication.

I find it particularly amusing that she claims that a 6-room, 880 square foot house cannot be cleaned by two healthy people in 60 days.  That's 10 days a room.  Even if every single room had been stacked floor-to-ceiling with boxes, it would not take 10 days to cart them all down to the basement.  But in fact, the room with the most boxes only had about a dozen.  They should've been able to scrub this place top-to-bottom in three days at most, with a little initative.

There are so many lies in her rantings on that site that I cannot even begin to address them all.  So, let me start with one of the first ones, that I claim I cannot work.  Oddly enough, in the 2.5 months they were living with me in 2004, the person who wasn't working was her perfectly healthy husband.  I have owned my own business since 2000, a few months after I was let go from my full-time job because of increasing disability -- so you decide for yourself who is too lazy to work and who is doing as much as she is physically able.

She does an excellent job of "explaining" how my giving her 2.5 months of free room and board (and T-shirts and craft supplies and....) was somehow victimizing her.  And treating her to a day trip in which I paid for the car rental, the gas, the meals (including dinner at a nice restaurant), and some of her purchases, was also victimizing her because she had to drive.  Oddly enough, most people I know say that I was much too generous with someone who wasn't actually doing the work she was hired for.

Well, karma's going to come around and kick her in the butt one of these days.  Big time.

Small Claims Court Today

Fry's showed up -- Compaq didn't -- and claimed that they disposed of my computer on November 11, but don't have any paperwork to prove that it was donated to charity or what happened to it.  I know I called them in the first week or so of November (granted, a few days after the 30 days in their notice), and was told I had to talk to someone in the office, who never returned my call.  Maybe they didn't WANT to return my call because they were already in the process of getting rid of it that quickly.  They claim they didn't take a tax deduction for it -- oh, c'mon, what for-profit corporation donates to charity and doesn't take a tax deduction? -- so I have my suspicions that they "donated" it to an employee.  Since they didn't actually get cash for it in excess of the mechanics lien they claimed, they say they owe me nothing for the computer.

Then, in a last ditch attempt to avoid paying me even for the 3-year extended warranty that I'm getting no use from, they started arguing that there's a fee to cancel the warranty, and if the warranty is cancelled, then I have to pay for the repairs, and all sorts of other ways to make darn sure that they didn't have to pay me a cent.  Moral of the story: this is the last time that I will ever deal with Fry's. After buying half a dozen computers there, they still treat me like dirt.

In the other case, we won't hear the decision for another 3 weeks.  I had plenty of e-mails printed out to prove that she twists the truth to her own benefit, several things where her story after the fact, denying, bears no resemblance to her initial e-mails agreeing whole-heartedly to do it. 

And then, to prove my point that she will lie about anything to avoid responsibility, she repeatedly lied to the judge, and embellished on prior lies, that my witness is a lawyer, she knows he's a lawyer because he has his own practice, don't believe me when I say he's not, because she knows lawyers aren't allowed in Small Claims Court, and therefore, he shouldn't be allowed to testify because he's a lawyer.  My witness then testified that with one year of law school, he's a paralegal, not a lawyer, and has no idea where she got that notion.  (From the same fertile imagination that provided all her other explanations of why what she agreed to in writing isn't what she agreed to.  Say anything and hope people believe it's true without checking.)  In fact, lawyers aren't allowed in to serve as lawyers, but they are allowed as witnesses, but she had to lie about that, too!  She knew if he testified, the judge would hear that the condition of the house got significantly worse, not better, while they lived here.

Having thus set her up as a habitual liar, I made a good argument that she lied to the police, intentionally withheld information that would have given them reason to question whether I might just be out and about, and her "grave concern for my safety" was soooo overwhelming that when I finally called her, she never once said "thank God you're all right" ... she was more concerned with getting praise for calling the police and getting me into all this trouble.  Doesn't that priority prove she was lying about being "worried sick"? 

Well, faced with all the e-mails, they did decide it was in their best interest to admit they actually had promised to clean the house for free rent, but then tried to portray the house as a huge pigsty that was absolutely impossible for anyone to clean, even given 2.5 months, in contrast to Brian's testimony that it just needed a little work, but things that agency cleaners wouldn't do.  And those things remained undone after they moved out, because agency cleaners STILL refused to do them.

 

Going to Court Monday

Fry's now seems inclined to try to settle before I tell a whole courtroom full of people about their questionable practice of selling an $800 computer to satisfy a $0 mechanic's lien.

The other case, they haven't made any attempt to contact me to try to settle.  When we left off, I was told that I needed to apologize to them and thank them for the actions that resulted in my being evicted from my own home. 

Well, fortunately, I am a compulsive saver, and I still have the e-mails written immediately after that document how her story kept changing. 

It'll be interesting to see how the judge reconciles the fact that they lived with me for months and tried to guilt me into letting them stay much longer, with the later story that I shriek hysterically at her to the point she's afraid to be in the same room with me.  If I'm that awful to be around, then why would they have spent their last few weeks living here trying to persuade me that I'm going to die if I don't let them stay here rent-free forever to take care of me?

I'm off tomorrow to get the police report that will prove exactly what she told the police to convince them that the only reason I wouldn't answer the phone would be a medical emergency.  Then I can dispute each one of her lies to the police and prove that the judge cannot believe anything she says.  I have the e-mail proving that she was told I had a babysitting job, which gives a reasonable explanation for why I wouldn't be home for 2 hours; so she can't argue that I am home 100% of the time -- she sent a response to that e-mail proving that she read it.  And anyone with half a brain knows that if you've finally gotten a fussy baby to sleep, you're going to turn off the cell phone so baby doesn't wake up when it rings.

Basically, the only way she can possibly convince the judge that she acted as a "reasonable person" is to persuade him that she got her college degree out of  a Cracker Jack box and actually has an IQ in the moron range. 

Published in Ms.

original Klimas article in Ms. http://msmagazine.com/summer2006/wakeupcall.asp

 

MY RESPONSE (some of which was printed in the Fall issue – this is the complete text)

Thank you for printing Nancy Klimas' article on the facts behind CFS.

There has been a decidedly misogynistic view of this disease from the very beginning. I was told in 1987 that my whole problem was that I wanted to be a housewife and therefore "resented my husband making me work". Obviously, the doctor didn't know me very well ... who "made me" start my own business when I was 14? Or my second business at 18? Or my third a couple years before falling ill?

When I was a child, I played Office, not House; as a precocious feminist, the one thing I never wanted to be was a housewife. In fact, the arrangement was that I would work full-time while my husband finished grad school, doing only unpaid/underpaid field work toward his degree. Quite simply, he didn't earn even enough to pay the rent, much less food, utilities, medical bills.... If I had some deep-seated desire to be a housewife, I would have married someone with a good job, not a full-time student, whom I'd agreed to support for several years.

In 2000, a much younger (but no more open-minded) doctor attributed my "refusal to get better" to not wanting to work and made nasty comments about his false assumption that every divorcee applies for alimony. He was so convinced that I was simply too lazy to work that he falsified my records to sabotage my attempt to get Disability benefits, and taunted me "if you're able to get to my office, you're able to get to a job", oblivious to the fact that I had been fired for diligently getting to a job that I couldn't perform once I got there.

As Dr. Klimas notes, when anti-depressants made me sicker, it was not the doctor's fault for giving me something my body didn't need, but my fault for "not wanting to get well and return to work." Return to work? I'd been working freelance ever since losing my full-time job; I had bills to pay and couldn't do it if I didn't have some money coming in. Whenever I tried to bring up the problems I was having trying to do a little freelance work, he changed the subject. "Don't confuse me with facts, my mind is already made up."

In fact, one of the easiest ways to differentiate depression from CFS is the patient's reaction to exercise: a depressive who is forced to exercise will return energized; a CFS patient will return feeling worse. Before I got sick, I would often walk as much as 20 miles in a day on a weekend ... after getting sick, there were days that walking the 10 feet from the bed to the bathroom required a half-hour nap on the bathroom floor before I could crawl back to bed. Yet, doctors repeatedly attributed my not following instructions to "exercise my way back to health" to some sexist notion that women don't like to get sweaty, rather than listening to what I said about no longer being able to walk more than a few feet before collapsing. (In fact, research has shown that exercise is detrimental to CFS patients; enforced "therapeutic" exercise programs has left some bedridden for years.)

"Osler's Web" by Hillary Johnson carefully documents myriad misogynistic comments and misuse of research funds by CDC/NIH employees. This spring, CDC announced they had found "the first proof of biological basis" for the disease ... disregarding (by Harvard's Anthony Komaroff's count) 2000+ prior research studies showing biological abnormalities. However, it was observed years ago by independent CFS researcher Elaine DeFreitas that CDC was ignoring all the outside research showing organic problems, clinging to their own repeatedly-disproven theory that it was purely psychological. They are still stressing "stress" as the cause rather than the viral onset reported by most patients. (Mine started with a temperature of 105 and delirium for several days; my husband called it "brain fever", and repeated research documenting organic brain damage would seem to indicate that his lay diagnosis was more accurate than the doctors who tried to tell me that I was depressed, anxiety-ridden or work-phobic.)

Despite being aware from the beginning of men and children with CFS in both the Tahoe and Lyndonville epidemics, in the early days, CDC/NIH tried to pass it off as simply "depressed menopausal women". I was only 28 when I got the virus, so I didn't buy into that explanation, and the first book I read about CFS was written by a male patient, who certainly wasn't menopausal.

In the past, a disease with these symptoms was called Myalgic Encephalomyelitis (and still is called that in other English-speaking countries). In 1988, CDC decreed a name change to Chronic Fatigue Syndrome, which had the effect of laypeople believing it was nothing more than fatigue, doctors believing that any fatiguing illness fell into the category, and psychologists latching onto the similarity to the somatic condition "chronic fatigue". In fact, there are many other symptoms that are far more worrisome than the fatigue: at times, I cannot keep any food down for days/weeks on end; I have injured myself repeatedly by fainting; I have had many conversations with other CFS patients where "thing" is used both as a noun and a verb until one of us finally comes up with the correct word that we've all been looking for. This neurocognitive dysfunction, not the fatigue, is the primary reason CFS patients are unable to work successfully. None of this is apparent from the intentionally-derogatory name chosen by CDC.*

In fact, the symptom pattern is so unique that patient support groups can diagnose CFS with near-100% accuracy, while many doctors claim they don't recognize it even when you tell them the diagnosis you received from an expert.

 

www.CFSfacts -- where we give you the facts and dispel the myths 

* On a name change petition, Hillary J. Johnson, author of Osler's Web, commented that the name "Chronic Fatigue Syndrome" was selected "by a small group of politically motivated and/or poorly informed scientists and doctors who were vastly more concerned about costs to insurance companies and the Social Security Administration than about public health. Their deliberate intention -- based on the correspondence they exchanged over a period of months -- was to obfuscate the nature of the disease by placing it in the realm of the psychiatric rather than the organic. The harm they have caused is surely one of the great tragedies of medicine."

                         Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses,

                         Katrina Berne, Ph.D., page 10

Ripped off again

Last year, I had to buy a new computer.  Fry's knew what I planned to use it for and didn't talk me out of the Compaq.

 

Within a couple months, the Compaq died, and Fry's technician couldn't get even a flicker of power, i.e., the entire power system was fried. 

 

They gave me a better Compaq as a loaner.  Ten days later, that one also died, also of a power problem.  Took that one back to Fry's, with some new information that I had from several sources, including a professional geek, that Compaq is known for inadequate power supplies, and I should consider myself fortunate that neither of them caught fire (as many other people have experienced).  Compaq themselves told me I should turn it off for a portion of every 1/2 hour to avoid overheating ... oh, yeah, there's an efficient way to do business.

 

Fry's wanted to give me yet another Compaq as a loaner, but I couldn't risk alienating a third client in two weeks if that one also fried.  They wouldn't give me anything but another Compaq, so I refused another loaner and bought a Toshiba.

 

Compaq was willing to send me a new computer under the warranty UNTIL they heard that I had taken it to Fry's repair department.  Oh, if I'd sent it directly back to them, they would've replaced it, but because I took it to Fry's and Fry's sent it to them (basically untouched, since it was under warranty and therefore would be repaired by Compaq), Compaq declared the warranty void. 

 

At the point last year that my life was in upheaval because I'd been thrown out of my own home, and had cleaned until I'd made myself sicker, I got a letter from Fry's that if I didn't pick up the computer in 30 days, they'd exercise their rights under mechanic's lien, which I understood to mean that they would sell it.  Since I didn't really want the computer, and getting permission to move back into the house was my top priority, I didn't make it to Fry's in that 30 days.   It was fine with me if they sold the computer and gave me the proceeds.

 

However, I've never gotten the proceeds, and an attempt to have Mastercard backcharge them for the original purchase price got nowhere, so I had to file in Small Claims Court.

 

They called me this afternoon to "explain"that they donated it, and under mechanic's lien, they owe me nothing.  I'm not totally familiar with mechanic's lien law, so I will have to do some research, but as far as I know, if someone files a $1000 lien against your $1,000,000 house, they are only entitled to the $1000 ... not the whole value of the house.

 

And, since this repair was being done by the manufacturer under the warranty, the value of their mechanic's lien should be zero, therefore, I should be entitled to a payment of the entire fair market value of the computer if it had been sold as refurbished.  That Fry's chose to donate it rather than sell it doesn't let them off the hook for making sure that I have something for my money.

 

Clearly, I will never be dealing with Fry's again, and after what I've learned about the potential fire hazard, I will never buy another Compaq.

 

Bootstrapping or Backsliding?

The September 21, 2006 issue of the Sacramento News & Review (www.newsreview.com) contains an essay "Strangled by my bootstraps: Confessions of a disabled conservative".

The author speaks from personal experience with one type of disability. I speak from personal experience with another.

Since losing my job 6½ years ago, I have repeatedly tried to get back into the work world. And, invariably, wound up bootstrapping myself right back into bed.

My body is in extremely fragile balance – if I overdo, even slightly, my immune system becomes overwhelmed, can no longer keep the virus in check, and I wind up on the verge of hospitalization. That’s a far cry from someone with a physical disability who can improve their condition by obsessively rehabbing 12 hours a day, and then return to work full-time with some accommodations.

The paradox of CFS is that the more you do to try to help yourself, the sicker you get. Exercise can make you bedridden, and then there’s the side effects of the medications.

After years of pills that didn’t do what they were supposed to (sometimes having precisely the opposite effect), I finally got a sleeping pill that worked. For the year that I was on it, I was essentially bedridden by severe side effects. Finally getting the Stage 4 sleep required for healing did recharge my immune system, which resulted in 6 months of a 101 fever, and intolerable pain that made me pray for death. Thank God, I passed out regularly, so I occasionally had some relief from the pain. Can you imagine trying to work with a fever frying your brain and pain that goes well beyond a mere "distraction"? I tried it. The results weren’t pretty.

That wasn’t a "lost weekend", it was an entire year of my life lost in the fog.

I did feel better after the fever broke, but that’s "better" like having only a migraine after having both a migraine and four broken ribs. I still had a lot of problems. Still do. Just yesterday, a Central Nervous System dysfunction caused me to lose my balance while walking. I instinctively grabbed for the archway support so I wouldn’t fall, and wound up with my full weight torquing my shoulder (which already has bursitis) backward. The pain woke me up every time I moved, and the shoulder is now locked (again, though hopefully not for a whole year this time). Several times in thepast 24 hours, I’ve nearly passed out from the pain of the damaged shoulder combined with the spine that twisted as I went down and the hip that hit as I landed. Oh, yeah, and just the basic level of pain I live with every day.

Some of the disabled "need" government assistance because they cannot work at all, or because the costs of functioning are more than they can reasonably earn (even at minimum wage, 24/7 caregivers run $60,000/year ... not counting employer-paid taxes and benefits).

Like most CFS patients who were overachievers, I would give anything to go back to work, but it’s just not in the cards. There’s no effective cure, not even an effective treatment, to get us back to work. Only people who don’t understand how something with such a minimizing name could be so disabling that we claim we can’t work even a little.

Some days, "higher expectations" means achieving both bathroom and food.

There is a theory that CFS patients are encouraged to enjoy "the sick role" by friends and family who help out, and by receiving disability benefits, and therefore, they don’t get better. If that’s true, then those like me, who have received precious little help (usually by paying friends to do urgent chores) and NO disability benefits, should have all the incentive in the world to get back to work ASAP.

In fact, the only reason someone would choose to live below the poverty level instead of earning $50,000 a year is because they don’t have a choice. Because every time they go back to work, they become bedridden again, and have finally learned that there’s no way they can stay healthy enough to manage a job.

 

See also "You Should Get A Job", several posts back.....

Another doctor spreads false information

One of the morning news shows had an "expert" on to talk about how fatigue leads to weight gain.

The doctor leapt to the conclusion that anyone who gains weight while they are not sleeping well is amusing themselves during the sleepless nights by eating.

At the point that I gained 20 lb in one year, my house did not have central heat.  This being California, it also does not have insulation in the walls, so in winter, it can get down to 50 degrees overnight; even colder in the kitchen which has doors and windows that allow heat to escape.  Believe me, there is no food that is worth getting out of my nice warm bed at 3 AM to walk into a chilly kitchen and shiver for. 

One of my doctors didn't ask if I did it, he simply announced that I had to stop eating in the middle of the night.  In fact, in the last 6 weeks that I was working, I ate LESS than normal, because after working a full day, I had no energy left to fix dinner.  I'd simply collapse on the couch and stay there till I had to leave for work (which meant no breakfast, either).

These doctors also assume that you would only gain weight if you're not exercising.  In the time frame that I gained 20 lb in one year, I was walking at least 4 miles a day -- same exercise routine I'd had before.

In fact, it's been documented time and again by CFS researchers that the CFS causes changes in metabolism which lead to weight gain.  It has nothing to do with what you eat or how you exercise.  

If my weight gain were related to exercise levels, then I should have ballooned when I got too sick to walk to work and started taking the bus, and again when I stopped working and went back to eating.  Instead, my weight was about the same in May 1999, when the weight gain was first noticed, as it was in July 2000, and in November 2000, and in September 2001.  The only noticeable jump in that two-year period was when I gained 4 lb in one month while taking Synthroid (which would normally cause weight loss).  If that's not an indication that my hormones went wacko and caused the opposite of the normal reaction, I don't know what is. 

Any doctor who assumes everyone "eats out of boredom" needs to explain to me why, when I was home all day, every day, and bored out of my skull, my weight didn't budge.

I lost 30 lb in the year that I was on the sleeping pill that worked consistently.  And gained it all back in a couple months after stopping that pill and going back to my prior routine of being awake most of the night.  Since I was basically bedridden by the side effects of the sleeping pill, you can't say I lost weight because I exercised and gained weight because I didn't.  Quite the opposite -- I lost weight while unable to exercise, and gained 30 lb in a matter of weeks when I was again able to be up and about.

As much as doctors like to lay the blame for weight problems on the patient, and claim she's lying when she says that she does exercise and doesn't eat to excess, the fact is, I have seen it for myself, that the key to my weight is sleep -- not food.  When I go into relapse and the quality of my sleep is poor, I gain weight without changing my eating habits (or while eating less because I'm too exhausted to shop or cook).  When I go into remission, the weight drops off even if I'm eating more because I'm feeling well enough to shop and cook again.

Cortisol is a hormone related to sleep.  Cortisol is a hormone related to weight.  The link has been proven repeatedly, including in research centers where the patients had no access to food at 3 AM, so couldn't have been munching their nights away.  What is so difficult for these doctors to understand about that?

I'm not saying there aren't people who spend their sleepless nights in front of the fridge.  I lived with one.  What I *am* saying is that there are many explanations for weight gain, and the doctors should not accuse the patient of overeating without getting the facts.

A good friend of mine was taking medications known to cause weight gain.  Her doctor continually bullied her to lost weight by eating less.  She wound up in the hospital, where it was determined that she was eating almost nothing, surviving mostly on ice water, trying to appease the doctor demanding that she get down to a certain weight -- a weight that was impossible to reach because of the medication she was on, and not because she was eating far too much.  He never asked her to keep a food diary, he just assumed that the only reason anyone would be overweight is because they overeat, and at every visit snarked at her "it's not working, eat even less", without finding out how much she was eating in the first place. 

Doctors need to learn to listen to the patients and not ignore them.  With so many things, there are easy explanations for symptoms and there are less obvious explanations.  Leaping to the conclusion that someone is overweight because they eat too much may be correct in 90% of cases.  But then there are the 10% like my friend with her medication side effects, and me with my sleep-related cortisol imbalance, who gain weight even on fewer than 1000 calories a day; telling someone like that to cut back their food intake substantially can cause more problems.