Why CFS is not C *F* S

I've been having a discussion with Jodi Bassett, author of the well-researched "Hummingbird's Guide to CFS", about Fatigue.

As Jodi points out, "fatigue" is not the primary symptom, Exercise Intolerance is.

http://www.ahummingbirdsguide.com/fatiguequotes.htm

http://www.ahummingbirdsguide.com/fatigueschmatigue.htm

Jodi is also working on a compare-and-contrast of CFS and fibromyalgia, which will prove that they are not the same thing.  I've asked her to post it as a comment here when she's done.  Too many objective test results which exist in one are completely absent in the other.

Although  60% of people with CFS are eventually diagnosed with fibromyalgia, I have to concur with Jodi that they're not the same thing.  It's been proven that you can create fibro-like symptoms in healthy volunteers by depriving them of sleep for a week.  Why is it not equally likely that you can create fibro-like symptoms via sleep deprivation in CFS patients who are not getting the deep, healing sleep they need?

Which brings us to another thing that patients understand and many doctors don't seem to: sleeping pills do not produce natural sleep. They simply put you unconscious for 8 hours so that you're not stressing over not sleeping.  The healing effects of deep sleep don't happen.  I've had better recuperation with two non-prescription treatments: 5HTP (tryptophan) and a Sleep Number bed, both of which promote NATURAL sleep.

 

UCD's own Dr. Erich Ryll, who treated the 1975 epidemic at Mercy San Juan Hospital, writes "Cultures were obtained for all known viruses, bacteria, mycoplasma, and rickettsiae, and all were found to be negative. The disease was apparently due to an unknown agent, presumably a virus." In other words, where Price states "all tests were negative", this is precisely what Dr. Ryll would have expected of the tests performed by Price.
It becomes quite obvious why their lawyer had to use an "expert" that no one in the Northern California CFS community has ever heard of. The head of the support group in his area and I both googled him, and both came up empty on what expertise he has in treating CFS.
I feel vindicated that they couldn't find an actual CFS expert to defend their screw-ups.

Ready to Name Names

Since the doctors have refused to negotiate a settlement, I didn't have to sign a confidentiality agreement, which means that I'm free to name names.

I found factual errors on almost every page of my records from University of California, Davis, Medical Center.  As much as their lawyer would like to claim that the things I don't agree with aren't open for dispute because they are the doctor's opinion, most of them are presented as fact.  The "facts" as contained in their medical records were twisted in ways worthy of a top-notch lawyer, leaving the reader with a completely different impression than what I actually said.  For just one example, a doctor claimed that I stopped working in 1988, the year I was diagnosed.  This should be of great interest to all the firms that gave me paychecks until 2000!  Another claimed I was self-diagnosed, which is disproven by records from multiple doctors who wrote down the CFS diagnosis and signed their names to it.  I know I never said what was written down.

So, since I can now name names, if you have CFS, stay far away from UCD, and Doctors Price, Kumar, Drennan, Leek, Manhart, and Taylor.  They may tell you that they want to help you, but they didn't help me, not by improving my health and not with accurate documentation that would help me get disability benefits. 

A letter from Christopher Price says that all tests were normal; what it doesn't say is that the tests that were performed should have been normal for a CFS diagnosis.  The tests that should have been abnormal weren't done.  But the way it's written, the judges have repeatedly reached the obvious conclusion that the tests were normal because I don't have CFS.

Speaking of naming names, Seanette claims that the house was clean when she moved out.  Brian has stated that the house was a bigger mess when she moved out; he had to put things back in the guest room that they had moved out to the living room, and numerous purchases that weren't put away when I asked them to help were piled on the love seat (which had been clear when they moved in).  I was doing some tidying in the dining room this week, and found a note and envelope addressed to her, dated August 2004, half-under a chair cushion.  It's not the first piece of their mail that's been found since they moved out -- the first person who swept under the dining room table found several bills addressed to them.  How can she claim that she did a good job of cleaning the house when I have proof she didn't even put her own garbage in the trash?  That certainly sounds more like what Brian and I say, that she simply added to the existing clutter and although she may have done a few chores in the 2 1/2 months she lived here rent-free, the net result was more mess, not less. 

 

Two New CFS Research Breakthroughs!

Research: Chronic Fatigue Syndrome is a Legitimate Medical Condition

Researchers at Georgetown University Medical Center have found that Chronic Fatigue Syndrome (CFS) may be rooted in distinct neurological
abnormalities that can be medically tested.

http://www.up0.net/ct.html?rtr=on&s=d7m,1h92,6k,dek3,a8gk,7xo1,2hxa

Study of Cerebrospinal Fluid in CFS, Fibromyalgia, and Gulf War Illness Patients

Chronic Fatigue Syndrome (CFS), Persian Gulf War Illness (PGI), and fibromyalgia are overlapping symptom complexes without objective markers or known
pathophysiology. Neurological dysfunction is common. Researchers assessed cerebrospinal fluid to find proteins that were differentially expressed in
this CFS-spectrum of illnesses compared to control subjects.

http://www.up0.net/ct.html?rtr=on&s=d7m,1h92,6k,dupn,k8oy,7xo1,2hxa

 

Received from CFIDS.org:
Send greetings of the season to your friends and family and help provide hope and encouragement to everyone affected by CFS.
Visit http://www.cfids.org/cfidslink/2005/seasonal-cards.asp to learn more about these unique cards that support the fight to end CFS.
60% of the purchase price can be considered a tax-deductible donation.
Created exclusively for the CFIDS Association of America, the watercolors featured on the cards were painted by Hallie Kretsinger. Now a high school junior, Hallie first began feeling the effects of CFS when she was in the fourth grade.
Karen speaking: I ordered these cards, and received them just a few days later, so it's not too late to place your order. There's no sentiment in them, so they're appropriate to Christmas, Chanukah, Midwinter ... just rubber-stamp, handwrite or computer-print a label with your choice of greeting.
HAPPY HOLIDAYS, whichever one you celebrate!

2000 research studies prove CFS has physical origins

Biology of chronic fatigue gains focus - The Boston Globe     

      For years, many doctors and others dismissed people with Chronic Fatigue Syndrome as depressed, lazy, or just plain whiny.  Now, a slew of research -- more than 2,000 scientific papers by some counts -- is suggesting that chronic fatigue is not a psychiatric illness, but a nasty mix of immunological, neurological, and hormonal abnormalities.

      Several types of brain scans, for instance, have found different patterns of blood flow to certain regions of the brain in patients with chronic fatigue, and other studies have shown that patients have difficulty in thinking and processing information, and are unable to do several mental tasks at once.  ''There are objective brain abnormalities in many patients with CFS that are consistent with the symptoms patients describe," said Dr. Anthony Komaroff, a chronic fatigue expert and editor-in-chief of Harvard's Health Publications, a division of Harvard Medical School.
    .
      Judy Foreman is a freelance columnist who can be contacted at foreman@globe.com. 
      © Copyright 2005 Globe Newspaper Company.

Hopefully, this puts to rest once and for all the notion that CFS is just depression, laziness, unwillingness to work, or any of the other things I've been accused of.   I have had "off the charts" blood test results, which cannot be faked. 

Certainly no one in her right mind would give up a job paying $50,000+ a year in order to live at the poverty level.  That's the thing that most people don't get -- disability benefits aren't enough to live on unless you have an employed spouse, which I don't, or can live with your siblings/children (which I don't have).  They have the notion that people on disability can afford, on their own income, to take vacations and hire household help, etc., etc.  In fact, most people on disability can't even afford their medications without financial assistance from friends or family.  Horrifying, isn't it?  People on disability are urged to get back to the work force, but if they're single, they have no way of paying for the physical therapy or medication that would allow them to do that.

It's not a life of leisure, it's a life of constantpain and penny-pinching.  With as good a paycheck as I earned most of my life, the government expects me to pay for housing, utilities, groceries, medical care and prescriptions on the equivalent of minimum wage.  Yes, you read that correctly.  All the things that healthy, employed people cannot manage to pay from their minimum wage paycheck, PLUS hundreds of dollars a month for prescriptions, for a wheelchair if you need one, for a housecleaner if you need one, for a car because you can't walk far enough to take the bus....  This is something that needs to be understood by all the people who think that there's any benefit from going on disability; the money isn't that good -- you'd have to be incredibly lazy to think that subsisting on a quarter of your former income is better than working and being able to afford to pay your bills.

Friends and Cities

I've been told (by people living in small towns) that if I cannot get help from my friends and neighbors, it must be because I have demanded too much from them already.  It is simply beyond the ability of small-town people to understand that life in a big city isn't the same as life in a small town.

Here's the proof that the problem is society, not me: From the San Diego Union Tribune
http://www.signonsandiego.com/uniontrib/20051106/news_mz1h06alone.html
"In large metropolitan areas, where neighbors often remain strangers, preparing communities to pull together during emergencies is a challenge. ... In his 2001 book "Bowling Alone: The Collapse and Revival of American Community," Harvard sociologist Robert Putnam concludes that civil society is deteriorating as Americans withdraw from families, neighbors and civic groups."

"Networks of friends today are connected by telephone and the Internet, said Larry Lyon, a sociology professor at Baylor University. There is less need to get to know the people next door. Thirteen percent of those polled here in 2001 said they never spoke to their neighbors, compared to about 9 percent nationally, said Kelly."

This, in fact, matches my experience while living in San Diego, and also while living in Sacramento.  I once lived in an apartment complex for five years and never knew the names of any of my neighbors: they came home from work, went into their apartment, and never came out.  Since they left for work and returned from work at different times than I did, I had no opportunity to cross paths with them.  If I did meet up with them at the mailbox on a weekend and try to start up a conversation, they reacted with suspicion, because, in the big city, we've all been taught to be leery of strangers.

As far as willingness to help someone, 20 years ago, a co-worker was having a difficult pregnancy, and was ordered to bed for the duration.  I couldn't get any one of our co-workers to volunteer to help clean her apartment, or even bring her a casserole.  They were all "too busy" to go a few miles out of their way to drop off some food. One or two muttered that they were glad that she was confined to bed, so they wouldn't have to buy her a baby shower present. 

10 years ago, a much-beloved co-worker had a stroke and was bedridden for 5 years.  In that 5 years, only 2 people from the office went to visit her; I went more often than the other person, who went only once.  After the first greeting card circulated by the office manager, the only time she got a card was if I sent it.  Everyone wanted to know "how's Ginger?," but no one could be bothered to make the call to find out; they were willing to wait for her to call us.  So, it doesn't for a minute concern me that none of my friends from work will offer to help, because they wouldn't lift a finger for Ginger, either, and I know how much they loved Ginger.  Their refusal to help me has nothing to do with my personality, and everything to do with theirs.

One of the neighbors, who loves to garden, offered to do my front yard for the enjoyment.  But she won't do anything else to help; the front yard affects their property value, but the back yard and inside the house don't.  With half a dozen police cars out front, and the police asking all the neighbors if they'd seen me, the whole block was aware that I needed help with housecleaning, but no one offered to help, or even to give me the name of a good cleaning lady. 

Even when I was going out to go to work every day, I could go weeks without seeing any of the neighbors; as sociologist Putnam describes, they isolate themselves in their houses instead of issuing a standing invitation to coffee klatsch.

A women's magazine recently ran an article about a group of friends who stepped in to help when one of them had a medical problem.  The response I received to my e-mail indicated that, in fact, the magazine had gotten far more comments from people saying "I wish" than from people who'd had a similar level of help from friends.  So, I'm not alone.

Those of you who live in small towns where people still connect with their neighbors, thank your lucky stars, and pray that this trend doesn't come your way.

Obviously, my detractors are not interested in learning the truth by reading the comments posted here by people who know me IRL. They've made up their minds about how I am, and don't want to find out they're wrong.

They also don't want to know that I meet (actually, I far exceed) the Ninth Circuit Court's definition of what constitutes "disability". (In Reddick v. Chater, it was made clear that needing to take one day off each week to rest meant she was disabled. I rest more than that.)  There's no legal requirement to be 100% bedridden to be disabled; there IS a legal requirement that you cannot work five consecutive eight-hour days, which I cannot. There IS a legal requirement to "maintain regular attendance", which I cannot.  The Ninth Circuit has been quite clear that "work when able" is NOT a reasonable accommodation under ADA -- you must maintain regular attendance.

I've also been told by a lawyer that I can't ask to be allowed to work at home, or lying down at the office, because that's also not what the ADA says must be offered to me.  So, the people who have legal training and have read what ADA requires employers to provide say that I am officially disabled. The opinions of people who can't tell whether I'm typing this lying down (which I am, because I'm having dizzy spells again) that the ability to type means that I am able to work, are meaningless until ADA is amended to say that the accommodations I need to be able to work are available to me.

The fact that I can work from home a few hours a week does not equate to the ability to work in an office 40 hours a week, any more than the ability to walk two blocks means that I am physically capable of running a marathon, or the ability to pick up a 7-pound cat makes me a champion weightlifter.  Even if I participate in NaNoWriMo, which requires writing about 1700 words a day, that proves only that I can type for half an hour a day, not that I can type as much as would be required in an office job.

Unfortunately, one doctor had the notion that because he had a one-page typed letter from me, I was not legally disabled.  He didn't know who typed it; obviously, if someone else had typed it, it didn't prove I could work.  He didn't know if it took 5 minutes to type or all day; obviously, if it took me all day to type one page, that doesn't prove that I can do enough work to keep an employer satisfied.  All he knew was that I was not 100% bedridden, and without knowing that the LAW says that's not required, he wrote a letter saying that I'm not disabled.  His treatment is most notable for the tests he DIDN'T do -- the ones that would have shown physical abnormalities.  When those tests have been done, they've been positive -- one was described to me as "off the charts".   That one shows infection or inflammation, and heart problems, things that can't be cured with counseling or the anti-depressants being forced on me over my objection that multiple psych evaluations over a period of years have shown no depression.

The judges keep going back to his falsified medical records (he wrote down what he wanted to hear, and not what I told him) and his misunderstanding of what's legally required for a disability determination, and ignoring the other doctors who've given me a slew of restrictions and limitations, done tests that were positive, so that they -- like my detractors -- do not have to admit that CFS is a real, physical, disabling disease and not something that can be overcome with counseling, positive thinking, and forcing myself to get up and do things.  

In fact, forcing myself to get up and do things makes me worse.  Following doctor's orders to exercise my way back to health, I walked every day for a week and got steadily worse until I wound up back in bed, having undone all the progress I'd made.  Just as research has shown will happen if it's really CFS and not depression or fibromyalgia.  

That research report is available at http://www.dynamic-med.com/content/pdf/1476-5918-4-10.pdf  Succinctly, "while our CFS subjects were able to increase their daily activity, they were unable to reach daily levels similar to sedentary controls. ... our daily exercise program was accompanied by a worsening of CFS symptomology." 

I need your help, please!

I need your help, please!

The Disability judge will not believe that I am disabled because I do not have weekly cleaning help, but Social Services says that I cannot have cleaning help until I am awarded Disability benefits.  Catch 22.

In pursuing this with Social Services, I'm informed that In-Home Support Services (IHSS) is a Federal program, the rules are made by the Federal government, and the only way to get help is to get the rules changed.

Because there is no blood test specifically for CFS/fibro, and because the tests which demonstrate real physical problems are only available in a few places in the US (often too far for seriously ill patients to travel), it can be as much as ten years from the time a CFS/FMS patient applies for Disability and the time they are finally approved.  Meanwhile, if they don't have friends or family to help, they may find themselves in the same position as I -- being evicted for being too disabled to clean and too poor to hire a professional cleaner (who may be unwilling to do anything but dusting).

Although the government believes your friends, family and church should help you, I can tell you from numerous conversations with others that I am not the only disabled person who has been refused help from those sources.  They believe that you should be able to get government help.  Everyone points the finger elsewhere, but no one actually does anything useful.

So, I'm asking you to please do something useful.  Please write to your Congressperson and Senators (and if you don't have one because you're outside the US, write to my Senators, Dianne Feinstein and Barbara Boxer) and urge them to revise the IHSS rules so that evaluation of the need for supportive services takes place immediately when SSDI is applied for, and not as much as ten years later when SSDI is finally approved.  My situation proves that in that ten years that CFS/fibro patients are waiting for SSDI, they need support services -- they can't wait years to have their house cleaned or meals prepared or assistance with bathing. 

CFS/fibro are real diseases with physical causes.  One expert in both AIDS and CFIDS has observed that a CFS patient feels every day as badly as an AIDS patient in the last few months of life.  Unfortunately, because CFS was ahead of the technological curve in the 1980s, many disability judges still have the perception that it's fakery, and believe that the person can work, and will return to work if their application is denied.  (Trust me, over the past nearly-six years, I have made repeated attempts to work, and after 2-3 days was already too exhausted to get out of bed.  If I could work, I would, but the doctors say that I cannot, and so does my experience.)  I've run into a series of disability judges who refuse to accept the doctors' statements, because doing so would require them to change their minds about the veracity of CFS as a physical (not psychological) disability. 

As Dr. Starlanyl says, if all blood tests are normal, it may simply mean the correct tests have not been done.  In preliminary results of a poll being run by CFIDS.org, fully HALF of CFS patients have never had their fatigue professionally evaluated.  A Functional Capacity Evaluation wasn't done, their doctors didn't even ask questions about the level of their fatigue.  The problem isn't that the fatigue doesn't exist, it's that no one is putting test results in the medical records to support the patient's claims.

Although IHSS seems to believe that right up until the day you are ruled disabled by a judge, you are capable of taking care of yourself and your home, and magically, overnight, become incapable because you're now eligible for assistance, this is not the case.

Please don't let one more CFS patient be thrown out of a dirty house she can't clean herself -- write that letter to Congress today, urging that In Home Support Services be provided as soon as they become necessary, so that judges will not make the same erroneous determination, that I do not receive IHSS because I do not need help.  Although he would like to believe that I have the ability to do all the cleaning myself, which would prove that I also have the ability to return to work, my current situation proves that I don't have the ability to clean -- what I have is the inability to get needed help ... not from friends, not from family, not from churches, and not from government. 

When the mayor arrives in her office this morning, she will be greeted by a fax explaining that I am about to lose my home because I cannot do the cleaning myself, and no one else is willing to do it for me. 

The inspector just doesn't get it that threatening me isn't going to improve my health enough that I can do it myself, and threatening ME isn't going to make hired cleaners any more reliable about actually showing up.   The real source of the problem is other people, not something that I can do anything about.

Maybe the mayor has some ideas that my friends and I have not come up with over the past five years of trying.

I've tried agency cleaners, who said the insurance prohibited them doing some of the things I needed done.

I've tried independent cleaners, who were so flaky and inefficient it became obvious why they couldn't get a job with an agency.

I've tried friends, who outright refused, or else said they would and then didn't really.

I've tried several churches of my own denomination, and a friend tried both her childhood and current denominations, and we didn't get a response, even when it was made clear that I was willing to either pay the cleaner or make a donation to the church.

I've tried several schools with a community service requirement, which I was assured included helping the disabled, and didn't get a call back.

Social Services won't take my word for it that I need help, they want someone else to start the process, but it doesn't seem to be in anyone's job description to make that call.  My doctor is on active duty in Iraq, so I can't have him call anyone till he gets home next month, but by then it will be too late to solve my current problem.

Maybe the mayor has the authority to extend the deadline.  Maybe the mayor can send me her own cleaning lady (or her teenagers).  Maybe the mayor can send me a couple of her campaign volunteers or the gal who cleans City Hall.  Maybe the mayor can have all the people who've defrauded me arrested.  But at least I won't be fighting the cleaning battle alone any more.

 

Eviction/Cleaning Update

The inspector came when my ten days were up and since he saw signs of progress being made, gave me an extension.  

 

According to him, the information I received from the police about the reasons why the place was condemned was inaccurate.  He saw a small amount of clean kitty litter on the floor, and a small amount of newspapers on the bed, not the months and months of knee-high junk that the cop was ranting at me about.   

 

The inspector's version was that he was primarily concerned about the things in the walkway that would impede my exit in case of fire: boxes and bags of groceries in the main hallway (some of which were placed there by the person who called the cops, because she didn't want to carry them all the way to the kitchen), piles of laundry near the back door (because she had blocked my access to the closet and dresser with boxes that I couldn't move), and in the bedroom hallway, a box with a shelf which her husband had agreed to assemble, and never did.  I didn't feel well enough to assemble it, or to carry it to the basement, so I pushed it toward the guest bedroom to get it out of the dining room.  Boxes that she and other cleaners had stacked in the guest room blocked getting out the windows in case of fire; I had asked that the boxes be moved and they never were.  I've been cleaning a lot of things that I had specifically asked her to deal with last summer when she had promised to thoroughly clean the house in exchange for free room and board.  Sooooo, her claims that she's completely innocent, had nothing to do with the current condition of the house are wrong -- she contributed substantially to the reasons why the inspector had issues with the house.  

 

At any rate, the inspector noted a few new items on his last visit: the crockpot, which hadn't fit in the last load of dishes I did before I was evicted, took up a large area of the kitchen countertop.  Countertops, by law, must be cleared off so they are usable for food preparation. 

 

I keep a number of items on the counters, by doctor's orders, so that I don't have to reach above shoulder level to put them in and out of the cupboard.  He didn't care about doctor's orders: rules are rules, and those things have to go back into the cupboards where the law says they belong.   Similarly, I keep the canned goods on the kitchen floor so I don't have to reach up into the cupboards for them.  That was also unacceptable to the inspector. 

 

Putting everything away to appease him so that I can pass inspection to move back into the house has resulted in repeated dislocations of my bad shoulder and a lecture from the doctor that "you know better".  I do, but the inspector doesn't, and at this point,  I need to play by his rules.  

 

In trying to get the house clean, without help from the maid who said she wanted the job and then didn't show up, I have totally exhausted myself and had to spend half of this week in bed instead of making progress with the cleaning.   

 

A Real Friend would've been over here cleaning with me, and worrying about me making myself sick enough to land in the hospital with the overexertion; instead, I'm supposed to accept "oops, my bad" as enough to make things right between us and not expect any help or concern about the turmoil she created. 

 

Once again, it becomes apparent that I have been screwed by someone I extended generosity to.  Some thanks for 2 1/2 months of free room and board!  And this time from someone who prides herself on being a good Christian and claims to have love for me.  Funny, how that "love" ends as soon as she's asked to reciprocate the huge favor I did her last year.

Following instructions to put things where the inspector wants them, instead of where my own health requires them to be, I ended up dislocating a shoulder.  Which is precisely why I keep things within easy reach on the counters and floor instead of in the cupboard where I have to reach up to get them.  However, the inspector's lecture was "rules are rules" and those rules require the countertops and floor to be clear, not used for storage. 
Doctor's orders that I should not reach overhead for any reason, or stand on chairs/ladders for any reason, don't matter. Only the "rules" that say that normal, healthy people store things up in the cupboards and either reach up or stand on a chair to get them.

Announcing our new website, CFSFacts.org!

Design talent and server donated by Minuet.

Update

To answer those who are wondering, no, the cleaning is not going well.  I have been testifying under oath for years that I can manage 4-6 square feet a day (that's about half a square meter), and no one believes me.  Well, here's the proof: I have been cleaning every day for over a week, and I still have not managed to finish even one room.  Not because the room is that big a disaster, but because I really cannot manage more than 4-6 square feet of cleaning before I'm wiped out and in pain.  There have been some days this week that, because I haven't wanted to take a day off, I've gotten to the house from the motel, and accomplished even less because I started the day so exhausted.

A friend who used to be a social worker and therefore knew the right questions to ask called Social Services and got the same answers that I did: I'm not eligible for a government-paid housekeeper because there's always some criteria that I can't meet.  No one has yet declared me officially disabled seems to be the big stumbling block.

Another friend contacted several churches, but not a one of these fine Christian organizations was interested in doing an act of charity for someone who's not a member.  She was kinda surprised; I was not.  Again, the same response I got whenever I tried to get either some charity or even offered to hire some church member who needed a little extra cash.

Contrary to popular belief, I *have* occasionally pulled together the cash to get agency cleaners in, and they've generally made the situation worse, by putting a box of stuff that I need to sort where it blocks a door or drawer.  Not only can I not carry it from there over to the couch, but now I can't use the storage behind it.  Then there was the gal who spent four hours puttering in an already clean kitchen, and I don't know what she did, only that she did NOT clean the oven which I had paid extra for.  The last one spent three or four hours cleaning the fridge.  She assured me that she had taken everything out and only put back the good stuff, which I don't believe, since the next day I pulled out a package of dinner rolls that were totally green.  Again, since I am physically unable to stand over someone for four hours, I have to trust them that they are actually working hard, and not goofing off. 

And let's not even talk about the hidden costs of the independent cleaner who couldn't tell the difference between an unpaid bill and an old newspaper.  The cleaning was fairly inexpensive, it was the hundreds of dollars of late fees on bills that apparently went in the trash that was the problem.

I've finally gotten my financial situation on an even keel to where I *can* afford a cleaner once a month, maybe twice, but most of the cleaners I've contacted, when they hear that *I* intend to do the light dusting, I'm looking to hire someone to do the heavy work that I can't manage, they're not interested.  The only one who was willing to do what I needed, was not available on the day before trash day; her only available day was the day *after* trash day, when any food she'd clean out of the fridge would have a whole week to attract vermin.  That wasn't acceptable to me.

Evicted for Being Sick

Article posted online by Lara about my current problems:

 

'CFS sufferer evicted from her own home for being too ill to do housework'.

Karen C, a sufferer of the debilitating neurological illness: Chronic Fatigue Syndrome(CFS) has been forced to leave her home to stay in a motel at her own expense while the local authorities arrange for her house to be cleaned.

CFS (also known as Myalgic Encephalomyelitis or ME) causes a range of symptoms including physical and mental exhaustion, flu like symptoms, post-exertional muscle fatigue, migraines, insomnia and gastro-intestinal disturbances. Although not fully understood it is thought it could be caused by viral or chemical exposure.   In Karen's case, it began with a severe virus and 105 degree fever in 1987; it is thought to have become chronic because because, as a diligent and responsible employee, she forced herself back to work before she was fully recovered in order to deal with work she knew was piling up on her desk..  In early 2000, she was again dragging herself to work sick, and was eventually fired due to inability to do the work to her employer's satisfaction.

Karen lives on her own and is so severely affected by her illness that she is physically unable to carry out more than a few minutes household activities each day. What energy she does have she uses for basic survival e.g. feeding herself and personal care. Even so, the state will not grant her disability status or payments and as such she cannot afford to employ a cleaner or other home help.

Police were called to Karen's house on Friday morning after a friend panicked when she could not contact her. In fact Karen was attending a doctor's appointment, but when police could not get an answer at the property they called a fireman who broke a window to gain access.

That morning, before Karen had left to go to the doctor her cat had chosen an inopportune time to be sick in the house. She was running late and did not have time to clean up before leaving. Her cats have also found the new trick of tipping their litter box while she is out.  Although most of the kitty litter was clearly new and unused, there were some feces which spilled on the floor, leading the casual viewer to the conclusion that she regularly allows feces to remain on the floor for long periods of time, despite the vacuum cleaner's position nearby indicating that it had recently been used to clean just that spot.  On seeing the mess, the Police called in the Board of Health, who subsequently posted the property as unfit for human habitation.

When Karen was finally allowed into the house to gather up a few belongings and her medications, she noticed that the police and firemen trooping through the house had knocked newly-washed laundry off a chair and tromped it through the cat's vomit, requiring her to waste her precious limited energies to rewash the laundry.  They had also knocked a book out of a box, and gotten that into the mess as well, requiring the book to be thrown away.

It was also commented on that there were flies around her outdoor trash bin.  Despite the fact that Karen had hygenically disposed of food scraps in the outdoor bin rather than luring the flies indoors to the kitchen bin, she was criticized for having bugs on the trash, leaving her utterly puzzled as to how they would recommend she dispose of spoiled food in an old-fashioned kitchen without an in-sink disposal.

Rather than being provided with alternative housing and assistance in obtaining much needed housekeeping services she has been begging for over the past five years, Karen has yet again been forced to fend for herself. She is now faced with the Hobson's Choice of whether to land in hospital by pushing beyond her physical limits to try to clean as much as possible herself, or to allow the city to send a bill she cannot pay, for a cleaning crew which might not differentiate between her critical legal papers and junk mail. 

The friend whose unwarranted phone call to police (just moments after her first failed attempt to reach Karen) set the unfortunate chain of events into motion inexplicably denies any wrongdoing and refuses to help at all with either the cleaning or the massive expenses Karen is incurring, saying that Karen alone -- and not all the people who have been asked for help and refused -- is responsible for both the condition the house is in and returning it to good order.Karen has for now had to check into a motel while the house is cleaned and she won't be allowed to return until she has the property re-inspected. This will not be before Tuesday at the earliest due to the Labor Day Weekend, and she expects the cost of her stay at the motel to run to some $300.

That a disabled person could be placed in this situation may seem unbelievable however, as a CFS sufferer, Karen is far from unique. CFS is a condition, which often affects sufferers so severely that life becomes a battle for survival. As the disease, does not show up on routine blood tests and is difficult to diagnose it is often dismissed by doctors as simply 'all in the patient's head'. Without supporting medical evidence it then becomes very difficult for sufferers to obtain disability or private insurance payments, leaving them fully dependent on friends and family for financial and social support.

In fact, earlier this year, Karen had a result the doctor's office called "off the charts" on a C Reactive Protein test -- CRP indicates infection, inflammation and heart disease -- yet a few months later, her application for disability benefits was again denied despite objective proof that something is very very wrong physically. As it stands, until government and disability departments get their houses in order as far as CFS goes, Karen can be sure that hers will remain in a mess.

Starting noon Eastern Time, see my designs at TyWolfeDesigns.com!
Looking for a little extra income while I'm waiting for my disability to be approved (which will probably be another 2 years of appeals).

Ch-Ch-Ch-Changes

A friend invited me to join TyWolfeDesigners.com. Most of the designers do beadwork, so I’m there to provide some variety. I’ve spent the last couple of weeks knitting and crocheting models, so they can be photographed. Thank goodness, I finished the last of the first batch last night ... I hadn’t gotten the instructions typed in before my 3-month-old computer crashed. We can’t even get the computer to turn on to run Diagnostics to find out what’s wrong. Fortunately, it’s still under warranty, so repairs will be free, but who knows how long that will take?

So, I’m running the old computer – the one that was so unreliable that I had to buy the new one to replace it. It has PatternMaker on it, so I started playing around with an image I saw in a commercial last night. The on-screen color picture looks good enough that I’ve already e-mailed it to the web-mistress to add to the website, but I would like to stitch it up just to see what it looks like.... It’s bright colors, so, of course, I’m thinking rayons on black fabric. :)

Lemme tellya, when you’re not much of an artist to begin with, it’s reeeeeal fun to draw with a mouse, with your hands shaking. Yes, it’s one of my more symptomatic days.

http://www.TyWolfeDesigners.com launches on July 4, with a flurry of red, white and blue designs.

More evidence that quacks are just plain wrong

Yet another article saying that exercise can be detrimental to CFS patients, despite what the quacks and their lawyer believe.  www.masmith.inspired.net.au/docs/stein2.htm#Orthostatic  

 

"Most of us have grown up with these ideas [that exercise is good] and it is difficult to believe that for people with CFS/FM these ideas are untrue."  

 

One of the quacks testified that even on days when I had to rest just getting to the kitchen and back, I should go out and exercise.  Does he think I have more energy to exercise outdoors than indoors?!  If I can't make it the 20 feet from the bed to the kitchen, then how does he expect me to walk a mile? 

 

They just don't get it that some days, it's an act of utmost willpower just to get out of bed to feed the cats; there isn't enough willpower in the universe to walk a mile on days when it takes 15 minutes of trying just to sit up in bed, and when I finally accomplish that, put my feet over the edge to stand up and fall back onto the bed.   My diaries indicate a lot of days when I walked a couple blocks to run an errand (mailbox or corner store) and returned exhausted.  Sometimes, it cost me not only the rest of the day in bed, but several days in bed. 

 

I trust my own experience, and what experts Dr. Cheney and Dr. Bell say about exercise, not what someone who's never even heard of Cheney thinks is the right treatment because it's the right treatment for other problems.  

 

These quacks have got to learn to listen to the patient, to hear out her concerns, and to have the humility to admit that they do not know much about this cryptic disease and perhaps the patient would do better to go read up on it herself, rather than telling the patient to do something detrimental and then acting like she'd have recovered if she had done what they told her, despite it being contrary to the experts' advice and research.  On several pieces of advice and prescriptions I got from these quacks, I was asked by other medical professionals "were they trying to kill you, or just get big bucks for an ER visit?"  

 

The new Cheney interview,  http://www.virtualhometown.com/dfwcfids/medical/cheney/heart04.htm , suggests cardiac involvement.  I complained of chronic dizziness and fainting -- cardiac symptoms -- and mydiaries list other symptoms, all of which were brushed aside or attributed to "anxiety" rather than a physical cause.  I'm going to get the last laugh if getting the test mentioned in the article proves that I have serious cardiac problems, and heart damage that possibly could have been avoided if someone had tested for it sooner.  Then we'll see how much a jury awards me for losing 30 years of my work life because these quacks wanted to treat me for depression (which the psychiatrists say I don't have), thyroid (which the blood test says I don't have), and laziness (which my former co-workers will say I don't have), while ignoring the documented "severe sleep disturbance".

Cheney brings Changes

Although I've been accepting of the fact that I have a disabling condition for many years, the new information that 100% of disabled CFS patients have cardiac insufficiency, http://www.virtualhometown.com/dfwcfids/medical/cheney/heart04.htm, has changed my view on some things.

For example, for years I've bought into the notion that, disabled or not, I "have to" do my own housecleaning, as difficult as that might be, because it would prove to people that I'm not Just Lazy, or "would rather stitch than clean". Well, now that I know that it might kill me to do heavy cleaning, I'm more willing to accept that a cleaning lady is a life-or-death issue, not a "luxury". I'm going to have someone come in a couple times a month, whether the place "needs it" or not. It's worth $100 a month to not drop dead while cleaning.  It wasn't worth the expense to have more stitching time, nor to avoid spending a couple days in bed after a cleaning binge, but now we're talking about preserving life.  (Of course, the question is, whether the government, which insists we must preserve life, will consider it worthwhile to pay someone to clean to preserve my life, or whether they're still going to think that I could do it if I tried.)

The cardiac insufficiency research explains a lot of the problems I've been having: the fainting, the dizziness, the inability to concentrate as well sitting as I do lying down (less blood flow to the brain), the shortness of breath, the difficulty getting up the front stairs, and, oh, yeah, the fatigue. The fatigue could be explained by the "severe sleep disturbance", but the feeling that I wasn't getting enough oxygen, which often came upon me when I was out walking -- I couldn't figure out how that related to not sleeping well. Now I know.  It doesn't, except in the sense that the sleep problem and the heart problem are both symptoms of the same ailment.

On the subject of sleep disturbance, they've been treating me with sleeping pills. They put me to sleep -- well, most nights -- but I wake up groggy and it's pointless to try to work before noon. 

A couple months ago, I went to a lecture by www.DrRodger.com and found out about 5HTP. Taken with vitamins and 700 mg of magnesium, it builds serotonin levels. Dr. Rodger's theory was that the SSRI anti-depressants the quacks were giving me, instead of the sleeping pills I kept requesting, weren't working because I didn't have enough serotonin to be reuptook. From the description of my sleep patterns, Dr. Rodger says they should have known I had a serotonin deficiency.  I've started taking 200-250 mg of 5HTP at bedtime, and most nights have been sleeping 6-7 hours, naturally, a vast improvement over some of the sleeping pills which

              (1) didn't put me to sleep at all,

              (2) didn't put me to sleep half the time,

              (3) got me 3-5 hours of sleep, and left me confused part or all of the next day OR

              (4) gave me a full 8 hours of sleep, at the cost of having to stay horizontal till noon or risk cracking my skull when I blacked out while sitting or standing.

With the 5HTP, I still need a few hours to wake up fully, but I'm nowhere near as brain-dead the next morning.  I can actually do some work before noon -- slowly, but competently.  :)  I find it makes more sense to stitch in the morning and leave the paid work till afternoon when I'm fully awake ... not going to lose any clients if I make a mistake stitching.  But that's still a vast improvement over 2003, when I couldn't do either.

God bless Dr. Rodger and Dr. Cheney.  One's given me my life back, and the other has given me the information to live a normal lifespan.

 

Angel Anna

While the attention of the nation is focused on the prolonged death of Terri Schiavo, I'd like to herald the passing of one of our nameless saints.

Last week, three childhood friends of mine became orphans when their mother, Anna, finally joined her husband. 

What can I say about "Ma T"?  She was a mother-figure to most of the teens in our church.  As a four-eyed redheaded outcast, she made me feel loved, accepted, and normal ... Ma and two of her kids were redheads, too.  I felt as comfortable with her and her family as I did in my own home -- sometimes more so.  Always there with a helping hand for whatever needed doing at church, including hand washing and drying hundreds of communion glasses, and always ready to listen to whatever kid needed to pour their heart out.  Most of us considered Chris, Joanne and Andrew the luckiest kids around to have her for their mother for real, as opposed to the many of us for whom she was a surrogate.

She raised her kids right -- I remember one of Chris' teachers commending Ma T because during a school riot, Chris stayed behind to protect his female teacher and insisted that a gentleman could do nothing less.  Andrew, despite being a couple years younger than my crowd, occasionally provided the mature "conscience" we needed when we were cutting up in the lobby just before church started.  Though I hung out more with the boys when we were all living home, it was Joanne who kept in touch after I moved away.

I've been in California 25 years, but my memories of Ma T are as fresh as if she'd hugged me only yesterday.  A great lady, never to be forgotten.

 

OK, someone explain to me why Terri Schiavo can have $80,000/year of government money to keep her in a hospice, but a disabled person who is actually cognizant of being cold and hungry can't have $10,000/year of government money to pay the rent and buy food?

More on Schiavo:
http://journals.aol.com/sactoparalegal/LawPolitics/

Disability and Dignity

With respect to Terri Schiavo, Tom Harkin said that disabled people deserve to be treated with dignity and respect.

Oh, really? Harkin needs to talk to the federal employees who run the disability benefit system. Although criminal law requires "innocent until proven guilty", the Disability system apparently considers you guilty of fraud until proven innocent. I testified to the God’s honest truth – I wouldn’t do anything else under penalty of perjury – but because one doctor chose to illegally write false information in my medical records, unsupported (and even contradicted) by any other medical records, the judge concluded that my testimony (which agreed with the other doctors’ reports) was a lie.

Why was I, as a disabled person, not accorded the minimal respect of being believed? With as little as Disability pays – the average payment is less than the average rent around here – there are very few people who would "do it for the money". Unless you have a trust fund, or a working spouse (and I have neither), there’s no way you could survive on what Disability pays, so why automatically assume that everyone who applies for Disability is faking? You’d have to be pretty desperate to consider a few hundred bucks a month to be "hitting the lottery". (We’ll discuss that indignity later.)

This time around, I went in with reports from several doctors who were paid to say that I am fully-capable of working, and even they noted disabling limitations. I went in with an off-the-charts blood test. And even so, felt like I was a criminal trying to defraud the system, rather than being treated with respect and having my testimony believed. I’m in the uncommon position of having been a notary – the government thoroughly investigated me a few years ago and determined me to be honest – but the Disability system ignores my reputation and the opinion of the state government that my morality is above suspicion, and treats me like a common criminal for daring to think I deserve some of the money that I’ve paid into the system all these years.

Yes, disabled people deserve dignity and respect. Let’s start with the government treating Disability applicants in a dignified and respectful manner, abiding by the "innocent until proven guilty" credo required in every other court in the land.

Clinical Trial Update

The clinical trial coordinator reports that not only has my C Reactive Protein not gone down, it's gone UP since last week. So, I'm out of the clinical trial. The good news is, I now have off-the-charts blood tests to prove to Disability that there really is something very wrong, and it's physical, not psychological.

Now I need to talk to my doctor to find out if there's anything we can do about it. From a look at WebMD, it sounds like you can do something (antibiotics) if it's an infection, but if it's inflammation from arthritis/bursitis/tendinitis (all of which I have), then they can't do diddly-squat.

Yet another unethical action in my lawsuit. After quoting me a price of nearly $3 a page for a copy of my deposition, they told a friend that their normal charge for copies is $1 a page. This after telling me that they had been instructed not to send me a copy of the transcript. The question arises, was this a misunderstanding, or did the other lawyer tell them to make it difficult for me to have the copy I'm legally entitled to?
Given the many unethical things the lawyer has done already, I wouldn't put it past her to do that.

Clinical Trial in Limbo

Got to go back to the doctor this afternoon. I may be too sick to participate in the clinical trial. They did a C Reactive Protein test, which no one's ever done before, and it's off the charts. If we can't get a more normal result today, I don't get to participate in the trial.

OTOH, I have, for free, a test result that can be submitted to Social Security to support my claim that there *is* objective evidence that I'm physically ill, just the quack didn't want to do any test that would force him to accept that I have a physical illness, not depression over being a middle-aged, overweight divorcee.

Of course, if I were depressed over the divorce (not likely, since I was singing in the office after filing it), it would have been 2 years earlier, when I filed for divorce. And if I were depressed over losing my job, that wouldn't explain my symptoms before being fired.

So, even if I don't get to participate in the trial, I did get some benefit from it, and my lawyer can argue that this is yet one more place where a test that should have been done, wasn't, because the doctor didn't want to risk proving that I'm physically ill. He wanted to deny my disability claim, not help me get it.  He simply didn't note the symptoms that would prove it's not depression, even the ones necessary to make the CFS diagnosis were eliminated, which makes it real clear that he wasn't trying to help me support a disability claim for CFS. He wanted to believe I was depressed soooo badly that he was willing to break the law by falsifying medical records.

*Sigh*

To get into the clinical trial, I had to go through the whole fibromyalgia diagnosis procedure again: they apply 10 pounds of pressure (pressing till your thumbnail turns white) on 18 different points.  I had severe pain in all of them.  Then they have a little device called a dolorimeter that measures exactly how much pressure it takes to invoke pain.  On some points, I couldn't take more than 1.5 pounds (remember, it takes 10 pounds to make the diagnosis, so I'm way more sensitive than required).

Everyone in the study will be on placebo at some point.  This is apparently my week.  Either that, or this stuff is a complete flop as a sleeping pill.  I'm still wide awake in the middle of the night.  We'll find out Monday if the second package of pills works better.

My Day

I've enrolled in another clinical trial, this one for a medication that works on "fibro as a whole", i.e., it's not a sleeping pill, not a pain pill, but will help with both symptoms. 

The problem is, I have to go cold turkey on my other meds for a week before I can start theirs. Twice today, I blacked out from the pain. When I say "I feel like garbage", I'm not kidding, because that's where I came to ... with my shoulder in the bathroom wastebasket.

So much for anyone who claims that I'm imagining things.  This is what the medical profession calls an "objective symptom", i.e., incontrovertible proof that there's something wrong.  Although there are some quacks who won't believe it unless they see it for themselves.

On a roll

The other lawyer, for six months, had been ignoring my requests for convenient deposition dates for the doctors. Since motions cost $36 to file, I'd really rather manipulate her into filing them so I don't have to spend the money. So, once again, she has spent $36 to get her *own* hand slapped. :)

The sleeping pills I've been on the last two weeks don't put me to sleep until 2 or 3 AM, but in the morning I'm finding it even harder to get started than when I was getting only 2 hours of sleep naturally.

Next week, I'm going to enroll in a clinical trial for Fibromyalgia/Poor Sleep: A Vicious Cycle. It's not clear whether the pills are intended as sleeping pills or pain pills, but we'll see if they help.

SCORE ONE FOR THE GOOD GUYS

After letting the lying lawyer know that I am aware that it's specifically HIPAA (Federal law) that gives me the right to amend my medical records, she's suddenly backed down on her lie that it's "illegal" to correct the false statements in there.  She's still not willing to have her clients correct-and-initial, to indicate that the mistakes were their doing, but she will let me put in a Statement of Disagreement, which is my legal right under HIPAA. 

Since it will be evidence in the disability case, as well, my disability lawyer is going to go over the statement before I put it in.  That should quickly quash any objections the lying lawyer may try to make about not wanting me to put in certain phrases; if it's "lawyer-approved", she's not going to be able to claim I don't know what I'm allowed to (or not allowed to) put in the statement.

We've decided to do it in the same way as a Motion for Summary Judgment: two columns, one with a statement of what I want changed, and one with the facts/documents supporting why the original isn't accurate.  Then there can be no argument that my version is no better than the original, because there will be exact quotes from doctors who have said that I do have a physical ailment and do not have a psychological ailment, with reference to where those quotes can be found.

HIPAA says they have to write on each page that I have a dispute with "see attached Statement of Disagreement".  That means that every single page of the records from 2000-2003 is going to have that written on it, which makes it real clear that this is not just a one-time mistake, but a clear and definite pattern of writing false things in medical records at every single one of my appointments. 

I'm hoping that by the time I'm done with Health & Human Services, the Inspector General, and the Bar Ethics Committee, the only one of us left with a job will be me.  Maybe when they're the ones with no job and no prospects in their own careers, they'll be a little more understanding of why I sat on their exam tables sorta subdued -- that's not proof of depression, it's proof that when you're wondering where your next meal is coming from, you don't do cartwheels down the hall.

That still doesn't fix the problem that someone -- either the doctors or the insurance company -- owes me for the three years of disability benefits I lost, but it makes it a little more likely that the insurancecompany will re-evaluate my claim on the real facts and not on the false notion that I'm just a hypochondriac too lazy to work.

Well, here it is 2 AM and I'm awake again despite taking the sleeping pills. This gets really annoying; they work for a few days and then I'm back to being awake most of the night. Not sure how they expect me to get back to full-time work when I can't sleep at night. (This is what cost me my job in the first place.)

Finally Proceeding Toward Success

I came across a brochure from the place that does my mammograms, which says I have the legal right to have my medical records corrected.  That's a long way from the statement from the quacks' lawyer that it's illegal to change medical records once they've been written.

The brochure said to call the Compliance Coordinator to find out how to do it.  I explained to her right off that I had no complaints at all about her medical group, I needed the information because the group I do have a problem with refuses to even consider doing it.

She explained that my first step is to write a letter requesting changes to the records.  I said I did that, and they refused to even discuss it.  Told me to take it up with their insurance company.  The insurance company told me if I wanted anything done, I needed to sue them.  When I sued, the lawyer told me it was illegal to make any changes.

According to the Compliance Coordinator, what is really illegal is to refuse to even allow me to place a Statement of Disagreement in the file, which they've refused to do because they don't believe they did anything wrong.

The next step is to complain to the Federal Government www.HHS.gov/OCR/HIPAA

So, we'll see whether having a Federal investigator demanding to see the files scares them into agreeing that changing the lies is preferable to a thorough investigation of their whole procedure and possibly losing their Medicare accreditation for violations.

Once again, I'm awake in the middle of the night -- can't sleep because of the pain when I lie down.

I have some new sleeping pills on order, but the pharmacy didn't have them in stock, so I have to wait to get them.

Litigation Update

For those who are following the saga of my suing the doctors who filled my medical records with false statements: I have just had the chance to respond to one of their lawyer’s motions with a long list of statements the lawyer made under penalty of perjury where the facts are quite different. When I’m done, I may end up with both the doctors and the lawyer losing their license to practice. They all do a real good job of imagining what they would like the facts to be and then swearing that that’s what the facts are, never mind that there’s proof that they are wrong. Because, of course, they’re licensed professionals, and I’m not.

They forgot just one thing – at the time they started lying about me, I had a notary license, and to get one of those, they investigate your background. You’re not going to get one if any of the people they talk to says you’re dishonest.  So, I have the government standing behind my claim that I'm telling the truth.