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.