OT: It just figures!

Nice hearing from you.

Truly some of the meanest, most selfish people I've met consider themselves to be "Good Christians." I feel pretty sure that Jesus would be shocked and saddened to see what people have done in his name, now and throughout history.

Love and tolerance, I'm gonna work on that, because I do get intolerant. It's one of my biggest faults. I'm not the only one in this group who has problems with it (just stating the obvious) so I can only hope others think about it too.

Caryn

So am I. I've been diagnosed with FMS MPS and CFS since I've been 13. It was a result of contracting hepatitis, and a very hard fall I took in dance class, which ended my dancing career.

Yes.

I never said I'm a wonderful Buddhist. Don't put words in my mouth.

I am not looking for your sorrow. Never did beg for that. You have the wrong person.

You're right, I don't remember.

You have no idea, so best to just apply same to yourself.

I think that's true of most religions, Caryn. There are always fanatics, and also those who co-opt the name but not the behavior originally intended.

I personally was on staff at several churches, and as the old saying goes, if you want to lose your religion, work at a church. Seeing the clay feet of many ministers and practitioners can sour a person.

There are good people in this world. There are bad people in this world. We just have to choose where to spend our time and energy -- from both ends. We have to choose what we want our own personalities and spirits to be, and we have to choose the people with whom we want to spend our own time.

I have learned so much in this newsgroup. I treasure that knowledge and experience.

Yawn, I think I'll go take a nap.

-- Jere

I expect them. No worries.

Yeah, best not to go into denial. Naps are much more realistic.

I thought I made it clear that I didn't mean it was all in the head, as if we just make it up and we're nuts. I'd have to include myself in that. However, the research shows that, most people who didn't have a virus (Epstein Barr aka mononeucleosis) or hepatitis b,c,d,e,f or g, or Lupus HIV, or other autoimmune virus- have it as a result of a mind/body connection. Thus could be brought on my stress, major depression (even at low levels over a lifetime which is vastly common) or some trauma to the body or PTSD.

I don't pull this out of a hat. I'm very well versed and have physicians in my family who treat this set of syndromes. Because they cannot pin it down to any specific nature, it is not yet classified as a disease, rather a syndrome. It doesn't mean it isn't a disease, but in my case my hep c virus is the cause of my FMS MPS RLM and CFS.

I am not complaining, just reporting. I rarely complain about my illness. My Lama recently told me when I go into treatment again, I should suffer for all sentient beings and make it a practice. That completely changed the way I view this upcoming treatment. That's not thinking positively, or denying my illness. It's changing the way I think about it. Change my view and turn it into something else. Big difference.

Thanks for the definitions. I had them, but I wasn't going to post them since anyone could google these definitions in ten seconds.

V

And neither is CFS (or, as I was originally diagnosed before the government stuck us with that silly, trivializing name, Post Viral Syndrome). You don't psychosomatic a 105 fever for a week, and you don't psychosomatic the off-the-charts blood test results I've had.

Both can be made worse from stress. Sources of stress include having people tell you that you're not really sick, people telling you to do more than you physically are able to prove to them that you're not just lazy, and having no one to vent to when The System puts you in that Catch 22 of you can't have a cleaner till you get Disability, you can't get Disability till you have a cleaner, and we don't care that lack of a reliable cleaner has caused you to be threatened with the government confiscating your house, you have to clean it up by yourself without the help of a cleaner, because you're not officially disabled till the judge says you are (which he says he won't until the government sends you a cleaner every week), (but they won't because the judge hasn't said you're disabled).

But getting worse when under stress does not mean that it's in any way psychosomatic. Lots of ailments get worse with stress.

If reading my vents annoys you, learn to use your killfile.

Same here!

Start your own vent thread for a change, and quit highjacking other people's.

You are so predictable and boring. But if you start a vent thread of your own you'll be easier to avoid!

Caryn

Amen to that. There's only so much that watching funny movies can do. It might bring level 10 pain down to a 9, but it's not going to make it a 1.

I've tried denial. Telling myself that I can work through the pain and fatigue ends up with a dissatisfied boss because the pain and fatigue cause mistakes, and I don't accomplish very much. Being in denial, instead of applying for medical leave, cost me a job I loved.

Telling myself to keep going at a physical activity is also counter-productive; if I push myself to do an extra 10 minutes on Monday, I won't be able to do anything at all on Tuesday. Better to stop before I'm done with the project so that I can get up on Tuesday without crumpling in a heap next to the bed.

is the latest research proving that increased activity makes CFS patients worse. Dr. Cheney has been saying for years that fibromyalgia patients can exercise (and should, because it makes them feel better), but that CFS patients should not exercise because it makes them worse. Here's the proof, from someone who initially reached the opposite conclusion and then found that examining ALL the data required a far different conclusion, i.e., increased activity causes increased symptoms, and after a few days, increased activity cannot be maintained.I'm not going to feel guilty about taking my medical advice from the national expert on my primary diagnosis instead of an uninformed busybody on a newsgroup who thinks that all I need to do is haul myself upright and force myself to clean. I'm sure anyone who compared my messy house and neglected postage-stamp yard to Victoria's huge, well-tended garden that she brags she does all by herself, would have no difficulty concluding who really has physical disabilities and who would be physically able to work if she wanted to.

You have repeatedly dredged up the comment about Cleveland, while I said nothing. Until today that is. I can assure you, my great day had absolutely squat to do with you or about you. And you know something? I could not give a shit what your opinion about me is, you are not on my radar.

Now get back to whining about your health etc. I won't respond, have a good whine and the last word.

Gee it's so nice to know that Vic knows soooooooo much more than a Doctor. Nice to know that cataracts were cause by a psychosomatic illness or syndrome. Guess I really didn't need that surgery to see 100% clearly. Guess I should have walked around seeing the world thru a London fog.

Dorsey in VA

I agree with Caryn that you do have some very unkind ways regarding her as well as rgarding others , me included. You have called me [just like you did to her]some very unkind names. I agree with her that you seem to enjoy stirring things up , and than take a side sit. mirjam

We hear the same here , our economy being not the best, still we send out help top many countries that were affected by a disaster.Yesterday i heard an old and famous Hospital in Jerusalem was sold, and the pensions of veteran workers has not been included in the selling conditions ,,,, The riots in Paris [ that now spread to other countries around it , and will spread more are due the fact that so many people mainly immigrants live in poor conditions. I have been saying for several years that 'the Dark ages are back , poor people every where unsafe roads and illnesses ` mirjam

Caryn good morning ! I agree with you . Many illnessses , have this added problem of being more harsh when the patient is nervous or angry of something, there is nothing new or strange about this , it is a Chemical reaction of the body ..... Having said that , may we all keep in mind , that none of us here me included are not doctors , and not many have ,met each other face to face , thus we can`t know how sick people are. I wish all those who have any Health problem or illness an easy healing time , or at least many easy times during the illness. Having a possibility to do other nicer things in life as well. mirjam

Jere could you explain to me , why the word carping is used for repeated complaining ? i thought the Carp didn`t speak much :>:>:> under water ? mirjam

I didn't say that. I quoted it from an expert, a doctor who treats both AIDS and CFS patients.

Let's give credit where credit is due for that statement: "At a 12 May 1995 Congressional briefing, Mark Loveless, MD, an infectious disease specialist and head of the AIDS and CFS Clinic at Oregon Health Sciences University, testified that a CFS patient feels every day effectively the same as an AIDS patient feels two months before death." Quoted from "Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses", by Katrina Berne, Ph.D., at page 24.

If you want to take issue with that statement, you call Dr. Loveless and tell him that all his years of treating both AIDS and CFS count for nothing, only your personal experience is true, and see what he says about your credentials as an expert on comparing CFS and AIDS.

What I can say is that I have had days when I am so debilitated that it hurts to breathe, it hurts to open my eyes, and it's a real godsend that it's four feet from the bed to the toilet. For a couple years, my friend could not believe that I wasn't the one with the terminal diagnosis, since until the last six months or so, I was clearly more debilitated than his partner who had AIDS.

But, if all you got from my blog was that I was asking people to help me get Disability, you didn't read it very well. I'm asking people to help me persuade the government that when one governmental agency documents that someone needs assistance with the cleaning, another governmental agency should have the authority to provide that assistance. People with CFS often spend 5-10 years trying to persuade a judge that their "invisible illness" is a very real disability; they shouldn't have to spend that ten years doing without food on days they can't get out of bed, and on other days having to choose whether it's more important to use their limited energy to prepare meals or to clean so that the Board of Health won't condemn their house for the sole reason that they have neither the energy to do it themselves nor the money to hire it done.

And obviously, you didn't get beyond my post to the numerous comments by people who know me in real life, whose observations about what I'm really like are far more accurate than the lies you keep spreading here. One of those people has known me in the F2F world for about 35 years and still sees me every couple years; I'd think she has a much better read on who I really am than you do.

Consider this: the reason these people speak openly about my generosity that you know nothing of is because you have earned nothing from me except my scorn for the way you treat me. I reward people who offer me their friendship, not people who make up lies about me.

For the record, I have an attorney. She has assured me that I meet the legal criteria for disability benefits, as that criteria is laid out by the Ninth Circuit Court of Appeals. The problem is, the judges who make the initial decision don't believe CFS exists, and therefore, you can't be disabled by something which is entirely a figment of your imagination.

Unfortunately, as Dorsey so eloquently pointed out, if the judge thinks you don't look sick, he will cherry pick the statements that support his viewpoint and ignore anything that contradicts him. For example, one doctor listed half a dozen problems, some of which he described as severe enough to keep me from working, but "with respect to the arthritis in both hands, she remains fairly functional". The first half of the statement was excised, leaving the impression that the doctor had said ALL of me was fairly functional. Terrific -- if you can find me a secretarial job that I can do laying in bed, I'll take it. VocRehab says there is no such job.

The Court of Appeal ruled that he mis-stated the evidence and sent the case back for another look.

The most recent judge ignored the positive test results from 2005, and the testimony of his own expert that there is no job that I could do within the limits set by the doctors, and went back to the years-old letter saying that "all tests were normal" -- all tests were normal because the right tests weren't done. (He tested for diabetes, which I don't have, and thyroid, which I don't have, and a lot of other things I don't have, so of COURSE they were all normal.) What that doctor didn't do were the tests CFIDS.org recommends, which might have been abnormal.

Making a ruling that someone doesn't qualify for Disability by ignoring the mounds of evidence that say she does, does not mean that this is the right ruling. Once again, the Court of Appeal agreed with my lawyer that the decision was wrong, and sent it back for another look. Unfortunately, sent it back to the judge who does not believe that there is such a thing as CFS because there was no test for it 20 years ago when he first became a judge, which means that once again, we first have to convince the judge that there is now ample evidence that CFS is real and has physical causes, before we can even hope that he will conclude that I'm disabled.

Like the first judge, he mis-stated the evidence. Among other things, he invented a husband who waits on me hand and foot. That's the lengths to which a judge will go to deny a claim if you don't look sick, even if all the evidence says you have unfakeable blood abnormalities, unfakeable limits on range of motion (i.e., the doctor felt my shoulder catch), and multiple doctors who were paid to say you can work and instead say you can't.

The doctors say I qualify, but if the judge thinks CFS is bogus, he's not going to accept that he's wrong. Any more than you're willing to accept that you're wrong.