Do you feel like getting better is a win AGAINST the health care system?

[NilaJones]

I've been doing a lot better, this past year, despite being in a crash right now. And getting better feels like a giant 'F you' to the health care system . I feel like I did it DESPITE them.

Not everyone; some practitioners are awesome, in that they do not actively stand in my way. That is the standard.

But mostly, for my whole adult life, health care practitioners have been in the role of actively trying to prevent me from getting the care I needed -- insisting on wrong diagnoses that were contradicted by testing, refusing to authorise ordinary treatments, mobility aids, physical therapy, etc.

And F you, I did it anyway.

Anybody else feel this way?

 

[SOC]

Anybody else feel this way?

Almost every time I have to work with my local healthcare system.

Working with top ME/CFS specialists has helped me regain some respect for what the healthcare system can do for me when the people I'm working with are knowledgeable. And there's the big problem, imo. With ME/CFS we fall outside most medical systems' range of knowledge and they are incapable of coping with their inability to understand our illness. Instead of trying to get informed, or find medical practitioners who can help us, they treat us like dirt.

When I have been able, through my ME/CFS specialist, to uncover problems my local healthcare system actually knows how to handle, they've been relatively effective. They're just worse than useless when I don't fit into one of their limited number of boxes... which is most the time.

So yeah, I have quite a few moments of thinking, "Yeah, you said there was nothing wrong, you said there was nothing to be done. Well look at me now that I've gotten decent testing and treatment, jerk. This is what can be done if only you'd bother to do it."

 

[*GG*]

Yeah, I've been lucky to find a few good Drs also. Not sure why I got better, but I crashed in 2009, and instead of just changing one thing at a time, I changed many things, so cannot pinpoint what has helped. I continue to most of what I did when getting out of my crashed state.

Still on LDN, many supplements

Back on caffeine and some alcohol now and then, not doing any yoga or meditation any more, but would incorporate that back into my lifestyle when I have a stable home. I only have 2 more months to have my disability case to pan out, hope my lawyer does not let me down!

Not sure what kind of benefits and income that will bring, if not a half decent life style, think I might put an end to this whole tragic story. I try to take day by day.

GG

PS What country are you in? If you don't mind sharing?

 

[jimells]

When I have been able, through my ME/CFS specialist, to uncover problems my local healthcare system actually knows how to handle, they've been relatively effective. They're just worse than useless when I don't fit into one of their limited number of boxes... which is most the time.

In one of my past lives I worked as a diesel equipment technician. I've worked on pretty near everything from lawnmowers to locomotives (no airplanes). In the trade there are folks who understand how stuff works and can fix it the first time. Then there are other mechanics that only know how to turn wrenches and guess at what to fix. We called them "parts replacers". They need guidance on what to replace, if you want them to fix it only once.

It seems to me that in medicine most physicians are parts replacers.

 

[Snow Leopard]

In one of my past lives I worked as a diesel equipment technician. I've worked on pretty near everything from lawnmowers to locomotives (no airplanes). In the trade there are folks who understand how stuff works and can fix it the first time. Then there are other mechanics that only know how to turn wrenches and guess at what to fix. We called them "parts replacers". They need guidance on what to replace, if you want them to fix it only once..

It seems to me that in medicine most physicians are parts replacers

Same goes for most professions in my experience...

 

[Chriswolf]

Absolutely, especially considering I'm more or less convinced I'm going to have to leave the country in order to get any reasonable level of help. CFS advocacy and treatment in Canada is an absolute joke.

All the doctors here are doubling down on anti depressants and they have a nasty habit here of choosing to support a doctor that makes a bad call over doing what's right for the patient.

That and by my hypothesis, anywhere that has socialized healthcare inevitably resorts to applying the least costly/liability inducing treatments. Things such as antivirals, and experimental treatments incur the fear of costing the government more than simply telling the patient they can take their happy pills and shut up, or be considered uncooperative.

If I ever do get better, it will most certainly be in spite of the efforts of the doctors that I have available to me.

 

[Hell...Hath...No...Fury..]

Absolutely, especially considering I'm more or less convinced I'm going to have to leave the country in order to get any reasonable level of help

Which country would you choose? They're nearly all crap for people like us i thought about doing this too, but i got a headache trying to think of somewhere.

 

[Chriswolf]

Which country would you choose? They're nearly all crap for people like us i thought about doing this too, but i got a headache trying to think of somewhere.

At one point of time I had the money to pretty much go anywhere, I was DISCOURAGED by an internist I saw here, and I'm regretting it. He was not advising against that course of action for my benefit I can see in hindsight.

I may again, but I can't even think about that until I have the money.

What I want in a doctor is to basically help me circumvent my current healthcare system and/or advocate on my behalf. Both of which doctors representing my health care system don't want. They don't want somebody proving them to be either dishonest/incompetent and especially somebody with the credentials to prove these doctors are completely wrong in their methodology of treatment.

I want a doctor that acknowledges that I accept whatever consequences might arise from potential treatments, and prescribe medications that DIRECTLY address symptoms, specifically a doctor that is willing to listen to me when I tell them that anti depressants don't work for me and that I won't give up weeks to months of my life serving as their guinea pig while I bomb my nervous system with serotonin to satisfy their curiosity/rationale.

I pretty much just need a doctor that's willing to try me on shit, whatever might POSSIBLY work, until we find something that does. You know, a doctor with some balls who isn't shilling for interests that conflict directly with my own as a sick person.

 

[Hell...Hath...No...Fury..]

I think there's some in Narnia. But its difficult getting a visa for there.

 

[Chriswolf]

Your best bet is places where doctors are not heavily burdened by laws in pursuing treatment options, literally the opposite of what is beneficial for most conventionally ill people.

If I knew more about what is available in Thailand I would consider that, or potentially the U.S.

In Thailand a doctor will give you Diazepam for a headache, most doctors here would balk at the idea, and I understand that Diazepam is not to be taken lightly, but I would rather a doctor simply be the legal portal by which treatment options are attempted versus a legal blockade.

It's a double edged blade, at this point I simply don't want to be encumbered by the legal or fiscal paranoia of physicians as I am presently.

 

[Hell...Hath...No...Fury..]

I wonder which country is the best that would enable us to try things out instead of constant red tape and hitting brick walls, because if there was a place that generally provided this, i'd seriously consider moving.

 

[Chriswolf]

No first world country is going to be ideal, unfortunately. As that is essentially the origin of such legal paranoia and red tape.

 

[Hell...Hath...No...Fury..]

I'm open to anywhere within reason

 

[GracieJ]

My win, their loss!

A friend asked me last week if I had ever heard of Lucinda Bateman, with the assumption that I of course would be right in line to see her. She is right here in my city. I would love to see her at some point in my life. However... I am successfully way ahead on most symptoms using natural remedies. It would be GREAT to see my labs at this point, with a knowledgeable assessment of where I am at. Of course, the appointments would have to be paid for, and the lab tests paid for... And Dr. Bateman has a three-year waiting list, I hear. With all respect to her knowledge and skill, what is needed at this point is an assessment of illness level with some factors greatly improved.

Do we really have anyone on the planet qualified to recognize patterns remaining after improvement? Just not sure we do yet.

It is like being a cancer patient who had an x-ray or other scan confirming a tumor, then the tumor dissolved, the scans were lost in a fire or an office move, the doctor passed away, and who now believes the tumor ever was, except by the patient's word?

 

[Hell...Hath...No...Fury..]

I had huge improvements for a few years about 7 years ago through antioxidants and liquid vitamins and zapping (as in the Hulda Clark variety) Even built my own zapping machine and i video'd the daily results from using it which showed the improvement over 6 weeks. Whether its bollocks or not, it did something. I might start doing that again.

During my time of improvement i don't think i gave the healthcare system a second thought; just like they've never gave me one. They just went from being mostly irrelevant to completely irrelevant