CPAPtalk.com

Blackspinner, I think a tendency to view all-or-nothing extremes might yield either of those two paradigms. Those two sets of examples you cited are neither diametrically opposed nor mutually exclusive to most people. Rather, I suspect most people strive to integrate both sets of extreme experiences into some middle-ground paradigm.

Autopapdude, "play fair"... Of course, I'm playing fair. Combine anger, fear, a willingness to prematurely condemn individuals, and a willingness to write off an entire group of human beings as bad, and we have the very same ingredients that went into some of mankind's worst historical moments.

And in all of those historical cases, you had perfectly good people willing to go along with those latter two "willingness factors" because of their collective angers and fear. Not a good way to treat ANY group of people on this message board. At least not if you respect perfectly ordinary human beings that is. One of my past lives: formal study in deviant social behavior (not exactly a Bambi'ish paradigm, eh, Blackspinner?). I can tell you with absolute certainty that DME's as a group of ordinary human beings are not the evil incarnate beings that some of the very vocal people on this message board love to "war cry".

If you want to change the DME way of thinking, then enage them in polite but rational discourse. If you want to create your own social following, then pick any enemy but be sure to paint the whole lot of them as evil. History tells us that kind of close-minded anger, fear and demonization campaign ALWAYS gets a really good social following... After all, humans and lemmings have more DNA in common than not.

Ahhhh, SWS, what is not to love about you?? From your avatar to your words of wisdom. BIG HUG AND SMOOCH!

-SWS wrote:I can tell you with absolute certainty that DME's as a group of ordinary human beings are not the evil incarnate beings that some of the very vocal people on this message board love to "war cry".

If you want to change the DME way of thinking, then enage them in polite but rational discourse.

Words of wisdom.

-SWS wrote: If you want to create your own social following, then pick any enemy but be sure to paint the whole lot of them as evil. History tells us that kind of close-minded anger, fear and demonization campaign ALWAYS gets a really good social following... After all, humans and lemmings have more DNA in common than not.

This wasn't the beach I had in mind!!!

SWS - I'm still trying to reconcile your writings with your avatar.
Kathy

Looks like RG remembered her inner tube. Afterall, she is famous for fixes.

Yep, RG is "the fix-it lady", the "I remember where it is lady" and one heck of a valuable member of this forum. Hail, RG!! And many thanks.

-SWS wrote:I can tell you with absolute certainty that DME's as a group of ordinary human beings are not the evil incarnate beings that some of the very vocal people on this message board love to "war cry".

If you want to change the DME way of thinking, then enage them in polite but rational discourse.

SWS, your eloquent and thoughtful comments above inspired me to go find a post I wrote of an experience a year ago. Perhaps not a monumental event, but so important to me at the time; and just one example of being fortunate enough to find the right DME. I've only gone back a couple of times over the past year, and this person continues her generosity and openness to learning from my experiences and management of my own therapy.
viewtopic.php?f=1&t=36328&p=314038#p314038

rooster wrote:

deadhead77 wrote:Brilliant post JBF, gets right to the core of the need for thorough knowledge of your illness and it possible unseen dangers before being absolutely safe to take it's treatment into your own hands.



I was out for over ten hours last night...Bliss

My pressure has been at 10, 7, and then 19, all by prescription from those professionals with "thorough knowledge of my illness". At least they did not kill me during those days.

I am very happy to have taken my treatment into my own "ignorant" hands, faced the "possible unseen dangers", tweaked without a license, and finally brought my therapy to the point of effectiveness.

So, you had a thoroughly unsatisfactory experience with what the general health care system had evolved to. You felt unwell, got diagnosed and trusted the system as it was at that time and for all I know still is. You felt that this was unacceptable and in short order proved the point. You now have the knowledge to safely treat your self because you are intelligent and have researched and now understand your condition. You have had all the learning curves, umpteen masks, rain-out, sore nose etc. How many other Roosters or Unclebobs are there, all self treating, with no faith in the system and from what I read on here a downright contempt for it.
There must be something very wrong with the way your US system works for things to be so crap that you want/have to go hunting online for the knowledge to treat yourself.

I feel lucky, I just deal with the hospital, no one makes money out of my ignorance of my problem. That at least removes one layer of ballship from the equation. But, after what I have learned on here I would still like to be able to take over a lot of the treatment myself because I am led to believe that I can. I don't know this for a fact, but I trust what I have read on here and will look into doing so.

So, although for different reasons perhaps, I agree with you guys on self treatment.

I don't really know what I'm doing yet Rooster, I have an appointment at St Thomas' hospital London 27th of this month to try a couple of new non FF masks and another in late January with a sleep doctor. I shall take that 'list of things to ask' you posted for me and let you know what the answers are and I thank you for helping me with that.I shall also be asking why the hospital is against me self treating and I will post what they say about that on here as well.


Whilst my choice of phrase may have been a bit off, I can't believe the reaction that my suggestions have caused on here.

I hear phrases uttered like

My pressure has been at 10, 7, and then 19, all by prescription from those professionals with "thorough knowledge of my illness". At least they did not kill me during those days.


That suggests to me, a newby, that death is a possibility if someone gets stuff wrong.

I've also been told that U/bob got everything sorted out in one nights sleep and two hours on the net!

If I was a life insurance policy, I would want proof that the person covered was competent to self medicate.

Especially after reading the two points above.

As a knackered, recently diagnosed, long term sufferer of osa just getting my head around the illness, I would have preferred a better presentation than the one I got, which would have included references to sore noses, sleep debt, and the hundred and one other things discussed on this forum.

The sheer relief of knowing that I can get cured and feel better would have been massively enhanced by a better delivery of information at my diagnosis. This could only have been done as a set of steps I would have to climb.


Of course some are faster climbers than others but its the same bloody staircase at the end of the day.

If you think I am wrong, don't just tell me I am because you are now an expert. Address what I am trying to suggest in the spirit in which it was posted and explain why it won't work or tell me what 'you' think would.

At the moment you all seem to distrust what you have and that is muddying the waters of advice over self treatment.

Muffy wrote:I'm heading outside to do the Asteroid Dance again.

Astronatha!! Astronatha!!

Muffy

I don't wan'a be no communust....
I ain't no social deviunt.....

Never had no doctor experiunce....
never saw a DME that wasn't just ludicrus...
been told too many times you can't do that because you're just ignoraunt.......
by folks that have a certificut of superiosity.

...now, true it is, that when wisdom gets crowded up enough,
one should never paint with too broad a brush.

So if your pressure is 7, 9, 11 and still ain't enough...
how we ever going to have a happy bunch....??

For me....just shifting a pair of dimes at a lazy fair really is the best for effectivnus......
read and learn and share......without vindictivnus......

and I'll continue to be my own best therapust.

deadhead77 wrote:

rooster wrote:

deadhead77 wrote:

As a knackered, recently diagnosed, long term sufferer of osa just getting my head around the illness, I would have preferred a better presentation than the one I got, which would have included references to sore noses, sleep debt, and the hundred and one other things discussed on this forum.The sheer relief of knowing that I can get cured and feel better would have been massively enhanced by a better delivery of information at my diagnosis. This could only have been done as a set of steps I would have to climb..

That's the point I think is trying to be made. Because "delivery of information" is so sadly lacking and most of us could not even find the first step on the staircase, we only found help here by taking the informed recommendations(and tips and fixes) of all the experts here who have lived the cpap experience. Even if we had found that "set of steps" you speak about and started the slow climb, I know my husband and I would have given up at that early difficult stage if not for some expert guidance here that gave us a little hope that we could succeed on this journey. Sad but true, here and in your country.

JohnBFisher wrote:[ jbf drags over the soapbox and climbs on top of it ... ]

Good for you! Typically, the most effective treatment is one that involves the patient. This is especially true when it requires both modification of behavior and compliance with the treatment plan. This is true for diabetics as it is for apnea patients.

But let's face it, there are a whole host of reasons people might not want to share information. These can include:

• Fear of litigation
• Uncertainty about the underlying knowledge
• Feeling threatened by an educated patient
• Having to deal with an opinionated, but not educated patient
• Previous bad experiences with any of the above

You can find that in any consultative field where diagnosis of the problem and creation of a mitigation plan is required, such as engineering (of all sorts), working with the food supply, working with transportation systems, vehichle maintenance, computer consulting, and so on. You will find the same behaviors driving individuals there. I do computer consulting and attempt to teach as I help solve problems. But many, many other individuals just follow the process they have been taught and feel overwhelmed if they are asked questions.

And frankly, there are sometimes reasons why any industry requires certain things. For example, in most situations with computers reboot and retry are reasonable. Unless it is a computer system that contains a patient information system. Or unless it is a computer system that drives trading (stocks, bonds or commodities). Just because my nephew Joey knows how to use his computer does not mean he knows how to deal with these more difficult situations. Consulting companies build rules to help Joey avoid hurting others. He will need to demonstrate a certain level of experience before he goes it on his own. It's based on hard experience.

That is the same case for the healthcare industry. For many (if not most) of the cases, doing careful adjustment is not a problem. But as with computers, there are a small number of cases where "tinkering" is not wise and might lead to serious health problems. What if someone has an underlying heart condition? What if the person has a seriously compromised respiratory system? Unfortunately, when rules are created, they must address those fringe cases, not the majority of the cases.

I've seen others here get upset at that need, but as originally noted, "Don't blame RT/DME". Ideally, the RT/DME follows the approach that CpapRRT espouses: EDUCATE! I've switched doctors, DMEs and even landscapers if they don't help me learn how to deal with my situation. Empower me. But also help me know where I might get into trouble.

[ jbf steps down and drags off the soapbox ... ]

A beautiful commentary.

Educate. Empower. And educate me some more, instead of telling me I don't need to know that.

Slinky wrote:Ahhhh, SWS, what is not to love about you?? From your avatar to your words of wisdom. BIG HUG AND SMOOCH!

Right back at ya, Slinky: XOXOX!

rested gal wrote: This wasn't the beach I had in mind!!!

Once those furry little triathletes move on to the biking challenge, we can all drag out the chaise lounges for a beach party...

kteague wrote: SWS - I'm still trying to reconcile your writings with your avatar.

Admittedly I don't smoke cigarettes.

plr66 wrote: Perhaps not a monumental event, but so important to me at the time; and just one example of being fortunate enough to find the right DME. I've only gone back a couple of times over the past year, and this person continues her generosity and openness to learning from my experiences and management of my own therapy.
viewtopic.php?f=1&t=36328&p=314038#p314038

A wonderful pro IMHO! Thanks for sharing!

Muffy wrote: Astronatha!! Astronatha!!

We don't need no ELE events... How about a nice innocuous rain dance instead?

carbonman wrote:read and learn and share......without vindictivnus......
and I'll continue to be my own best therapust.

You always say it so well, carbonman. I often turn to your uplifting writings when I need a nice morale boost.


__________________________________________________________________________________________________________________________________

Many DME's, doctors, and other sleep clinicians wrote: We don't think it's wise that you should adjust your own pressure.

More often than not, that has absolutely nothing to do with crawling out from under wood piles or being a nasty lot of human beings---who just so happened to have converged in the various sleep professions. Rather, it has to do with that viewpoint being a part of the clinical paradigm in contemporary sleep medicine.

rested gal wrote:Link to a study that concluded, "yes."
"Can Patients with Obstructive Sleep Apnea Titrate Their Own Continuous Positive Airway Pressure?"
http://ajrccm.atsjournals.org/cgi/reprint/167/5/716

Link to a Powerpoint presentation by board certified pulmonolgist/sleep doctor (Dr. Barbara Phillips) at a meeting of the American Lung Association of the Central Coast - November 2004:
"Not Every Patient Needs to Go to the Sleep Lab"
http://www.alaccoast.org/pdf/Phillips_0830.pdf

Hooray for that study, SWS! Thanks for posting.

This topic has gone one for pages, some writing truly eloquent posts that have made it worth rehashing some topics.

I'd like to take a second to redirect deadhead77 back to the CPAP Wiki (light bulb at the top of the page) and the topic Newbie to CPAP. I think that's the closest we have to a step-by-step approach on this forum. I believe someone did mention this, pages back there somewhere. I do wish you luck on your journey to get well. And yes, the delivery of information to me by the medical profession really left something to be desired, although I eventually found the right person to work with and now have a working, collaborative relationship. Besides the forum I recommend hunting down a good book on the topic. There's a recent thread on that.

If I were brandnew to "sleep apnea" and "CPAP", this is what I'd read to start with:

LINK to Mile High Sleeper's great information resource for cpap users.
http://www.smart-sleep-apnea.blogspot.com