Deleted

BlackSpinner · Post by **BlackSpinner** » Sat Mar 13, 2010 8:31 am

brain_cloud wrote: With all my heart, I wish to God I had not read this thread. Fully half the charm of this forum has now been lost to me.

About two weeks ago, looking through some dry-ish thread, I happened upon that arresting photograph of that martial young lady. And was astonished. This dazzling prodigy was discoursing in a most technical and learned fashion, and with a manly cadence (as I then though, before being taken aback by that photo).

In this forum, in no way deficient in clever females, here was the paragon. So young. And so fair. How came she by all this knowledge? No hint of infirmity was readily apparent. Was there some sad story behind those eyes?

Well I know of a site where there are naked babes wrestling and fighting with swords but you would have to pay.

mars · Post by **mars** » Sat Mar 13, 2010 8:36 am

Muffy/SAG/Whatever

So what part of -

The answer to your question(s) is -- I have not decided. I feel I am at a crossroads of sort in my situation. I'm still very interested in learning more and figuring out what the heck is going on, but a little "concerned" about posting too much.

The purpose of this thread was to express how I feel, explain why I did what I did and to make peace with those involved.

Please give me some time to figure out how much I want to jump back into the situation that caused all this in the first place.

did you not understand?

I think I have worked it out. You are not here to help - you are here to be right, and your questions are basically bullying, in a determined effort to prove you are right, and know more than anybody else. This is called a power trip. It is not help, it is abuse.

My view is that the forum can well do without you. You love to show off how clever you are but do very little practical good. You abuse people so they leave the forum, and you try to divert from your abuse by quirky humour.

I repeat what I said in my previous post -

Re: Deleted

Postby mars on 11 Mar 2010, 19:28
Hi All

One of the first things I learned about relating to people was that any knowledge I had that was useful to others was useless unless I could present it to them in a receivable manner.

Why responsible forum members keep on asking newcomers who have been abused by SAG/Muffy just because he gives good information at the same time he abuses them is simply beyond me. Why don't they ask SAG/Muffy to help without being abusive. Why does the newcomer have to overcome all these unnecessary obstacles.

Muffy has been helpful to me, but he has also been unnecessarily difficult. He is the cause of the problem, and he is the only one who can fix it.

I am ashamed of some of my posts to people, but I have also learned how better to deal with difficult posts. I think it is time the need to change was given to Muffy, not some newcomer who has enough problems already.

I refuse to be conned into supporting Muffy because he can be helpful. He is abusive. He does not need to be abusive. Consequently he is a seriously flawed helper.

And I think it is shameful that this forum consistently defends him, and tells newcomers they have to put up with his abuse.

Mars

And now you have the Forum so bewitched that you have your victim apologising to you. And others telling her she has to put up with your abuse because you are so clever and helpful. Bullshit! You may be clever, but helpful and caring you are not.

WHAT YOU DO, AND WHAT OTHERS DO IN SUPPORTING YOU, IS DISGRACEFUL

Madalot has asked to be left alone. Your latest post is abuse, plain and simple, and your hidden agenda can be seen by anyone with eyes to see.

Mars

dtsm · Post by **dtsm** » Sat Mar 13, 2010 8:39 am

BlackSpinner wrote:
dtsm wrote: Good morning Muffy, newbie here. No disrespect intended, but why can't you help Madalot off-line w/ either pm and/or emails? IMHO
Because nearly every where in life, if there is one person asking a question then there are at least ten others waiting for the answer who are afraid to ask or who don't know how to ask.

This has gone way beyond that....in my world, this is not SPAM

BlackSpinner · Post by **BlackSpinner** » Sat Mar 13, 2010 8:47 am

dtsm wrote:
BlackSpinner wrote: Because nearly every where in life, if there is one person asking a question then there are at least ten others waiting for the answer who are afraid to ask or who don't know how to ask.
This has gone way beyond that....in my world, this is not SPAM

No it is because of this:

http://www.cbc.ca/health/story/2010/03/ ... ients.html

Three-quarters of Canadian family doctors say they suffered at least one incident of major abuse at the hands of a patient, according to a new study.

The study, the first national look at violence in doctor's offices, was released Friday in the journal Canadian Family Physician.

Often people are scared, can't get timely service, and turn their anger towards those around them, agreed Dr. Donna Manca, a family physician with a teaching practice at the University of Alberta in Edmonton. Usually doctors can work around these patients, she said.

But doctors may also become the focus of delusions or obsessions of their patients.

Muffy · Post by **Muffy** » Sat Mar 13, 2010 8:58 am

BlackSpinner wrote:Because nearly every where in life, if there is one person asking a question then there are at least ten others waiting for the answer who are afraid to ask or who don't know how to ask.

And what makes this case so interesting is that if the major underlying entity is SDB, then it needs a pressure approach, but if it is a respiratory failure problem, then a volume-oriented attack would probably have more benefit, making this a great study case.

Further, if it is the latter (which apparently it is), then the suggestion of using ASV as proposed by another poster who shall remain nameless Banned would be totally inappropriate as the less than 100% target keeps getting smaller and smaller as the hypoventilation persists.

Muffy

rested gal · Post by **rested gal** » Sat Mar 13, 2010 9:25 am

BlackSpinner wrote:
dtsm wrote: Good morning Muffy, newbie here. No disrespect intended, but why can't you help Madalot off-line w/ either pm and/or emails? IMHO
Because nearly every where in life, if there is one person asking a question then there are at least ten others waiting for the answer who are afraid to ask or who don't know how to ask.

Exactly what BlackSpinner said.

Once something as complicated as what Madalot is dealing with was brought openly, by her, to a public message board, discussing it openly is a good thing, imho. Reading the discussion could very well be a life-saving exercise for others facing similar health situations whether they choose to post or not.

Banned · Post by **Banned** » Sat Mar 13, 2010 9:39 am

Muffy wrote: Further, if it is the latter (which apparently it is), then the suggestion of using ASV as proposed by another poster who shall remain nameless Banned would be totally inappropriate as the less than 100% target keeps getting smaller and smaller as the hypoventilation persists.

Can't argue with that. But if Madalot and her team of medical experts have no interest in pursuing a Blood-Gas test to verify the need for a volume generator, aren't we at an impasse?

So far, putting Madalot on AVAPS appears at best, to be a guess.

Banned

Madalot · Post by **Madalot** » Sat Mar 13, 2010 10:18 am

:::sigh:::

Let me put things into perspective here. I have read everything and every, single, solitary comment/suggestion/criticism that I have read has been processed and stored in my brain.

I may be wrong, but I get the feeling that when somebody makes a suggestion (ie getting the blood gas done), if I don't appear to have IMMEDIATELY called my doctor and demand she do it, then I'm a bad little girl who comes here asking for advice, then doesn't take it.

My pulmonary doctor is located at a major university hospital, 125 miles from my home. I can't just pop over to her office to get this stuff done. But just because I haven't come back here and reported that I've done this and that doesn't mean that I don't have plans to discuss it with her.

As has been stated over and over again, my situation requires that I work within the framework of my medical team's policies and balance the information I get here with keeping them on my side to try to help me.

Even if you take the respiratory issues out of the equation, my situation is very complicated. Even the best doctors are not 100% positive EXACTLY what is causing my neuromuscular issues. They believe it's a Limb-Girdle Muscular Dystrophy, but they are not 100% positive about it. My symptoms are extremely varied and downright confusing. Even if my symptoms point 90% to one specific disease, there are other issues that throw it into more confusion because it doesn't make sense. Unfortunately, having the insurance I do makes it extremely difficult to find out because as far as Medicare is concerned, they'd rather just let me die than pay for a ton of tests. And that's the truth.

I have full intention of asking my doctor some very specific questions that have been posed here. But in truth, I honestly, 100% believe that she can back up everything she feels is happening and the treatment she is giving me, regardless of my ability to accurately provide that to people here. And let's look at it from HER viewpoint -- if she can support her diagnosis to the satisfaction of my insurance, is it possible that trying to do additional tests to PROVE her diagnosis and treatment will only result in the insurance kicking up and saying NO!!!!?????

If you go to the doctor with a cold -- it looks like a cold, acts like a cold and there's no reason to think it's anything other than a cold, why would the doctor perform more tests simply to confirm it's a cold????

See where I'm going with this?

My condition is complicated. Unfortunately, my insurance plays a MAJOR part in how much we can do about it. And if you look at it from that view, I think it's amazing I'm as far along in my treatment as I am.

Now, if somebody wants to send me a couple hundred thousand dollars to push for more more tests, knock yourselves out. (just kidding).

Muffy · Post by **Muffy** » Sat Mar 13, 2010 11:05 am

Madalot wrote:I may be wrong, but I get the feeling that when somebody makes a suggestion (ie getting the blood gas done), if I don't appear to have IMMEDIATELY called my doctor and demand she do it...

While I am tempted to say, "Oh, no! That's not the case at all!'', I think once a thread picks up a head of steam and treatment by committee starts, that's exactly the impression one might get.

Muffy

Banned · Post by **Banned** » Sat Mar 13, 2010 11:12 am

Hi Madalot,

I'm merely speculating on your need for AVAPS, in lieu of your comment that you sometimes couldn't breathe and I suggested an ASV might be a better device for periodic breathing. You stated your Doc put you on AVAPS to up your O2 levels. Any CPAP machine is designed to up one's O2 level and doesn't necessarily require AVAPS.

Please do not get offended at any on-line speculation. It really is not personal. I'm not trying to second guess you or your medical team.

To the best of my ability I'm leveraging your experience so I can all learn something.

It is not my intent to have you feel I'm taking advantage or demanding anything from you.

Best,
Banned

Banned · Post by **Banned** » Sat Mar 13, 2010 11:18 am

Muffy wrote:I think once a thread picks up a head of steam and treatment by committee starts, that's exactly the impression one might get.

Do you have any thoughts on why Madalot's medical team put her on AVAPS other than patient presents with obesity, MS, and low O2 sats? Would these 3 observations necessarily require a volume solution?

Banned

BlackSpinner · Post by **BlackSpinner** » Sat Mar 13, 2010 11:21 am

Madalot wrote::::sigh:::

Let me put things into perspective here. I have read everything and every, single, solitary comment/suggestion/criticism that I have read has been processed and stored in my brain.

I may be wrong, but I get the feeling that when somebody makes a suggestion (ie getting the blood gas done), if I don't appear to have IMMEDIATELY called my doctor and demand she do it, then I'm a bad little girl who comes here asking for advice, then doesn't take it.

What you are seeing is a bunch of technical people brainstorming an interesting puzzle. I see this all the time in my work. One goes in all directions and asks all sorts of questions, bounces off walls and gets in touch with the ceiling and mentally tries out every weirdo combination. It can be very bewildering to the non - initiated. I have seen customers try to slide under the conference table "umm got to go for a bio break and check messages - see you in a bit" as they back out the room.

If you go to the doctor with a cold -- it looks like a cold, acts like a cold and there's no reason to think it's anything other than a cold, why would the doctor perform more tests simply to confirm it's a cold????

see, us techie types like this.

Madalot · Post by **Madalot** » Sat Mar 13, 2010 11:27 am

Muffy wrote:
Madalot wrote:I may be wrong, but I get the feeling that when somebody makes a suggestion (ie getting the blood gas done), if I don't appear to have IMMEDIATELY called my doctor and demand she do it...
While I am tempted to say, "Oh, no! That's not the case at all!'', I think once a thread picks up a head of steam and treatment by committee starts, that's exactly the impression one might get.

Muffy

Thank you, Muffy, for acknowledging that my interpretation is understandable, even if that's not the real intention. It means a lot to see you say that.

I don't expect to live much longer. I will turn 48 next month and have absolutely no expectations of living to 50. My condition is deterioriating very rapidly, as all my doctors have acknowledged. And since the heart is a muscle, I am just waiting for that to become a victim of this stupid disease too.

At any given time, on any given day, I am ready to give up even worrying about any of this stuff. When I feel stronger and more positive, I truly relish and cherish the help and insight I get from people here. But when people start pushing me too hard and borderline bullying me, I revert to my "I'm NOT doing this anymore" mentality.

This whole breathing thing has been a royal PITA from the beginning. When I first reported the nighttime breathing issues to my neurologist, he wasn't surprised. He didn't question me much about it. In hindsight, I think he was expecting it. And he did exactly what he needed to do -- send me to a breathing specialist, one who specializes in breathing difficulties due to disease, for her evaluation and treatment. And when my neurologist decided it was time to call in the BIG GUNS for a second opinion about my neuromuscular disease, THAT doctor was not the least bit surprised by my starting to have breathing difficulties. Hello? What does this tell us?

It wasn't until a few weeks ago that MY research turned up that nocturnal breathing difficulties are the FIRST sign/symptom of respiratory failure in neuromuscular diseases. Perhaps (and here I go assuming again, but I WILL ask the question when I get the opportunity) because I have a CONFIRMED neuromuscular disease that has taken an expected course, the respiratory issue is yet another expected complication AND consistent with impending respiratory failure.

So when I report here that this and that has happened, or the RT/doc have ordered this and that, just because I can't provide the exact medical documentation asked for here doesn't mean they don't have what THEY need to provide me the treatment they believe will prolong my life.

Here's another example of why I get so damned frustrated: the whole bipap not recognizing my breathing thing. You have to trust me when I say that exhaustive testing on the machines and OBSERVATION by me, my RT, my husband AND the owner of the DME have confirmed, to my doctor's satisfaction, that my breathing is too shallow to trip the bipap machines (any of them) and thus required a switch to something else. And I saw my doctor BEFORE she ordered the ventilator. She EXAMINED me and checked my breathing that day. But I've read back and forth, back and forth about because they haven't done this and that, and ordered this and that, and because I can't answer this and that, THEY DON'T HAVE THAT PROOF.

Hockey Pucks!!!

But in the end, the information I am getting here IS being used, by me, to help me figure out if/when my medical team is doing right by me.

Man, I'm tired. Very tired. And I feel like crap. My legs hurt and ache (my doctor has given me something for that even though he didn't do exhaustive tests to PROVE I was in pain) -- my breathing isn't great today (it's an effort today, which it sometimes is).

So, I'm going to get off this computer and rest for a while.

-SWS · Post by **-SWS** » Sat Mar 13, 2010 11:43 am

Muffy wrote:Further, if it is the latter (which apparently it is), then the suggestion of using ASV as proposed by another poster who shall remain nameless Banned would be totally inappropriate as the less than 100% target keeps getting smaller and smaller as the hypoventilation persists.

I think that's a caveat for short-sighted servo ventilation machines without "volume assurance" (hence the AVAPS acronym for that latter machine). The designed purpose of the "volume assurance" value/number programmed by clinicians is to prevent that diminishing-target scenario you just described. Volume targeting will never be lower than that assurance number programmed by the clinician.

That said, I agree that volume ventilation (not AVAPS) is the best modality for more severe respiratory failure (as opposed to less severe hypoventilation that is commonly associated with neuromuscular disease, severe obesity, etc.). Any way you slice it AVAPS immediately and primarily targets pressure, hoping to hit that minimally-assured secondary volume target. And AVAPS can take quite a few breaths to get the patient back on volume target as well.

_________________________________________________________________________________________________________________

Madalot, I'm sure you recall our proposing that we use your learning curve toward knowing how to help others in a similar situation. You seemed amenable to that idea at the time---or at least didn't object.

Well, this is the discussion we need toward knowing how to help others in a similar situation... You just might continue finding information of use in these unfolding discussions as well. At least that is my hope.

brain_cloud · Post by **brain_cloud** » Sat Mar 13, 2010 11:52 am

BlackSpinner wrote:
brain_cloud wrote: With all my heart, I wish to God I had not read this thread. Fully half the charm of this forum has now been lost to me.

About two weeks ago, looking through some dry-ish thread, I happened upon that arresting photograph of that martial young lady. And was astonished. This dazzling prodigy was discoursing in a most technical and learned fashion, and with a manly cadence (as I then though, before being taken aback by that photo).

In this forum, in no way deficient in clever females, here was the paragon. So young. And so fair. How came she by all this knowledge? No hint of infirmity was readily apparent. Was there some sad story behind those eyes?
Well I know of a site where there are naked babes wrestling and fighting with swords but you would have to pay.

Why do you have to take something that is beautiful and pure, and turn it into something shameful?

Ah, those haunting eyes.