The phone!

[Babette]

BTW, for all of you so interested in helping Julie with her phone problem - notice none of your suggestions are being taken?

Maybe you can clue her in to why she might want to manage her own Xpap treatment.

I offered her help with reading her data capable smart card and she blew me off. Told me it wasn't necessary to read her data, and she wasn't interested in my help.

Guess she's too involved with worrying about her phone problems.

Sounds to me like a sleep deprived patient who can't see the forest for the phone ringer off button....

Oh well....
B.

[Georgio]

Get call forwarding on both your cell phone and your home phone, then forward all calls to his cell phone, and tell him you need your sleep.

[Juliebove]

BTW, for all of you so interested in helping Julie with her phone problem - notice none of your suggestions are being taken?

Maybe you can clue her in to why she might want to manage her own Xpap treatment.

I offered her help with reading her data capable smart card and she blew me off. Told me it wasn't necessary to read her data, and she wasn't interested in my help.

Guess she's too involved with worrying about her phone problems.

Sounds to me like a sleep deprived patient who can't see the forest for the phone ringer off button....

Oh well....
B.

Ahem! I don't know what an Xpap is. I use CPAP. You were telling me to do something I am not supposed to do. That's it. Bottom line. Now I don't care what the rest of you do, but I'm not about to go messing around in parts of my machine that I'm not supposed to be messing around with. You and all the others here are not in charge of my medical treatment. That's up to me and my Drs.

[jules]

You might want to check out apneasupport.org.

I believe you might find a better match of "ideals" there.

[Juliebove]

I did. They never activated my account. And I don't have any ideals.

[ozij]

There was a clear statement of ideal in your post, Julie:

Code: Select all

[list=1][*]I'm not about to go messing around in parts of my machine that I'm not supposed to be messing around with. 
[*]You and all the others here are not in charge of my medical treatment. 
[*]That's up to me and my Drs. [/list]

Personally, I want to know all parts of my machine and what they do - including software and how it affects my machine functioning.
I have learned enough about the machine to know how not to cause any harm by any change I make.

I also think that you description of the way you use handle machines: your phone, answering machine and cell phone indicate that you are wary of making changes on your cpap for good reasons.

apneasupport.org is a forum on which nobody is ever allowed to tell anyone to change anything on their machine - people are kicked out of that forum for doing that.

Nobody here is in charge on anything anyone else does -- the disclamer at the bottom of every page says that very clearly:
The information provided on this site is not intended nor recommended as a substitute for professional medical advice.

O.

[Juliebove]

There was a clear statement of ideal in your post, Julie:

Code: Select all

[list=1][*]I'm not about to go messing around in parts of my machine that I'm not supposed to be messing around with. 
[*]You and all the others here are not in charge of my medical treatment. 
[*]That's up to me and my Drs. [/list]

Personally, I want to know all parts of my machine and what they do - including software and how it affects my machine functioning.
I have learned enough about the machine to know how not to cause any harm by any change I make.

I also think that you description of the way you use handle machines: your phone, answering machine and cell phone indicate that you are wary of making changes on your cpap for good reasons.

apneasupport.org is a forum on which nobody is ever allowed to tell anyone to change anything on their machine - people are kicked out of that forum for doing that.

Nobody here is in charge on anything anyone else does -- the disclamer at the bottom of every page says that very clearly:
The information provided on this site is not intended nor recommended as a substitute for professional medical advice.

O.

And that's fine for you. I do not like taking things apart or delving into things. That's what professionals are for. Again, I don't care what anyone else does.

But I don't like someone insisting that I need to do what she says. And that is what happened to me. Also, there is no law that says I have to take everyone's advice. She said I didn't listen to any of it and that's not true either.

[ozij]

There is absolutely no reason on earth for you to do what everyone else does.
O.

[jules]

There is absolutely no reason on earth for you to do what everyone else does.
O.

And there is no reason to believe doctors are gods either.

I can tell you from first hand experience of inappropriately treated sleep apnea (mine) for years by a doctor who was a prof at a med school.

[ozij]

And there is no reason to believe doctors are gods either.

I fully agree, jules.

[Juliebove]

There is absolutely no reason on earth for you to do what everyone else does.
O.

And there is no reason to believe doctors are gods either.

I can tell you from first hand experience of inappropriately treated sleep apnea (mine) for years by a doctor who was a prof at a med school.

I never said they were! I have been misdiagnosed and been failed to get diagnosed with many things many times.

[kteague]

Nothing wrong with depending on your physician to do what they get paid to do, as long as the results are satisfactory. A lot of people here haven't had a positive experience with that, hence the self monitoring of data and treatment. In my mind there's a difference between being informed about your own data and changing your own pressures. Although I have been known to out of necessity do both, I wouldn't think just "knowing" would go against any medical advice. Oh, if I'm not mistaken, XPAP is an umbrella term referring to any machine that delivers Positive Airway Pressure regardless of the delivery system (CPAP, APAP, BIPAP, etc.).

You mentioned being disabled. I don't know what your disability is (not my business), but it sounds to me that between your own challenges and your household matters, you've got a lot on your plate to deal with. Maybe maintaining status quo is "working" for you right now. Sometimes changing anything (even if for the better) takes more than we can muster. I hope my well intentioned outside-looking-in marital and treatment opinions that you didn't ask for have in no way added to an already difficult time.

I'm guessing your original message was just plain wondering if others take their mask off or turn their machines off to answer the phone. Well, I use nasal pillows, and I have on the rare occasion the phone is in my bedroom, answered it with my mask on just to say to hold on a minute, then turn the machine off. (Don't want to take the mask off while it's running and skew my leak numbers.)

At least you are trying to use the machine when you lay back down. Hopefully all mornings won't be as bad as the one when you started this thread.

Kathy

[Juliebove]

Nothing wrong with depending on your physician to do what they get paid to do, as long as the results are satisfactory. A lot of people here haven't had a positive experience with that, hence the self monitoring of data and treatment. In my mind there's a difference between being informed about your own data and changing your own pressures. Although I have been known to out of necessity do both, I wouldn't think just "knowing" would go against any medical advice. Oh, if I'm not mistaken, XPAP is an umbrella term referring to any machine that delivers Positive Airway Pressure regardless of the delivery system (CPAP, APAP, BIPAP, etc.).

You mentioned being disabled. I don't know what your disability is (not my business), but it sounds to me that between your own challenges and your household matters, you've got a lot on your plate to deal with. Maybe maintaining status quo is "working" for you right now. Sometimes changing anything (even if for the better) takes more than we can muster. I hope my well intentioned outside-looking-in marital and treatment opinions that you didn't ask for have in no way added to an already difficult time.

I'm guessing your original message was just plain wondering if others take their mask off or turn their machines off to answer the phone. Well, I use nasal pillows, and I have on the rare occasion the phone is in my bedroom, answered it with my mask on just to say to hold on a minute, then turn the machine off. (Don't want to take the mask off while it's running and skew my leak numbers.)

At least you are trying to use the machine when you lay back down. Hopefully all mornings won't be as bad as the one when you started this thread.

Kathy

Yes, I wanted to know if they took the masks off. On the day that I posted this, the phone rang REPEATEDLY! I just got fed up. I also realize that most people do not do their sleeping during the day. I do. At least part of it. And most of the time during the day, the phone does not ring. But on that day the vet called, I had reminders for upcoming medical appointments, one of my parents called, and a few were unsolicited things that IMO I shouldn't have gotten because I am on the "do not call" list. My husband may have called me once or twice in there. I don't remember now. I just got fed up and frustrated!

My disability comes from Fibromyalgia, diabetic neuropathy and venous insufficieny. If you were to see me, you might think nothing was wrong with me. Sometimes people comment that I am limping or ask what is wrong with my foot. One leg seems to be stronger than the other. Always has been though.

And because I have diabetes I do know a lot about monitoring myself. We diabetics have to do that. I also know of a LOT of admant diabetics online who insist that newly diagnosed people do as they do and if they don't they screech that they are in the wrong. And I know that due to my combination of other medical problems, I am very much an atypical diabetic. Therefore I never tell someone to do as I do. But I will tell them what I do if they ask...to manage my diabetes that is.

This sleep apnea is a new diagnosis for me as is the CPAP machine. So for now, I feel I should give the Dr. a chance and do as he says or wants me to do. If at some point in the future (and I don't know when that might be) I feel that isn't working, I will do something different. I do know enough to do that. But I will never blindly follow the unsolicited advice of someone I do not know from the Internet which is what I feel happened in the case of reading my own card.

I know plenty of diabetics who get software that hooks up to their blood sugar meters so they can print out graphs or charts or whatever. It serves their purpose, whatever that is. Me? I am happy with my old fashioned log book and pen. With that I can make notes and it's portable. Also works during a power failure.

[troy20772]

I agree with the others that you need to get your husband to stop calling unessarily. I turn my cell off at home & we let the answering machine get the calls when we can't Asa far as the millitary goes I don't what tell ya

[Paul56]

BTW, for all of you so interested in helping Julie with her phone problem - notice none of your suggestions are being taken?

Maybe you can clue her in to why she might want to manage her own Xpap treatment.

I offered her help with reading her data capable smart card and she blew me off. Told me it wasn't necessary to read her data, and she wasn't interested in my help.

Guess she's too involved with worrying about her phone problems.

Sounds to me like a sleep deprived patient who can't see the forest for the phone ringer off button....

Oh well....
B.

Ahem! I don't know what an Xpap is. I use CPAP. You were telling me to do something I am not supposed to do. That's it. Bottom line. Now I don't care what the rest of you do, but I'm not about to go messing around in parts of my machine that I'm not supposed to be messing around with. You and all the others here are not in charge of my medical treatment. That's up to me and my Drs.

Wow!

Given that you may be in the wrong forum because the majority of the folks here like to read their numbers and know what is going on with their therapy on a daily basis. I read my numbers from the machine each morning so I know how the therapy is going.

What do you do with your blood glucose readings? ...run to the Doc to check what should be done when/if they go out of whack? Sorry, but that approach doesn't work... the whole purpose of taking the readings is so adjustments can be made immediately.

Reading your numbers is not exactly "messing around in parts of my machine". With reference to diabetes it is equivalent to reading your glucose numbers from the glucose meter.

Get your head out of the sand... now!