The phone!

[hose head]

I think that most people with OSA do not read their numbers, know their leak rate, or have any software to monitor their therapy. I know one guy at work, who was diagnosed OSA a few years ago. He didn't get along with his machine, threw said machine in closet and has continued to decline in health. (He's on sick leave right now.) Another woman got her machine in December. She doesn't use her machine but every once and while. I have tried talking to her about masks and how to stop leaks, but she is sure that her doctor is handling it. She is on a pressure of 19 with no EPR and waiting to fail. She has no idea how many events she has when she sleeps. I let things ride.
My therapy is going well now that I got involved. I still haven't got everything right, but I wear the mask every night and watch my numbers.
People just have to let others do what they will.
OBTW I do not have a phone or alarm clock in bedroom. If my family calls me during the night, it had better be an emergency. This has been the rule since before OSA. Between family members, we don't leave messages. We check caller id. If someone called, we call back when we get home, or finished with what we were doing and ask why they were calling.

[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.

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!

Of course I don't run to the Dr. I mail him my readings every two weeks per his request. Now I didn't used to do this. I started doing it when the insulin therapy wasn't working like it was supposed to and the diabetes nurse that was supposed to be working with me said she gave up and didn't know what to do. And what adjustments would you say I could make immediately? Changing my diet didn't help, it only made things worse. Changing my insulin dose also doesn't seem to work. I am atypical when it comes to diabetes and there are complicating factors such as my other medical conditions.

I take two kinds of insulin. One nightly and another with each meal. I use a sliding scale to adjust what I take with each meal.

As for my head being in the sand... It isn't! Once again you people are telling me to do something I'm not supposed to do. If you want to do that, fine. But I can't see how that gives you any right to pick at me for not doing something I'm not supposed to do.

[Wulfman]

How about.........

Let's everybody ratchet this conversation down a few notches??????

If Juliebove wants to manage her diabetes therapy and not this one......so be it......that's her decision.
Personally, I think some of her problems with her CPAP therapy is the way her machine is configured (5-20 cm.), but I'm not about to make any suggestions in that regard......

And, just because alot of us have diabetes and we choose to manage BOTH therapies ourselves, doesn't give us the right to suggest that she do the same.

We all know people who don't manage either or both of these conditions and therapies and we know (and have read about) lots of doctors and other medical professionals who could care less, once they get our money and/or can keep getting it.

I'm done now.

Den

[Paul56]

Hey Den... I'm cool and believe in living & let live.

I'm not sure I completely understand how simply reading the numbers is "something I'm not supposed to do" but anyways.

Diet is a crucial part of diabetes and needs to be controlled otherwise the blood sugar levels gets out of control... thus the reason for self-testing. Julie is atypical... okay.

The phone... turn the bloody thing off. End of issue.

Is there anything anyone can help you out with here Julie with respect to your apnea?

[Wulfman]

Hey Den... I'm cool and believe in living & let live.

I'm not sure I completely understand how simply reading the numbers is "something I'm not supposed to do" but anyways.

Diet is a crucial part of diabetes and needs to be controlled otherwise the blood sugar levels gets out of control... thus the reason for self-testing. Julie is atypical... okay.

The phone... turn the bloody thing off. End of issue.

Is there anything anyone can help you out with here Julie with respect to your apnea?

Maybe some of the same people (anonymous "guests") that come in here and tell us that it's "illegal" for us to be tweaking/monitoring our therapy have convinced her of that, too......even though they've read our conversations comparing monitoring diabetes with monitoring our CPAP/APAP/Bi-Level therapy.
Yeah, I'm a Type II, also, and monitor/regulate both therapies on my own. In my opinion, trying to control T2 (with just diet and exercise) is much harder than CPAP......and knowing that there are undeniable connections between both conditions, I find it hard to understand why someone could/would do one and not the other......but far be it for me to try to get that point across to anybody who doesn't want to.

KnowwhatImean?

Den

[Froro]

Wierd turn in this conversation.

I don't understand how reading numbers is something you arent' supposed to do. I told my DME like a week after I started that I went online to find out how to access the data and they said "oh..no one told you how to do that here?" I laughed, no one told me NOTHIN at the DME other than how the clean the thing.

Anyhow. I've been in and out of my docs for a variety of things since starting this whole thing a month ago. (mostly sick kids and booster shots). I was telling him about my numbers and that "while I know I'm not supposed to" I tweeked the pressure a bit. He just shrugged, let out a little laugh and said...yeah...you aren't exactly the type of person who wouldn't. He asked what pressure I put it at, how the numbers were after and said...okay, your a smart woman, keep me posted. I told him I was ordering a smart card and reader for data, and he thought it might be useful if I start running into trouble and was all for it.

I dunno, maybe I just have a different kind of doctor (this isn't my sleep doc, my family doc). He knows I become fully engaged and knowledgable in whatever comes my way so it's no biggie for him. I was in today for a vaccine and he asked about it all again. I told him I was staying on track at my "tweeked pressure" , he told me a variety of things to keep an eye on and said, good, just let me know if you change the pressure again, keep him in the loop. The only way I know of to be successful in any treatment is to become engaged in it but not everyone is like that. My MIL refused to change something with her treatment on another issue a few years back even though all of us were telling her there was a problem. She finally went back to her doctor and he told her to do exactly what we had been telling her all along. Told her from now on that while he understands she is "non medical" common sense goes a long way. If something is not working, change it or come in so he can change it if she won't listen to us.

Anyhow. Do whatever you need to do but turn the stupid phone off!!! Only an emergency should be disturbing your sleep. (Hard and fast rule in our house years before cpap/apnea was even on the radar) If you don't follow any other advice given follow that one. You are enabling him by allowing it to continue.

[whatrdreamsmadeof]

Babette is 100 percent right, just look at these responses, for this topic!

[ozij]

Some people get all cofused and flustered when they have to handly machines - Julie seems to be one of those, you'll notice she doesn't know how to control her answering machine.

That's why I said Julie is rightfull wary of getting into the machine setup on her own.

May I suggest, Julie, that you contact your doctor or DME and ask them the set up your machine so you can keep track of your own data?

Have they refused to do that? Is it your position that you're not supposed to see your data?

O.

[Juliebove]

Some people get all cofused and flustered when they have to handly machines - Julie seems to be one of those, you'll notice she doesn't know how to control her answering machine.

That's why I said Julie is rightfull wary of getting into the machine setup on her own.

May I suggest, Julie, that you contact your doctor or DME and ask them the set up your machine so you can keep track of your own data?

Have they refused to do that? Is it your position that you're not supposed to see your data?

O.

I haven't even been back to the Dr. yet. I don't know exactly what a DME is. If it is what I think it is, I've never been there and don't even know where it is.

I didn't ask about the set up of the machine and frankly don't want to be messing with it.

What I have done so far was have a sleep study. Get a machine from a different sleep lab. Take the card back to that sleep lab and the results were sent to my Dr. I haven't seen the Dr. yet. So it would seem rather foolish of me to start messing with the machine before he has even told me anything.

[ozij]

I'll say it again: Julie, I don't think you should mess with your machine. You really should not make any changes in your machine at all, Julie.

O.

[boston]

seems to me juliebove justs needs to vent, sounds like shes stuck at home, not happy and isnt willing to listen.
she knows what needs done and she wont do it regarding the phone.
its her choice to tweak her therapy, too bad she wont let a few try to help her out.

[grandmma]

Sorry, but I think all but a few of you are being much too harsh here.

IMHO Julie is enabling her husband by her actions, no two ways about it. However, not everyone can be strong and take ownership & make changes even if they know deep down it is the (probably) correct or reasonable course of action. And we should all bear in mind this man does not sound correct or reasonable - after all, we don't have to live with him, (at this stage) she does. Asking for assistance or someone to listen whilst you vent does not mean that you are able to then follow that advice - some don't have it in them.

In all likelihood, one day Julie will turn a corner, will have had enough, and will take action. She should not be crucified for being perhaps less strong or "take charge" than others on this forum.

Same with her therapy - not everyone wants to disregard the doctors and "so called" medical experts, especially someone who is very new to all this. This too will perhaps change, but CPAP wise it is early days for her.

Julie, been there to some extent, done that, survived it, single now, much stronger & loving it. Just know that those offering you advice on this forum have a lot of experience, and only wish you well, although sometimes this does not come across, but rather is masked by harsher language than can be necessary!

[Paul56]

I'm 100% certain we all mean well.

Taking an active role in one's health care just makes sense and most Doctors encourage that; however, there does seem to be some notable excepts in the apnea community where certain folks like to withhold information from the patient... which in my books is wrong.

[Wulfman]

I haven't even been back to the Dr. yet. I don't know exactly what a DME is. If it is what I think it is, I've never been there and don't even know where it is.

I didn't ask about the set up of the machine and frankly don't want to be messing with it.

What I have done so far was have a sleep study. Get a machine from a different sleep lab. Take the card back to that sleep lab and the results were sent to my Dr. I haven't seen the Dr. yet. So it would seem rather foolish of me to start messing with the machine before he has even told me anything.

I agree. Since this is (apparently) a loaner machine to see what pressure you need, it would NOT be advisable to mess with any settings.

By the way, "DME" stands for "Durable Medical Equipment"......either the location/place where it's sold/distributed or a person/employee who works at one of those places.


Den

[Juliebove]

I haven't even been back to the Dr. yet. I don't know exactly what a DME is. If it is what I think it is, I've never been there and don't even know where it is.

I didn't ask about the set up of the machine and frankly don't want to be messing with it.

What I have done so far was have a sleep study. Get a machine from a different sleep lab. Take the card back to that sleep lab and the results were sent to my Dr. I haven't seen the Dr. yet. So it would seem rather foolish of me to start messing with the machine before he has even told me anything.

I agree. Since this is (apparently) a loaner machine to see what pressure you need, it would NOT be advisable to mess with any settings.

By the way, "DME" stands for "Durable Medical Equipment"......either the location/place where it's sold/distributed or a person/employee who works at one of those places.


Den

That's what I thought, but I've yet to go there. The sleep lab had the machine and told me I didn't have to go to the DME for 6 months. Which is why I don't know how they factor into it.

My machine is not a loaner, but is being rented to own. We do not know at this point if the machine is the right one for me.