Surgery?

[Juliebove]

I don't have any compliance data to show.

Open lid on your machine.
Push the < (left arrow) button. Summary Data will show up. Therapy hours is part of the data shown.
How many total hours of therapy?

I won't mess with the arrows. Sorry. I can tend to screw things up quite easily, therefore I just won't do it.

If you "just won't" follow any of the wonderful advice you've been given, why in the world do you keep posting, asking for more advice? It seems you just want to play "Ain't it awful" or some such game.

I didn't ask for advice. My question was... Wouldn't the Dr. be able to tell if the machine is working or not? Why does he seem to be leaving it up to me?

[twokatmew]

Shouldn't the Dr. be able to tell if the machine is doing me any good or not? I would think so.

If you don't know how you feel, how is the doc supposed to? You complain the doc didn't have anyone read the smartcard. If you haven't been using the machine, there's nothing to read.... One night here and there means nothing. Or why didn't you take the initiative to have the card read if you think that's so important?

But he seems to be basing everything on how I say that I feel.

Of course! First we have to assess how we feel. The numbers are there for use in tweaking therapy. But if you won't even press an arrow button, you're expecting the doc -- and us -- to be mind readers. We are not. This is your therapy. Make it work, or give up on it. If you're unwilling to press an arrow button, it sounds like you've already made your decision. (Frankly you risk doing more damage by pushing buttons or turning knobs on your stove. Do you refuse to cook too?)

But as he says, I do have a lot of other medical conditions here that complicate things. So once again, I feel like I am just being passed off to yet another Dr.

Any doc is going to get tired and feel exasperated by patients who do nothing but complain and refuse to be compliant. You're not even attempting to come up with your own ideas, yet you find fault with every idea that's presented to you. How is anyone supposed to help if you won't help yourself?

I see so many specialists for so many things and this just seems to be the pattern. I have yet to be able to find any one Dr. who can address all of my medical problems.

Me too. ... And there is no one doctor who can take care of all your ailments. You need a good PCP to coordinate the care you receive from all your specialists. And you must take the initiative to make sure this happens. If not, you must coordinate your care yourself. I see a gastroenterologist, a rheumatologist, a GYN/surgeon, an ENT, a pulmonologist and sleep doc -- in addition to my PCP. It took me a long time to find a good PCP who was up to the task of coordinating my care, and we make a good team. I'm fortunate to have found her. But I still have to maintain an active role in my health care. It doesn't just happen by accident.

When I was a kid, I thought grape Novahistine cured everything. It seems to me you're looking for a magic pill. Well, there isn't one.

You have a top-of-the-line machine there. Use it or not. Using it consistently just might help you feel better enough that you can muster more strength to deal with your other health conditions. It's up to you.

[mars]

I don't have any compliance data to show.

Open lid on your machine.
Push the < (left arrow) button. Summary Data will show up. Therapy hours is part of the data shown.
How many total hours of therapy?

I won't mess with the arrows. Sorry. I can tend to screw things up quite easily, therefore I just won't do it.

If you "just won't" follow any of the wonderful advice you've been given, why in the world do you keep posting, asking for more advice? It seems you just want to play "Ain't it awful" or some such game.

I didn't ask for advice. My question was... Wouldn't the Dr. be able to tell if the machine is working or not? Why does he seem to be leaving it up to me?

---------------------------------------------------------------------------------------------------------------------------------------

Note well - this is a question that is impossible for Forum members to answer!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Hi All

I had resolved never to get involved in one of these threads, but I now find that my will-power is gone, and my good intentions have been dissipated. So now I am going to post to this thread, and we will see what comes out.

First of all, I think that all the posters who continually try to help Julie, are simply giving her the opportunity to tell them they are wrong or why she cannot follow their suggestions, and that is just what Julie is after. And if she cannot refute the suggestion, she will ignore it, but she just loves knocking the suggestions back.

Obviously Julie has some serious problems which make her life difficult, and over which she appears to have very little control. And Julie does not like this.

So the question for Julie is - "how do I get some power and control in my life under these circumstances".

The answer for Julie is that "I refuse to do what the Doctors say, and I refuse to do what these clever people of Cpaptalk say, and that makes me strong and powerful. I'll show these people in authority."

But this only works in the short-term.

In the long-term her physical problems do not get seen to, and her emotional problems (including denial of her emotional problems) do not get addressed.

As soon as people get fed up with posting to her thread, she starts another one, and off we go round in circles again. What we are doing is called enabling, allowing Julie's problems to continue. In the short-term it helps her to feel good, in the long-term, well, put your own ending on it.

So Julie has answered her question, and is doing very well at it. Julie is no fool!

Now we have to answer our question - do we continue to enable her, and allow her problems to continue, or do we stop enabling her, and alow her to suffer enough pain to get through the denial and genuinely seek help.

The answer to that is going to be up to us.

And I certainly wish Julie the very best.
And I have infinite admiration for those who have tried to help her, despite repeated knock-backs.

cheers

Mars

PS 13th August 2009 - It appears this thread is now dying. Julie may well have cried Wolf too often on this Forum. I hope these final posts that follow this one have broken through. We will see.

[Pugsy]

Pugsy wrote:
Open lid on your machine.
Push the < (left arrow) button. Summary Data will show up. Therapy hours is part of the data shown.
How many total hours of therapy?

I won't mess with the arrows. Sorry. I can tend to screw things up quite easily, therefore I just won't do it.

There is nothing to screw up. One button to push....

Why does your response not surprise me? There are no crystal balls to magically show if the therapy is working or not. Your doctor doesn't have one, nor should he. He gave up on you because you gave up on yourself.
You cannot show that you even used the machine to even give it a chance. You are unwilling to even try to actually see how few hours you actually have used it..

I was so hoping you would prove me wrong and take a smidgen of responsibility for your own therapy and actually try something that is so simple my 7 year old grandson could do it.

[Muse-Inc]

Julie, no one can improve your life or make you feel better...it's all up to you, there's no magic that's going to change things. If you don't like your life right now with all its medical issues, understand that it isn't going to get any better until you start taking responsibility for your life and medical treatment...going to a doctor and expecting him to fix you isn't going to happen. I suggest you start educating yourself because no one else can fix what really needs changing first which is inside yourself: your attitude that someone or something outside youself will fix things. It takes courage to face life's challenges; it's easy to just be contrary and whine that no one can fix your problems, Julie no one can fix your problems...you must fix them. There's no pill that cures apnea, it's not a disease; surgery has a very low rate of success and most who've undergone the ultimate challenge of cutting off major sections of their airway tissue end up with apnea anyway and are often end up not good candidates for CPAP therapy.

We've all given you suggestions, every one of which you have objected to. You complain about your doctor yet admit to us NOT HIM that you have no idea how compliant you've been using CPAP...how can it work or even be evaluated if you won't use it? None of the effects of apnea disappear, they just get worse over time.

Good luck in finding some answers.

[Juliebove]

Shouldn't the Dr. be able to tell if the machine is doing me any good or not? I would think so.

If you don't know how you feel, how is the doc supposed to? You complain the doc didn't have anyone read the smartcard. If you haven't been using the machine, there's nothing to read.... One night here and there means nothing. Or why didn't you take the initiative to have the card read if you think that's so important?

But he seems to be basing everything on how I say that I feel.

Of course! First we have to assess how we feel. The numbers are there for use in tweaking therapy. But if you won't even press an arrow button, you're expecting the doc -- and us -- to be mind readers. We are not. This is your therapy. Make it work, or give up on it. If you're unwilling to press an arrow button, it sounds like you've already made your decision. (Frankly you risk doing more damage by pushing buttons or turning knobs on your stove. Do you refuse to cook too?)

But as he says, I do have a lot of other medical conditions here that complicate things. So once again, I feel like I am just being passed off to yet another Dr.

Any doc is going to get tired and feel exasperated by patients who do nothing but complain and refuse to be compliant. You're not even attempting to come up with your own ideas, yet you find fault with every idea that's presented to you. How is anyone supposed to help if you won't help yourself?

I see so many specialists for so many things and this just seems to be the pattern. I have yet to be able to find any one Dr. who can address all of my medical problems.

Me too. ... And there is no one doctor who can take care of all your ailments. You need a good PCP to coordinate the care you receive from all your specialists. And you must take the initiative to make sure this happens. If not, you must coordinate your care yourself. I see a gastroenterologist, a rheumatologist, a GYN/surgeon, an ENT, a pulmonologist and sleep doc -- in addition to my PCP. It took me a long time to find a good PCP who was up to the task of coordinating my care, and we make a good team. I'm fortunate to have found her. But I still have to maintain an active role in my health care. It doesn't just happen by accident.

When I was a kid, I thought grape Novahistine cured everything. It seems to me you're looking for a magic pill. Well, there isn't one.

You have a top-of-the-line machine there. Use it or not. Using it consistently just might help you feel better enough that you can muster more strength to deal with your other health conditions. It's up to you.

I was not using the machine one night here and there. I quit using it when it was hot, and he said everyone he saw said the same thing. So it wasn't just me!

I didn't complain and I wasn't non-compliant!

As for how I feel, it's either no different or worse.

As for pressing an arrow, if the Dr. told me to do it, I would. He didn't.

[Juliebove]

Pugsy wrote:
Open lid on your machine.
Push the < (left arrow) button. Summary Data will show up. Therapy hours is part of the data shown.
How many total hours of therapy?

I won't mess with the arrows. Sorry. I can tend to screw things up quite easily, therefore I just won't do it.

There is nothing to screw up. One button to push....

Why does your response not surprise me? There are no crystal balls to magically show if the therapy is working or not. Your doctor doesn't have one, nor should he. He gave up on you because you gave up on yourself.
You cannot show that you even used the machine to even give it a chance. You are unwilling to even try to actually see how few hours you actually have used it..

I was so hoping you would prove me wrong and take a smidgen of responsibility for your own therapy and actually try something that is so simple my 7 year old grandson could do it.

Doesn't the card show if I have used the machine or not? If not, then what purpose is it?

[Pugsy]

Doesn't the card show if I have used the machine or not? If not, then what purpose is it?

Yes the card will show data but with special software. DME would likely have what is needed to read it.

But most likely they wouldn't use the card because all they want is hours of use and they would over to the machine and do exactly what I suggested you do to get the information off the screen. Nothing is changed in the area, it is viewing only. There is absolutely nothing to screw up. One button to push.

[Juliebove]

Doesn't the card show if I have used the machine or not? If not, then what purpose is it?

Yes the card will show data but with special software. DME would likely have what is needed to read it.

But most likely they wouldn't use the card because all they want is hours of use and they would over to the machine and do exactly what I suggested you do to get the information off the screen. Nothing is changed in the area, it is viewing only. There is absolutely nothing to screw up. One button to push.

The only experience I have with the DME is over the phone. I got an automated call asking me what (if any) parts I wanted replaced because it was time and my insurance would cover them. I did have to call them on the phone because they didn't send all that I requested.

Apparently the way my appointments go are not the way the rest of you have experienced. The first time, I had to take my card in to a sleep lab (not the one where I had my sleep study done). The man there is the one who gave me my machine and showed me how to use it. The lab is not my DME. He gave me paperwork showing who my DME was. He read the card and sent the results off to the sleep Dr. I had assumed this last appointment would be the same, but it wasn't. I merely went in to the sleep Dr. and he asked me how I had been feeling.

I know I was not alone in not using the machine during the hot weather. The Dr. told me he was hearing a lot of that. My dad said he was unable to use his machine as well. My brother has AC and he didn't feel the heat.

I just don't see what good it will do me to push a button. Since the Dr. told me to quit using the machine, I did. So it's going to show that I didn't use it.

[ozij]

I didn't ask for advice. My question was... Wouldn't the Dr. be able to tell if the machine is working or not? Why does he seem to be leaving it up to me?

Also, the reason that led to my getting the machine was loss of memory.

CPAP machines can't record memory data. Only breathing data.

O.

[Pugsy]

I just don't see what good it will do me to push a button. Since the Dr. told me to quit using the machine, I did. So it's going to show that I didn't use it.

Pushing that little button would mean that you actually took an interest in how many hours you really had on the machine instead of making excuses why you weren't. You come here asking for ideas and shoot down every idea that is offered. If you are wanting a pity party, you won't find many takers here. Everyone that has offered you ideas has had their own ups and downs with this therapy. No, this stuff is not easy but it is not impossible either.

When I joined this forum I read everyone of your posts. Even as a complete newbie I felt you were going down the wrong path. I was so hoping I had been wrong.

So now your doctor told you what you really wanted to hear and you can blame him for quitting.

I would go to the ends of the earth to try to help someone that was actually trying. You want someone to hand you this therapy on a silver platter and expect good results without making the least little effort to see to learn what your own data shows. You have a data capable machine, a great machine. You want someone to tell you every step of the way what to do but then won't do it. You refuse to try to learn how to manage things. Don't give me any excuses as to your mind either. You are coherent enough to make it to the internet and compose excuses. You could manage to ask the DME or whoever to give you copies of your data so you could see why you feel like things aren't working.

I don't go to pity parties and I won't waste my time on someone who doesn't really want help. I wish you the best of luck in your life.

[Ruby Vee]

I just don't see what good it will do me to push a button. Since the Dr. told me to quit using the machine, I did. So it's going to show that I didn't use it.

Pushing that little button would mean that you actually took an interest in how many hours you really had on the machine instead of making excuses why you weren't. You come here asking for ideas and shoot down every idea that is offered. If you are wanting a pity party, you won't find many takers here. Everyone that has offered you ideas has had their own ups and downs with this therapy. No, this stuff is not easy but it is not impossible either.

When I joined this forum I read everyone of your posts. Even as a complete newbie I felt you were going down the wrong path. I was so hoping I had been wrong.

So now your doctor told you what you really wanted to hear and you can blame him for quitting.

I would go to the ends of the earth to try to help someone that was actually trying. You want someone to hand you this therapy on a silver platter and expect good results without making the least little effort to see to learn what your own data shows. You have a data capable machine, a great machine. You want someone to tell you every step of the way what to do but then won't do it. You refuse to try to learn how to manage things. Don't give me any excuses as to your mind either. You are coherent enough to make it to the internet and compose excuses. You could manage to ask the DME or whoever to give you copies of your data so you could see why you feel like things aren't working.

I don't go to pity parties and I won't waste my time on someone who doesn't really want help. I wish you the best of luck in your life.

AMEN!

[robertmarilyn]

We are so lucky to have this forum and the wealth of experience and advice and archives that enable us to learn and research and experiment to find what will work for each of us in our particular situations.

Julie, I think you wore this particular doctor out.

Hey Ozij! Nice to see you.

mar

[ozij]

I also felt so very fortunate to discover this forum and all the knowlege (and helpfulness) I found in it, mar; Good to see you too!

O.

[jules]

If you want to take control of your therapy or even looking for ideas to bounce off your DME or doctors this is the place to find them.

However, if you want to not want to even being halfway involved in your treatment, or just want to whine, there are other forums online to go to. I would again suggest sleepapnea.org.