Some CPAPers stay and some go

[Snorebert]

I was reading a post from Gordyp on a problem with Windows Vista but he started the post with "It's been ages since I've posted, meaning things have been going well." It got me thinking.

I am still struggling with my therapy, look forward to the day that I can truly feel rested and energetic. Thanks to this forum and wonderful members, I have the will to keep trying and the faith that my day will come plus the information that has been withheld from me. So many people have registered with this forum over the years and it seems that most are not very active. It makes me wonder about those that remain active month after month, year after year. Dispensing advice and encouragement to newbies and skewering DMEs that venture on to declare that self-adjustment is a Federal offense. Who are you guys? Is your OSA under control and you are just really nice, helpful people or do you still struggle every night to deal with living with a plastic mask with a hair dryer attached?

I would like to think that some day I will be able to pay it forward for the help that I have received here but it is far more likely that if I ever get this beast under control, I will gradually visit less and less until some day I stop altogether.

I suppose that my question is more rhetorical than practical. But I do want to say thank you to you guys - whoever you are!

-Clark

[Wulfman]

I was reading a post from Gordyp on a problem with Windows Vista but he started the post with "It's been ages since I've posted, meaning things have been going well." It got me thinking.

I am still struggling with my therapy, look forward to the day that I can truly feel rested and energetic. Thanks to this forum and wonderful members, I have the will to keep trying and the faith that my day will come plus the information that has been withheld from me. So many people have registered with this forum over the years and it seems that most are not very active. It makes me wonder about those that remain active month after month, year after year. Dispensing advice and encouragement to newbies and skewering DMEs that venture on to declare that self-adjustment is a Federal offense. Who are you guys? Is your OSA under control and you are just really nice, helpful people or do you still struggle every night to deal with living with a plastic mask with a hair dryer attached?

I would like to think that some day I will be able to pay it forward for the help that I have received here but it is far more likely that if I ever get this beast under control, I will gradually visit less and less until some day I stop altogether.

I suppose that my question is more rhetorical than practical. But I do want to say thank you to you guys - whoever you are!

-Clark

I've often wondered the same thing, Clark.
There were a lot of people whose posts I remember reading when I first started reading the forum......and have wondered what happened to them.

Who are WE? Just some users who have been at this for a little while and who want to see the new users succeed. As far as myself, I've never had any "problems" with my therapy that I needed to ask questions about. Have I had some not-so-perfect nights? Sure. I had some issues with my doctor and the prescribed pressure.....bought my equipment online and got my insurance provider to reimburse me......did lots of reading about this therapy......so, I guess "I did it my way" and it's gone pretty well.

The guest "drive-by sniping" (about the legality of changing pressures) has been going on for about as long as I've been hanging out here. I've come to the conclusion that they're just bored and try to stir up a bunch of responses to their assertions......which seems to work.

For some of us, there's just a lot of satisfaction seeing others get their therapy to work and overcome the glitches that they encounter.

Keep hanging around and "pay it forward".

Den

[jnk]

Here are my personal theories.

I have read some who say, like Wulfman, they are paying it forward out of being thankful for help they've received here. Part of the motivation for some is that they know how little help new ones get from their DMEs. They would feel guilty if they weren't doing something about that, because the medical system is so unfair to some starting off with CPAP. It amazes me how so many here make such a big difference in people's lives, like Wulfman does, and do it with such apparent ease.

Others, I think, are fascinated with the fairly new science of sleep medicine or enjoy the technical aspects of PAP therapy. Just like some people listen to music casually while others become audiophiles, some people make it a hobby to know the complete ins and outs of anything they do.

Others, I think, get caught up in what amazing people are here in this forum. I know personally I can't stay away because I wonder what insights may get posted by the likes of SAG, -SWS, ozij, rested gal, Slinky, et al. Nearly every day, I learn something I didn't know from posters on this board. And that is so even though I read old posts as well as newer ones whenever I get the chance.

Your post makes points and raises questions I wonder about often myself. Any forum on a medical topic is more likely to be found by someone having trouble as opposed to someone not. The ones having no trouble have no reason to go looking for information, I guess.

For example, as a personal anecdote, recently a friend of mine told me he had been diagnosed with OSA and had been given a machine months ago. I found that my first thought was "Oh, no, I wonder if he was titrated well and got a data-capable machine and a good mask, etc." When he saw the look on my face and asked about it (I'm no poker player), I explained my concerns. He and his wife invited me to stop by and look at the machine and mask and make any suggestions I might have. When I stopped by, I was amazed to see that he had a full-data machine and excellent mask, his first, that he was having zero trouble with. When I showed him how to see the efficacy information on the machine's screen, I was further amazed to see how low his leak was and how low his AHI was compared to his diagnosis. He said he was feeling great compared to before, too. He is happy with the machine and had no trouble getting used to it, he said. The DME treated him very well and was giving him great home service. I had no suggestions to give him. It is rare, indeed, when I find myself with nothing to say!

That got me thinking how that people like him are unlikely to ever show up here. For all I know, there could be many thousands of them out there quietly, successfully doing their thing and being treated well by docs and DMEs alike. I think it is important for those who come here to know that they are not alone in having troubles. But it may be just as important for us to realize that there could be many out there who found the whole sleep-medicine system worked for them well, first try, without a hitch.

Nice post, Snorebert.

[sleepycarol]

In 2000 my husband found soberity. He managed to get sober without treatment facilities or the like. What he did find was AA. When he joined AA, I joined Al-Anon (for those that are affected by another one's drinking.) We made it our goal to reach out to as many other suffers as possible. My husband still attends meetings regularly. He says he must give it away to keep it. Unfortunately I am not active in Al-Anon any more (AA meets 2 x a day here, but Al-Anon meets 1 x a week) as I find I need to go to bed early in order to function effectively the next day at work (not as young as I used to be).

I feel that I must do the same with OSA. Without this forum I would have given up on treatment. It is important to help newbies try to get issues figured out so that they can reap the benefits from great therapy. I view this forum like family -- we may not always agree and we may squabble and fight on occassion, but when the chips are down we are there for each other. I do admit I am not as active on this forum as I was once -- but I am helping http://www.sleepguide.com get off the ground. That forum now has in excess of 1000 members and continues to grow daily. I encourage all of you to drop by that forum and see what you think.

[araminta]

That got me thinking how that people like him are unlikely to ever show up here. For all I know, there could be many thousands of them out there quietly, successfully doing their thing and being treated well by docs and DMEs alike. I think it is important for those who come here to know that they are not alone in having troubles. But it may be just as important for us to realize that there could be many out there who found the whole sleep-medicine system worked for them well, first try, without a hitch.

nicely put, jnk.

[Kantou]

I CAN TELL BY ALOT OF THESE POSTS THAT MANY IN HERE ARE TOTALLY CONSUMED WITH WEARING AND USING A CPAP TO THE POINT WHERE IT CONTROLLS THEIR LIVES...MYSELF I WEAR IT I DONT LIKE IT BUT IT DOES HELP ME I COULD GIVE A RATS A$$ ABOUT NUMBERS AND GRAPHS THOSE ARE FOR THE TOTALLY OBSESSED!!!! USE IT DONT USE IT ITS EVERYONES PERSONAL DESICISION I HAVE BEEN ON IT FOR ALMOST A MONTH AND FEEL BETTER BUT WRESTLE WITH IT EVERY NIGHT BUT THATS LIFE....IF YOU DIE IN YOUR SLEEP IT MIGHT BE THE BEST WAY TO GO....SO DO WHAT YOU FEEL YA HAVE TO DO!!!!!!!!

[DaveL]

When I started 9 years ago I became compliant because of help on a sleep newsgroup. If I had left it to my sleep doc and DME I never would have been compliant.

Now I sometimes need help. It isn't easy being compliant. But the benefits are worth it.

Trust you'll get all the coaching you need. And trust I will too!

It's a big cpap world.

[bdp522]

I came here because my MD was no help at all. He actually told me to learn all I needed to know on the internet. I got the help I needed and stayed to continue learning. I'm still learning. For the first 2 years I read every post. I no longer have time for that but I do try to check in daily and answer some of the questions that are asked. I hope that something I post will at some point help someone else.

Brenda

[DoriC]

[quote="jnk"]Here are my personal theories.

That got me thinking how that people like him are unlikely to ever show up here. For all I know, there could be many thousands of them out there quietly, successfully doing their thing and being treated well by docs and DMEs alike. I think it is important for those who come here to know that they are not alone in having troubles. But it may be just as important for us to realize that there could be many out there who found the whole sleep-medicine system worked for them well, first try, without a hitch.

Jnk, by the same token, there are many out there not being successful and not being treated properly and not knowing where to turn and not knowing about cpaptalk. I wonder how many machines are packed away in the closet? As for me, I consider the "old timers" on this forum to be my college course in sleep apnea and they are the reason for my husband's success so far. We were very lucky to have gotten here before we had to interact with the DME so we at least avoided the hassles that other newbies encounter as far as machines, masks, insurance,etc. That was easy. We didn't avoid the problems involved with adjusting to treatment but again the "pros" were here with me very step of the way. It would have been a very different process without them and don't know if we would have continued. Our Internist and Pulmonologist say they now tell their apnea patients about this forum so hello to any of you living in Ocean County NJ.

[jnk]

. . . there are many out there not being successful and not being treated properly and not knowing where to turn and not knowing about cpaptalk. I wonder how many machines are packed away in the closet? . . .

I agree 110%, DoriC.

The drop-out rate is terrible for PAP compliance, and I think much of the blame for that falls squarely on the shoulders of the ones whose job is supposed to be to help people with it.

This board is the best thing I've ever seen for helping people make a success of PAP therapy.

[nancekm]

I can say that I am very computer illiterate, and several times I tried to post and wasnt able to--and I finally gave up. Tonite I finally made a new screen name and hope that it works--so far so good--it is good to be back, this is a very va\lauable forum--I dont have as much time as I used to but I do plan on checking in at least once a day

[-SWS]

I think a few old timers view sleep apnea as a whale of a problem claiming too many lives...

Or perhaps some view apnea as a pod of seemingly tyrant whales: everything from sadly lacking patient and public awareness, to overly-documented insurance and DME woes, to some clinicians still thinking in terms of Pickwickian syndrome (if they happen to think of apnea at all), to science producing a gold-standard of treatment that manages to work for only a minority.

I think there just may be an Ahab hiding somewhere in the subconscious of many of us old timers---a faint subconscious Ahab who can't walk away from the tyrant whale-of-a-problem that apnea is. I am sorry to say the tyrant beast has claimed the health, spirit, and life of too many of my personal friends and family members.

Harpoons fully loaded if you care about our villages and children. We can't hunt and subdue the deadly beast soon enough. Spread the word among all the villages to join in arms. Get the word out loud and strong...

[Fredman]

Some of us lurk in the shadows adding a bit here and there. I do want to reinforce the comment about the fact that we have some great folks here that I just love reading their posts for their knowledge, passion, wit, and yes sometimes sarcasm!

I know I have been flamed here on occasion, but upon reflection sometimes needed to be! And sometimes we argue, but at the end of the day people move on. Perhaps some of us have been blocked as a "foe" so our posts aren't seen. We even had one member drop out for awhile because her feelings and confidence had been knocked for her opinions - she came back stronger and now not concerned if someone flames her.

So I am more concerned about those that don't find us, whether or not they "obsessed with numbers".

[SharkBait]

I CAN TELL BY ALOT OF THESE POSTS THAT MANY IN HERE ARE TOTALLY CONSUMED WITH WEARING AND USING A CPAP TO THE POINT WHERE IT CONTROLLS THEIR LIVES...MYSELF I WEAR IT I DONT LIKE IT BUT IT DOES HELP ME I COULD GIVE A RATS A$$ ABOUT NUMBERS AND GRAPHS THOSE ARE FOR THE TOTALLY OBSESSED!!!! USE IT DONT USE IT ITS EVERYONES PERSONAL DESICISION I HAVE BEEN ON IT FOR ALMOST A MONTH AND FEEL BETTER BUT WRESTLE WITH IT EVERY NIGHT BUT THATS LIFE....IF YOU DIE IN YOUR SLEEP IT MIGHT BE THE BEST WAY TO GO....SO DO WHAT YOU FEEL YA HAVE TO DO!!!!!!!!

I'm sure you would classify me as consumed and obsessed if you've paid attention to my posting... I actually enjoy seeing how folks are doing and if I can help a little bit, then I want to. Ultimately it's up to the individual but I like to try to help.

Numbers and graphs? I'm that kind of person. When I finished my sleep study, I got on the search engines and started searching for info. I was actually expecting a bunch of dry papers on OSA and cpap, and ran into this site. When I saw that I could get data and actually see a cause and effect on various aspects of cpap, I jumped on it. That's how I roll. I guess in your mind (since analysis isn't your bag) that makes me obsessed. So be it...

[ww]

Simply realizing how many people get a prescription, machine, mask and wear it faithfully every night as their body continues to deteriorate, they feel they are getting old and falling apart. Their DME can't help and their Sleep doctor didn't even get them a data capable machine, so he has no idea that they are not getting better. So SAD, but unfortunately true.

I am a moderator at other sites, and am an Engineer by degree, but simply enjoy helping those that want help. I will never forget all the discussions with SnoreDog and others who are no longer with us on the technical aspects of why our therapy works or does not work. This information should be conveyed by DME's as a matter of due course, but it is NOT.

Many of those that helped me, are still very active posters in these threads on a Daily basis, and their help was and is much appreciated.

I have been compliant for my entire first year, but without this forum, my therapy would have been almost totally ineffective! I believe this is true for many others. Yes, I go away for awhile, because things are going well and most of us really have a life to attend to and feeling better makes it easier to attend to those things that we need to attend to daily, but we come back to see how things are going here at cpaptalk.com.

Another in law never got much help from his doctor for his sleep apnea and has continued to have many problems where my young daughter in law just went for here sleep study tonight. She is bright, and understands that treatment is a good option. That makes it all worthwhile.