Some CPAPers stay and some go

kteague · Post by **kteague** » Fri Mar 27, 2009 9:48 pm

My road to here was similar to so many others - by detour when I hit a dead end on the main cpap highway. And I mean that literally, because I think I had one foot in the grave and the only reason the other hadn't followed was because it took too much effort to move it. Finding this community happened to coincide with the loss or reduction of other communities in my life, as in work, church, and social circles. When I could do little more than sit in a chair, I found people here who encouraged me to find the strength to do those things that would pull both feet back from the end's edge. They hand-held me thru mask and machine woes and many long sleepless nights. They fed me knowledge, which is power - over and over because I couldn't retain much in my state of mind.

Why have I stayed... Because there's always something new to learn on here? Because I've developed relationships? Because here I still have something to offer the world, even if it is just a hand to hold? Because I have some paying back and paying forward to do? Because I'm just so daggone grateful? Yeah, all that and more. I would imagine those who have regained their lives with cpap treatment and have busy active lives might have less time for hanging out here (as it should be). My other health issues make me still have plenty time to visit here, just not til 3, 4 and 5am any longer.

My appreciation goes to those whose time here is sacrificial.

Kathy

KSMike · Post by **KSMike** » Fri Mar 27, 2009 10:07 pm

I come here and read, read, read. I'm coming up on 2 months of therapy and have struggled a LOT and still am just not at a point where I feel qualified to dispense advice. I've been helped more than I can say by the great people here, and would love to help pay it forward... if I can ever get to that point where I feel I'm not doing more harm than good.

I sleep full-time the whole night on it and have since night #1, but still fight leaks, have questions about equipment, data interpretation, etc. So I'm still following along the curve...

tooly125 · Post by **tooly125** » Fri Mar 27, 2009 10:26 pm

kteague wrote: I would imagine those who have regained their lives with cpap treatment and have busy active lives might have less time for hanging out here (as it should be). My other health issues make me still have plenty time to visit here, just not til 3, 4 and 5am any longer.

I coulden't have said it better myself Kathy!
I don't post very often anymore, usually only if I see a post that has not recived an answer and that I can help out with but on this forum those are pretty rare.
I still stop in a few times a week to "lurke" but as Kathy pointed out with the extra energy I gained from having sucessfull treatment I have been able to take on extra activitys and have less time to use my computer.
I am extreamly greatfull to those that helped me get in the sucessfull treatment catagory and to those who kept me company at 3 in the morning when I was having problems sleeping.I got some good recipies in the chat room in the middle of the night

Gerard

sss.guide · Post by **sss.guide** » Sat Mar 28, 2009 2:58 am

CPAP machine can help you with that problem...When you use CPAP, your bed partner may sleep better, too.

______________________________________________
Click here to treat sleep apnea in Toronto and get your CPAP mask in Toronto.

StillAnotherGuest · Post by **StillAnotherGuest** » Sat Mar 28, 2009 4:54 am

kteague wrote: I would imagine those who have regained their lives with cpap treatment and have busy active lives might have less time for hanging out here (as it should be).

As well as the "seasonal effect". The more temperate weather signals the end of the winter "Hot Stove Sessions", and not to forget the NCAA Basketball Tournament (which, as of this writing, is still LOADED with Big East Teams), spring football (a Heisman repeater?) and "America's Favorite Pastime" (and this year they better remember that the season is still going on in September).

SAG

cflame1 · Post by **cflame1** » Sat Mar 28, 2009 5:41 am

I wander in an out... sometimes just reading... sometimes contributing. Usually is better things to do in life than to sit on my computer.

kebsa · Post by **kebsa** » Sat Mar 28, 2009 7:10 am

i have been a strong believer in this sort of support forum, i have a number of serious permanent health conditions/disabilities and coming from a nursing background i have seen all the evidence of the benefits of patients taken an active part in their treatment and that includes knowing what sort of figures we are getting from the machine- i certainly do not see it as being obsessed- there is no earthly point in putting on a mask and switching on the machine and not monitoring whether or not the therapy is working- i also have diabetes and as such i need to check my blood sugar levels at least 4 times per day - i believe our particiaption in out treatment of sleep apnea is the same kind of thing and i am not prepared to just assume that everything is ok. i have know diabetics who have not monitored there conditions properly and they are the ones who end up with leg ulcers that won't heal or heart disease- in effectiv care of sleep apnea would be just as a dangerous to long term care and if we can't take care of our own health conditions we cannot expect medical staff to care more for us than we do for ourselves- now that i have got that off my chest!

these support forums are such a valuable mechanism to pass on the knowledge and the confidence to others who follow behind us- being told that you have a serious medical condition can be alarming and seeing how life goes on is so important- a fair percentage of us would have other health issues besides just sleep apnea so seeing how to mamage this is important and once against peer to peer support is the most valuable- yes there will be a certain perscentage of people who once they are comfortable with therei own health, no longer use the message boards but for every one of them there will be another who is happy to share what they have learnt- ideas and treatments do change over time too so keeping incontact with these forums is a good way of staying up to date too. i keep in contact with a variety of forums, i have had a lot of support from an MS forum, and a couple of others and they provide invaluable support and hopefully sometimes i can help a newbie

-SWS · Post by **-SWS** » Sat Mar 28, 2009 7:20 am

StillAnotherGuest wrote:
kteague wrote: I would imagine those who have regained their lives with cpap treatment and have busy active lives might have less time for hanging out here (as it should be).
As well as the "seasonal effect". The more temperate weather signals the end of the winter "Hot Stove Sessions"

So well put, SAG. And boy are those shut-in "Hot Stove Sessions" darn nice fireside chats. Much appreciated.

SharkBait · Post by **SharkBait** » Sat Mar 28, 2009 7:26 am

StillAnotherGuest wrote:
kteague wrote: I would imagine those who have regained their lives with cpap treatment and have busy active lives might have less time for hanging out here (as it should be).
As well as the "seasonal effect". The more temperate weather signals the end of the winter "Hot Stove Sessions", and not to forget the NCAA Basketball Tournament (which, as of this writing, is still LOADED with Big East Teams), spring football (a Heisman repeater?) and "America's Favorite Pastime" (and this year they better remember that the season is still going on in September).

SAG

I remember last year when all 4 #1 seeds made it to the final four thinking I had never seen that before and probably never would again. It will be a long shot to happen again this year, but it's certainly a possibility...

kteague · Post by **kteague** » Sat Mar 28, 2009 9:33 am

Tooly, I have missed you! Sometimes when people post about their high pressure problems, I think of you. Good to hear you are stopping in now and then, and I'm glad that you have the energy to have an active life outside of here. I miss your avatar of you and Maggie (do I have that right?). By the way, I made a meatloaf last week - it's still as good as when we talked about it back in 2006.

Your unexpected post shows that some of those we think are gone have not gone too far.

Kathy

carbonman · Post by **carbonman** » Sat Mar 28, 2009 9:39 am

Why do I keep coming back??

I don't feel like I'm educated/experienced enough to give people technical
advise about their therapy. There are many here that are far better at that
than I will ever be.

I, sometimes, can't open another thread from a brain fried newbie,
that is being fleeced by another DME. I just get too upset.
I have become a militant cpap'er....not the best avenue for helpful suggestions.
There doesn't seem to be anything I can do about that.
There are plenty of people here that have the patience to guide
the newbies through that maze.

I sometimes feel that people that are struggling w/their therapy,
really don't want to hear about my success and the epiphanies
that cpap have brought me.
Is it that they don't believe that such things are possible or
that I'm just a large crock of the familiar brown substance...??
I don't know.

Like Kathy, I'm always looking for another little trick....
anything that might help me be even more successful.
I want to hear another success story, another ingenious fix,
hoping to hear another "I resisted the BORG" and won, story.

I guess I keep coming back because this forum literally
helped give me my life back.

My graditude for that can never be repaid......
but I'll keep hanging around.....trying.

DoriC · Post by **DoriC** » Sat Mar 28, 2009 9:46 am

It's so nice to see old friends get together again, makes me smile. I guess you could say I'm obsessed with this topic, especially since I'm the caretaker for my husband's therapy and feel so much love and responsibility for his health and progress. I'm trying to learn as much as I can so perhaps I can shift more of the daily/nightly routine over to him. He wants so much to do that but he doesn't get it all just yet. My goal is to only browze here 1-2x week, help if I can and only download reports 1x/wk. So far I'm here several times a day and download daily reports first thing in the morning. Oh well!

5aces · Post by **5aces** » Sat Mar 28, 2009 11:56 am

A captain always barks at you, ordering you but he is just saying it for your own good, right?

Thoughts and words initiate action.Teaching others IS work!

What is the end result of this teaching? MANY people get things working. Sounds like a good outcome to me.

This could really go either way...I know some people who talk a good game but never come through...

Then again there's a lot of people I admire who work, share their knowledge out of enthusiasm as they acquire it and proceed to fulfill their goal.

Trying to become part of the latter group,on the way to my personal goal of reducing or even eliminating the need for my CPAP.

One day,I too will sail thankfully off into the sunset,grateful to all who have taught me along the way...

Wulfman · Post by **Wulfman** » Sat Mar 28, 2009 1:32 pm

Kantou wrote: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!!!!!!!!

You might also consider that some of the "totally consumed" or "totally obsessed" folks here are also acquiring experience and information so that we can try to answer questions from the new users. Some have experience with machines, some with masks, some with software and others with the variety of questions that get asked.

viewtopic.php?f=1&t=39282&p=343528#p343528

A snip from your first post....

Kantou wrote:.......any support or advice I sure could use.....thanks

Den

birdshell · Post by **birdshell** » Sat Mar 28, 2009 2:20 pm

tooly125 wrote: I am extreamly greatfull to those that helped me get in the sucessfull treatment catagory and to those who kept me company at 3 in the morning when I was having problems sleeping.I got some good recipies in the chat room in the middle of the night

Gerard

TOOLY!!! Good to see you, and how is your milkshake drinking son? And, your sweet wife? And, your job! Stop by chat sometime, won't you please? (We also need an update on Maggie!)

The proceeding is just one example of why I keep coming. Tooly, kteague and I (and some others) were all starting out about the same time and supporting each other on chat and the forum.

As a former teacher, I know that I love to learn. I always seem to learn something here, generally when someone else has asked a GREAT question. I also learn in chat when a new person comes back to report on progress, or another person has some great ideas to share. I am just starting to understand data now that I have my data-capable machine.

I also know that if one really would like to know something well, one teaches it. It requires the processing of the information totally, from input to output...and making it understandable and sensical is one way to do so.

I do not read every post any longer, as I first did. You are getting there, Brenda, by picking and choosing the ones we need to read. If I miss something important, then someone on chat will hopefully bring it up and cite the url to me.

I know my own posts the best, so when I see an issue, I contribute what I know as a reference. It may not always be the best answer, but at least it is an answer. I hope it helps, as at least it is a connection to a thread on the same topic. It is just easier to sometimes cite a former posting than to type it all out again, or to search for a new one. This is one way I have learned to keep contributing with a minimal amount of time spent. (See? I stole that idea from Rested Gal...)

I have made real-life friends here. I have made virtual friends here, as well as respected acquaintances. I know that there are people who are caring and knowledgeable here as well as those who are less so. It is all good, because we forge a reality that allows us to examine our treatment, receive suggestions and decide which ones suit us. Sometimes we try things that we never thought we would; but now, they are a part of our (pantyhose and tights straps) lives that we would not give up.

It is the results that make us come back, IMHO. All of these reasons and more are giving us hope. If my treatment has improved so much, can it really be impossible to believe that there may be an even BETTER way? We cannot find out if we do not come.

All the rest is simply side benefits!

Karen,
Who saw Liam come to chat for some advice this week, so maybe there is hope of seeing Gerard sometime

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