POLL: Why are you here?

chunkyfrog · Post by **chunkyfrog** » Sat Jan 29, 2011 5:24 pm

I needed to learn--and then learning a little; I wanted more, and more still.
It has gone out of control! Help me.

kempo · Post by **kempo** » Sat Jan 29, 2011 6:00 pm

I have only talked to my sleep Doc twice. Once on the phone for maybe 3 minutes and once in person for maybe 5 minutes. I figure that cost me and my insurance around $100 a minute. Just a small part of my DME's business is xpap machines so they are really not that helpful.

I have come to the conclusion that this place is more informative and cost effective than the sleep Doc and the DME.

JayC · Post by **JayC** » Sat Jan 29, 2011 9:30 pm

I first discovered this site by a search after I had a sleep study, a diagnosis, and an in-home appointment scheduled for delivery of Sleep Doc specified machine and suggested mask. I read up and was able to properly set the time/date/mask setting on my machine which had NOT been properly set by the DME. (Wouldn't it have been better to have an actual checklist so he (RT) could have ensured he covered everything even though he was having a hectic day?!?!?!?!?!?!?)

In those early days and months I got the help and background info I needed to take ownership of my therapy. I have a great sleep doc, who I see every 6 months at this point (although no changes have been needed in over a year, so that may change for purely financial reasons.....I really love seeing the doc because he is so validating, and supportive.....just not much for him to do other than track what is going on....)

I don't post much these days, and mostly monitor some topics rather than read everything........too much to accomplish with my increased (and increasing!) focus and energy!! Still applying what I have learned here, so I still make the time to scan what is going on here.......just not as direly as in the early days.

Still have ownership and knowledge about my therapy...and my doc appreciates my involvement and listens to my concerns.

Warm regards to all,
J

Big S · Post by **Big S** » Sat Jan 29, 2011 11:38 pm

I'm here because it is easliy my second family! Thanks everyone!

sleepyb · Post by **sleepyb** » Sun Jan 30, 2011 12:51 am

My sleep study was four hours of the best sleep I had had in years. I was actually awake. This was great! The wait was terrible although short. Then I got my CPAP machine. I was so excited to have another night like that first. It didn't happen. I had a mask blowing air in my eyes, I couldn't breath during the start of the ramp which the DME had set to 4. I changed masks and went from bad to worse. I read all I could on the net about OSA. Talked with DME (Mr. Lie) Tried everything but with no data I had no idea what was wrong. Then I ran across this site and read and read. So much information. I went to Mr. Lie with information and started the fight which finally ended up with me finding a better DME and getting a good machine and a good mask. Without all the help and information on this site I would be stuck with dumb machine wondering why I was still suffering.
I enjoy reading the post from all of you that figured it out and those who still struggle. It gives me encouragement that I can do this and I'm not alone, and sometimes even contribute a little.
Im very much of a gadget person so all the information on this or that new thing to try to make things better or more comfortable is great I might be stuck with this thing but that doesn't mean that I can't have some fun with it.

bdp522 · Post by **bdp522** » Sun Jan 30, 2011 6:22 am

I have never seen a sleep doc. My GP is the only doctor involved with my treatment. When I was first diagnosed he told me to look it up on the internet because he didn't know alot about sleep apnea. Lucky for me I found Cpaptalk! This site was a godsend for me. I keep coming back to learn more and to help others when I can.
Brenda

Slinky · Post by **Slinky** » Sun Jan 30, 2011 7:39 am

Oooooh!!! You have one savvy GP who respects your intelligence! Now YOU can educate your GP by occasionally providing your downloaded data printouts. What a blessing for his other patients who may have or have OSA!!

Bones · Post by **Bones** » Sun Jan 30, 2011 10:31 am

Well I voted that I'm a troll and that I like to irritate people. I rarely post anymore, so of course neither is true, but it was fun to tick those boxes. Due to a tragi-comedy of errors and a very caring but unknowledgeable RT my first year of cpap was a living hell. I came to this site and read for several months before actually becoming a member. Thanks to folks that are still here and some who have moved on, I was able to piece together enough information to at first make my therapy somewhat comfortable, and then to make it really work. I don't post much because I simply don't feel I have anything to add to the wealth of information that is here, but I still enjoy reading here sometimes. I guess I'm here at the moment to say thanks.

Brian

freshair · Post by **freshair** » Mon Jan 31, 2011 7:35 am

I am here because its cold, cold and snowy at home, Florida Gulf coast is nice this time of year, that is why am here !

jromano · Post by **jromano** » Mon Jan 31, 2011 7:52 am

Receive and provide advice, support, and encouragement
Give all that you can, take only what you need.

Solve problems
...that can seem so much more manageable with the support of your community.

Research OSA and sleep disordered breathing in general
Stop learning? Nah.

Other...
To believe in the power of the individual, humor, and good 'ole perseverance.

Cheers,
Jess

turbosnore · Post by **turbosnore** » Mon Jan 31, 2011 8:38 am

I also try to pass info from here to a Finnish C-PAP-website and vice versa.
Not all of the finns speaks english. Especially the older ones.

I've also pointed this site to the people in the finnish site that can speak finnish.

jnk · Post by **jnk** » Mon Jan 31, 2011 9:37 am

Re: POLL: Why are you here?

This poll reminds me of the classic "Peanuts" cartoon strip:

Lucy: "Why do you think we're put here on earth Charlie Brown?"

Charlie Brown: "To make others happy."

Lucy: "I don't think I'm making anyone very happy. Of course nobody's making me very happy either. SOMEBODY'S NOT DOING HIS JOB!"

Then the follow-up to that one:

charliemack · Post by **charliemack** » Mon Jan 31, 2011 10:14 am

Because my sleep doctor and her support staff (that I have to use because of where I live) have not shown the ability to analyze my sleep data. Twice she has made wrong decisions on my settings and now (after 3 years) I have to go back to square one and start tweeking my machine to get my readings back to where they were after the sleep study.

robysue · Post by **robysue** » Mon Jan 31, 2011 4:39 pm

cpaptalk:

has been the replacement for the non-existent the patient support group my sleep doctor's office says to "ask about" in their patient literature

provides an alternative to ranting and screaming at my husband (at least some of the time)

gives me a place to reflect on my journey into this bizarre new world filled occupied by Kaa (at home) and many new friends and colleagues here in the ethernet

has given me plenty of tips and advice, much of which is useful and all of which (except that offered by Calist) is offered in good faith

and provides me with an opportunity to give back to others in many ways---particularly those who are struggling with the meaning of the numbers that now seem to dominate their lives at times..

chunkyfrog · Post by **chunkyfrog** » Mon Jan 31, 2011 4:59 pm

I checked the box next to Sleep professionals are not helpful; etc.;
but were I to elaborate, I would say that of my first DME--a world class crook.
The second DME is (so far) somewhat better; also a local outfit, not a chain.
My sleep doctor is used to patients who neither want nor could deal with data; or at least thinks they are that way;
but seems genuinely pleased with patients who bring in printouts and can adjust their own machines.
We plan to educate him even more for our benefit as well as other patients.

Machine	Mask

Mask