Diagnosed

Swordz · Post by **Swordz** » Mon Dec 05, 2005 4:48 pm

I think people need to realize that advice given on here is just that, advice. We are not doctors, but are a ingenious, dedicated, usually self-taught, and highly motivated group that researches all sides and angles concerning our disorders (OSA,insomnia, etc).

People should be appreciative that (1) we have a place to freely post questions and (2) that people take the time and dedication to answer those questions unselfishly to the best of thier abilities.

We are not doctors, but we a small caring group of individuals that support and help each other defeat our disorder. We will not be swayed or silenced by ignorant posts, comments or opinions.

To Lori, LDuyer, RG, and other nameless individuals, THANK YOU FOR YOUR SUPPORT, TIME, FEEDBACK, AND UNSELFISH CARING.

(None of you thought I could be that serious for that long did you?)

Colorado Jan · Post by **Colorado Jan** » Mon Dec 05, 2005 5:11 pm

Lori---please don't worry so much about whether you should or should not post. Just DO it. Most of us do not care if you are currently using CPAP. You did at one time, you educated yourself about it and you are passing along what you learned personally or read about the subject. Isn't that what we all are doing?

Apparently there are some that don't want you posting? I've missed that, but if there are...to hell with them. This is a public forum, post away. The naysayer's can just click past your posts. It is your right to post...and their right to ignore you.

I don't have that much to offer and I just type away....lol....what the heck?

Okay? Just relax!

Jan in Colo.

RobbyRobert · Post by **RobbyRobert** » Mon Dec 05, 2005 5:26 pm

Lori,

You are one of the great people on this forum. I have read many of your posts, and all of them are very informative. insightful and worth reading. (The one where your daughter modeled the mask was really instructive, and I showed that to a guy who sells CPAPs. He thought it was a great idea! I also used it myself!) I was sad when you were keeping a lower profile, as you always have something good to share.

I haven't quite understood what the big deal is about whether or not you have been diagnosed, etc. I got the impression you were not doing CPAP therapy for a time (and am curious about that!), but given how long you have used CPAP and all you have shared, you definitely qualify as an expert.

Don't worry about the few jerks who want to snipe at you for whatever reason. It is clear that they have nothing to say, and just want to have an axe to grind. I think it is fair to say that most of us would just assume "throw up" on the guy using "Another Guest" name rather than use the "barf bags" he is offering.

(When those that criticize have to hide behind anonymous "Guest" that really shows how empty they are. If I am going to disagree with someone, I have no problem putting my name to it. So it is time that those who want to throw stones either put up, or shut up. Those that don't are not even worthy of a "barf bag".)

Now I will get down of my soapbox...

Please let us know how you are doing, and personally I am very curious as to what you are doing (or not doing) with CPAP. I recently stopped taking Ambien after taking it every night for 6 years. It has made a positive difference for me! I did that after doing some research about the side effects.

I am always interested in hearing from somebody who has something good to say, and you are definitely one of those people!

You are one of the people that makes this forum such a great place!

Have a great day!

Robert

Sleepless on LI · Post by **Sleepless on LI** » Mon Dec 05, 2005 5:27 pm

another_guest wrote:need I say more? I did not enter this thread and if something thinks I did above they need to know I didn't -

and now we have someone trolling with my nick

the real another_guest

That's okay. I totally believe you didn't write it. And I know who did. Sorry she took your name. She has no courage to post under her member name. No hard feelings here...

And thank you to all of you who wrote back in my support and voiced their feelings on the pathetic guest poster, who is actually one of the members here on this site. But I will be a good girl and not reveal who she is. I won't sick to that level. Let her have her fun being as cowardly as she is. She knows who she is and if she can live with herself, that's punishment enough.

Colorado Jan · Post by **Colorado Jan** » Mon Dec 05, 2005 5:30 pm

Ahhh, I've found the posts that got you riled up. Pretty nasty. My personal addition to the discussion would be to point out that CPAP is a valid therapy for oxygen desats as well as OSA....

AND for the most part, we discuss on this forum various comfort and compliance issues. You have been compliant with CPAP and therefore you have much to offer.

There are nuts everywhere. At least when they live in an internet forum, you can turn them off and walk away from them! Don't let them get to you (and that goes for all of us!)

Jan in Colo.

Sleepless on LI · Post by **Sleepless on LI** » Mon Dec 05, 2005 5:49 pm

Jan,

I just hope you and everyone knows, I KNOW WHO SHE IS. She PM'd me under her real screen name and has been posting guest posts ever since to try to seem like...well, I can't even imagine (LOL)! I can't thnk like her, thank God.

I appreciate your support. But 5.6 is OSA, besides from oxygen desats, too. 28 epsidoes in under five hours is considered having OSA. So that was why I posted yet another piece of my study. I was "accused" by the whack job of having three the entire night. 28 is not 3.

Thanks, Jan. I appreciate your words and support. I'm not going anywhere.

SLPYHED · Post by **SLPYHED** » Mon Dec 05, 2005 8:25 pm

Lori, these guests are probably just jealous because you are HELPFUL and they are nothing but a burden to society-- and this board!

Hed

Sleepless on LI · Post by **Sleepless on LI** » Mon Dec 05, 2005 9:41 pm

SLPYHED wrote:Lori, these guests are probably just jealous because you are HELPFUL and they are nothing but a burden to society-- and this board!

Hed

But what you don't realize is, this is NOT a real guest. It is the person who wrote me the hateful PM last night who I have the identity of. She just wants to continue this sick little game she is playing. Hopefully she'll eventually tire of it and find someone else to stalk. But thanks for the nice words.

Guest · Post by **Guest** » Mon Dec 05, 2005 10:28 pm

RobbyRobert wrote:I got the impression you were not doing CPAP therapy for a time (and am curious about that!), but given how long you have used CPAP and all you have shared, you definitely qualify as an expert.

Please let us know how you are doing, and personally I am very curious as to what you are doing (or not doing) with CPAP.

Lori no longer uses CPAP. She used it for 4 1/2 months from June 7th through October of this year when she reached the conclusion it was unnecessary. Following are excerpts from her post explaining her thought process.

Sleepless on LI wrote:I was diagnosed as having a 4 HI only at the sleep study I had, no apnea events at the first study or the second/titration study. But I guess since I had 14+ PLMs and oxygen levels that dropped under 90%, they put me on therapy.

Loooooong story short, I have lost almost 20 of the 25 lbs. I needed to lose. If you recall, my ENT said there was nothing anatomically causing my OSA and thought it might have been the fact that I was a skinny woman my whole life and recently had gained weight. Told me to lose it and come back and see him.

I don't know, but it would seem to me that there may come a time, if your episodes are so few pre and post therapy, when your therapy may make you feel worse off than if you weren't on it. I am concerned that this may be the point I'm at.

I did an experiment a few weeks ago where I set my machine to 4 cms. for the entire night for a bit over a week. My AHI's stayed in the 1.3-1.9 range, except for two nights that they were 3 and 4. In any event, if you judge the need for therapy by the number 5, I didn't need it any night. I no longer have headaches, maybe due to eating right and exercising now and the fact that I drink tons of water now, too, which I never used to do, and they say one of the number one causes for migraines is dehydration. And my borderline high BP was NOT helped by CPAP, but just recently by the addition of a water pill after waiting almost five months for the CPAP to bring it down. It never did.

I am very afraid of making the wrong move. And I don't have a sleep doctor, never did, to talk this over with so I am coming to the experts.

JimH · Post by **JimH** » Mon Dec 05, 2005 11:12 pm

Question?

Have this guest or the fake another guest posted anything of value in here other than a personal attack on Lori?? they remind me of the 5 year old boys (speaking with personal experience in a galaxy now far far away) who pull on the little girls ponytails in school and pretend that they hate them when in reality, they really like them and are just trying to get her attention!! Lori, you must be doing something right. Obviously 99% of the board has benefited greatly from your advice. Don't let a couple of spineless jellyfish get to you.

JimH

Colorado Jan · Post by **Colorado Jan** » Mon Dec 05, 2005 11:14 pm

Dear Guest:

This is getting very tiresome. I believe 99% of us really don't care if Lori has or has never had sleep apnea. It really isn't important.

Can you please think of something else to contribute to the board?

Thanks,
Jan in Colo.

LDuyer · Post by **LDuyer** » Mon Dec 05, 2005 11:29 pm

Swordz wrote:I think people need to realize that advice given on here is just that, advice. We are not doctors, but are a ingenious, dedicated, usually self-taught, and highly motivated group that researches all sides and angles concerning our disorders (OSA,insomnia, etc).

People should be appreciative that (1) we have a place to freely post questions and (2) that people take the time and dedication to answer those questions unselfishly to the best of thier abilities.

We are not doctors, but we a small caring group of individuals that support and help each other defeat our disorder. We will not be swayed or silenced by ignorant posts, comments or opinions.

To Lori, LDuyer, RG, and other nameless individuals, THANK YOU FOR YOUR SUPPORT, TIME, FEEDBACK, AND UNSELFISH CARING.

(None of you thought I could be that serious for that long did you?)

That was a well thought-out insightful post. And thank you for the kind thank you. I might add that perhaps your name should be added to the list.

Linda

Swordz · Post by **Swordz** » Mon Dec 05, 2005 11:34 pm

LDuyer wrote:I might add that perhaps your name should be added to the list.

I'm still in my CPAP-apprenticeship. Hopefully one day I can join the ranks of the big kids like you all.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP

LDuyer · Post by **LDuyer** » Mon Dec 05, 2005 11:46 pm

Swordz wrote: I'm still in my CPAP-apprenticeship. Hopefully one day I can join the ranks of the big kids like you all.

Hahaha!
Tsk, tsk, tsk. Not so.

It always amazes how the newer posters always say they don't contribute much. But in my view often it is they who contribute the most. Why are we attracted to these apnea boards? Because we want to hear from people who go through the same things. May seem odd, but I'm always learning new things from the descriptions of new people who describe what they're going through as they're going through it. So don't sell yourself short. You contribute in mega ways!

(but you might hold off on describing us as the "big" kids. Some of us are a little sensitive in that department.)

Linda

Sleepless on LI · Post by **Sleepless on LI** » Tue Dec 06, 2005 6:11 am

Funny how the Twilight Zone music is playing in the back of my head...oh, if you all only knew. If she keeps it up, I will let you know who guest really is and it will feel so good!

Diagnosed

Re: please refrain from using my nick here