hi i'm new :)

[danibm]

hi just an introduction. where to begin. i am not currently using a mask, i am here because i am worried i am going to have to - i tried once & it hurt my neck because of a back injury. at that time i took no pain meds & wasn't willing to because of a history of addiction, so i gave up on the mask & went on to other options. i tried the mouthpiece, that hurt too. i was put on Ambien / Lunesta & they work, but they are tearing up my stomach. i had a consult to see if i am a candidate for Pillar & he said no. i have UARS not apnea. most of the docs say it is so mild they wouldn't even treat it except that i have symptoms. i do not sleep well, wake up gasping constantly after bad dreams, up every hour. i spend my life completely exhausted. taking the sleep meds has really shown me what a major difference it can make if i get some sleep. so i have an appt with a sleep specialist on the 15th hoping he can help me, but i am scared he is going to order a dang sleep study again - i find them awful & cannot sleep during them, & i worry he is going to say mask again. i have not tried the smaller than a full face versions because i am a mouth breather.
i never got one second of sleep with the mask on, i would have to have meds of some sort to help me sleep. i am not technically minded at all & all the numbers & stuff in reading sleep studies & settings on machines just scare the heck outta me. i dont' underestand any of them at all.
thanks.
oh i should warn you guys, i spook easily. i am here because you guys seem so nice - i was on another board before & i kept trying to tell them my numbers were really low & for me this is a quality of life issue rather than a serious medical condition & they kept sayin' "on no that can't be true surely you are going to die". or at least that is how i felt. so i am shy about boards now. they scared me right off of that other one.

[lanndi]

Welcome Danibm!

I am a newbie on this forum too. I am still waiting for my xpap machine -- and I can't wait to get it to start feeling good.

While my eyes can start to glaze over when they get too "techy" on me, I have found them to be a great group of folks! So I just skip info that gets too detailed for me to understand -- especially since I don't have my machine yet. I figure when I'm ready to learn more about that, I will ask questions. I'm practicing "just-in-time" learning!

So don't worry if you don't understand everything at once. Take it one step at a time -- and if anyone scares you -- give them the or and tell them to back off!

Lori

[ozij]

Welcome to the forum, Dani.
It's OK about not being technically minded.
Sometimes, when we're very scared we lump everything together into one big blob of "grrrrrr", and that makes it feel very very unmanageable.

Full face masks are not all the same.
And then, there are masks for mouth breathers that let you breath through your mouth while sending air up your nose with nasal pillows.
We've got thousands of hours of mask experience on the forum (that includes deconstructing masks to make them more comfortable, and switching headgears between masks -- even taking one company's headgear and putting in on another's mask ).

So lets take the blob apart:
Take a piece of paper, and divide it, top to bottom, to 3 parts.
Write MASK on the first third.
Underneath that, write:
Comapny Model Size.

Fill in the data when you recieve the mask - or you can do it with the one you had. "Model" means name, for instance "Ultra Mirage II"

Second part from the top:
This where you write: MACHINE
And underneath that title you write:
Company Model Pressure Settings Ramp ( yes/ no)

Fill in this data, if you need help, ask slowly and carefuly about each detail -- don't let someone else do that for you

Third part from the top:
MY SLEEP STUDY (PSG)
Try to write down what the doctor tells you.

That's all. We need to know the specifics of you mask - because each mask is different, and usage tips are very specific to mask types. And sometimes, its a different size that makes all the difference in the world.

Good Luck, Dani.

[carbonman]

i spend my life completely exhausted.

I spent years of my life exhausted, too.
The mask is a small price to pay for a life, w/energy, again.

am scared he is going to order a dang sleep study again -

...hey, sleep docs have boat payments to make,too.


i am not technically minded at all & all the numbers & stuff in reading sleep studies & settings on machines just scare the heck outta me. i dont' underestand any of them at all.

May be time to take charge and get technical.
Knowledge is power.

i spook easily.
they kept sayin' "on no that can't be true surely you are going to die".

I don't want to spook you, but we're all going to die.

....'cept me, I'm going to live forever,
so far, so good.

[ozij]

they kept sayin' "on no that can't be true surely you are going to die".

I don't want to spook you, but we're all going to die.

....'cept me, I'm going to live forever,
so far, so good.

Gee, carbonman, couldn't you have made that statement (about yourself) before you spooked us all with your bronchitis, sinusitis and whatnot . I was worried about you. Glad to know you're back to your old self

O.

[carbonman]

Gee, carbonman, couldn't you have made that statement (about yourself) before you spooked us all with your bronchitis, sinusitis and whatnot

....just a speed bump......not to worry.

I was worried about you.

Thanks! I appreciate that.

Glad to know you're back to your old self

.... back , I didn't know I was gone.

O.

[danibm]

thanks guys, i think the first suggestion of taking it real slow is good for me.
i will try to break it all down if / when i get a mask but dont' want to get ahead of myself cuz that stuff all just scares the crap out of me. there is no way to "become" technically minded if you are just not. i can't. it just isn't a possibility for me, that's like asking me to change who i am. if i'm not i'm just not you know? i can't be what i'm not.
so yeh here we go again with all the problems i had before.
i need to just take it slow, not get ahead of myself & not start worrying about a mask i dont even have yet or haven't even been prescribed yet.
thanks so much for your responses.

[Catnap]

Danibm, I felt the same way at first. When I found out I needed to start using CPAP, my thinking was "just show me how to plug it in and I'm done." I never questioned the mask and machine that were chosen for me, and that was a good way to start out. I kept reading this forum and after I got a few good nights of sleep and the brain fog started to lift, I discovered that I was a little more interested in knowing about the tech stuff than I ever thought I'd be. Now, it makes a lot of sense to me that I should understand and be in charge of my own treatment. I still get lost sometimes when everyone is comparing charts and graphs, but that's okay -- I take what I can use (or understand!) and leave the rest.

The best thing about this forum is that everybody here has "been there." Personal attitudes and adjustments are different, but everyone knows what it felt like to be told they needed to start this treatment and get accustomed to whatever that meant in their own cases. There are lots of good ideas and suggestions, from learning to live with your diagnosis to choosing your equipment to tracking your therapy, and more.

Nice to "meet" you!

[danibm]

thanks Catnap, you guys do seem so nice here. i am really relieved, as i say my experience with a previous board had been bad. ya'll are so much more kind & understanding! it is great to know if i do have to go thru this again i have people here who are going to be a little more gentle about helping me
thanks
another question, how do ya'll handle the cost of all the doc appts & equipment changes?

[Catnap]

My insurance covered a fair amount of mine, and my credit card covered the rest If you're on a tight budget, you'll want to do some comparison shopping at sites like cpap.com (the sponsor of our forum here) and cpapauction.com. Cpap.com has a price-match guarantee, so you can be fairly sure of getting a pretty good deal from them. Even if you have insurance, you might want to compare their prices. I found that once my co-pay and deductibles were taken into account, I would have paid almost as much to rent my old basic machine for a year as I paid to buy a new, higher-end, data-capable one. "Data capable" is a phrase you'll hear a lot here, and even if you don't care at first, you're likely to decide you want to have access to at least a little data. Otherwise, it's kind of like trying to drive at the speed limit without a speedometer!

[danibm]

ok, again that is a bit overwhelming.
but thank you. i need to just wait & see.
my husband has a good job so it's not that we are on a budget really but medical costs sure can add up & we do not have insurance.

[Pugsy]

Welcome Danibm,
I am new also so probably all I can offer is moral support but I do have plenty of it and an little extra positive attitude I can toss your way if need be.

On one hand I wasn't all that thrilled with being hooked up to a machine at night for the rest of my life but on the other hand I was actually relieved that there at least was a diagnosis and somewhere to start in an effort to improve my quality of life. I am a "glass is half full" person. If you need to take thinks slow to come to grips with things, then by all means do so. Whatever works for you.
Now me...... I gotta be in control and know every little detail. Just the way I am and I do much better. My DME guy just shakes his head when I tell him what I have been up to. But he is not fighting me now.

Good luck,
Brenda

[danibm]

i like & appreciate your attitude, thank you.
yeh for me it's going to have to be slow & gentle, i don't like any of this at all not one bit
but yes feeling better would be nice

[BlackSpinner]

Getting a CPAP and mask is as big a life style change as is giving up smoking or alcohol for some people and requires as much help. Not discipline, not guts, not determination but help, sometimes therapy to make our minds work with the change. Plus it is as important for our bodies and our personalities as giving up smoking or alcohol is. No one says to an alcoholic - just stop drinking it is easy.

I was just speaking to a friend who had an operation last week and lost 2 1/2 pints of blood - she is exhausted and will not be going back to work for at least 3 weeks because she can't think - she has an important job where she makes critical decisions on children's lives and right now she can't find her coffee cup or decide whether the dog needs feeding - that is what "tired" does. Money is meaningless to your family if your not there for them.

[danibm]

thank you Blackspinner that is a really good point i can really relate to having gone thru rehab & quitting drinking & drugs, wouldnt' have made it without the support i got in AA.
i am really gonna think about that. thank you.
yes i know, about the money, but that doesn't help when the bills pour in & the hubby is stressed about it. he is so so good to me but he can't help that he worries about money & it makes me feel guilty.