And, A Stranger Helped Me Along The Way

I have a perception of my self as a normal person just goin' on with life. Then one by one, my body let a few problems develop. Diabetes, (not from being overweight) Fibromyalgia, High BP, Spinal Stenosis, RSL, 5 Sinus Surgeries & COPD from Chronic Bronchitis, & maybe the root cause of some of this - Chronic Insonmia since a child. I do what is necessary to take care of each thing, and let them be in the background of my daily life. I do quite well, not letting them "rain on my personal parade" too much. In fact, I have considered myself fortunate, because I don't have what I consider the "worst"--depression. I have known people whose forms of depression, beat them up a lot more than anything I have.

Then Sleep Apnea came along - I ranted to myself, "This isn't fair, I've had more than my share. Too h--- with sticking a hair dryer up my nose." My Dr and DME were impersonal objects doing the necessary amount, but not a drop more. Than by accident, I found CpapTalk, where I found knowledgeable people, funny people, friendly people & creatitive problem solvers. And, people who surprisingly wanted to help a stranger trying to understand the introcities of that most mysterious condition---Sleep Apnea. And that equally peculiar place---Medicare..

I have been on CPAP one month & I have a problem I'll be posting about, but I wanted this post to reflect my feelings about the people who have responded to my needs, in ways I could never have imagined. Know my heart is filled with awe & appreciation for the Strangers who have become Friends. Thank you, Jan

Jan, what an uplifting message!

Sorry about your health problems, but you sure do have the right attitude, girl!

Your own posts have been helping many, I'm positive. There are a LOT of readers who will never post, but get help reading about problems/solutions/ideas here. You are helping plenty of people yourself, Jan, whenever you post a question and the replies start hitting the thread.

Rested Gal, To get that supportive post from you, with all your experience - gives me a happy feeling all over. Thanks, Jan

Yes, I found CPAPtalk much more helpful/supportive than the other online forums that I visited before here. I was in denial and wasn't sure about starting treatment, but instead I started treatment the day after I visited here for the first time.

There are things that I have learned on here since I started, but not enough to make me wonder if I shouldn't have dove in to treatment. I'm sure if I had known the full extent of things, they might have added to the excuse to continue to put things off. I can be very good at procrastination.

The Dreamer.

Jan,

Great post. A thing about cpaptalk is that you are likely to make real & lasting friends here. Also the fun side makes the therapy tolerable when things get tough. We have all fought battles with uncomfortable masks & excessive leaking & wondering why some periods of therapy seem to be going backwards.

Cpaptalk *is* a magic place for people who know they need the therapy & know they need advice & help & encouragement.

The professionals in this industry do vary a lot. Some see each patient as another entry in their AR ledger, some treat us as friends. Some don't like OSA patients who ask too many questions or who may appear to be learning too much about the therapy.

Cpaptalk is a great source of information & inspiration.

Cheers

DSM

To The Dreamer; I had to sorta laugh/be angry at myself when I read your post regarding procrastinating & denial. I had first sleep studies in 2002. I disliked everything about CPAP. How could I put the "Fire eating hair dryer" up my nose, at night, wash all the equipment in the a.m., and go to work. I ran away into UPPP surgery, it helped some, but gave me other complications. That's what denial did for me.

Right now, I'm having a problem with VERY tender/sore nares. I'm treating them with Ayr gel, and nasal washes. I find it a challenge each night to "Hook to the Hose." Then, I think of the thousands on this site, who Hook-up, and I get courage for the night.

I guess denial and procrastinating are frequent in human nature - but in my case, are self-defeating behaviors. Jan

SaltLakeJan wrote:Right now, I'm having a problem with VERY tender/sore nares. I'm treating them with Ayr gel, and nasal washes. I find it a challenge each night to "Hook to the Hose." Then, I think of the thousands on this site, who Hook-up, and I get courage for the night.

I'm having that problem too....I bought Ayr gel and nasal wash stuff, but I haven't used either yet.

I'm certainly tempted when I get in to bed to not hook up.... It is also a struggle in the morning to unhook.

I struggled with the cleaning the mask every morning...to which I use cpap wipes on now. Which at first seemed an expensive shortcut....though cutting it the wipe down makes it easier to rationalize.... Easier to remember to use a cpap wipe and wipe my mask, than to take it apart every morning, and find a clean bowl to wash it in and then find a spot to get it to air dry....etc.

The weekend cleaning is another story....it is very tempting right now to toss the headhear in with my laundry and see if it'll survive the machine. It doesn't say one way or the other on putting it in the washing machine (though what it does say to do is hand wash, but I'm pretty sure my washing machine has that setting). Though it did say to not put the mask parts into the dishwasher, something else that I would probably be tempted to do now and then.....

Yep...it does have a Hand Wash setting....

Anybody put their CL2 headgear in the washing machine?

The Dreamer.

Jan I have also found this place to be of great help to me. I have tried to help others when I could but I have had more help on here than I was able to give.

I recently read a book called Sleep interrupted by Steven Y Park MD. This book opened my eyes up big time.
I don't think Dr Park is on this board but he is on apneasupport.org
This is his website http://doctorstevenpark.com/

In his book he talks about many of the things you list that effect you. He believes there is a relationship between those things and sleep apnea. I would suggest you at least visit his web site. I would also suggest you read his book. I got one and couldn't put it down. I recently finished it and I am planning on reading it again when I finish the book I am presently reading.

If you have questions you can email him or ask him on the other board.

I do urge you to read his book it will really open your eyes.

Good luck


Gerry

HI DSM

Thanks for your support. Everytime I scan the posts and see your picture, I pull your post up. I have learned so much from you. Your words sound like your picture looks, solid, reliable, someone you can count on for good advice. Thanks again, Jan

SaltLakeJan wrote: I found CpapTalk, where I found knowledgeable people, funny people, friendly people & creatitive problem solvers. And, people who surprisingly wanted to help a stranger trying to understand the introcities of that most mysterious condition---Sleep Apnea.

Know my heart is filled with awe & appreciation for the Strangers who have become Friends. Thank you, Jan

Jan, very well said!

This forum and the people that have helped me,
are truly a life changing experience......
because w/out it, I would probably have quit the thearpy, early on.

In many ways, I owe my life to these people.

All the very best to you as your cpap journey continues.

Well GerryK,

My thought is that you are unusually perceptive. Perhaps reading Dr Park's book,where he lists conditions he believes may have a link to sleep apnea, and my post where I list similar conditions brought the connection to your mind. For what ever reason, I appreciate you letting me about it.

Your post was interesting to me, because some my earliest memories are trying to breathe through a stuffy nose and not being able to sleep. Through the years, Ive often wondered if all my health problems are linked; but never would have connected sinus and sleep apnea.

I read a few blurbs of his book on line, and could see a possible connection. I plan plan on picking it up tomorrow. Thanks again GerryK.
Jan

Hi Carbonman,

Thanks for the encouraging post, and it was kind of a coincidence that you posted me. I'd been chasing your posts on the Quattro Mask earlier today. I want one for the same reason you mentioned, "If I get a cold, etc" Then, when I read you had an OptLife Nasal, I wondered how you rated that mask? I am interested in the Optilife's new nasal cradle or what ever it is called.

I agree with you, if I had not found this site, I never would have continued with sleep apnea. I needed more support and encouragement than I got from the Dr. or DME. On the days I was in both places, I decided, I represented "Cold, Hard, Cash"
Here I found human beings who cared about the needs of others. I am grateful.

Jan.

Jan,

"Strangers who become Friends..."

What a lovely turn of phrase. And so very true. I've been involved in online communities peripherally since 1987 and directly and intensely since 1992.

It was through these communities that I gained friends around the world. Through these communities that I learned of the diet which saved my life. Though these communities that I found true friends, like the online friend from Australian (now living in Alabama) who gave us (and our two dachshunds) a place to stay in the harrowing weeks after we evacuated for Hurricane Katrina. Or the folks who sent me equipment so I could keep up with my special diet while evacuated. Or, more recently, when we evacuated for Hurricane Gustav, and the hotel where we had a reservation refused to take the dogs when we arrived -- a true friend is the person who, when you call at 1 AM and say, "The hotel won't take the furkids..." and their response is "Come ahead. The cats will have a conniption, but they'll get over it." (They did, too...)

In this community, too... ironically, I came here looking for help for my CPAPer brother-in-law during an unexpected power outage from Hurricane Ike. (Who expects a power outage from a hurricane when you live in Ohio?!) I found the information I needed here. And then, a couple weeks later, when I, myself, was diagnosed with apnea, I came back. Thanks to the help I received here, things have gone much smoother than they might have.

An friend of mine in the SCD community calls it "Paying forward..." As you've received help, help other newcomers. In this way, we keep the chain of information moving, and keep the valuable experiences we each have alive, sharing them as we go.

Your thread about your DME made me laugh because it was so very true... and I learned a few things, too. So thank YOU.

A stranger sent me to cpaptalk over 2 years ago, and here I remain. I seldom need help with my cpap machine, software and mask these days and I seldom post because others who do post have better answers than I do. Yet every single day I browse the threads here, enjoying the words of my online friends. Probably there is no way to recognize most of the forum members face to face since we are anonymous in so many ways, yet I feel I know lots of folks here rather well. I know I continue to be helped by the friendship, humor, and general air of support for others.

It is nice to be here.

Catnapper - Joanie

Welcome to the party......."neighbor".

Glad you accidentally found your way here.


Den