So Upset about the Cpap

JohnBFisher wrote:

49er wrote:... But is it necessary to use the above language in response to someone who did nothing to deserve that in my opinion? ...

You are correct. I should not have posted the way I did.

So, to kaiasgram in particular, and the forum in general ... Please accept my apologies. I can offer excuses, but they are just that. And poor behavior is not really excusable. So please accept my humble apology.

Big of you to apologize, but you had nothing to apologize for. We're entirely too polite to the nattering touchy feely folks. Apnea and CPAP are real things. Getting in touch with your feelings doesn't mean a darn thing compared to the question of whether you're breathing or not.

However, do whatever you're comfortable with.

Wow. I'm torn between being shocked and amused!
I didn't follow this thread after the first hour when the OP had recieved 5-6 replies and not responded. Seeing as it had grown to 6 pages I checked to see what progress she had made.
I don't see that she ever posted again. I was the one that said "get over it". Not 'get over yourself'. And that is not all I said. See post below.

Kaisgram, We don't need each other to tell us how to percieve, feel, or communicate.
John is one of the most valuable and compassionate members here. After awhile, you get to know the personalities of members. You don't have to agree with all of them.
Sometimes members get into pissing contests, and it's best to leave it to them to sort out.
Skimming through the pages of bickering here, I noticed the join dates of the members on each side of the debate.
Some of us have been through a couple of troll seasons. Yes, it does run in seasons. Now through spring and it can turn this forum on it's head. I don't want to see that again this year. This thread is a perfect example of how it can happen. That's why I didn't follow it.
If you want an example, do a forum search for "EricinNC". I came up with 15 pages of linked posts and his posts aren't even there because he was on my foe list and then banned. He's somewhat of a legend as he has been referenced in other troll threads.

The best thing to do here is help who you can help. No policing needed.

Lizistired wrote:Welcome to the forum. Get over it. It is what it is and xpap can save your life.
Register and list your equipment.
My brother has undiagnosed sleep apnea and will probably die in his sleep, or have a stroke and his stubborn family will have to take care of him.
What other condition would you resist treatment for?

JohnBFisher wrote:we are defined not by how we do when everything is right. We are defined by how we continue against all odds. THAT actually does build character. You can make it work.

Wow! I actually did need that today. It must have been Providence because I spent the first night away from home this weekend while using the cpap. My bed at home is elevated and I tried hard to prop up pillows in the B&B to "simulate" my at-home bed. It did not work. In the morning I woke up with just one pillow under my head. I took my brick, and not my expensive apap, so I don't know what the AHI was but I know it wasn't good, as I didn't feel well that day. Then when I got home, I did not sleep well in my bed last night because I didn't drag the mattress back up on the wedged pillows (as the mattress slides down slightly every night) and the slant was not enough to keep me from having a bad night (I know, way too much information). I was feeling very, very depressed this morning about how I couldn't make sleep "work" the last two days. So I needed the reminder. Thanks, John.

sylvie wrote:

JohnBFisher wrote:we are defined not by how we do when everything is right. We are defined by how we continue against all odds. THAT actually does build character. You can make it work.

Wow! I actually did need that today. ... I was feeling very, very depressed this morning about how I couldn't make sleep "work" the last two days. So I needed the reminder. Thanks, John.

I am glad that it helped. It's funny how some quotes can so capture the essence of a person's beliefs. That does a good job of capturing my thoughts.

One of the reasons I got so mad was that kaiasgram knows nothing about my back story. I've shared some of it in the past. But this is not a pity party. Trust me when I say that I can say with authority that "If CPAP is your hardest challenge, then you've had a gifted life!".

But I went on to note that it really doesn't matter what I feel ... it's how the OP feels. What the OP needs to do .. as almost all of us need to do is to take a different perspective on our lives. If you look at the problems that we face, we need to look "Through Heaven's Eyes":

https://www.youtube.com/watch?v=8LxPeK9nDIk

Though this song and my own beliefs are based on Judea-Christian faith, the thought is pretty universal.

And when you face problems such as "CPAP is too hard", then try to imagine what others might say of you after you are dead. No, this is not an attempt to scare someone into using CPAP. It's just a technique to gain distance. Will those you leave behind rejoice that you touched their lives? Or will we be like Scrooge imploring the spirit of Christmas Yet To Come: "If there is any person in the town, who feels emotion caused by this man's death, show that person to me, Spirit, I beseech you."

I try to live my faith. I try to see "Through Heaven's Eyes". And I try to realize that often what seems insurmountable is only my own creation, that I can overcome anything to which I devote my energy. And I try to live the Prayer of St. Francis "Lord, Make me an Instrument of They Peace!".

Heady stuff? Not really. Get those steps right and a LOT of life falls into place. It's never easy. It's just less of an impossibility when I get out of the way!

And let's be clear .. it's a daily challenge .. Just ask my wife and kids.

One of the reasons I got so mad was that kaiasgram knows nothing about my back story. I've shared some of it in the past. But this is not a pity party. Trust me when I say that I can say with authority that "If CPAP is your hardest challenge, then you've had a gifted life!".

You have a great point. I think most of us can review our own lives and see that adapting to a cpap machine really isn't the hardest thing we have done. And sometimes, we need to think about what could be worse. Years ago, I started doing photography, and I would go out to farms and photograph horses. I have bad allergies, especially hay. And for awhile, I could not find any medication that helped. So, I would be sniffling and blowing my nose a lot. I was embarrassed by it, mostly because it was calling attention my me, but I was shocked by how many people felt sorry for me, as if it was some horrible affliction. I kept thinking, it was better than being in a wheelchair.Something like that would actually stop me from doing photography out in fields.

Just yesterday, while I was at work, I was thinking about my leg that has been hurting me for almost 2 months. I think it is just a strained muscle, but I can't really rest it as one of the things that bothers it is when I roll over while asleep, and getting in and out of the car. So, I was feeling sorry for myself, thinking that has been going on way too long. Then I was trying to convince myself that it could be worse. Just then, I walked bast a customer in a wheelchair, clearing missing a leg. Yes, I could have it a LOT worse.

Just in terms of health, I think my weight is much worse than my sleep apnea in terms of dealing with it. I believe the sleep apnea may actually be causing me more harm. But it is easier to sleep with a cpap machine than it is to actually lose weight. My sleep apnea can be treated and thus eliminated by sleeping with a cpap machine. Wouldn't it be awesome if I could lose weight, just be sleeping with a cpap machine?

Also in terms of health. I have allergies and asthma. Overall, they are not a big hardship. There are times when it hits me hard for a day or a week. And those times, it really bothers me. But overall, it really isn't that big a deal. Yet it is more of an inconvenience than a cpap machine.

I have high blood pressure now. I started taking medications for it last year. I take 3 medications totalling 4 pills a day. I also take 2 allergy pills a day and 2 zantac most days. If I had to choice to not need those 8 pills per day OR stop using the cpap machine; I would give up the pills and keep the machine. I HATE taking pills. I don't mind the machine.

Overall, there are things in my daily life that I do not really consider to be difficult, but I do consider them worse than using a cpap machine. I would put the machine much lower on my list of inconveniences or problems than a lot of other things.

I do agree that people struggling to adapt are obviously not going to consider as benign as I do. But hopefully, once they have had time to adapt and the kinks are worked out, it will eventually become that way.

Welcome to the club. i struggeled the last five years with severe sleep apnea.I had to literally fight my insurance company to get second and third test approved.Finally this week my lung specialist hocked me up with the maschine.My machine makes a slight noise, and the nose mask I have lets air flow out.Hard to explain.It makes my hands cold duri g the night.I m still trying to find a compfortable sleep with it! i have ordered the cpap pillow.I hope it will help.But I m going back to that company tomorrow and will see for a different mask I had the silicon strip.It is just not compfy.How come many of you are so long on that?i hope i will not be on for it too long!

Angelika64 wrote:... How come many of you are so long on that? I hope I will not be on for it too long! ...

In my case, it seems to run in my family. My grandfather almost certainly had severe obstructive sleep apnea. When I turned a teen, I developed severe obstructive sleep apnea. My sister used to complain that I sounded just like our grandfather. And I was underweight at the time. I doubt that I will ever be able to sleep without some xPAP device. But I'm okay with that. Because I do sleep well with it.

How come many of you are so long on that?i hope i will not be on for it too long!

Are you asking how long we have been using the cpap treatment? And why so long?

Sleep apnea is caused by anatomy. Most people with sleep apnea are never cured. Many get worse with age. Treatment can be adjusted so that the effects do not get worse. But very few people actually get better and can safely stop using cpap.

Some people are able to quit using cpap after losing weight, but not all sleep apnea is caused by weight. In many cases, the sleep apnea causes the weight gain. For those who do improve with weight loss, they can get worse again if they gain the weight back.

Sleep apnea is not something that can truly be cured. It can be treated so that we have the results of being cured (as long as we keep up the treatment). But for most people, this is a life long treatment. Not something temporary.

Angelika64 wrote:Welcome to the club. i struggeled the last five years with severe sleep apnea.I had to literally fight my insurance company to get second and third test approved.Finally this week my lung specialist hocked me up with the maschine.My machine makes a slight noise, and the nose mask I have lets air flow out.Hard to explain.It makes my hands cold duri g the night.I m still trying to find a compfortable sleep with it! i have ordered the cpap pillow.I hope it will help.But I m going back to that company tomorrow and will see for a different mask I had the silicon strip.It is just not compfy.How come many of you are so long on that?i hope i will not be on for it too long!

What machine and mask have you been given? What pressure is your machine set to deliver? It sounds like you are having problems with leaks. I would find the videos (using an online search engine) that show me how to adjust the mask - it is NOT as simple as pulling the straps as tightly as possible. Not only does that hurt, it distorts the mask making the leaks worse! You obviously need the straps tight enough to stop the mask falling off your face, but not much tighter than that. Do you breathe through your mouth? If so, you either need a chin strap or a full face mask. You can test that by trying a flexible self-adhesive bandage (ACE in the US) under your jaw and over your head - a couple of times is probably enough. If that stops your hands from getting cold, and the machine and mask are quieter, you have found the source of your problem. If not, you definitely need to try other masks. If you can try them on while you are lying down, so much the better. But the best way to try them on is lying down with a machine set to your pressure turned on. If you can't stop the leaks then, you need a different mask (or a different size). Finding the right mask and size is a big adventure. Look at it as a challenge to overcome, and the feeling when you are successful is amazing!

My husband has been trying to use the cpap for 6 months now. He can not get a mask to fill properly. He has a very narrow face and also a narrow nose bridge. Nothing seems to work. We have tried a gel type device that fits over the bridge of the nose. He has been through 5 different types of mask. He is now trying hard to use a child small mask but still having problems. Does anyone know of any company that can alter the mask to fit his face? We really need some help

Absolutely weird. Apnea is not an STD. Since I joined the crowd dkscovered 20% people I know are using one. Three friends died from sleep apnea just last year. One fell asleep in recliner watching television and wife found him dead after two hours. One tried to travel light for a one night visit to see the grand kids. Rather your kids see you taking care of your self or dead in bed?

Apnea is nothing new. Thanks to a few doctors FINALLY figuring out what was going on, we have hope.
Public awareness is still moving slowly. Old stereotypes are very hard to kill.
Some feel our increasingly softer diet has contributed to physical changes leading to poor airway structure.

There seems to be a run lately on digging up old threads, and trying to breathe new life into them.

Halloween is coming soon.

Does anyone see a connection?

Best wishes, Nate

NateS wrote:There seems to be a run lately on digging up old threads, and trying to breathe new life into them.

Halloween is coming soon.

Does anyone see a connection?

Best wishes, Nate

Hi Nate,

For some reason, I enjoy seeing old threads to remind me of what has occurred in the past on this forum due to my bad memory. I know I am in the minority on this but I just wanted to let folks know there was one person who didn't mind seeing old one resurrected.

I do understand why people need to start a new subject unless the OP has replied with an update.

Don't see a connection with Halloween. But thanks for reminding me how fast time is going.

49er

Guest wrote:My husband has been trying to use the cpap for 6 months now. He can not get a mask to fill properly. He has a very narrow face and also a narrow nose bridge. Nothing seems to work. We have tried a gel type device that fits over the bridge of the nose. He has been through 5 different types of mask. He is now trying hard to use a child small mask but still having problems. Does anyone know of any company that can alter the mask to fit his face? We really need some help

Try the Nasal Aire II. I have used it successfully for 5 years. It's so much less stuff to fiddle with than traditional masks.

They are dirt cheap on https://www.cpap.com

If you cannot obtain one, PM me and I'll send you a very gently used and well sterlized one.

Cheers,
Barbara