I haven't been here in FOREVER!

[mzlaura1884]

How is everyone doing? It's been almost a year since being diagnosed with OSA and using CPAP. Life has been crazy busy!!! I've slacked A LOT on using my cpap machine though too i am not going to lie. I went from loving it to despising it.. i cannot stand it anymore.

Reasons i have been gone
For one i know i haven't been using my machine nearly as much as i should
Also i went through the process to have RNY gastric bypass surgery in hopes of being healthier and hopefully being rid of my CPAP. Well on March 5, 2013 i had RNY surgery everything went good for a while but had some minor complications not really related to surgery. While in the hospital on dilaudid and morphine i fell asleep without my cpap which my surgeon made me bring with me. I was woken up pretty quickly and forced to put my mask on because my oxygen dropped to low. I've also had gastritis and most recently a herniated disk in my back so i am getting steroid injections for that. Good news is i have lost 54 lbs since my surgery and 157 lbs total. Bad news is i went to my DME yesterday for her to read my card and hopefully give me some good news... well apparently even with all the weight loss i have lost 100 lbs since being diagnosed with OSA... she proceeded to tell me and show me 95% of the time i am staying at a 9.5 pressure my minimum was 6-10 and that never changed. She said it's apparent i still need CPAP she said maybe another 40 lbs and i won't need it... but she seems pretty convinced this might be hereditary and pretty much flat out said i may be using cpap the rest of my life. She said my neck isn't big at all and i have a small chin also that not all OSA is obesity related.. i was hoping MINE WAS! I honestly don't think i can emotionally or physically handle the thought of being on cpap the rest of my life when i am only 29 years old. My life is all around improving with my weight loss and gastric bypass surgery but at the same time i need to beat this too. Any words of advice?

Anyway hope all is doing well.... i'm sure some of the veterans of this board might remember me lol

[Pugsy]

Well.....how about we try to figure out why you hate cpap and see what we can do to make it so you at least don't hate it?
Bummer that the weight loss hasn't worked the miracle yet but sometimes life doesn't give us miracles no matter how much we want or hope for them.

[kteague]

Hi - and welcome back. Sorry to hear you're struggling with using CPAP, but great to hear of the other health strides you're making with weight loss. In relating CPAP use with weight loss, I think of how overwhelming it can to think of having a huge amount of weight to lose, but thinking of each day, each week, each month, for some just feels more manageable. We don't know what strides might be made in the future regarding treating sleep apnea. You may not need CPAP forever. But you do now. I'd hate to see you go through major surgery and radical lifestyle changes seeking to regain your health and stop short of being and doing all you can be and do. Try to look at the CPAP as a tool toward reaching your ultimate goal of being healthy and enjoying what will hopefully be a longer better life now that you're addressing your issues. Hang in there. You've come too far to pull up short now.

[mzlaura1884]

Well.....how about we try to figure out why you hate cpap and see what we can do to make it so you at least don't hate it?
Bummer that the weight loss hasn't worked the miracle yet but sometimes life doesn't give us miracles no matter how much we want or hope for them.

Well i am embarrassed by it now don't know why but i am. Also the FFM is now bothering me maybe because my face is smaller now not sure... but i feel like it's huge and overbearing on my face. I also hate the tubing and the fact of when i roll over in bed i have to figure out how to make the tubing work for me. It's just a lot! I hate the fact that if i sleep somewhere other than home for even 1 night i have to drag it with me. I went to SC for a week i flew there the end of May of this year and i had to bring it with me especially since i was going to be over 800 miles from home and gone a week.. it was such a hassle having to carry that extra bag along with my purse, carryon, etc. I went to the beach sunday night with my sister and did not bring it with me probably not smart considering i was drinking some YES alcohol. There is just many reasons why i hate it.. may seem petty compared to the benefits of it but i just hate the thought of something covering my face all night and i am only 29! My husband snores bad as well and he is very small like 145 lbs i told him maybe he needs to be tested and my DME told him as well but he is stubborn. I hate hate hate traveling with this thing to.. taking everything apart, packing it, even thinking about traveling with it makes me crazy!!! What happened to the times when i didn't have to think so much for just spending a night out?? LONG GONE~ =/

[BlackSpinner]

I hate hate hate traveling with this thing to.. taking everything apart, packing it, even thinking about traveling with it makes me crazy!!! What happened to the times when i didn't have to think so much for just spending a night out?? LONG GONE~ =/

So basically it is a symbol of loss of youth and freedom to you, because really nothing you have said is a big deal or worth the hate. If you hate travelling with cpap then don't ever think of travelling with a baby!

Not using the cpap machine is like cutting of your nose to spite your face. The time in the hospital showing your O2 dropping should tell you that. Every time you sleep without your cpap machine you lose brain cells and some parts of your organs die. You are only 29, how much will be left to enjoy life with? If you decide to have a baby are you happy with denying them O2?

[Pugsy]

How about we try to isolate some of the annoyances that we can do something about and improve on them if we can?
Pick a complaint and see what you can do to lessen the annoyance.

Hose problems...have you ever used any sort of hose management system? If not...might want to look into trying something.
A lot of people here use various hose management methods to keep the hose up and overhead so it isn't dragged around when moving or ending up wrapped around the throat.
You can buy any number of models or make your own.
viewtopic.php?t=10640

The mask...with the weight loss you may need a different size or maybe even a different model.
Have you tried any other masks?
You are using a full face mask...have you tried one of the other over the nose or nasal pillow masks? You are probably using a full face mask because of mouth breathing or you think you are a mouth breather but sometimes we don't mouth breathe as much as we might think. The smaller foot print masks might be easier for you to not be so annoyed with.

I can't offer much about how you feel in general...embarrassed or whatever. That has to come from within you.
I can tell you that there's absolutely nothing to be embarrassed about but your head and heart really understanding it is going to be up to them.
Is it possible that some of the embarrassment was related to the weight issues? The old stigma that only fat people get OSA and lose some weight is all you need to do????? I weighed 112 pounds I think it was when I first started having the OSA symptoms and stuff...120 pounds when I got diagnosed. Yeah, I can probably stand to shed a few pounds but I still have a tiny 12 inch neck...my fat is in my belly and butt...none in my neck. I am stuck with the machine until something better comes along. Do I love it?
No, I would in all honesty rather not use it but the alternative is uglier and scarier and more dangerous to my health than the negatives are bothersome.

Yeah traveling with the machine is a PITA...especially since you already absolutely hate it.

I will let the others offer more attitude adjustment ideas. I am not so great with those myself. I wish I were but it's not a strong point of mine. I am more of a physical person...find a problem and try to fix it...like the hose or the mask issues.

[jweeks]

I hate hate hate traveling with this thing to.. taking everything apart, packing it, even thinking about traveling with it makes me crazy!!! What happened to the times when i didn't have to think so much for just spending a night out??

Hi,

Sorry to hear about the struggles. I am down 162 pounds from peak, and my OSA only became harder to treat. The reason is that OSA is a structural issue, not a weight issue. Weight can affect it, but isn't the causal factor. One option is to visit an ear, nose, and throat doctor and have your airway scoped. Perhaps they can tighten up something to make it better, thought this type of surgery is often something that reverts back over time (it isn't permanent). There might also be dental devices that can help.

I travel a lot, and I don't find the machine to be a hassle to deal with. I have a 2nd machine so I don't have to take apart my home machine. I keep it packed so I don't have to worry about forgetting anything. When I am ready to go, I toss it into my carry on bag with a few days of clothes and off I go. In comparison, my camera is a lot more hassle to deal with. At the hotel, I put the machine on the night stand, plug it in, attach the hose, put on my mask, and I am ready for bed. In the morning, empty out the water tray, dry it with a kleenex, and toss the stuff back in the carry on bag. The only real issue is having distilled water the first night (in the event that I cannot hit a Walmart, CVS, or Walgreens on the way). If I am not flying, I always have spare jugs at home so I can grab and go. If flying, and I check a bag, I fill a few 20-oz Diet Coke bottles with water. They re-seal very well, and I can put them in a zip lock bag for a 2nd layer of protection. I think the real trick is to think through things in advance so you don't have to think about it while you are on the go.

-john-

[mzlaura1884]

I hate hate hate traveling with this thing to.. taking everything apart, packing it, even thinking about traveling with it makes me crazy!!! What happened to the times when i didn't have to think so much for just spending a night out?? LONG GONE~ =/

So basically it is a symbol of loss of youth and freedom to you, because really nothing you have said is a big deal or worth the hate. If you hate travelling with cpap then don't ever think of travelling with a baby!

Not using the cpap machine is like cutting of your nose to spite your face. The time in the hospital showing your O2 dropping should tell you that. Every time you sleep without your cpap machine you lose brain cells and some parts of your organs die. You are only 29, how much will be left to enjoy life with? If you decide to have a baby are you happy with denying them O2?

I actually have two kids lol they are 6 and 8. I guess i was under the big assumption my OSA would likely be cured with WLS. Mine isn't yet. But this is NOT the only reason i had major surgery... everything else is improving HUGELY.

[mzlaura1884]

How about we try to isolate some of the annoyances that we can do something about and improve on them if we can?
Pick a complaint and see what you can do to lessen the annoyance.

Hose problems...have you ever used any sort of hose management system? If not...might want to look into trying something.
A lot of people here use various hose management methods to keep the hose up and overhead so it isn't dragged around when moving or ending up wrapped around the throat.
You can buy any number of models or make your own.
viewtopic.php?t=10640

The mask...with the weight loss you may need a different size or maybe even a different model.
Have you tried any other masks?
You are using a full face mask...have you tried one of the other over the nose or nasal pillow masks? You are probably using a full face mask because of mouth breathing or you think you are a mouth breather but sometimes we don't mouth breathe as much as we might think. The smaller foot print masks might be easier for you to not be so annoyed with.

I can't offer much about how you feel in general...embarrassed or whatever. That has to come from within you.
I can tell you that there's absolutely nothing to be embarrassed about but your head and heart really understanding it is going to be up to them.
Is it possible that some of the embarrassment was related to the weight issues? The old stigma that only fat people get OSA and lose some weight is all you need to do????? I weighed 112 pounds I think it was when I first started having the OSA symptoms and stuff...120 pounds when I got diagnosed. Yeah, I can probably stand to shed a few pounds but I still have a tiny 12 inch neck...my fat is in my belly and butt...none in my neck. I am stuck with the machine until something better comes along. Do I love it?
No, I would in all honesty rather not use it but the alternative is uglier and scarier and more dangerous to my health than the negatives are bothersome.

Yeah traveling with the machine is a PITA...especially since you already absolutely hate it.

I will let the others offer more attitude adjustment ideas. I am not so great with those myself. I wish I were but it's not a strong point of mine. I am more of a physical person...find a problem and try to fix it...like the hose or the mask issues.

No pugsy i haven't and it's probably something i need to look into the hose always nicks or twists around oddly because i toss and turn a lot. I do think i am a mouth breather half of the time i wake up with my mouth wide open. I also have been having to play with the humidity because i wake up with bad cottonmouth. Right now i have my machine on a end table near the side of the bed i sleep on obviously. I have done such good and concentrated on bigger and better things that cpap therapy just fell into the wood works and WLS became my "new thing". Now i am back to square one because as of now anyway OSA still remains in my life. I think i just was setting myself up for dissapointment because i was expecting the DME to tell me i didn't need it anymore and i just broke down when i found out i did. I was so compliant last year and then stopped visiting the board a few months after i started therapy for OSA i think it was Sept 2012 i stopped posting? Then i started my WLS program in October 2012 and had surgery March 2013. I have to find a way to deal with it because it is hard. Yes, i do feel like i have lost my youth... for the first time in my LIFE i feel like i have a life again i am so much happier and active with losing 157 lbs i am the lowest weight i have been since almost high school. I am enjoying life and then just feel like i got something from my past depressed self shoved back in my face. Hard to explain anymore feelings then that really.

[BlackSpinner]

I am enjoying life and then just feel like i got something from my past depressed self shoved back in my face. Hard to explain anymore feelings then that really.

Wrong view. Cpap was/is part of your recovery. It is a symbol of the on going change in your life. It is not the ball and chain, it is the cutters that helped free you.

[kaiasgram]

... I am enjoying life and then just feel like i got something from my past depressed self shoved back in my face. Hard to explain anymore feelings then that really.

Hey Laura, no need to explain more because you identified it well -- big disappointment and an unexpected, unwelcome blast from the past. We all harbor hopes about things and we have to grieve when our hopes are dashed. I remember you from last year. How ironic that your snoring husband was having such a hard time supporting you when you first went on CPAP -- is the lack of support still an issue for you and if so, is it part of why you're feeling the embarrassment you mentioned? And is it part of why you hate your mask/machine?

To me it sounds like you're going through some big life changes and definitely the road gets bumpy when we're in transitions -- even positive ones like your impressive weight loss. Moving forward almost always means letting go of something, and we need to grieve our losses. The loss of hope that you'd get off CPAP is a legitimate loss. I like the Buddhist approach to emotions which is not to fight with them but to just feel them and allow them. They have much less power to dictate our choices that way. I know people here will have a lot of good practical suggestions about hose management, masks, etc., so I just wanted to offer a little support and encouragement.

BTW I hate my cpap too (don't tell anyone), and I know at least one other committed cpap user here who hates it as much as I do, so you're not alone. The trick is to use it faithfully despite hating it, not shaming yourself or letting anyone else shame you into using or not using it. Also, make it a daily choice rather than focusing on it as a life sentence. Even at 60 I can bring myself down quickly by focusing on having to use the contraption for the rest of my life. And if it helps, after a year of using it faithfully I'm finding that hating it is sometimes replaced these days by a more peaceful sort of resignation.

Hang in there. Best wishes.

[drj130]

Hi Laura and welcome back. I can understand totally some of the issues you have when dealing with your machine. I'm currently a Soldier on active duty and I have deployed to Afghanistan with this thing. Just the hassle of getting permission to deploy was crazy. I've traveled to Russia many times with my machine (my wife won't let me in the house there without it) and just getting through the airport in Russia is a pain, trying to explain to the security people what it is and what it does, without speaking any Russian is a nightmare worthy of Wes Craven. I also was, until recently, not using my ball and chain (the machine) how I should have been.

But, when I did start using it like I should, I noticed several things that I didn't before. In the past before I started, If I took long trips, (and these aren't long at all) 3-4 hour drives or about 300 miles, I would have to stop at least once and take a nap just so that I could get back to base. I have made several long trips in the past two months, (one of them today) and didn't have to stop for anything besides some food or drink and the normal bathroom break.

In 2011, I was riding on my motorcycle with some people I know and I had an accident. Now that I think back to that day, I think I know what happened. I fell asleep while I was riding my bike. I know that I was getting ready to enter a curve, and the next I was sliding on some grass. I was ok, and there was some damage to the bike but nothing that wasn't fixable. I've learned from my mistakes and I will be using my machine everyday from now on. I'll even have some help in the form of my wife when we're together in the states. She'll wake me if I fall asleep and say "David, put on mask" (she is Russian ).

I hope that some of what I went through helps you to understand that you aren't the first, and won't be the last to have issues with this thing. (BTW, I was 5' 6.5" and 150lbs when I went and found out I had this.)

David

[kaiasgram]

David, you are an angel!

[Sir NoddinOff]

It must have been a pretty tough year for you regarding health issues etc and , on top of that, you still hate CPAP. It's kind of like starting all over at ground zero. Well, all I can say is welcome to life, mostly because so much of life is like that. You claw your way to a level where you can merely survive, then it is snatched away, only to make you start the process again. My attitude (however simplistic) is just to focus on the here and now while I plug away at my problems - BTW, I know what I'm talking about because I definitely have my share of life's problems, some of which have taken me to death's door. Good luck and I hope you find some forward momentum which gives you the strength to try CPAP once again.

[mzlaura1884]

Hi Laura and welcome back. I can understand totally some of the issues you have when dealing with your machine. I'm currently a Soldier on active duty and I have deployed to Afghanistan with this thing. Just the hassle of getting permission to deploy was crazy. I've traveled to Russia many times with my machine (my wife won't let me in the house there without it) and just getting through the airport in Russia is a pain, trying to explain to the security people what it is and what it does, without speaking any Russian is a nightmare worthy of Wes Craven. I also was, until recently, not using my ball and chain (the machine) how I should have been.

But, when I did start using it like I should, I noticed several things that I didn't before. In the past before I started, If I took long trips, (and these aren't long at all) 3-4 hour drives or about 300 miles, I would have to stop at least once and take a nap just so that I could get back to base. I have made several long trips in the past two months, (one of them today) and didn't have to stop for anything besides some food or drink and the normal bathroom break.

In 2011, I was riding on my motorcycle with some people I know and I had an accident. Now that I think back to that day, I think I know what happened. I fell asleep while I was riding my bike. I know that I was getting ready to enter a curve, and the next I was sliding on some grass. I was ok, and there was some damage to the bike but nothing that wasn't fixable. I've learned from my mistakes and I will be using my machine everyday from now on. I'll even have some help in the form of my wife when we're together in the states. She'll wake me if I fall asleep and say "David, put on mask" (she is Russian ).

I hope that some of what I went through helps you to understand that you aren't the first, and won't be the last to have issues with this thing. (BTW, I was 5' 6.5" and 150lbs when I went and found out I had this.)

David

Thank you for your kind words. I am so glad you are okay from your accidents how scary!