Brand new and I should be a case study with these issues

[DebiB]

Last night was really rough. I've slept horribly for several nights but last night was the worst. It hurts my neck and upper back tremendously to sleep on my back so much. At one point, I turned to my stomach to relieve my neck/back and pulled the entire C-PAP off my nightstand. UGH. And the C-PAP ran out of water again last night. I'm busting out the lanolin tonight because my nose is so incredibly raw. I actually napped, C-PAP free, for about 3 hours this afternoon. I'm dreading going to bed, as I seem to every night any more.

Everything is such a fight with the VA. They won't (currently) help with the TMJ/bruxism and they're clueless what else to do to help with the C-PAP. I do have a size small Sleepweaver mask on order but who knows when that will arrive. I have hair issues too. Figuring out what to do with my hair with all this crazy headgear sucks too (I have long curly hair that I have to put up at night). I want to give up and sleep without the C-PAP but I'm terrified of the heart issues beginning again.

Just rambling.....

[Guest]

Last night was really rough.

Is it the neck & back pain you mean by rough? If so, what was your sleeping position before cpap (bc)?

After cpap we all have to find what works for us and our mask. I now sleep on my side and find it is prob the best position for keeping my spine straight. This is esp difficult if/when you have arthritis as many positions can cause pain.

Worth mentioning that each VA has several Patient Advocates - they can help is some cases but certainly you must remember they are also Govt Employees who it takes an Act Of Congress to fire for cause, and they do know it. You just have to be very persistent and befriend someone there.

Learn how they operate and it seems they can often order things right out of a catalog - it just means that someone has to do something that day. Charm them.

[DebiB]

It's everything making it rough. Sleep is no longer enjoyable and it's stressing me out. I've always slept a little bit of everywhere, side, back, stomach. But I can't do stomach anymore, back hurts (I begin waking from pain after a few hours of sleep), and side keeps breaking the seal on the Swift plus the dang air blowing out of the vent on it annoys me and can be loud if it hits my pillow just right. Taping my mouth shut is uncomfortable and I actually fight it in my sleep. I can't figure out where to put the hose so I'm constantly fighting with it as well.

And the patient advocates at my VA know me well. As does the director and even my local congressman's military liaison. Everyone is kind to me and is doing what they can, they're just out of ideas. My issues exceed their knowledge. Dental won't see me until I get that specific disability rating higher. But no one there has much knowledge it seems. I'd like to speak to a sleep doc to discuss all this but I've yet to see a sleep doc and I guess that's not normal procedure. I do keep pushing, but it's exhausting. Especially when I'm exhausted. Plus I don't know what the hell I'm doing with this C-PAP stuff yet so I'm just taking stabs in the dark. It's all incredibly overwhelming and all I want to do is get some good sleep.

[Pap-Daddy]

And the patient advocates at my VA know me well. As does the director and even my local congressman's military liaison. Everyone is kind to me and is doing what they can, they're just out of ideas. My issues exceed their knowledge.

I certainly do understand. It amazes me how after the VA tells you they can't help you then say "Thank You for your service"

I can only say keep pressing them. You are in an excellent place here for support and experience beyond what the VA even offers. I only met one VA sleep doc who was worth seeing and she is no longer with them. Another I swore I would never be seen in the same room with again and she called her self an expert.

Not sure when you will qualify for Medicare but the best thing that happened to me was getting most of my healthcare out of the VA. I did like the no cost equipment and supplies but as you have mention there are many hurdles to jump. Many think VA care is FREE but I paid for it over 33 yrs. and when you are not service connected they do charge you for many of their services. Luckily cpap is not one of them.

I have an outstanding sleep doc now who I email my data in order to follow the Medicare requirements (6 month face-to-face) I feel I don't need that but I am much happier now too. And I get my supplies in the mail hassle FREE from Versus tho I will try that veteran owned supplier should I have any problems. cpapmedical dot com

I heard about Verus from a deployed member but I have a sneaking suspicion both may be connected somewhere.

Deb just do not give up - find another way to get what you need.

[Pap-Daddy]

I can't figure out where to put the hose so I'm constantly fighting with it as well.

While everyone has their own preference for hose management, for my money I think the Command Wire Hooks work the best and do not take up any room in a suitcase for travel.

Search for the "17067ES Command™ Small Wire Hooks", use them with a hair scrunchie or large rubber band even. Place the hair scrunchie on the hook then (using pliers) crimp the hook so that it will hold the scrunchie yet it can be slipped out with firm pressure.

Attach the command strip hook to the wall or bed frame about a foot above where your head will rest; slip the hose thru the hair scrunchie, so depending on the size of the scrunchie you may need to move the attachment point up or down to suit you.

Most people find that this hose positioning allows them the freedom to move about in bed without causing mask leaks. The scrunchie allows for movement up/down or sideways with a give & take of a light spring.

You may have to also position your cpap to accommodate the hose length but I have not run into a situation where I couldn't at least use just the rubber band or hair scrunchie hanging on to something nearby when traveling.

To me you can't find anything more affordable, flexible for use, or more compact for travel, for cpap hose management.

HTH

[DebiB]

Thank you Pap-Daddy! Glad to have a fellow vet who understands both the frustration and the struggle of being stuck with the VA. At this point, they'll pretty much order anything I ask for but it leaves me to do all the work.

And I just happen to have both the hooks and hair scrunchies on hand! Definitely trying that! I can't keep pulling my whole C-PAP off the nightstand.

Meanwhile I'm fighting with them regarding the back pain (just realized they found degenerative disc disease during my initial C & P for back pain as I was retiring and they never told me). Addressing this may help the overall pain that sleeping is.

[DebiB]

Hey Pap-Daddy, VERUS takes TRICARE! I'd still have to pay co-pays and I really can't afford them, but it IS an option! Thanks!

[Pap-Daddy]

Hey Pap-Daddy, VERUS takes TRICARE! I'd still have to pay co-pays and I really can't afford them, but it IS an option! Thanks!

Yes there is the co-pay until you get on Medicare then Tricare pays whatever Medicare doesn't. The only stipulation is that Medicare has to pay - that is unless you are overseas then the rules change. But the moral is anything covered by Medicare seamlessly gets paid by Tricare - which means there are no more co-pays.

And don't ask me why but do NOT even try to use Tricare at the VA.
You would be better off as a non-service connected vet than trying to use a military retirement benefit (Tricare) at the VA.
Also the VA has to be the ONLY hospital in the USA that does NOT take Medicare.
afaik every other US hospital is forced to accept Medicare.

[DebiB]

And don't ask me why but do NOT even try to use Tricare at the VA.

I'm an 80% service-connected disabled vet.....they cover me 100%. I mean, it's the VA, but I am covered 100%.

[Guest]

And don't ask me why but do NOT even try to use Tricare at the VA.

I'm an 80% service-connected disabled vet.....they cover me 100%. I mean, it's the VA, but I am covered 100%.

That info may help other readers thru the years.

I am not service connected but I understand there are times when treatment is provided for things that are not service connected.

The VA has come a long way but yet they have a long way to go, esp. if/when you are a traveling vet. They must manage it like an HMO cuz if you are out of state and need meds - even when you have more refills pending they don't want to provide the refills and if they do they will give you a 15 day supply and charge you for a 30 day supply. Thank You for your service.

Should your cpap mask get damaged while traveling they simply will not help at another VA, go figure, I mean Thank You for your service.

Imagine if your cpap machine just up & dies? I can't.

[DebiB]

I am not service connected but I understand there are times when treatment is provided for things that are not service connected.

If you are 50% service connected disabled, they will provide ALL healthcare. Less than 50% and they see you for the service connected issues only.

The VA has come a long way but yet they have a long way to go, esp. if/when you are a traveling vet.

I'm still fighting with the Columbus, OH VA for a bill from a civilian hospital stay back in my hometown (in Ohio) from 2015. It has to be paid through them because I was in central Ohio (I live in KY). I've had to get my local congressman involved. Asinine system.

And I appreciate the "thank you."

Imagine if your cpap machine just up & dies? I can't.

LOL! If I ever get to the point where I can actually get my issues sorted out so it actually feels like my C-PAP is helping me, I may feel that way! But right now, not so much. I should be asleep now but, as usually, I'm avoiding bed because I know it'll be miserable.

[DebiB]

I'm giving up. At least for now. I've worn the Swift longer, consistently, than ever before. I'm exhausted because I'm sleeping like absolute crap and my nose is sore and raw AND I'm starting to breakout where the pillows rest under my nose. Yes, I've been using Lansinoh. I just can't do this anymore. I'm desperate for sleep. I'm waiting for womens headgear for the Swift (for about a month now) and I'm waiting for the Sleepweaver in small.

Meanwhile, I'm pondering my next move with the sleep clinic techs at the VA since they admitted on the last two occasions that they don't know what to do with me. I may push to see an actual doctor but I suspects the tech know more about the equipment. I just don't know what else to do.

[Pap-Daddy]

I may push to see an actual doctor but I suspects the tech know more about the equipment. I just don't know what else to do.

Unless you get a tech or a doc that uses cpap their experience is only what others have told them. Docs typically know more about Dx than equipment. Techs know more about the theory of how things should work.

I had one who didn't know what a heated hose was - a VA contractor but I think he was playing dumb so he didn't have to order one for me - then again maybe not playing?

Stick around and read. Lots to read and much to learn. OSA has a very steep learning curve.

Once you get this down you won't want to ever sleep without your cpap.

[DebiB]

Unless you get a tech or a doc that uses cpap their experience is only what others have told them. Docs typically know more about Dx than equipment. Techs know more about the theory of how things should work.

The primary tech I'm talking to is a PAP user as was the tech who did my titration. I'm definitely going to request to see the doc. Is it weird I'd like a medical explanation of my diagnosis instead of just a phone call saying "you have sleep apnea, come get a machine"? That just seems logical to me.