I am so angry and depressed

sleeplesssue · Post by **sleeplesssue** » Sat Apr 09, 2005 9:00 am

I did not sleep AT ALL last night at the sleep study. I can't get the equipment because they couldn't titrate me. I purposefully got little sleep the night before and took no naps yesterday so I would be good and tired. I WAS tired and sleepy, but every time I almost dozed off I got a cramp in my legs, or my arms, or my neck. When I finally got comfortable, my neck wasn't in a good position and my arm went numb because of the nerve compression. I had crawling sensations in my left hand all night. The cpap wasn't very bad. I did feel a little asthmatic at first. He did have to set it at the lowest setting though. Later in the night I had to take it off my face to check if it was really doing the job though. And the infernal wires! I'd just about doze off and a wire would pop loose, and the guy had to come stick it back. Or the belts would ride up and I'd have to tighten them, or move them. I'd roll over and the cpap hose came off the mask. That happened 3 or 4 times. I CANNOT lie in one position for more than half an hour without being in awful pain. The darned wires need to be longer and taped to my legs so I can't get my legs tangled up in them and pull them off, and so on and so forth. grrrr.

And then to top it all off my MIL gave me a lecture about spending so much money because I have to go back and pay for another study now. She doesn't think this is at all necessary in the first place. After all, 30 years ago aunt Pat just put tennis balls in her nightshirt and it "fixed" her problem. (Aunt Pat isn't fixed by a long shot) This is all nonsence to her and wasting money. Her family thought it a good thing for a member of the family to just starve himself to death because he was dying from cancer. He was in a bad way, but had time left. He was miserable and it was HIS choice, so I stood by that. However, I'm making my living will today. If I get bad enough that I need tons of expensive medical care and whatnot, I don't want anybody pulling my tubes unless i am in a persistant vegitative state with no chance of recovery. I better be terminal. And I want somebody in MY family to decide if I am worth the expense to keep me alive.

So now MIL is going to gripe at my poor husband and he will get upset and gripe at me about the money, though he understands whats going on with me, and isn't complaining. Well, he complains about the bills, but he knows it can't be helped. He loves me.

Sometimes I'd just like to tell that woman to live her own life and leave us alone.

NeuroSxNp · Post by **NeuroSxNp** » Sat Apr 09, 2005 9:24 am

Just ask your sleep doc or whoever you use to set you up with an auto-titrating machine - RemStar Auto - has a smart card and a spftware system that a DME or your doc can use to find your settings.

wading thru the muck! · Post by **wading thru the muck!** » Sat Apr 09, 2005 9:39 am

Sue,

This is why I think in-lab sleep studies are not all they are cracked up to be. From a clinical sense they may provide the most comprehensive info, but on a human level they SUCK!

Are you paying out-of-pocket for these sleep studies? If so tell your Doc you can't afford it and will probably not get treated if you have to pay for another. Tell him/her you would like to get and auto-adjusting cpap and that the machine will set the pressure as you need it. You can get software that will show you just what pressure it is giving you. You can print out these reports and bring them in to him/her to see after a few weeks of using it. You can buy all this at cpap.com for about $1100 with a mask. This is much less than another sleep study. If you doc prefers a fixed pressure cpap for your treatment, tell him/her that after the auto tells you what pressure you need to resolve you apneas it can be set to be a fixed pressure machine if need be. As NeuroSxNp recommended get the REMstar Auto with C-flex. Take a look at some reviews on this machine by clicking on the CPAP reviews link at the top of the page. This will go into detail on why this machine is a good choice.

sleeplesssue · Post by **sleeplesssue** » Sat Apr 09, 2005 9:45 am

Are you sure my insurance will pay for that? What was used last night was a Bipap. I forget the name. I HATED the mask, but he said the one I get will be a lot softer. The tech spoke as if they had to order it and set it up and then get it to me, and it would take several weeks after they got my titration done. My neurologist orders these sleep studies. A slep doctor does the reading of it and sends the neurologist a report. The tech said that I'll probably have to come back with sleep medication on board. It took me 2 hours to fall asleep the first time. That is about normal for me. Now and then I do an all nighter with no sleep.

sleeplesssue · Post by **sleeplesssue** » Sat Apr 09, 2005 9:53 am

I have already met my 2500 dollar deductible for this year. The insurance is paying at 80% on the sleep studies now.

I'd like that autoset thing, If I can get away with that. I have to drive 60 miles to this hospital to see these doctors and do these studies too. MIL is just flipping out this morning because gas is 2 dollars and they are saying it's going to go to 4 dollars. If you are a farmer, it means a lot. It almost doubles your production costs. Plus, we are planting soybeans right now and laid out about 5000 for seed. Then she says the price of food is going to double too, since it costs more to grow food and move it to consumers. She's just freaking out this morning. I'm glad I came home and don't have to deal with it. You'd think after 50 years in farming she'd remember how to roll with the punches.

This is the MIL who thinks it's just plain WRONG to be asleep if the sun is shinging and be awake it it's not. (and who takes a sleeping pill every night to be sure she is asleep when the sun is not shining. sleeping is so easy for some people.

battlin_blazes · Post by **battlin_blazes** » Sat Apr 09, 2005 9:54 am

I went pretty much the same route as you did on the second sleep study, No sleep at all but instead of another sleep study they set me up with the remstar auto with the smart card so they could monitor what I'm doing on my grounds. Ask them to try this...

wading thru the muck! · Post by **wading thru the muck!** » Sat Apr 09, 2005 9:56 am

Has your doc mentioned for what reason you need to use a Bi-level machine? That would be a good question to ask. Good to hear you have insurance, you made it sound based on the MIL comments that you were paying for all this yourself. Or maybe she want's to open up her purse and help out her dear DIL See what docs have to say, ask a lot of questions like WHY? and HOW MUCH WILL THAT COST? and then WHY? again. Ask you doc if he could sleep hooked up to all those wires.

sleeplesssue · Post by **sleeplesssue** » Sat Apr 09, 2005 9:59 am

Since my deductible is met now, I'll probably try to have the surgery to repair the torn ligament in my ankle (from a fall last Nov) which the Orthopedic doctor reccomended, but the doctor was leaving for the Holidays and couldn't get me in until after Jan 1st for the surgery and so I didn't get it on last year's deductible. MIL thinks this surgery is also not necessary. The foot hurting is part of what keeps me awake, plus the pain from the neck surgery. Oh, but it would be an awful thing for any doctor to give me pain meds so I could sleep. forget taking them all day for pain. Heck, I just want to sleep! Oh no, I better see another doctor first.

sleeplesssue · Post by **sleeplesssue** » Sat Apr 09, 2005 10:08 am

As long as i'm having a pity party and gripe session, I may as well mention the permanently separated AC joint (my right clavicle...collar bone for you lay people) is permanently displaced from a fall (when I had the rotator cuff tear fall) and the only way to fix that is to cut part of the bone off and put it back in place. Plus the 2 dislocated ribs (same deal, same accident)

I am in constant pain and I don't get any sleep, and MIL is driving me banannas. It's a good thing DH is on the tractor today. He doesn't have to deal with it, until I go over to fuel him up and take him lunch in a little while.

I'm just a beaten up and battered old (45 year old) lady. It just kills me that MIL is more healthy than I am. She's 72.

Ok, maybe I'm done venting now.

wading thru the muck! · Post by **wading thru the muck!** » Sat Apr 09, 2005 10:18 am

Is MIL on the farm? That can be brutal!

Good luck! and quit getting injured!

sleeplesssue · Post by **sleeplesssue** » Sat Apr 09, 2005 10:20 am

Wading through the muck...I didn't mean to make it sound like I was paying for it all. It's just the truth. My MIL is the original scotchwoman who taught the scotch how to be "frugal." I mean TIGHT. she squeeks. DH almost does too. It's what keeps we farming folk in business. But MAN!

But you see, I don't understand paying a 280 dollar insurance premium every month to not USE it to get healthy. And well, if I'm not going to use it to get healthy, why pay for it? And if I don't pay for it, I won't get to take any of my medicines, because I take 5 or 6 of them and the CO-PAY for 2 of them is 40 dollars. And if I don't get my medicine, It will be like just opening that grave back up and falling back in it. I went with no meds and no insurance for 4 years. I was so sick, I was on the verge of suicide. I've climbed this far out of the grave, and I'm not feeling like being pushed back into it. I may as well get the gun out right now, and I'm well enough now to see that life CAN be a good thing. I don't want to do that.

But I'm NOT having that discussion with MIL. she already thinks I'm nutz (just like aunt Pat.) I really feel sorry for aunt Pat.

sleeplesssue · Post by **sleeplesssue** » Sat Apr 09, 2005 10:21 am

MIL lives in her house 1/4 Mi away. I sincerely like the woman. I just wish she'd lay off sometimes and realize that we've lived this many years without being bottle fed.

sleeplesssue · Post by **sleeplesssue** » Sat Apr 09, 2005 10:25 am

Well, maybe if I could sleep and breathe at the same time I could walk and chew gum at the same time too.

I better go cook and pack lunch. I'll be back to print out some info to visit the neurologist with. Thanks everybody.

Guest · Post by **Guest** » Sat Apr 09, 2005 10:28 am

Hang in there Sue, home titration works well for many who have trouble getting comfortable at a sleep study. However it gets done, It will be worth the irritation in the end. We will include you in our prayers.

HappyHoser · Post by **HappyHoser** » Sat Apr 09, 2005 10:31 am

That was me. My computer security settings and the login don't see eye to eye sometimes!

Mask	Humidifier