Wednesday, January 12, 2011

The Silence is Broken, Again!

Ok, so I'm still going to talk about the sleep apnea thing again...can you tell it's taking over my life?  I will stick some pictures from the gardens in here to break up the monotony, but it's winter here and well, the gardens are rather monotonous too, being Monotone White.  (Except for Screech Kitty in the picture below, who is also on the fence about my therapy--he doesn't want to look me in the eye, he's afraid my mask is still on)
"Is it safe to look?"

One of the things I'm finding since using the CPAP is I dread going to bed.  I know, how silly does that sound?  I'm being a Big Chicken.
Just like our chickens dread walking in snow, I dread trying to sleep lately!
So, you may remember I said I joined an online forum called, and posted my first question over there today on being a newbie and having a bit of a rough time.  I asked about masks and a bunch of other stuff and was amazed and gratified at the answers I received.  And, just like here on the blog,  the encouragement.  And a bit dismayed by some of the fellow patient's histories I read about the sleep techs and doctors not being all that interested in the best treatment (or not understanding it).  Some people have found that after the Durable Medical Equipment people sell you the machine and toss a mask or three your way, all they and the doctor are interested in is if you are still using the machinery, not in how well it is working for you.  Apparently as long as a patient is compliant, the DME's and the doctors just get paid by the insurance company.  Really?  (Gads, I'm naive, I hope MY doctor isn't like that!)  They encouraged me to become more bold and ask questions and take charge of my own therapy, because it's my life, and they're right.  But I'm going to have to wise up and fast; there's a lot at stake and a lot to learn! 

'Golden Raindrops' crabapple with 'George Peabody' thuja occidentalis in background

 One thing that made me uneasy about the sleep tech is when I asked him what mask he thought was the most comfortable and how to deal with the pressure changes.  He shrugged, "Couldn't say, I don't have sleep apnea, and I've never worn a mask or used a CPAP."

Well, ok, at least he was honest, but, again, really?  Wouldn't you think they'd try on at least one mask so they could know what their patient is up against?
Pinus parviflora 'Glauca' on Quarry Hill
 However, I suppose there are exceptions to every rule.  I remember going for a mammogram last year and the technician who was taking the x-rays was a little bitty 20-something year old girl.  I thought, "Oh, boy, now I'm in for the squishing of a lifetime," and prepared to be mercilessly flattened out like a pancake, but to my surprise, she was very gentle and considerate.  I told her I appreciated her skill with the machine, especially since at her age, she had never had a mammogram.

"It's true, I've never had the x-ray part of the mammogram," she said, "But when we are in school we are required to go through the 'squishing' part so we know what it feels like."

I was amazed, what a good idea to train techs as to how something feels so they know what they are putting people through.  Of course, there are many Ob-gyns who have never had a baby, too, and heart doctors who have not had heart surgery, etc....but I don't think it's asking too much of a sleep tech to strap on a face mask and see what it feels like so they know what people are complaining about. 

Snowflakes on seed head

And yes, I'm complaining, AGAIN.  I called the sleep tech Tuesday afternoon and told him the masks are still giving me trouble (even though the t-shirt fabric helps, there's still fit issues) and posters over on told me to ask for different mask types and made some excellent suggestions and asked me how my machine was set up.  There I had a problem, because I didn't know the settings or even that I had access to user data.

When we picked up the machine two weeks ago, I was told by the sleep tech, "You don't need to know what the settings are, or how this works, so don't try to get into the machine and mess around--the settings are prescribed by your doctor and you're not to worry about that.  Just bring in the SD card/chip before your appointment with the doctor and we'll print out a report at that time.  Your doctor will take it from there.  I won't be coming to your house to tuck you in at night, so if you have any problems, you'll have to call me.  I'm not a mind reader."   (No, you're not, but you could strap on a face mask, oh Mighty Karnak the Magnificent.)

But then, from the helpful forum, I find this has happened to many of them, being told to stay out of their own data, but they didn't.  And they encouraged me to grow a pair, too.  I was told there's things I can do to make this machine a bit more user-friendly.  Armed with this knowledge, I dug around online until I figured out how to get into the advanced screens and was able to get some very important information so people on the forum could help me understand the machinery much better.  I didn't make any changes to what the tech entered into the machine, but I still felt a little guilty and said so on the forum.  I was told no CPAP Police would be coming to my house to arrest me and after all, it's my machine and my health. And if I have to answer to a potentially crabby technician for opening the proverbial Pandora's Box, so be it.  I don't know if he'll be upset or not, but I imagine he won't be thrilled since I didn't follow orders.

The older I get, the less I seem to want to 'just follow orders'.  Too bad I didn't get more gutsy earlier on in life, but it's not too late yet, by gum.  (Ok, by gum?  Wow, HOW old am I?)

 The bad part is at times I feel trapped by a machine I'll have to use for a long, long time to come.  Much like a vole under the snow, like in the picture below.  Do you see the long tracks?  We are being overrun with voles (or maybe it's mice, not sure) this year, judging by the tracks under and over the snow.  I was out cross-country skiing on Sunday when I took this picture and noticed odd markings in the snow right over the mouse/vole tracks.
What looks like boot tracks are actually feather marks from a hawk or owl dive-bombing the vole's trails.

No, the raptor was not making snow angels, he was being the Angel of Death.

Wonder if the mouse survived? 

But the trapped feeling is transient and hopefully, over time, will evaporate for good.  I read other people describing the recurring dream of being a stuffed turkey, and I laughed out loud over's true!  Sometimes, the sensation of too much air forced into my lungs makes me feel stuffed, too.  I have to learn to breathe with the machine and not against it.  Many people suggested using 'nasal pillows' for my next mask...gee, that sounds comfy, doesn't it, but we'll see how it goes.  The headgear looks much less cumbersome, if I can get used to having plastic 'pillows' shoved up my snout.  I'm hoping my sleep tech has some on hand so I can at least try them. 
Bosnian pine on left and 'Yellow Ribbon' thuja occidentalis on right.  Aermotor windmill in the middle.

I asked the sleep tech if I was being super-annoying.  (I don't know why I ask questions I know the answers to, but I did it anyway.)

  He said, " of the time, patients are good to go with the first face mask, and then there's some patients I see so often I feel like something's missing if I don't talk to them every day.  So far, I'm only talking to you about once a week, so you're not the worst one I've ever had.  It's not unusual for people to go through three or four masks until they find the right one.  I'll call you tomorrow and we'll see if we can set up a time for you to come in again."

I didn't remind him I'm already on my fourth mask....shhhhhhh.... let's not and say we did, ok? 

I'd better make tracks off to bed.  Time to wrassle with the new-fangled contraption again, by gum.


Alison said...

Big Hugs, Karen! You are dealing with this ordeal the right way, empowering yourself by learning as much as you can. Sounds to me like you were right to open up the machine and check on the data. I've always thought the best policy when you're ill is -- The more you know, the better off you are. I'm glad you have such an encouraging bunch at the CPAP forum to help you out.

Also, what amazing photos of the raptor's feather impressions in the snow!

Don't mind a bit hearing the latest chapter in your sleep apnea saga. Wishing a good night's sleep for you SOON!

Gatsbys Gardens said...

Karen, your garden looks beautiful in the wintertime. You have lots of structure to add interest.

I am surprised you can even sleep with the tube and the mask. I know sleep apnea can be serious if it is not treated but you would think they could come up with something less cumbersome. I am glad you joined a group online, it will help keep abreast of the latest interventions.


Anonymous said...

Your garden is beautiful in the snow, you should get out there more often. Your comment was funny about being a big chicken, because the hen you pictured really did look like a big chicken.

lifeshighway said...

I love the raptor marks in the snow! I don't see a lot of snow here and I have never seen any evidence of wildlife except for the frequent deer tracks.

xoxoxo said...

Wow--- feather marks in the snow? Love it! Wish I had more daylight hours to see these tracks when it does snow here.
I love reading this story--you make it sooo good, but I want it to END... for your sake!
You are the customer--you GET to be annoying :) They get paid to deal with you-ahahahahha!

Toni - Signature Gardens said...

By gum, you sure have an entertaining way of sharing the trials and tribulations of your sleep -- or lack thereof.
The feather tracks in the snow were THE coolest! Sorry mouse. I hope your next meeting with the tech is productive!

Sandy said...

I totally understand what your going through.. I'm guilty of not using mine because "It's a big pain in the arse"!! Don't tell my cardio doc because it's good for my CHF....
Don't beat yourself up about this and just do the best you can because it's good for your health.. but then as you, I thought about it all day and it made my going to bed a nightmare!
keep up the good work!