Sledding With Dad

Another weekend has come and gone and it was a cold one again, below zero.   I have to make a confession here, though, winter doesn't really bother me, in fact, I enjoy it.  I can't imagine life without snow.  (Does this mean I have yet another serious mental condition?) 

Screech thinks so.

When I was a kid growing up on the dairy farm, the coming of winter meant that chores could be a big challenge; doors frozen shut, tractors don't want to start, silage in the silo is frozen solid, on and on.  But the worst challenge was when our well for drinking water would freeze up.  We had a 'pump house' at the time, which resembled a dog house, and Dad would try to resolve the problem of frozen pipes by putting a kerosene lantern near the plumbing coming out of the ground, keeping the water flowing.   But sometimes the lamp would go out or the temperatures would plunge to way below zero, and we'd have no water.  It's always a shock when you turn on the tap and nothing comes out.   Cows are always thirsty creatures and need to drink.   

We had milk cans back in those days, to haul milk to and from the cheese factory, so we would take empty milk cans and head to our next door neighbor's farm and borrow water from them.  Mr. and Mrs. M were German immigrants and did not speak English very well, but they were learning.  Mrs. M watched TV as often as she could between her chores on their farm, and told me how she was learning English from the soap operas she was hooked on.  "As the World Turns" was very big back then, and I could only make out a few words here and there when she'd get going on what shenanigans her favorite characters were up to, but their names would come out just as clear as a bell.  She would wrinkle up her little nose and shake her head, rattle off some German and then say, "Ack, that Lisa wo-man.  She needs to find sense and settle down!"  

You could never leave without a jug of homemade currant or grape wine from their garden, and they made some excellent wine.  I wish I had taken pictures of their vegetable garden, too, I can only describe it as immaculate.  They had a rather large plot for two elderly people and it was situated right out by the road.  When they weren't working on the farm work, they were tending the garden, I swear they hoed and turned that soil over by hand every day.  Mrs. M never knelt to do her gardening, she always bent straight over from the waist.  To this day, every time I weed, I think of Mrs. M and her never-ending quest for perfection in their vegetable garden.  I would ride my bike past their house on my way to visit my friend and they would be hoeing and weeding, always with a big wave and a smile.  They are both gone now, and their home was razed and another family lives there, but every time I drive by, I remember the kind couple.

Anyway, back down memory lane again, we would arrive home with the milk cans full of water and using milk pails, distribute water to each and every cow and calf.  Amazing how fast a cow can slurp up several gallons of water.  While Mom and I  were watering cows, Dad would be 'pulling the well' and eventually he'd get it defrosted and things would go back to normal.  Until the next thing, and there's always a next thing on a farm.  

We did not have a barn cleaner in those days either, and had to drive the tractor and the manure spreader into the barn behind the cows and pitch the manure into the spreader by hand every morning after milking.  My father did the majority of the pitching, since it was heavy work, but my job was to scrape down the stalls and the alley and get down straw for the next day and freshen up the bedding, sweep out the mangers and clean out the cow's drinking cups and get down enough hay from the mow for the day, too.  While Dad and I were cleaning the barn, my mother was washing the milkers and the pails in the milk house.

As a kid, I loved to sled down our barn hill; it was so much fun.  And think of all the exercise....I bet I put on more than five miles a day walking up the barn hill, out to the road and back up the driveway and up the hill again.  I was basically an only kid, having a brother thirteen years older than me who was in the military by the time I was six, so I had to make my own fun.  Other kids in the neighborhood were tooling around on their family's snowmobiles, but not me.  I used to watch them zip by and be rather envious.  Though I never said anything, gosh, that looked like fun!

One day, out of the blue,  my dad took unexpected pity on my snowmobile-less life.   When he was done cleaning the barn one morning, he told me to go and get my sled and meet him by the barnyard gate.  I was confused, why would he want me to do that?  Dad was 45 when I was born and not given to coddling children in any way, shape or form; he was very strict, so this was a complete surprise to me.   But, not wanting to change his mind, I dropped the barn scraper and ran and got my trusty sled out of the garage.

When I was a kid, our road was little more than a dirt trail and we were lucky when a snowplow came down here and plowed us out after a significant snowfall.  All winter long the road was snow and ice-covered in spots with bare patches of gravel sticking out here and there.  The snow was too deep in the field down the road to actually spread the manure on the surface, so every day Dad would haul the day's manure a quarter mile down the road and make a pile for spring, when he'd have to pitch it one more time onto the spreader and finally spread it on the field.  (Farming back in the day was a tremendous amount of work, now that I'm 53 and looking back,  I wonder how he did it.)
 
Dad had pulled up to the house with the tractor and the manure spreader and was uncoiling a long length of binder twine which he tied to the back of the manure spreader with a flourish and then threw the other end of the twine to me.  I looked at him blankly and he said, "Tie it to your sled.  Do you want to have some fun or not?"

Clearly not wanting to miss out on any fun, ever, I did what I was told, and tied my sled to the manure spreader.  I guess I have to give non-farmers a little background on manure spreaders here....ah, well, as you may imagine, manure has an 'odor' to it, that's the first lesson, and the next lesson is, well, ah.....manure spreaders also leak as it's not just manure you're dealing with when it comes to cows, it's also urine (there I said it, sorry) and manure spreaders aren't tightly sealed which leads to significant drippage and leakage underneath.

But never mind about that, we're going to have some fun.


With my sled securely tied to the manure spreader, Dad climbed up on the tractor and we proceeded out of the driveway onto the road.  The bare patches of gravel were grabbing on to my sled's runners and making a lot of racket and our farm dog, Fido, was having a great time running alongside me and frisking about.  Dad could see me well enough to know I was still attached, so he shifted the tractor into road gear and we were off.  I was sledding now, let me tell you!  The tractor only achieved about ten miles an hour in road gear, so no, I wasn't flying down the road, but it sure felt like it.  I had decided to belly-flop on the sled, so my face was about six inches off the road and consequently also about six inches from the leakage of the spreader, but never mind, I'm having the time of my life!

We went zipping down the road to the pile and it was really fun, until Dad had to stop for the turn into the driveway.  We hadn't given much thought to stopping and as fate would have it, there was nothing but glare ice on this particular stretch of the road.   So, though the tractor and spreader stopped, the sled and I didn't. Good thing I had decided to lie down on the sled, I could have lost my head.

Despite dragging my feet as hard as I could, I still went sailing under the spreader anyway, and came to an undignified, very unpleasant stop only when the rope tightened up.  Um...are we having fun yet?  Not wanting to make my father unhappy because this was his idea, I carefully crawled out from underneath my malodorous 'snowmobile'.

He was clearly flabbergasted by my silliness,  "What are you doing under there? Why didn't you stop?  Come on, now, hurry up and unhook your sled so I can unload this."

I wiped some manure from my face and unhooked my sled and stood on the side of the road until the spreader was empty.  Dad then pulled the tractor back out onto the road and bid me to retie my sled to the spreader one more time, which I dutifully did and we were off again.  This time it was a bit more pleasant as there was a lot less leakage, and when we got back to the house, there was a bare patch of gravel that helped me apply the brakes. 

That was the first and last time Dad and I ever went sledding.

Snowmobiling is overrated. 



   

Walking Around in Circles

Some of you may remember my fateful meeting with my general practitioner this past fall and the discussion she and I had about walking for exercise.  Silly me had brought up the fact that I tried to walk five miles a day as a goal for weight maintenance and health benefits.  (This was before the sleep apnea diagnosis, by the way.)  I was feeling this was a Good Thing I was doing, trying to walk five miles, until I was soundly slapped upside the head and told that if I wasn't walking ten or fifteen miles a day I wasn't accomplishing anything.  (Ok, there was no 'slapping' per se, but it was rather shocking to my ego, if nothing else, lol.)

"If you are walking five miles a day, that isn't much.  And if you are, and you're not seeing any weight loss, then you need to walk more.  Once your body gets used to five miles and then ten and fifteen, you'll have to walk more than that, too."  And my doctor's next challenge was, "So, now winter is coming on. What sort of exercise will you do in winter?  You should buy a treadmill or join a health club or walk in the mall.  You have to do something and most people don't like the cold."

(Our sons' take on the good doctor's advice was that she was Grade A Certified Nuts but with an ulterior motive:  If I walk as much as they say I have to, then I'll be certain to need  knee and/or hip replacements eventually, along with foot problems........ so, see, it's a Win-Win for the medical community, keep 'em comin'.)

At the time of my appointment, I was groggy from lack of sleep, and yes, I still am now, come to think of it, so I had nothing to say for myself.  I remember sitting there, nodding my head up and down, like a menopausal bobble-headed Hula Girl on a car's dashboard, agreeing with the superbly physically fit doctor.

Doctor Knows Best.

(No, that's not her name, by the way, but for my purposes, it works, so I shall use it.)  I assured Dr, Knowsbest that I would do my best to get exercise no matter how cold it was outside.  We can't afford a treadmill (I blew all our disposable cash on the ambulance ride and hospital stay back in October, ditto for a health club...) and we live about 13 miles from the nearest mall, which would actually work out about right, I could walk the 13 miles to the mall and then turn around and head back home, thereby walking 26 miles. Shouldn't take long.  In January.  In Wisconsin.  In below zero weather. 

So, Dr. Knowsbest, you were right,  I'm sorry to report I haven't been walking fifteen, ten, or (gulp) even five miles a day lately, though if waking up (sixteen times last night) and getting out of bed and tinkering with CPAP equipment counts at all, I probably get a good aerobic workout just tossing and turning in bed. Oh, last night was a doozy, not good!  I talked to the sleep tech again today and he's going to see what else he has in his magic box of masks that may work better.  He's supposed to give me a call before the weekend and I sure hope he does.  These sleepless nights are getting old.  Carl left for work at 4:30AM because I had disturbed him just one too many times...oh, dear, I think even he's starting to lose hope.  This is just like having a colicky baby in the house.  Even worse.  A cranky sleep apnea patient with a chronic case of CPAP mask-itis. 

But I am trying to get in some outdoor exercise, walking, cross-country skiing and possibly snow-shoeing, about three miles a day, no matter what the weather.  We have had quite a bit of snow though which makes regular walking a challenge.  This past week I did something I haven't done before--I took the snowblower and made trails around some of the gardens so I can enjoy the garden in winter.  I do love winter as much as any other season; cold weather really doesn't bother me as long as I have a nice, warm house to go back to.

Care to join me on my walk this afternoon?  Screech Kitty usually does, and below, he shows us how important it is to stretch before exercising (and sharpen your claws!)

 

The Snowblower Trail takes us past the old gazebo first:

Looking past the gazebo to the west and the sunset

Then we head out past the chicken coop and the barn:

Past the east side of the Quarry Garden:

 Which overlooks the Formal Garden and the Dome:

 We keep going down the lane:

 Where we come upon the Aermotor windmill catching the last rays of the sun:

Looking back toward the barn and turning the corner, below to the east side of our property:

 

Walking past another snowy urn with a beautiful dollop of snowflakes artfully arranged:

Coming up on the tufa wall around the hosta bed that  I nagged Carl to help me move last summer--oh, it was so HOT out that day!  And the mosquitoes!  (None of them bothered me today.)

 

Finally, something GREEN in these pictures--just the wrought iron arch Carl built, but hey, it's sorta green:

 

Follow Snowblower Trail through the gate and:

What is it?  An old silo base?  A ruin?  Um......well.........more about this in another post...

past something (above) that I have to do some explaining about in my next posts---yes, it's another Procrastinatoe Project.....but I have HIGH hopes this year for it......stay tuned for an explanation in the next segment of "How This All Started Part 14,003" (or whatever I'm up to now) and we now head back past the barn--looks like Screech beat us:

 

And even though my feet are now aching with the cold, the sunset looks so pretty, so we'll take a quick walk down the road---here's the woods across from our house:

 

And our humble abode:

Heading back into the driveway (no, I didn't take the Christmas decorations down yet, need hip boots to get through the snow)

And finally, back into the nice, warm house where I tried to capture the sunset through the window:

 

But my glasses and the camera lens kept fogging up.  

So, this is as good as it gets! 

There, thank you for coming along, exercising with someone is much more fun!  We just walked about a half mile, so I only need to walk Snowblower Trail and the road a few hundred times to get my mileage for the day...

Or head for the mall.

Awww...phooey, I'm going to bed to get some sleep  rest, uh......exercise. 

Not So Much Rage Against the Machine

 I 'think' I may have started to catch on to using the CPAP therapy finally.  I'm not saying that out loud yet, because I don't want to jinx it, but for the past two nights, I actually slept fairly well, only getting up a few times and averaging about six hours of sleep a night.  My apneas (breathing cessations) are down to around four an hour compared to seventeen before treatment, which isn't great, but is still a vast improvement. 

Miscanthus in January

I was waking up about fifteen to twenty times a night the first two weeks of wearing the mask which is really tiring, though I felt better in the morning since even the little sleep I was getting was more restorative.  Trying to sleep with sleep apnea is like having someone come into your bedroom and, in my case, smother you with a pillow seventeen times an hour.  I've met people who have had apneas in the 90's and 100's an hour, and I cannot imagine what that must be like.  Talk about tired! 

Big icicle going over Quarry waterfall from our sump pump last winter

The reason I know how many times I wake up for certain is my machine keeps track of everything I do sleep-wise on an SD card and will print out a report upon request,  it's like having a spy in my bedroom. Sort of like an electronic Santa Claus if you will-- (It sees me when I'm sleeping, it knows when I'm awake, it knows if I am breathing or not, so keep breathing for goodness sake!)

If I stop breathing or slow down too much, the machine automatically ramps up the air pressure which then, in turn, forces me to breathe whether I like it or not.  At first it felt like I was drowning in air at times, the sensation is similar to sticking your head out of a car window at around 55 mph and trying to breathe (how do dogs do that??) but I think I'm getting used to it somewhat. 

I did go and see my sleep tech last week Thursday and picked up two new masks.  One was a nasal pillows type which sounds way more comfortable than it was to wear (but I think, in time, I might get the hang of that type of mask, too) and the other was the newest full face mask on the market right now, one I had high, high hopes for and one I cannot get to work for me.  All the darn thing wants to do is leak and make highly inappropriate noises  (which in sleep apnea circles are fondly referred to as 'face farts', told you it was inappropriate.)  Not only are the masks incredibly attractive, they also serenade all parties present in the bedroom during the night, too!  

Carl is still valiantly putting up with this fiasco yet and shows no signs of weakening (or sleeping on the couch)  I am amazed by his determination.  Last night I woke up around 3AM to my face mask merrily flapping in the breeze-oh, here we go again, turn on the light and try to figure out what went wrong now.

We don't have the ice cube this winter, which is too bad...the hose froze up! 

  I've spent a lot of time over on the website dedicated to Sleep Apnea and read hundreds of posts which have been very helpful, though now it's time for me to get on with life and stop obsessing.  I have a new pillow ordered (buckwheat hull-filled, no, not a Sobakawa!) especially for Side Sleeping Sleep Apnea Snoozer CPAP Users like me which should arrive sometime this week and I can't wait.  I hope it's all it's cracked up to be.  I'm supposed to be able to 'dig' holes in the buckwheat hulls for a space for my mask and shove the rest of the hulls around to form comfortable lumbar support points and then just drift off to sleep. I'm not sure how that will work, but doesn't it sound wonderful?  Hey, I can dream. 

In fact, now I can dream, and it's amazing.  Now that I'm getting some deeper, REM sleep, I have been having vivid dreams and it's been fun.  I know that sounds odd, but I haven't had dreams like this in years, and I can remember details of them quite well.  The only thing I regret is waking up sometimes before the dream is over and I don't find out what happened.  Last night, it was all about lightning and a graveyard, oh, it was vivid and not scary in the least.  I could smell the rain in the air....

I am going to call the sleep tech guy again sometime this week to see if we can figure out something to do about the masks not fitting so well.  I have until the end of January, and I am amazed to see how short of time that is!  I can't believe how the time has flown by.  Normally we would have had at least one stained glass lamp built for the winter and I haven't even started laying out glass yet.  I love winter for the change of pace it gives us here, I can devote time to stained glass and not feel guilty that I'm neglecting the garden. So what do I do?  Neglect the craft.  Before I know it, it will be time to plant my seeds for spring and I won't have even one stained glass project done for the winter.     Procrastinatoe-y again, and another thing I want to change about me; maybe I will be able to make some changes now that I'm a hose-head. 

So ENOUGH with the sleep apnea, I'll try to give the topic a rest.

Now, where was I in that dream....   

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 Cpaptalk.com, 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 cpaptalk.com 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 that...it'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, "Welllllll....no....75% 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.

Silence of the Sleep Apnea Patient

At the risk of showing you how goofy I really look and letting it all hang out (well, almost all--have to keep this G-Rated, after all) I am going to share with you what my intrepid husband and I have come up with to make this CPAP ordeal a bit more livable.  (Yes, another post about me and my sleep problem---I know--when will I get off my pity pot and on to more interesting things?)

But, see, it's a thorny problem.

  I  love the blogging community; people are so warm and caring.  Where else could I post about something as mundane as sleep apnea problems and have so many cheering me on? 

 
 I decided to look up some information on how other people live with their sleep apnea equipment and found some interesting ways people have coped, especially on a website dedicated to, what else? Sleep Apnea.  I'm glad I 'm going through this whole process in the winter, when things are slow around here anyway, because I have more time on my hands to do internet searches and improvise some stuff of my own.

I have four new face masks I am trying out.  I so wanted the nasal ones that just go over the nose to work, because even though I look much like Miss Piggy with a silicone snout, (but alas, Miss Piggy is better-looking than me) the small mask would be less cumbersome on my face.  I spent the night trying to sleep with first the smallest nose mask and then the bigger one, but try as I might, they just cut into my face in all the wrong places, most especially my upper lip and annoyed my skin terribly.  You wouldn't think something so small could be so annoying, (heaven help me if I ever have anything major go wrong with me, I'm such a baby, I know)--but the masks hurt, making sleep impossible.  I switched back to the full face mask the tech gave me in a Large size (up from the Small I had previously) but I'm thinking I may need a Medium instead.  Sigh.  The large mask goes under the chin and if I move my chin at all the air leaks out and causes the CPAP machine to go into high gear and ramp up the pressure--then I seat the mask correctly, but find it really hard to breathe with all that air pressure whooshing and I'm wide awake once again, until I reach over, hit the Off button and get things straightened out and restart the machine. 

One of the things that bothered me the most about the mask was the tight fit and the silicone face mask parts annoying my skin and leaving marks.  There's some neat padding you can buy that is disposable (and expensive) online that goes between the mask and your face, but since I don't have a lot of money to spend on more stuff, I did some digging around in the Apnea site for fellow do-it-yourselfers.   I found a pattern from one member who made her own padding from worn out t-shirt fabric. What an interesting idea!   I never mention it much on my blog, but I sew extensively and love to make clothing, so I have a stash of fabric of all types and kinds.  The trouble is, I didn't find this particular thread on the Apnea site until nearly midnight, so we had to improvise quickly as it was by now bed-time.

So, without further ado, (brace yourself!) here is a picture of me and my face mask.

OOOOPSSSSSS..........ok, that's not me....that is Anthony Hopkins portraying Hannibal Lecter.....never mind....Ok, brace yourself again:

Hey, unfair!  Hannibal's mask looks more comfortable!

So much silicone, so much digging in, so much annoyance, and this is the most comfortable mask of the four I have to choose from.  Until Carl came to my rescue with t-shirt fabric at one in the morning. (Wait, it gets better, trust me, you won't have to avert your eyes.)

"Here, Karen, put this over your face."  (Please,think of the children!)

 Ok.  Putting it over my face...

 Grab your mask and put it on.......wait, I can't see...which end is up?

Fidgeting, fidgeting....

Ah, this is much better....I look like the Unknown Comic (remember the annoying guy in the brown paper bag?) except he had eye holes, lucky dog!  Also note the polar fleece cover I sewed for the hose--according to websites that sell the covers, having a cover on your hose not only keeps the warmed air from cooling off before it reaches your face, but makes the hose look 'less institutional and soothes the patient into feeling more comfortable'.  (Hmmmmmmm.....now I suppose I'll have to sew four different covers in different colors and prints for the four seasons  so I can stay 'comfortable'. This is my 'Winter Hose Cover'.  )

As ridiculous as this looks, I had the best night of sleep so far wearing a scrap of t-shirt fabric over my face between me and the mask.  Of course, I couldn't see a blasted thing, which made having to turn the machine on and off when the pressure ramped up too high due to some unknown reason quite the experience.  I know Carl sleeps better not having to actually look at me in the mask, LOL.

See, we're getting closer to Carl's idea of a plastic bag over my head.....if I keep him up any more nights, he might just 'forget' to add a safety vent to the bag.  (I'm kidding.)

I hope.....

Luke, I Am Your Mother

I realize this hasn't a thing to do with gardening or stained glass, but I thought I'd post another update of the fun n' games that are going on here.  Things keep getting more and more strange.  After the last post I wrote about getting used to the CPAP, on Monday night I went to bed resigned to hooking up to the hose and face mask routine.  After donning all my stunning headgear, I hit the Start button and settled down into my pillows, only to hear a loud whooshing sound coming from the back of the machine.  I thought maybe I forgot to seat the hose correctly on the fitting, but no, the connections were tight; it was then that Carl noticed the hose itself had cracked where it was attached to the connector.  He came to my rescue with Scotch tape and we ended up taping the hose shut for the night.

The next morning I called the sleep tech's office again and was told that I could pick up a new hose to replace the faulty one.

"You broke the hose already?! You must roll around in bed quite a bit and possibly stressed the plastic too much,"  he said.

I had already been warned not to yank the hose by it's 'tail' when disconnecting the air hose which I had been super-cautious not to do since all the components are costly.  I didn't know I wasn't supposed to move much while I was sleeping (or trying to sleep, that is).  As long as I had the tech on the phone, I asked him if it would be possible to adjust my mask as I have to keep it on so tight it cuts into my face severely, especially across my sinuses.  If it's not tight, it leaks.  And like I said last time, when the pressure builds up to peak, I am seriously worried that mask will fly off and cause mass destruction.

"Well, we can try you with a different mask," he said.  "You have to realize the machine has a built-in accommodation for leakage, and with you having the mask on that tight, you're probably getting a bit more air pressure than you normally would receive."

I wouldn't crank it down so tight if it wouldn't keep blowing my eyelids open, and I told him so.  Very annoying, having your eyelids flapping in the breeze, this I can tell you from a first-person account.  So I was set up for a 3PM appointment.

Joel drove me to the appointment and the friendly technician gave me a new hose and then decided to have me try a different face mask; another one that is 'full face' and even cups under the chin. This whole experience of trying on different face masks for about a minute or two and from that short time having to decide if it is comfortable or not, especially without plugging it into the apnea machine and bringing it up to pressure, is pretty futile, especially for me.  It's sort of like trying to decide if a new pair of shoes will be comfortable enough to walk in for eight hours a day by sitting in a chair and looking at them on your feet without walking around for hours.  Now picture the shoes being oh, say, 6" high stiletto heels with very narrow, pointy toes in about a Size 7 when you wear a Size 9. It doesn't take long to realize, ouch, you haven't got the right fit, but unfortunately, by that time, you own the shoes, er...mask.

But, I didn't know the fit was that bad until Wednesday night.   I strapped on my new full face mask and prepared to sleep, but once again, there was a leak, this time from the fitting on the mask itself, right where the hose connected.  I tried to sleep that night with this hissing sound and with forced air blowing on my neck and chest, but it was becoming nearly impossible.  Finally, at one point, I dozed off but had a very rough night and slept around 4 hours (like I said before, the machine keeps track of your sleep and usage).  The mask cut into the bridge of my nose and pushed my face together very uncomfortably, and by morning, when I took the thing off, I looked like I'd been pursing my lips all night and had vertical wrinkles running the length of my upper lips and chin.  Oh, here we go again, yet another wardrobe malfunction!

The next morning I got back on the phone with the technician again who wasn't sure what I was talking about when I said there was a leak in the face mask's fitting itself, but he kindly set me up with another appointment for Friday.  He asked me to try using the full face mask for one more night, as it does take awhile to get used to something new. I promised him I would try it again.

I finally took the Christmas tree down on Thursday and was looking forward to Carl helping me haul all the totes of decorations back up the steps to the attic when he got home from work. Carl is a master at packing the totes away efficiently.   But when he and David came home, I could tell Carl was not feeling well.  He sat down in my chair in the kitchen and said he thought maybe he was coming down with a stomach virus.  I encouraged him to go to bed and sleep for awhile but he was right, by 5PM he was very sick.  David said he was feeling a little off too, and then Joel said the same thing, and within a couple of hours, all three of my menfolk were sick.

Because I knew I would be tossing and turning for yet another night with the noisy sleep apnea mask, I opted to sleep on the couch so Carl could try to get a better night's rest while he was sick without me there to disturb him too.   Carl said it wasn't necessary for me to vacate the bedroom, but I knew he would be more comfortable.  I put sheets and blankets on the couch, relocated my sleep apnea machine to a table in the living room and settled in for the second night with my new, noisy mask.

Now I have to backtrack a little bit; though both of our sons live at home, only Joel had seen me in my apnea get up when he took me to see the technician earlier in the week.    Until last night.  Since I was sleeping on the couch, and both of them were ill, they both had to traipse (or hustle) past the couch most of last night. I finally fell asleep with my face facing the back of the couch until around 3AM when David stopped to ask me a question.  The only source of light in the room was coming from the upstairs hallway so the couch was bathed in an eerie glow.  When Dave woke me up, I replied groggily while still wearing my sleep apnea mask.  If you have never heard a person try to talk through pressurized air pumped into a full face mask, you won't know what I'm talking about, but it's weird, to say the least.

 I am badly near-sighted and need my glasses, so I couldn't see his face, which is probably a good thing.  Poor Dave, he's already sick and must have thought he was hallucinating when his maternal apparition rolled over and faced him wearing a face mask out of Star Wars and asked in a muffled, airy voice, "David, what is the matter?" 

He stopped and stared a bit, though he recovered his composure quickly--gotta give him credit for that; poor kid.  What a shock it must have been.  Good thing he wasn't a little tyke, can you imagine the nightmares the sight of me in that thing would gave given a toddler??

Friday morning, my intrepid Carl was feeling much better and was out the door for work by 5:30 AM like always.  For him, the stomach upset was very short-lived, so who knows what it was; both of our sons are feeling a little better now that 24 hours is past, but both of them called in sick for work.

After another leaky night with the faulty face mask, I went back to see the technician again Friday afternoon and this time, he pulled out all the stops.  He brought five different masks into the room for me to try and hooked up each one to my machine so we could see how it fits under pressure.  I am now the owner of a variety of different  masks to try, which should be very helpful.  The main reason people fail to use their CPAP machines is because the face masks are so uncomfortable.  I'm supposed to try them all and see what works best for me.  I so appreciate the technician,  he's been so helpful.

Carl still says the bag over the head thing would be a good idea, and I think he's on to something there.  Maybe we will invent something that will be more comfortable, or at least some type of device that doesn't make the patient look like Darth Vader.

  We Sleep Apnea Patients have enough problems, we don't need to terrify our family members, too!

Progress---- but not Perfection

I'm kind of sad.  The long awaited machine has arrived: on December 30, I picked up my CPAP.  Carl and I had to go to the hospital and have a very patient technician demonstrate how to operate the unit and fit the face mask.  If I have any problems, I'm supposed to call him because "He's not a mind reader, he won't be there to tuck me in at night and can't possibly know what problems I may or may not be having unless I call."

After about an hour tutorial, we were on our way home with the sleek unit in its own sleek carrying case.
I was feeling a bit anxious already even though it was only 1PM and hours before bedtime.  We have a lot of money and hopefulness for my better health riding on this gadget.

Remember I said there were two camps of sleep apnea patients, the first being those who absolutely loved their machines from the very first night, who put on their incredibly unattractive face masks and slept the night through only to awaken the next morning refreshed and feeling like a million bucks? These people say the therapy has changed their lives and they never leave home overnight without their machine. 

And then the other people I spoke with, who hate the darn thing, toss and turn  and in the morning find out they have ripped their mask off in the middle of the night unknowingly and find it on the floor.   In most of these cases, their machines end up being dust bunny catchers on the shelf next to their beds as they decided the cure is worse than the illness and they have given up entirely.   

So which camp will I be in?  I can definitely say I am not in the first one; I'm not in love with the unit yet, not by a long shot.  The machine itself is extremely quiet, but the mask is something else again. 

The mask has to be on very tight so it will not leak and that it is very uncomfortable for me.  I'm going to need to put on my big girl pants and learn to suck it up, but I have to say, it's very annoying.  The machine I have is quite sophisticated and doesn't ramp up to full pressure for 30 minutes which is supposed to give me enough time to get to sleep before full treatment begins, but there's times at night that the mask slips and a rush of air is expelled that wakes me up instantly as if someone turned an air compressor nozzle on me.  It is rather startling.  Then I have to remove the stupid mask, turn off the machine and try to get the thing back on my face correctly by adjusting the velcro and elastic straps, one of which keeps crinkling my left ear in a very nasty manner--must be my ears are on my head crooked.  The machine also has a heated humidifier which is nice, but the incoming pressurized air is still cold on my face, so I am going to need to sew a cover for the hose to hopefully keep the air warm before it gets to me.  It would have been nice to use a nose only mask, but of course, the sleep technician said I can't keep my  mouth shut, so full-face is my plight.

I'm not sure if it's because I am failing to breathe correctly or what, but for the last three nights I have woken up with the pressure so high in the mask that if one of the straps were to unhook the entire contraption would probably fly off my face and become a weapon of mass destruction, taking out everything in its path.  Since I was also waking up with a very dry mouth, I turned up the humidity level last night only to find out that wasn't a good idea either as I experienced what is known as 'rain out'-- my face mask and hose were filled with condensed water and I was inhaling water droplets.  The noise was amazing, it sounded like I was scuba diving. 

And yes, believe it or not, poor Carl is still trying to sleep through all of this madness and mayhem.  I give him so much credit, he's been so supportive, helping to adjust the mask and not minding the stiff breeze from the vents on the front of the face mask blowing at him when I turn his way.  I know the machine is much quieter than my constant snoring was, but my tossing and turning is driving me crazy and I don't know how he tolerates it.  Remember I've said it before---Carl is an optimist, and he believes everything will always work out for the best.  Unfortunately, I am the pessimist but I am working very hard at trying to stay positive, this has to work, it just has to!

I don't know why, but for some reason, when I put the mask on at night, I feel so lonely.  I know it's for my own good and all I have to do is get used to it, but lying there, listening to Carl breathing easily as he sleeps while I'm strapped into this expensive contraption that is supposed to work if I could only doze off is rather nerve-wracking.  I get to thinking, 'Why can't I sleep like normal people?'  I've read that claustrophobic people have a very difficult to almost impossible time adjusting to the masks and I can see why...I'm not claustrophobic, but it is very hard to get used to.

I'm trying not to be too hard on myself or the unit, I've read it can take up to three months to get completely used to the device, and I'm not giving up.  I do seem to feel better in the morning even though my sleep is far from ideal since I wake up almost every hour to fix leaks or adjust the tightness or move the hose.  Before the machine, I woke up almost every morning with a very bad headache as a result of holding my breath and the last three days I have not had a headache, so that is something to write home about, right?  I also do seem to have a little more ambition, and hopefully that's not just psychosomatic.  The doctor said it can take a long time to make up for years of sleep deprivation and I didn't get as bad as I did overnight, so I guess I shouldn't think the cure will be overnight, either. I'm just impatient.    I wanted to be like those patients who said, "Yippee!  I LOVE this thing!  I feel WONDERFUL!"

I've heard from long-time users that once they put on their masks they immediately fall asleep, even if they take a nap during the day.  Something about the machine and the air automatically signals their brain it's time to sleep and if that could happen for me, how fantastic it would be.  Years of fighting with sleep apnea has me wired to be a night owl, delaying sleep subconsciously because that was when the battle to breathe would begin.  All I have to do is retrain my brain that it's OK to sleep now.

I'll probably have to try a different face mask eventually, too.  I will be calling the non-mind reading sleep technician back and telling him about my adventures; maybe he can come up with a solution for me.  You cannot get away with not using the machine and saying you do, either, because there's a computer chip in the machine that records how many hours you use it and if it is helping stop all the snoring and apneas.  I have an appointment with the sleep doctor in three weeks for a follow up, maybe by then, I will have gotten used to the routine.  And the mask.  I know people who have gone through lots of different masks before they found the right one, this is definitely not a case of 'one size fits all'.  And whoever designed those face masks wasn't worried about the wearer winning any beauty contests, oh my, talk about ugly!  It's a good thing this is something that's worn in the dark!  Once again, my deep appreciation goes out to Carl, who doesn't bat an eyelash looking at the hideous creature lying next to him in the morning--I am Darth Vader, hear me breathe!

I know people who won't wear eyeglasses because they dislike how they look in them, but since I've worn glasses since the fourth grade, I no longer care how bad I look in them.  I am afraid it will take awhile for my ego to simmer down about the full face mask though.  Oh my.........................

Karen's Self-Portrait: Poor Carl!

 Carl said the perfect solution would be a plastic bag-like device that would simply slip over the patient's head and seal on the bottom (no, I don't 'think' he's trying to get rid of me--plastic bags are a bit dangerous tied over one's head!) but I know what he's getting at.  Having some sort of mask that you could just put over your head without tightening all those straps would be wonderful, if it wasn't so deadly.

So, back to studying sleep---let's hope I can make this work!