Turning our home upside down again

Here we go!

We're about to turn our home upside down again.

But it will be oh so worth it when it's finished.

For about the past six years I've been nagging that the wood floors need to be refinished.

'Cept my lovin' husband wanted to do it his ownself (he thinks he's still 25 years old).

Of course, like everything else, the timing is just never right.

There has been reason after excuse why it couldn't be done (hunting season, too cold, too hot, hunting season, too cold, too hot ... you get the idea).

Added to the mixture was the fact that, whenever the job happened, I would have to disappear for the varathaning portion of the exercise.

Well, last week, while John and our local handy-dandy handyman sat around admiring the latest improvement around here, John made the mistake of declaring thusly:  "Well, as much as I resisted doing this, I must admit that it looks good and I'm glad we did it."  (He was referring to the landscaping that I insisted be done out back since the addition of my sanctuary.  And it IS an improvement around here.)

So, never missing an opportunity, I commented, "Yes, if only you would not be so stubborn about getting the floors done, you might find out that you'd like that job too." Or words to that effect.

Our handy dandy worker man was all over that.   "What about the floors?"

A discussion ensued about how I've wanted to have the floors redone professionally and John wants to do it his ownself yada yada yada.

I threw into the mix that the perfect time to have them done would be while we're away next week (we're finally taking our long-promised trip to SW Ontario).

Again, our handy-dandy handyman was all over that.  "John, I can do that for you while you're away."

John thought on it and decided that perhaps it would be workable.

He knows the worker.

He likes the worker.

He trusts the worker.

This is even better than hiring pros we don't know to be here when we're away.

We've now worked out the logistics (we think) of how we're going to get everything moved and out of the way (thank God for my sanctuary!) so the floors can be sanded and varathaned in our absence.

Two worker men will be here Tuesday morning to move furniture.  (In the interim, we will move all the small stuff.)  I've also arranged for the area rugs to be picked up on Tuesday so they too can be cleaned.

We leave on Thursday morning.  (Packing might be a bit of a challenge.)

The floors will be done while we're away from Thursday through to the following Wednesday.

And when we return, a worker will come back to help us put everything back together again.

Sounds like a plan to me.

Oh, and at the same time, the eavestroughing man will be here taking care of that little detail around the outside of the house. 

If we keep this up, this place is gonna look like a regular high-livin' abode.

What a day from hell I had!

Wow, yesterday was a day from hell!

It started out OK.

And it ended OK.

It was the in-between part that was horrendous.

My morning was rather uneventful as I took care of business before heading off for my first appointment of the day.  I had to go to the eye doctor for my quarterly check-in to see if we can get a handle on my ever-changing vision issue (we couldn't).

My eye doctor's assessment was that I'm definitely not seeing well, but she wasn't able to make any changes that would improve things.  Nothing she offered made any difference.  I simply am not seeing well.  We'll try again in another three months.

How comforting.  In the interim, I'll just continue not seeing well.

From there, I was going for my massage therapy.

Right.

En route to massage, I stopped in at Walmart to pick up milk -- which we needed desperately -- and a powerbar, which I also needed somewhat desperately.  (The powerbar driving the living room television and paraphernalia had died the day before so I transferred the one from my sanctuary to the more important living room, leaving me without a television in my beloved room -- can't have that!).

I was in Walmart for about five minutes, if that.

My massage therapist's clinic is less than five minutes away from Walmart.

But my car wouldn't start.

Nothing.

Nada.

Now, it has happened in the past that the car ignored me when I first tried to start it but it always responded on second try.

Not this time though.

Didn't matter what I did, that car gave not a sign of life.

And I didn't have my massage therapist's telephone number with me to let her know that I was stuck, big time!

My first call was to my home.

Fortunately John was there and I explained my situation, telling him that I would call the auto service (I'm still covered by the new car Chrysler service).  But first I had to let Pat know that I wasn't going to be able to have my massage.  Turns out she had called to clarify our arrangement (was she coming to me or was I going to her?) so John was able to give me her number by referring to the caller ID on the phone.

My massage therapist is extremely accommodating of me and she didn't have any other appointments booked following mine, so she told me to just show up when I could (assuming that I'd have the issue resolved within the hour).

My next call was to the auto service.

And while I was on the phone with them, the girl put me on hold while she called the towing company.

That's when the real fun started.

I checked to see if the car would start remotely.

It did.

But as soon as I put the key in the ignition, the car died.

Nothing.

Nada.

'Cept whatever I did next (removed the key from the ignition?), caused the alarm to start ringing.

And it wouldn't stop!

I kept hitting the panic button on the remote but that didn't turn off the yelling.

So when the girl came back on the line, there I was, sitting in my car, with it yelling at me, and she's trying to tell me that a tow truck would be along soon.  She explained  that the car would stop yelling in about five minutes.

Along came a Walmart employee, in obvious distress from the racket my car was making.

I opened the car door to tell her that I was having car trouble (not stealing the car) and she asked if I have a panic button.

"Yes," I said, "but it doesn't do anything."  I again hit the panic button and the car shut up.  Apparently it wanted me to open the door to turn off the alarm -- it wouldn't turn off while I was in the car with the door shut.  Lesson learned!

The girl on the other end of the phone advised me not to "try anything else" but to wait for the tow truck.

I decided to take her advice.

A few minutes later, a rep from Chrysler called me back to tell me that the tow truck would be here in five minutes.

Sure enough, within five minutes, the truck drove right in front of me, looking for my vehicle.  I jumped out and waved him down.

It took him about a nanosecond to determine that it wasn't my battery, but he couldn't do much except reach the same conclusion as I had -- my car was not recognizing my key.

"Do you have another key?" he asked.

"Yes, but at home," I replied.  "And I just tried to call my husband again, but he didn't answer."

I tried phoning home again and this time John answered.  I asked him to come right away and bring the other car key with him.

At least I had company while I waited for John to get there.

During this time, my massage therapist called to check on my progress and I brought her up to speed on the situation.  We decided that I would surely be at her clinic by 3:00pm. 

After what seemed like an interminable wait, John finally arrived.

He handed me the other key.

I inserted it in the ignition and voila!  Everything happened as it should.

Obviously, for whatever reason, my key was "dead."  Great, good thing that warranty is still in effect!  I guess a call to Chrysler is in order.

I thanked the tow truck driver for his time and off he went.

I thanked John, gave him the milk to take home, and kissed him good-bye.

And I went off to my by then much-needed massage therapy, where I arrived precisely as the clock struck 3:00pm.

As I lay on her table, I was briefly able to forget what I had just gone through.

Once I got home, I put in that call to Chrysler.

Yes, what I experienced absolutely means that my key is dead.

Yes, that's covered by the warranty.

And yes, they have some keys in stock.

Just stop by and bring the other key (ummm, can't get there unless I bring the other key -- that's the only way I can make my car go now).  They need the car and the working key to program the new key.  They'll take care of that for me right away.

I told him I'd see him next Tuesday -- when next I'm in Ottawa for physio.

I am soooooo impressive, indeed

I saw my physiotherapist yesterday and impressed the heck out of her.

At each visit, she always asks me how I'm doing, how my week has been, yada yada yada.

Of course, my "status" never changes much:  my hips are always sore, some weeks a little more than others; my mobility varies according to how bad my hips hurt, etc.

When I told her that I continue to do the stationary bike -- every day -- regardless of how my hips feel, she was  mightily impressed.  She agreed with me that I should continue, as long as I feel able.

And ...

I'm up to 30 minutes a day -- every day!

We discussed the pattern of my pain, all of which points absolutely to the deterioration of my hip joints (my right is catching up to the left!).

We talked about how my SI joint gets into the act as the pain increases in my hips and my gait is affected -- a natural occurrence with hip decline.

But she is so pleased that my activity level has increased to what it has, because any activity is good, and I have come so far from where I was a year ago.

I would be so much more impressed if only I could walk for even ten minutes without bringing on excruciating pain.

But I guess I have to wait until my hips are replaced before that's going to happen.

In the meantime, I'll continue with the stationary bicycle because I've finally found something that I can do without aggravating my pain.

And I'll settle for being impressive.

Happy Birthday My Little Chickadee

My daughter entered the world at 1:16pm on this date back in 1975, and what a terrific addition to this world she has proven to be.

She has grown into a marvelous young woman of whom I am extremely proud.

She is a terrific daughter and a truly fabulous mother.

But most of all, my daughter has become a wonderful friend.

We live about an hour's drive away from each other, so we spend great lengths of time on the telephone, laughing and carrying on about anything and everything.

We exchange e-mails fast and furiously; we used to play around on MSN but now we just pick up the telephone and communicate in the more comfortable way for us.

We will actually send an e-mail or leave a voice mail to let each other know if we won't be available for our nightly telephone chat!

If my offspring hasn't heard from me in -- oh, about a half day or so -- I'll receive an e-mail that starts with, "You don't call, you don't write ..." which just cracks me up!

Nobody can get me laughing the way my daughter can.

My daughter is the kind of person who anyone would be honoured to count among their friends.

I'm glad she's mine!

Happy Birthday, my little chickadee!
"Love you up to the sky and back again"

"You, light up my life ...

Remembering my Brother John

Today marks the one year anniversary of my brother John's passing.

He was only 56 years old.

He had been diagnosed with lung cancer earlier in the the year and lost his battle a mere six months later, after a valiant fight.

Brother John was the seventh of eight children -- but only the second boy among six girls. In the 1961 photo below, that is my hand on his shoulder. (Do you suppose he's holding his hand over his mouth in wonder at what he's in for with the realization of his birth place in the family of six girls and two boys?) 

By the time he came along, after one boy and five girls, he was a welcome addition to the family.  Growing up, with five older sisters all acting like other mothers, he was especially tight with his one younger sister.  They were seldom apart as children and shared a friend-pool throughout high school.  In fact, when the baby of the family relocated to Kitchener/Waterloo in 1978, it didn't take long for him to make the decision to move his family to that area.

John married in June 1973, and his first daughter was born a year later.  He and his wife actually lived with me through the summer of 1974, with their infant daughter, and oh what a heat wave we were having!  I recall sitting outside in our very small yard trying to get relief from the August heat but there was none to be had.  We would sit up through the night, talking and reminiscing, rocking his daughter, hoping that she would at least drift off for a while.  It was a brutal summer!

His son was born only four months after my little chickadee came along and we visited back and forth often.

When I returned to work after my little chickadee's arrival (at that time, maternity leave lasted all of six weeks!), my brother John would pick me up every morning to deliver my daughter to the infant care centre so that I wouldn't have to take the bus with her. I recall that it was an especially heavy snow-fall that winter of 1975/76, and he never missed a morning!

Once he moved out to Southwestern Ontario, our contact became less frequent. In fact, the last time I had actually seen my brother was five years earlier at our niece's wedding.

He had relocated to Fort Erie several years ago, a considerable drive from here, and my health issues had prevented me from making the trip (any trip, actually) because I simply cannot travel.

In the intervening years, his first marriage had ended in divorce while his children were teenagers, and he remarried, welcoming another daughter to the fold in 1993.

By the year 2000, he was the father of three (one boy), and grandfather of three (all girls), so he was still outnumbered by women, but he was  fiercely proud of his family.  His youngest grandchild is not in the photo below, which was taken in 2008.

Throughout the summer of 2010, he enjoyed visits from family members and close friends, many of whom he had not seen in several years. My little chickadee was able to make the trip and he was delighted to see her.

He was especially pleased to have the opportunity to meet my little chickadee's family (Pauple and his daughter were also there), having only met my beautiful boy once before (at the aforesaid niece's wedding five years earlier).

My brother John with my beautiful boy -- July 2010

Remembering my brother John.
Robert John Cherryholme

8 Mar 1954 - 27 Aug 2010

Oops, I've been remiss again

I guess I've been rather neglectful of late, insofar as this blog is concerned.

Sorry 'bout that.

I've not been very well organized the last while, so I'm not accomplishing much on any given day.

In fact, I'm finding that the days are being frittered away without much effort at all.

On Monday evening, I developed a tremendous sore throat, from what I know not.  But I really landed under the weather very suddenly.  By 7:00pm, I was calling my physiotherapist's office and cancelling my appointment for the next morning.  I just knew that I was not up to the round trip to the big city.

Good thing I made that call too.  Because on Tuesday, I was blotto.

Couldn't move a muscle!  So I didn't.  I had what was obviously an enforced day of R&R and I guess that was just what the doctor ordered.

Because on Wednesday, I was fine.  Or at least as fine as I ever am.  But I chose to use the day for another day of R&R.  I'm reading a really good book and decided to continue lolling about, enjoying the down time.

Yesterday, I finally took the time to catch up on the bookkeeping -- which ended up taking me all morning because I took phone calls that used up the hours without my noticing how much time I was really spending yakking.

And last evening, we went for dinner at the Mill Street Crepe Company -- you know, the place I've tried to get to twice before?  Third time is the charm.  John's cousin and his wife met us there and we had a lovely meal before going across the street to check out the Memorial Quilt commemorating British Home Children in Canada.  That too was an interesting presentation.

Today, I hope to achieve something of merit.

I need to tackle all those documents I downloaded last week.  The job won't get done I don't get started.

The ecstasy and the agony ...

You know what's wrong with having a passion that involves long hours of sitting?

It wreaks havoc with bad hips.

And my genealogical digging just happens to require long hours of poring over documents, sometimes rarely  providing a single golden nugget of success.  But in the past while, I've found too many nuggets to mention here individually.

Oh yeh, I've had a tremendously successful ten days.  None as successful as last Friday though, when I discovered that my grandfather had another brother -- my granduncle Michael.

Because of my very unco-operative hips though, I tend to work in spurts -- computer; housework; rest; computer; exercise; rest; computer... .  You get the idea.

Yet, in spite of being careful to "pace myself," my hips scream.

Of course, it hasn't helped that this past weekend also involved an unusual amount of extra sitting time too.

On Friday, we had dinner guests so we naturally sat around chatting that evening.

On Saturday, we drove up the valley to visit one of John's cousins.  That involved a one hour car trip, followed by several hours of sitting around (but a delightful visit it was!) and then the one hour trip home.

Suffice to say, by yesterday by hips weren't working at all!

And I didn't help the situation much by still being drawn to the computer to continue with my research.  (That "free trial" expires on Tuesday and I want to get everything I can from it.)

So here I sit today, having slept fitfully last night, wanting so desperately to get on with this research project.  But my hips are burning oh so badly.

Methinks it will be much slower going today.

And tomorrow, the last day of that free trial, is physio day -- so there definitely won't be much researching going on.

Sigh.

I don't even want to think about the hours I still need to put in at the computer to process the many documents I've downloaded in the past ten days!

Double sigh.

It's them, it's actually them!

I've now proved conclusively that my maternal grandfather (Samuel Sharpe, son of William Sharpe and Catherine nee McKeowan) indeed had a second brother, about whom we had no knowledge -- until now.  (And now I also know that my great grandparents were in fact still alive in 1911.) 

I didn't have to wait a month for a birth certificate to arrive either.

It took me about an hour after finding the 1911 Census reference on Friday (interspersed with preparing for dinner guests later that day) to find the definitive proof that I needed to claim the family as mine.

Turns out that Ancestry.com has recently added the christening records of several Catholic parishes in Liverpool to the many other records that are available to be searched.

So off I went looking for Michael Sharp(e), born to parents William and Catherine in about 1894 in Liverpool.

Up pops a reference to a child named Michael Sharpe, born July 1894, baptised at St. Joseph's parish.  Father Gulielmi Sharpe; mother Catharinae McKeown.  (Catholic records were historically kept in Latin.)

Now here's where my Catholic upbringing and resultant familiarity with Latin paid off in spades.   I knew before I opened the image that I had a hit because I knew that Gulielmi is actually William; and obviously Catharinae is Catherine!  (Of course, the McKeown reference was a dead give-away!)

My heart was racing as I opened the actual image that proved the existence of yet another unknown branch of my tree.

And there, just to add that extra piece of credence to the story, was the notation that the child's godfather was Michael Murphy -- the man who six months later would marry Catherine's sister, Mary Ellen McKeowan. 

(Ancestry.com. Liverpool, Lancashire, England, Catholic Baptisms, 1802-1906 -- St. Joseph's Parish)

This discovery happened about three minutes before our dinner guests arrived.  I was still pumped when they came through the door.  Luckily, they are very familiar with my passion and were sensitive to my hootin' and hollerin' and carryin' on like a mad fool.  (Genealogists experience a tremendous 'high' when they make a find of this nature.)

So, now I'm busily trying to find out what happened to this mysterious new-found grand-uncle.

Unfortunately, the name Sharp(e) in Liverpool is like Smith in so many other places.  And I don't have to tell you how common the name Michael was/is with the Catholic community!

My work is cut out for me now!

I found them, I found them!

After all this time, I think I've finally found my great grandparents on the 1911 UK Census!

I can't be 100% sure yet, of course, until I locate corroborating evidence.

But that will only take me about a month to do.

And oh it's gonna be a very long month indeed.

You see, I found a properly-named couple, of the right age, the precise occupation, married for the right length of time ... but the family size doesn't correspond to what I knew (up 'til now).

The couple I've found has a 16-year old son about whom I had no previous knowledge.

One of the more helpful aspects of the 1911 UK Census is that it asked how long the couple had been married, how many children had been born to the marriage, as well as how many were still living and how many had died.  

And this couple, of the right given names and the right occupation, married in the same year as my lost ancestors.  They declared that they had three children, all of whom were still alive.  But only one was in the household on the night the census was taken -- the one who until now was unknown to me, the one who would have been their middle son.

I already have their other two children's entries for that census.  Their eldest son was married and living with his in-laws.  Their youngest son, my grandfather, was at an Industrial School for Boys, from which he would eventually be shipped to Canada as one of thousands of British Home Children.

So, how do I go about finding out if my grandfather actually had a second brother?

I order the birth certificate for the child in question (I have the reference I need) and sit back and wait for the mail.

When it arrives (these things usually take about a month from the time of order until landing in my mailbox), it will confirm whether or not the named child was born to the same parents as my grandfather.

If the child proves to be my grandfather's brother, then I will have finally confirmed that my great grandparents were still alive in 1911.

And I will also know that I have yet another branch of that line to pursue because ...

Whatever happened to that brother?

Did he marry and have a family?

Are there living descendants -- more new cousins -- who don't know that they have relatives in Canada?

Might they know when their elusive ancestors died?

That is one huge brick wall that I can't seem to get over -- I have not yet proved that my grandfather was  orphaned when he was sent to Canada.

Have I ever mentioned how much I love genealogical research?

Truly out of sorts

Wow, am I ever out of sorts today.

Can't seem to get started at all.

I've had a few rough nights, which could explain my state.

Been taking the CPAP mask off in the wee hours and going back to sleep without it.  Not sure why I'm doing that, I just am.

And I'm obviously not getting the restful sleep that I had been getting when I was leaving the machine on all night.

'nough said.

The answer is fairly obvious.

Leave the damned thing on and know that I'll feel better than I am right now.

Duhhhhh!

My massage therapist will be here at 1:30 today to give me my much-needed massage and she'll whip me right back into proper shape.

And then all will be right with the world again.

Will my surgery EVER happen?

I finally reached my surgeon's office yesterday.

Needed to let them know that my medical record should show that I do in fact have sleep apnea (that was one of the questions on the intake form).

Before I could tell her the reason for my call, she asked me when I had seen the doctor.

"May 18th of this year," I said.

"Not before May of next year," she replied.

"I'm sorry," I said, "I'm not sure I understand what you mean."

"Your surgery won't be before May of next year," she repeated.

"Oh, I'm sorry to hear that," I said, "but that wasn't what I was calling about."

Then our discussion continued to cover the matter of my apnea.

Turns out it's not a problem (which I knew it wouldn't be -- just knew it needed to be part of the record).  I should just let them know at the pre-op meeting, whenever that happens.

But on a lighter note, I AM on the cancellation list and sometimes that moves quickly.  Apparently some people keep postponing.  I assured her that I would not postpone -- when I get the call, I'm good to go.

She suggested that it might not take all that long then.

Yeh right.  Perhaps March instead of May?

Looking for my dead people

As any follower of this blog knows by now, "looking for my dead people" is what I call my genealogical research hobby.

It's obvious isn't it?  They're my relatives, and they're mostly dead.  (I'll admit, a fun aspect of the hobby is accidentally finding living descendants of proven ancestors -- new cousins.)

I've been spending the past while trolling through the 1911 UK Census returns trying to find various and sundry members of my family whom I know were alive at the time.  (All three of my British Home Child grandparents were still in Britain in 1911.)

After wasting several days going through the pages one by one at Ancestry.com (the pages are free to me with my subscription but they are not indexed), I decided to check out sites at which I don't have a paid membership.

Both Genes Reunited and FindMyPast offer access to the 1911 UK Census.  And both sites offer free indexed search capabilities which make it so much easier to find the references I need.  But I refuse to pay the usurious charges they want for actual access to the information.

On Thursday, when I went to the FindMyPast site to check a reference, I noticed that they were offering a 14-day free trial with full access to all their records.  (The expectation is that, once you find out how fabulous their service is, you will want to buy it.)

Bingo!  I signed on until August 25th and in two days I've already downloaded a myriad of census detail about my dead people.

Suffice to say, I've been having a blast!  Filling in holes; adding twigs to my tree; clarifying information.

I've calendared August 23rd to remind myself to cancel the membership, lest they renew automatically at their usurious prices.

But until then, I'm busy searching through the 1911 UK Census, looking for my dead people.

I'm confident that by the end of my 14 day free trial, I will have gleaned all the information I need from them, and then some!  

How I really spent my birthday

My little chickadee feels that I should update everyone on how my birthday day truly unfolded yesterday.

You see, I didn't actually spend the day being pampered, indulged and all around treated like a queen.

It was a day like every other day.

John went for the newspapers and once I had read them, I got up and served him breakfast.  (Can you see what's wrong with this picture already?)  Good thing pouring a bowl of cereal and making toast is not too taxing for my royal body on my special day!

Then we got a call from the electrician who had done the wiring and installation for my sanctuary.  Remember the ceiling fan that didn't work?  It now works.  Took him all of twenty minutes to find the problem and correct it.  Ta da!  Nice cool, comfortable sanctuary now.

I spent the rest of the day amusing myself on the computer looking for dead people (that's what I call my genealogical research hobby).  I'm having great fun trolling through the pages of the 1911 UK Census looking for various and sundry members of my family (and actually finding some too).

My little chickadee, Pauple and my beautiful boy arrived around 5:30 with my car and I collected many hugs and kisses.

We visited for a bit and heard all about their camping holiday, then we headed out to have dinner at the Mill Street Crepe Company.

'Cept we got there and it wasn't open.  It only opens for dinner Thursday through Sunday.

Damn!  That was my second unsuccessful attempt to try this place.

We ended up going to the same place where we held my 60th party last year.

It wasn't crepes but the company was good!

One of these days, I'll get to that crepe place -- third times the charm isn't it? 

Thoughts of a precious little girl

I was born on this date 61 years ago.

A precious little girl named Caylee Marie Anthony was born on this date six years ago.

Unfortunately, Caylee Marie died by mysterious circumstances before she saw her third birthday.

She's already been gone for more years than she was alive.

I followed the case of this little girl closely, not knowing why it entranced me so.

But right from the get-go, I was taken with the story.

A mother who lied about her daughter's where-abouts for fully a month.

A mother who partied while her daughter was missing.

A mother who failed to report her daughter missing.

A mother who fabricated wild tales about her daughter having been stolen from a park.

A mother who ...

And finally, the child's decayed remains were discovered, with duct tape over her mouth; the body wrapped in the very Winnie the Pooh blanket from her own crib.  Discovered in a garbage bag, thrown in a ditch to be devoured by wildlife, hopefully never to be found.

You can read the details of the case on Wikipedia, or just google the child's name.  She's world famous now (so is her mother).

On July 5th of this year, Caylee Marie's mother was found not guilty of murder.

The prosecution had failed to prove its case beyond a reasonable doubt.

So now Caylee's murderer -- whoever that may be -- goes free.

And in Orlando, Florida, what's left of Caylee Marie Anthony rests without justice; a life taken way too soon.

Justice has failed ... but Judgement remains.

Caylee Marie Anthony
9 Aug 2005 - 16 June 2008

Hug your children today and every day.  Make sure they know how much they are loved.

Birthdays are so much fun

I love birthdays, don't you?

Yesterday, we had a birthday party for moi.

It isn't actually my birthday until Tuesday (August 9th) but I violated my own rule this year.  (More on that later.)

We kept it small, which made it manageable for me.  I really find it quite discombobulating if there is too large a crowd.  Makes it difficult to actually visit with any one person, so I usually feel like I saw no one.

By keeping it small, I managed to spend quality time with good friends.

Made for a very nice day (my 33rd 29th birthday, part I).

And because it wasn't actually the day of my birthday, John had no problem allowing me to do the prep, the serving and the clean-up.  Had it actually been the day of my birthday, he would have had to be in charge of all that.

You see, my rule is:  I only celebrate my birthday on the actual date of my birthday.  The only day that matters, in terms of my birthday, is the actual day of my birthday.  So when August 9th rolls around, that is my day.  And on that day, I am to be indulged, pampered, and just all-around treated like a queen.

Obviously, in order to respect the spirit of that rule, had we had my party on the day of my birthday, it would have had to be a catered event because I cannot possibly be expected to do the prep, the cooking, the serving and the clean-up on my special day.

The other part of my rule?  Having a party on any other date does not supersede the requirement that my actual birthday be marked as a special day.

So, what are we doing on August 9th, you ask?

Well, it just happens that that's the day that my little chickadee will be returning my car to me.  (She has had my vehicle since last Tuesday for their annual holiday to Sandbanks Provincial Park.)

John, my little chickadee, Pauple, my beautiful boy, and I will celebrate my 61st birthday (oops, I mean my 33rd 29th birthday, part II) at the Mill Street Crepe Company in Almonte.  I've been really anxious to try the new restaurant and this will be a perfect occasion to do so.

I can think of no other persons with whom to share my special day than those who are most important in my life.

These cursed hips

I've got a pair of hips for sale.

Any takers?

You can have them for a great price, really.

In fact, I'll GIVE them to the first taker.

Cuz I sure don't want them any longer.

That wonderful steroid injection has definitely run its course and my hips are wreaking havoc with my life again.

The constant, nagging pain is back.

The need to use that stupid stair lift is back (while the steroid was working, I was able to bound up and down the stairs like a teenager again!)

The slow, deliberate walk is back -- making me appear to be many years older than my actual age.

I was finally waking in the morning feeling refreshed and raring to go, thanks to the CPAP machine.

But just as that was kicking in, the benefit of the 'roid stopped.

And my sleep is again disturbed by the pain of the cursed hips.  So it seems that I've resorted to sleeping on my back as a permanent solution to the hip pain.

Both last night and the night before, I was wakened by John nudging me to tell me that I had to "fix the machine."  The mask had slipped off my chin causing the machine to make an awful racket -- enough to wake the dead ('cept it didn't wake me!).

In actual fact, my chin had slipped out of the mask, seemingly as a result of my snoring action.  I guess I'm a real heavy duty snorer when supine!

Now, logic tells me that the obvious solution to this latest problem is a chin strap to force my mouth closed for the night.

Doesn't that look like a fun thing to add to what I'm already wearing?

Sheesh, it would take me forever to get out of the gear if I had to do so in a hurry!

Oh the joys of trying to find balance.

When did they say that surgery might be happening?  I'd really like to be able to sleep on my side again.

Pay it forward

A year ago today, a child was born sleeping.

You can read her story and understand why her parents are asking the world to "commit a random act of kindness" in Annabelle's memory today.

Annabelle Angel - 3 August 2010

Cursed leg/foot cramps

I had a rather rough night last night.

Damned hips!!!!!!!!

Ended up sleeping most of the night on my back because neither hip would allow me to stay asleep for any length of time.  (My AHI this morning was up to 7.2, after being down to 2.6 and 2.1 on previous nights.)

I tell you, that surgery can't come soon enough for me. (Although I'm scared out of my wits to have the surgery, I'm anxious to be rid of the pain.)

And my leg/foot cramps have come back with a vengeance too.

Like I needed that.

Now, it's entirely possible that the cramping has more to do with the fact that I didn't have a massage on Thursday.  (How dare my therapist take a holiday!)

It's more than passing strange that I didn't have my weekly massage on Thursday and the cramping returned on Friday night.  Hmmmmmmm.  Wonder what the connection might be?

Obviously, I need those weekly treatments.  Good thing my therapist is back on the job this week!

None of these developments has stopped me from putting in my 15 minutes on the stationary bike ... yet.  It's becoming increasingly harder to get that time in, but I'm sticking to it.

Sorry for the long absence

OK, OK, stop yer nagging!

I am soooooooo sorry I haven't posted in the past five days but life has been getting ahead of me.

It seems that once my hip pain takes hold, it takes over.  Everything just takes so much longer to accomplish.

And when stuff takes longer to do, the days get shorter.  (Think about it.)

Anyway, I'll bring you up to snuff now.

Monday -- I have no idea, now, what I did on Monday.  It's too long ago for me to remember.  Sorry about that.  (Just kidding.  I spent the day doing genealogical research.)

Tuesday -- That too is a long time ago now, but I do know that I was busy getting ready for the next two days.  (I also spent a good deal of the day doing more genealogical research -- when the bug gets me, it gets me good.)

Wednesday -- I went into the big city for my physio appointment but before I had that therapy, I saw my ENT specialist.  I wanted his input about my apnea issues before my final visit with the sleep doctor the next day.  Turns out I have a "large tongue in a small throat" and would greatly benefit from the CPAP.  He did offer an explanation for my severe dry mouth though.  On examination, it seems that my salivary glands are a tad deficient.  He offered that it could be genetic, but it is also a function of aging (yup, another thing to which the aging population can look forward to enjoying), arthritis, and fibromyalgia.  As well, dry mouth is definitely a side effect of the drug Lyrica, which I take to treat my fibro.  And of course, the CPAP treatment just exacerbates dry mouth.  He recommended that I continue with my ever-present water bottle but add hard candies to my routine (yucko!) because it is important to stimulate the salivary glands as much as possible.

Following all my medical appointments, I went to my little chickadee's place to await their arrival home.  Pauple washed my car while we went to my hairdresser's so I could get beautiful again, and then we went for a fine dining experience at Wendy's Restaurant (MBB's choice).  We spent a quiet evening enjoying each other's company before everyone headed off to bed for the night.

Thursday --  We got an early start by going to our usual haunt (Denny's) for breakfast.  (I've been taking MBB there since he was an infant -- the staff have known him all his life and greet him by name as we walk in.)  After breakfast, I stopped in to visit my good friend, LC, for coffee and catch-up chat.  She has just returned from her annual trip to Mexico and I was anxious to hear how her family is doing.  Then I was off to take care of my CPAP business.

First, I had to go see rep guy for a print out of my report to take to my sleep doctor.

Then, I had to get to my sleep doctor for my scheduled appointment to discuss my progress after the one month trial on the machine.  Based on my report of feeling so much better in just two weeks (I don't consider the first two weeks as a valid test since they were disastrous until I switched to the APAP unit), the doctor had no problem prescribing continued treatment.  And fortunately, I met the criteria for the APAP vs the CPAP (not everyone does so I was lucky, she tells me).  She gave me the prescription, told me to ask her office clerk for the necessary paper work that I would need for my insurance company, and said that she didn't need to see me again, unless I was having trouble.  It was nice knowing her!

Then back to the rep guy to actually buy the machine.  Now that was an interesting exercise.  And the paperwork!  But I left an hour later with a bag full of goodies and a brand spanking new ResMed S9 Autoset.

By the time I got home at 3:30pm yesterday, I had had the biscuit!  But I didn't go to bed (or sleep) until about 9:00pm (OK, I nodded off during the ball game ...)

And now you're current.

Oh, today, Friday. 

Thus far today, I've read my morning newspapers.  I made John his big breakfast (that's usually a Saturday affair but I have plans tomorrow that preclude my making his breakfast so today was in lieu of).  I've folded the load of towels that I threw into the laundry last night, and I've done my 15 minutes on the stationary bike.  And I've written this blog.

Now I have to get down to business (telephone calls, bookkeeping, and updating calendars with appointments) so I can get back to doing the fun stuff (genealogical research).

Later.

Seems the party's over

Yup.  The steroid shot seems to have run its course.

Six weeks and three days.

Sigh.

Woke up this morning, severe foot cramps.

Wow, haven't had those in quite some time.

Got up out of bed and thought, "hmmmm, something's not quite right this morning."

John commented that I wake up now appearing to be quite refreshed, very different since I'm on the APAP machine.

He wasn't very pleased to hear that while the machine is apparently doing its thing, the steroid has run out.

I actually kind of suspected it by yesterday when my left groin was giving me fits.

Couldn't get comfortable, no matter what I did.

And my SI joint was getting in on the act too.  A dead give-away!

Today, I can pretend no longer.

The party's over.  I'm back to that persistent, nagging tooth-ache-like pain in my groin with every movement.

Sigh.

All good things must come to an end.

But did it have to end so soon?

I wasn't finished enjoying my time in heaven.

I had plans.

Now, I have to come back to earth ... and wait.

That surgery call can't come soon enough for me.

Feeling better yet?

This APAP therapy would seem to be working, I guess.

I'm certainly getting a lot more sleep than I ever have.  So "better rested" should start to kick in any time now.

Actually, truth be known, the "better rested" must already be registering with my brain because I'm only nodding off once during the day now -- usually about mid-day.  The first of several nod-offs used to start early morning while I was reading the newspaper.  That's progress, isn't it?

My AHI is just under five (4.5 - 4.9) each morning so I'm still having episodes but not as many as before I started the therapy.  (And the improvement isn't as dramatic as it was in the first week with this newer machine, when my average AHI was 3.9.)

Every morning, John asks me if I'm feeling any better yet.

I don't know how to answer that.

I'm stilll aware of the frequent awakenings.  The biggest difference is that I simply go back to sleep immediately -- the awakenings don't disturb me now by keeping me awake for any length of time.

And I NO LONGER GET UP TO GO PEE.  That is huge as far as I'm concerned.

So, I guess I should be responding that I am feeling "better."

But I'm still waiting for the day I awake and actually feel better.

You know, like a normal person. 

Like I want to get up and go.

Now, I might be expecting too much, being fibromyalgic and all.

Perhaps I have to put it all into perspective.

Do I feel better than I used to, before I started using the machine?

Absolutely.

Do I feel as good as a person should in the morning?  Fully rested?  Ready to conquer a full day of activity?

Nooooooooooooooo.

Why not?

Because I'm fibromyalgic (with bad hips) and I might not EVER feel that good.

Plus, of course, we have this stupid heat wave that is impacting on us.  And if I compare my response to last summer's heat wave to this one -- yes, I feel MUCH better.  At least I'm coping much better with this round of high temperatures.  I'm not having the night time asthmatic episodes that I had last summer.  And those attacks were directly attributable to the heat wave.

So the machine is having a positive effect all around.

Yes, I guess I'm feeling better, all things considered, thank you very much.

Six weeks ...

Today marks six weeks since that steroid shot, and it's still holding up, thank you very much.

I'm starting to see signs of it's waning, though.

Like, my leg is objecting to being extended (ie long strides).  Now, it had been objecting to very long strides all along but I've noticed that I'm being forced to take shorter and shorter strides all the time.  So I'm walking more slowly now than I was a week ago.

That kind of sucks.

But there is still no pain on impact.

My physiotherapist tells me that because the pain is evident on extension, that is another indication that the problem is in the joint itself.  Score another point for diagnostic proof of the need for hip replacement.

Obviously, I'm not going to enjoy the same twelve weeks of heaven as I had with last year's injection.

Oh well.

You can't have everything.

I'll take what I can get.

From the way things are progressing now, I will predict about another two weeks of bliss.  That would be eight weeks of relief, total.

Not bad, all things considered.

If I'm right, I should be in agony again just on time for my birthday.

Let's hope I'm wrong and I get at least nine weeks of relief, allowing me to enjoy a pain-free birthday celebration.

OK, OK, yes I like to dream big.

On another front, the CPAP/APAP rep guy was delighted with our meeting on Tuesday.

My average AHI for the week is down from 10 to 3.9 -- "mission accomplished," as he declared.

The new machine is working precisely as he had hoped it would.

I'm a lot more comfortable with the new machine too.  The heated hose has solved the issue of condensation in the mask, and the dry mouth is lessening each night.

Turns out that just over half of my apneas are central (as opposed to obstructive).  He tells me that there is nothing he can do about central apnea (coming from the brain).  The machine only addresses obstructive apnea.  I will have to discuss the CSA with the sleep specialist when I see her.

I'm wondering if we should be bringing my neurologist into this discussion.  Seems to me if I'm having central sleep apnea, that is a matter to be addressed by my neurologist.  Perhaps my seizure medication is not doing its job adequately?

The fact that I'm having central apneas kind of explains a lot for me, I think.  Like, my difficulty with anaesthetic perhaps.   And the problems I have with most sedatives.  I've always said that it's like I "forget to breathe" when I'm given stuff like that.  Sounds to me like that's exactly what's going on.  But it's called central sleep apnea and I can apparently have episodes during non-sedated sleep as well.  I'm surmising.

The sleep specialist will make the final decision next week as to whether or not I continue on this therapy.  That decision will be based on the report she receives from the respirologist combined with what I tell her about how I feel having used the machine for a month.

As far as I'm concerned, the first two weeks of the trial didn't count since they were a disaster.  I've really only had one week of trial so far.  And I will have had another week of trial by the time I see the sleep doctor.  She will have to rely on two weeks' trial for her assessment.

I'm already sold on my need to continue with breathing assistance.  I hope the sleep doctor agrees.

My adventures with the CPAP/APAP

Things are going much better since I was switched to the APAP machine.  I think rep guy might be onto something.

The heated tube makes a tremendous differerence to my comfort level (and this unit IS actually much quieter than the other).

I love the fact that I can check each morning to see how I've progressed too.

For instance, the respirologist told me that I had been averaging 10 apnea events per hour and he wanted to get that number down to below five.

In the first five nights of using the new machine, my AHIs (apneas/hypopneas index) have been:  9.9; 3.4; 3.9; 9.0; and 3.7 respectively.  So, we would certainly appear to be on the right track.  I'm not sure why the bump back up to 9.0 on that fourth night, but let's assume an anomaly for now.  Time will tell.

It will be interesting to find out how long my breathing has been stopped during these apneas too, because I've had a couple of quite frightening experiences that I'm anxious to discuss both with the respirologist and the sleep specialist.

Last Thursday night (well, Friday morning) at about 1:30am, I woke in serious distress.

I was struggling to get air.

Dying, to be sure.

When I finally reached consciousness, I became aware of the dry mouth (damned, cursed dry mouth again!) and managed to get my mouth open, lick my lips a few times to get the saliva going, and take a few gulps of air.  Then I lay there and let the machine do its work, pumping air into me (and I was drinking it in for all it was worth!).

It took several minutes -- what felt like forever -- to get my lungs feeling comfortable.  It was like they had seized.

Of course, my heart was racing because I was really quite alarmed by the experience.

I thought the machine was supposed to prevent those occurrences?

The same thing happened on Friday night (Saturday morning), at around the same time too.  It just wasn't as dramatic.  And the next morning, my AHI was up to 9.0 -- obviously, I'd had a difficult night.

Last night was passed without incident, thankfully.

The common denominator, of course, is that both times when these events occurred, I was sleeping on my back.  Last night, I remained on my side most of the night.

Now, I know that historically, I only had issues if I slept on my back.  The sleep specialist's original recommendation was that I would be OK if I could "learn to sleep non-supine." 

But my point is -- I NEED to sleep supine a lot of the time.  (That's what started this whole thing, remember?)  That need will increase as my hips worsen (especially when I have the surgery and through the recovery period).

As I understand it, CPAP/APAP therapy prevents breathing cessation regardless of sleeping position.

Perhaps I'm expecting too much, too soon, of this APAP therapy.  I don't know.

Remember "The African Queen" ?

Our back yard, just out the kitchen window, is noisier than the sound effects from that wonderful 1951 movie.

We have an abundance of newly-fledged Rose-Breasted Grosbeaks whose screaming and begging would rival the SFX and Bogie for the Oscar, let me tell you.

We had no idea such tiny creatures could create so much racket.

There must be 15 or 20 of them because we have at least five families nesting here, with an average production of about 3.5 babies per family.  The population explosion is a result of our having decided to leave the suet feeder out all summer, rather than taking it in as we usually do.  Hence, the colourful birds have stayed with us rather than moving off into the Grove to raise their young.

Bonus for us!

Except these guys scream from dawn to dusk.  Enough to wake the dead I tell you. Sometimes, their crying drowns out the television in the next room.

It's really something to watch the performance the young ones put on too.

If they are on the ledge alone, they'll feed themselves.  But as soon as an adult bird shows up, they become incapable of feeding, and the crying starts.  (Sometimes, they're eating and crying at the same time.)

Usually, it's the male that gives in and feeds them, probably because he can't stand the racket any longer (much like the human race?).  Mom -- like Moms everywhere -- can ignore the whining.  She likely figures it's time the young started earning their own way.  Which, in this environment, isn't too difficult since we're spending a king's ransom keeping them in feed.  I recently observed an adult male trying to ignore the cries of the young bird.  And the young'un actually charged at the adult, insisting that he feed him! 

We often wonder if these birds might have difficulty when it's time to leave for the south -- they'll truly need better survival skills than are required around here.  At least they'll have good fat reserves!

The Pileated Woodpeckers are interesting to watch too.  They come several times a day to entertain us at the suet feeder (they are the reason the feeder stays filled all summer).  Often, they announce their arrival from the distance (almost like they're saying, "Clear the way, here I come.").  And they always say goodbye when they leave.  (I like to think they're saying, "Thanks for the great meal.")

Combine grosbeak screams with the hyena laugh of the Pileated Woodpeckers, shrieking jays, moaning doves, rattle-chattering Wood Frogs, and the haunting songs of the Hermit Thrush, Virio, Oriole, Crested Flycatcher -- and you'd have a fabulous sound track to embellish the scariest jungle movie.

Not to mention the Sapsucker pounding on the eaves of our steel roof (you'd think he'd have realized by now that he's not making any progress).

Or the Barred Owl that, from time to time, does his "who, who, who-whooooo are you?" about 2:00am just yards from the bedroom window.

Friends like to come by for sundowners on our porch because it's so peaceful and quiet.

Yeh, right!

It's like a trip on The African Queen.

Five weeks and counting

Today marks five weeks since that steroid injection in my left hip joint.

And I continue to enjoy its benefits.

Everyone who sees me has the same reaction.

"How come you're walking like a normal person?"

"You get THAT much mobility from one shot?"

It is truly amazing.

And to think that I can expect this degree of mobility after my hip is replaced!

My weight loss efforts aren't happening though.

In spite of the increased activity (and there's LOTS of increased activity) my weight simply isn't budging.

Guess I'm just gonna have to cut back more on what I'm eating.  (I really don't eat all that much but a woman's gotta do what a woman's gotta do ....)

My right hip is starting to object to the increased activity though.  But I'm kind of ignoring its complaints right now.  The pain is just a nagging ache and not yet unbearable.

In any event, I'm going to enjoy the benefits of this mobility while I can because unfortunately, it will end.  And when it has run its course, I will again have to endure that God-awful pain and lack of mobility until the surgery happens, whenever that might be.

In the meantime,

Heaven ...

I'm in heaven...

Apparently, I DO have Apnea

I went to see the CPAP guy yesterday to get my readings since last I saw him.

Ooops.

I'm having some serious apnea events and we have to do something about it!

My breathing cessations are lasting as long as 33 seconds.

That's too long, which means I need more pressure.  He'll increase it to 14 (the original prescription from the lab was for a pressure of 12).

And I'm having an average of 10 apnea events per hour.

That's too many.  Which means that I in fact DO have apnea, in spite of what the sleep lab results showed (at the lab, I only had 2.8 events per hour).

We discussed my problem with dry mouth (and the totally contradictory phenomenon of drooling at the same time).  He is perplexed.  (I explained about my doctor's theory that I must have been made on a Monday.)

He wants to get my apnea events down to five or lower so he gave me a different machine.

I am now using an APAP -- Automatic Positive Airway Pressure.

This is one smart baby let me tell you.

It has a heated tube so that the air temperature is controlled to a precise setting, totally eliminating the problem of too much condensation building up in the mask (and drowning me while I sleep).

It is 80% quieter than the CPAP machine that I had (and I couldn't hear the other one!).

If there is minor leakage at the mask, it will adjust for that.  I need not worry about it.

And it adjusts the pressure level to what I need, as I need it, according to my breathing.  The CPAP was providing the same pressure all night long (continuous pressure vs automatic pressure).  Rep guy will be able to confirm my optimal pressure range from the reports it provides.

I can check the unit in the morning and it will tell me if the mask was on properly AND it will tell me how many apnea events I had per hour.  So I can find out each day if I'm making progress.

Cool!

I can honestly say that I slept much better last night than I have in many.

I certainly slept a lot more comfortably.

I still woke several times though.

And I still had dry mouth, just not quite as bad as it has been.

But one thing I was acutely aware of was that I was able to breathe through my nose using this machine.  I hadn't been able to do that with the CPAP (perhaps the continuous pressure was too much for me?).

And my apnea events per hour last night were only 9.9 -- woo hoo, I'm making progress!

This machine will provide another beneficial report too.  It will tell us if my apneas are coming from an obstruction in the throat (Obstructive Sleep Apnea) or from the brain (Central Sleep Apnea).

Now that's one smart machine!

In any event, my more restful sleep last night may have been the cumulative result of having used the CPAP for the past week.  (Perhaps I would have hit this progress level even had I not switched machines.)  Or, it may be because of the switch to the APAP unit.

Whatever the reason, it is more progress and that, my friends, is a good thing.

I see the rep guy again next Tuesday so he can find out how I'm doing with these latest changes.  I'm sure he'll be impressed.  I might even be down to only eight events per hour by then!

Yet more progress

I'm still progressing with the CPAP unit.

At least I've made it through two more nights with the mask.

On Sunday afternoon, I fell asleep in front of the television for about an hour, just before the ballgame started.  I woke up on time to see first pitch though. 

Falling asleep in front of the television is a no-no, apparently.  Now that I'm using the CPAP, if I need to nap during the day, I'm supposed to go to my bed, hook myself up and sleep with that danged thing on.

Yeh, sure.

In your dreams, baby.

Anyway, on Sunday night (well, Monday morning), I ony managed to leave the mask on until 4:30am.  That's when I woke and decided that I'd had enough.

You see, I'm still waking far too often.

For what, I know not.

But when I wake, I'm acutely aware of the dry mouth.  And the fact that I need to scratch my nose -- something that is impossible to do with that stupid mask on.

I did manage to go back to sleep, without the mask, until 6:30am.

And I fell asleep in front of the television again -- this time for about a half hour around 2:00pm

Ooops.

And we had dinner guests last evening (step-son and his wife) and I was truly fighting to keep my eyes open through the dinner chatter.

Ooops.  Guess my daytime sleepiness score isn't improving much yet.

Last night, I left the mask on all night.

Today, after my physio session I again take the machine to the rep guy.

It will be interesting to see what the readings are this time.

I'm not yet feeling better than I was before I started using the CPAP.

But at least I'm feeling better now than I was in the first week on the machine.

And that is progress.

I'm almost there

At least, I guess I'm almost there.

I've passed two consecutive nights keeping the CPAP mask on right through.

Yup.

Kept it on all night long.

Woke several times, mind you.

But I didn't remove the mask.

I persevered in spite of adversity.

On Friday night, I woke numerous times to reset the humidity level since I was still very dry mouthed and/or getting too much condensation.  Just couldn't seem to hit a happy medium.  And I didn't feel particularly rested yesterday either.  In fact, whilst I was reading my morning newspaper I was falling asleep.  Obviously, the machine has not yet impacted my daytime sleepiness score.

Last night, I again woke numerous times although I think I have the humidity level at the proper setting now.  I'm still dry mouthed, but not nearly as bad as before.  And there is only minimal condensation in the mask.

I'm sure there is not supposed to be any condensation, and one should not have dry mouth at all.  That is something the respirologist might have to address in more detail when I see him on Tuesday.  I don't know what other humidity level I can try.  If I turn the humidity any lower, I still have dry mouth and the colder air aggravates my asthma.  Can't win for trying!

At least I'm leaving the machine on all night now.  That's progress!

And today, I don't feel any worse than I did before I started with the CPAP.  That too is progress because last week the machine was definitely impacting me on the negative side.

So I would expect that each night should improve and perhaps by the time I see the rep on Tuesday, I might even be able to report that I'm feeling better.  That would be tremendous progress indeed.

Suffice to say that as things stand now, since I'm tolerating the unit all night long, I guess I'm going to continue with this experimental treatment for the rest of the month.  There is no good reason to pull the plug now that I'm not feeling and worse for wear.

Based on reports from other users, and from the experts, I have every reason to expect that I should start feeling the benefits before too much longer.

I won't find out if I don't stick with it.

Here we go again

I had another disastrous night with that danged CPAP machine last night.

Rep guy had called me yesterday and put my mind at ease about the broken unit; no problem, he would replace it if I wanted to drop in whenever it was convenient.  In the meantime, I could just use the elastic band to hold it in place, and he recommended changes to the humidity setting that he thought might help me.

After putting in a day on only about four hours sleep, I was fairly well done for by about 7:30pm (fell asleep and didn't even see first pitch!).  So I hobbled off to bed around 8:15pm.

Got myself all prepped and hooked up and hunkered down to go to sleep.

And every time I exhaled, the machine gave out a low whistle.  Turns out my elastic band wasn't holding the cover quite tight enough.  So I dug out some masking tape and jerry-rigged a temporary fix.

It kind of worked.

Sort of.

At least I went to sleep.

Only to wake at 11:30pm, desperate for moisture, coughing (or trying to cough), and aware that a headache was setting in.

Off came the mask.

For the night.

I wasn't going to take any chances of having a repeat of my first night with the machine.

Woke again at 2:00am and John asked me why I didn't have the danged thing on.

"Dry mouth," I replied, "and it gave me a headache again.  End of experiment."

When I woke for the day at 5:00am, I still had the headache (and wasn't yet fully recovered from the dry mouth).

I took two rapid release extra-strenghth Tylenol and hoped that would take care of the headache.

It didn't.

When John got up, I asked him if he'd take me to the rep guy right after breakfast so he could replace the faulty humidity chamber unit.

Before we headed out, I took a Maxalt to rid myself of the obvious migraine that had developed.  By the time we were on our way, I was starting to feel much better (wiped out, but better).

We arrived at rep guy's office just after 9:00am this morning and he had already started his session with his first appointment, so we had to wait until that was over.  But he saw me immediately he was finished, and it didn't take him long to exchange the units.  He took the time to look at the results from last night which confirmed that there had been a steady leak -- obviously from the chamber cover not being closed properly.  He wished me luck with the new unit.

I see him again on Tuesday next week, for our regularly scheduled appointment.

God, I hope I'm functional by then!

Last night was a disaster!

Well, last night was a disaster.

When I put the CPAP machine together yesterday (after having taken it to see the rep), the chamber cover would not lock. Every time I closed it, it popped open again. On inspection, I noticed that it was broken. (It obviously had not been broken prior to my having taken it to the rep, and it must not have been broken while I was there because he hooked it up and tested me at the higher pressure level, albeit without water).

Anyway, I decided to try it without the catch, and as soon as the water heated up, the cover would bounce open and the machine started whistling -- that just wouldn't work. So I secured the lid with an elastic band and tried again.

With the higher pressure, and the tube wrapping, and the tighter mask, I was ready to go. Almost immediately there was water dripping on my face (inside the mask). No leakage whatsoever, but definitely water inside. Humidity too high? I turned it down. Still water dripping on me. That is unbelievably uncomfortable (and it was worse than it had been at the lower pressure level).

I tried about four times (wiping myself up and drying the inside of the mask between attempts) and the same thing happened each time. So I gave up in frustration and just tried to go to sleep.

Sleep eluded me though cuz I'm concerned that I will be held liable for the broken chamber cover.

I certainly did not abuse the machine but I have no idea what happened to it or how it got damaged.

I left an emergency message for the rep this morning.

Not sure how we proceed from here.

I don't have Sleep Apnea

But I DO need to use the CPAP machine.

What I have is known as Upper Airway Resistance Syndrome (UARS), "a type of sleep-disordered breathing associated with arousals from sleep. The symptoms and causes are similar with obstructive apnea, but the patient doesn't stop breathing in sleep; he wakes up before any attempt of breathing cessation." 

Not only are the symptoms and causes similar to apnea, so too are the consequences of non-treatment, and the treatment.  UARS is treated with CPAP therapy.

So, rep guy (who is a respirologist) addressed my concerns about the excessive dry mouth. (Although the unit seemed to be performing properly for me, there were numerous leaks each and every night during the past week.)

I apparently had numerous apnea and hypopnea events each night, but he wasn't convinced that the readings were accurate, due to the high level of leakage.

But the readings did convince him that the pressure was not sufficient for my needs so he increased it (but only by one for now).

He wrapped the tube with a cover to help prevent condensation since I need the humidity set at a higher level than might be optimal (he assures me that will change as I learn to breathe through my nose).

By the way, he was agreeable to allowing me to follow the strategy I proposed (putting further testing on hold until September) but he ended up convincing me to try the unit for one more week before putting that strategy into play.

I came away from today's meeting with a much better understanding of why I have a history of difficulty with anaesthetic and my fear of same is now much lowered.

When he was explaining that I have UARS, he commented that I would present a challenge for anaesthesia.

Naturally, I jumped on that, and told him that anaesthesia most certainly is a challenge for me.

He said that he meant that getting a breathing tube down my throat would probably be difficult because of the physical obstruction presented by my airways.

I told him about my experiences waking up from surgeries not being able to breathe, and he assured me that those incidents would not repeat themselves.  Now, immediately that I arrive in the recovery room, a respirologist would be waiting for me, ready to hook me up to my CPAP machine.

Our discussion convinced me that this is a therapy with which I should continue.  My survival could depend on it.

My CPAP Strategy

OK, so here's the deal.

Seems I'm not tolerating that blasted mask for more than four hours tops.

The past few nights have been passed in shifts.

Admittedly, each night the shifts get longer.

I've been wearing the mask for a few hours; removing it for a few hours; putting it back on for a few hours.  Then it's time to get up for the day.

Last night, there was only one shift with the mask.  I managed almost four hours before I had to rip it off.  Just couldn't bear it any longer.

The dry mouth that it induces is ridiculous.

So too is the sweating around the perimeter of the mask.

Not to mention the itching.  And when my nose itches, I can't get at it without removing the stupid mask!

As I've already said, I'm not convinced that I'm a candidate for CPAP.

But I don't think it's fair to pull the plug just yet, especiallly since I've not actually spent a full night with it on yet.

I'm simply not prepared to forfeit what little time I have left to enjoy the benefits of the steroid injection.

Soooooo, when I see rep guy tomorrow, here's what I plan to propose we do.

I'm going to suggest that we put this experiment on hold until September, which will allow me to enjoy my summer.

By that time, the benefit of my sterioid shot should have run its course.

The weather should also be a little more amenable to whatever discomforts the current heat is adding to the mix.

Then perhaps we might get a better read on whether or not my snoring is an issue that needs to be addressed.

Now, I have no idea if my plan is workable without again going through another sleep lab.  I'll be seeing the sleep specialist at the end of July and would obviously have to own up to what I've done.  She may or may not concur with my strategy.

But it's my strategy and I'm sticking with it.

It's the 4th of July

Happy Independence Day

to all my American friends and relatives

My CPAP update

So, this CPAP experiment isn't very promising, if you ask me.

On Friday night, after waking for the fourth time, I took the damned thing off at 4:30am and went back to sleep for a couple of undisturbed hours.  Woke at 6:30am feeling better refreshed than I had all week.  But on an encouraging note, when I checked the machine, there was no "high leak in last session" message.  So it would seem that I'm at least making progress.

Last night, I woke at 11:30pm and removed it because I couldn't bear the dry mouth.  When I woke at 2:00am. I thought I'd try it again, so on it went.  But at 2:30am, I was awake -- the dry mouth was worse than ever.  I turned the machine off and checked the reservoir.

Oops.  I hadn't put any water in it before retiring.

My bad!  I corrected that boo-boo, donned the mask again, turned on the unit and drifted off to sleep.

By 5:00am, I'm awake again because of dry mouth.

What in hell is it going to take?

I'm not at all sure about this experiment.  (I do seem to have resolved the leak issue, though, since again this morning, there is no error message.)

My good friend, RLR, who has been using a machine for two years now, tells me that it took her a good six weeks to adjust and start to feel better.

Well, folks, I don't have six weeks to invest in this.

I mean, in the long term, of course I have six weeks. And if I actually had sleep apnea, I might be more inclined to stick with it.  But my problem is one of snoring and we're doing this to find out if snoring is impacting on my daytime sleepiness factor.

It's just ... the timing is bad.

You see, I have a finite amount of time during which to enjoy the benefits of that steroid injection.  It's been three weeks already, and one of them has been lost to this experiment.

Should it take me another five weeks to figure out the CPAP issue, that would suggest a majority of my "heaven time" being lost.

Last year, I had twelve weeks of heaven from the steroid shot.  I may or may not get that long this time.

I'd like to enjoy all the weeks available to me, not waste the bulk of them struggling with the CPAP machine.

However, I do want to give the CPAP a fair assessment before abandoning it as not worthy.

Oh what a conundrum this presents.

HAPPY CANADA DAY

HAPPY CANADA DAY!