Sunday, January 31, 2010

MY New Treatment Plan

So I've devised this new treatment plan for me.
Without my doctor's input or permission, you realize.
He will have his chance to comment when I see him at the end of February and report my findings to him.
Here is what I'm going to do and the rationale for the approach.
My doctor wants me off Cesamet, at the rate of .5mg a day each week but I have already altered that schedule to .5mg a day every two weeks.  I have communicated that change to my doctor and he has not called to tell me not to slow down the weaning schedule.  The reason I slowed it down is because wth each reduction in dose, my pain level is increasing such that I feel I need to let my body adjust to that new level before reducing the dose again and further increasing the pain.  I just figured if I didn't let me adjust to one level of pain before thrusting myself into a higher level, I might never get caught up.  I guess my doctor agreed with me; or at least he didn't see any reason to tell me to stick to his original schedule.
You will recall that the whole purpose of going off Cesamet is to see if my appetite returns.
Well, with the first reduction of dose (from 4.5mg/day to 4.0mg/day) we noticed that by day ten I did in fact have a bit of an appetite.  But I still couldn't eat any amount of food without experiencing the abdominal discomfort and/or pain, the bloating, the gas, the burping, the whole nine yards.  And if I persisted and ate beyond that point, I felt like a stuffed pig (the way one feels after Thanksgiving dinner or Christmas dinner) after eating practically nothing by most people's standards.
But, since the second reduction of dose (from 4.0mg/day to 3.5mg/day) there has definitely been an improvement.  I am, without a doubt, eating more at each sitting and I'm doing it without experiencing any of that discomfort or pain.  Now that is progress.
I can honestly say that as of today, I am eating far more in one sitting than I could have eaten in a complete day a month ago.  Now that is progress.
So, based on that development, I have decided that I will continue at this level for another week as per my originally revised schedule.
But, and here is where my NEW treatment plan comes in, instead of decreasing it further at the next stage, I am going to bump it BACK UP to 4.0mg/day to see if I can replicate the symptoms of discomfort again.
Otherwise, how can we definitively say that Cesamet is the cause of my gut problem?
Why am I conducting this experiment, you might ask?
Because I'm starting to suspect that perhaps the whole problem was caused by a dosage issue.
Just as I can't tolerate Lyrica beyond 300mg per day, perhaps I can't tolerate Cesamet beyond 3.5mg per day (or I can't tolerate it beyond that level because I also take such a high dose of Lyrica).
I hope I'm not lulling myself into a false sense of comfort here but, on a slightly more positive note, I have started dropping pounds again.  So I'm gradually moving closer to my goal weight and I'm no longer concerned about the weight loss because now I'm eating.  It helps that there have been so many tests done recently to rule out sinister causes for this nonsense, making it a little easier to relax about the situation. 
Of course, I also can't discount the role this stupid "bowel protocol" is playing in promoting weight loss, regardless to what I eat.  It's keeping me close to a washroom and in quite a state of discomfort most of the time (different from all my other "pains" -- it's a wonder I can keep them all straight, isn't it?) but I'll continue with it until next time I see my doctor.
By the time of my next appointment at the end of February, I'll have lots of good, helpful information for my doctor.

Saturday, January 30, 2010

Odds and Ends

It's been a few days since I've posted here and for that I apologize most sincerely to my fanbase.
Each evening, I would see that you had been checking in faithfully but I was just too tired to put anything up.  Normally, I try to post something in the morning before I get busy with my day but this past week has just been a tad hectic.
So, here we go.  I'll try to catch you up on what I have been doing and then we'll go from there.
On Wednesday, I had a physio appointment in Ottawa so I left out my "bowel protocol" med that morning.  I am still responding to the treatment with frequent unannounced "attacks" that I can't risk when I'm driving to the city.  Now, the point of this treatment is to promote motility and it is intended to be used every day to be effective.  However (and I warned the doctor of this possibility because I've "been there, done that" and my  memory of these incidences is much better than his) my body does not tend to respond by the book (like that's a surprise to anyone).
In any event, on those days that I have to be out of the house, I do not take the stuff.  Plain and simple.  Even then, I have some very close calls so I know where the washroom is of every place we visit.  I don't know how much longer this experiment has to continue before the doctor will agree that perhaps my system simply cannot handle this regimen.  It's been almost a month now and all it does is keep me very close to a washroom every day instead of just occasionally and has added dizziness and weakness to the equation.  So what the hell is the point of that?  We'll have an interesting discussion next month, to be sure.
Following my physio visit, I stopped in at "my" computer shop with my laptop to have a few issues addressed and to say hi to my boys.  I've been shopping there since before it was a computer shop -- they started out as a little hole-in-the-wall TV outlet and my first colour television was bought from them.  I have never bought a computer anywhere else.  There have been many changes over the years and now the children, whom I call "my darlings," are running the show along with some partners who have also become very special friends.
Naturally, I'm always quite tired once I get home from a trip to Ottawa so I don't usually do much else on those days.
Thursday was an interesting day in this household.
We took delivery of our new 55" wide screen high definition TV.
Now, we bought the television back on December 29th during the Boxing Week sales.
And the salesman, when he asked if we wanted to pick it up at the store on whatever date or have it delivered on whatever other date for x price, we asked if that included installation.  He clearly and very definitively told us "yes, they would install it" AND the old television would be moved to wherever in the house we wanted it moved.
Based on that promise, we paid the fee and agreed to wait the extra time for the delivery service.
Well, they delivered exactly on time. In good time too because it was here before noon which was a bonus as far as I was concerned. Turns out it was a damned good thing it was here that early on more than a few levels (a major snowstorm started in this region within a half hour of their leaving here -- we may not have got our delivery had we been at the end of their run).
However, they weren't installing it. They don't do that. If we were told that, we should call the salesman and talk to him because he told us wrong.
We weren't impressed.
They did offer to move what would become our old TV though when I told them what we had been expecting to happen.  I refused to let them remove a working television when I had no idea how long it would be before its replacement would be opertional.
Now, when we bought the TV, we also bought a replacement DVD/VCR player that I hadn't yet installed because I didn't see the point in taking apart my hook-up twice in one month. I figured I would just wait and do everything at once when the new television arrived.
Good thing for John that his wife used to be a techie (I say "used to be" because since I retired, I've resisted having to use this skillset) because she knows how to install televisions and VCRs and satellite dishes and computers and ...
So, I set about replacing the DVD/VCR unit and making sure it worked on the OLD television before we made the tv swap (I may as well have done that the day we brought the player home and at least been able to play a DVD had I wanted to in that period).
Making the swap was the biggest challenge of the entire exercise.
John and I could barely lift the old tv.  It's a humongous monster of a set.  And he had thought we were going to take it downstairs!
Eventually, we managed to ever so carefully get it off the stand and onto the dining room carpet.  And there it sat (although we did manage to slide it out of our way).
And then we lifted the new tv onto the stand (and just made it, I might add).
And I spent the next three hours connecting, unconnecting, and reconnecting our new television.
John custom-built the TV-stand to fit the satellite receiver and the DVD player in one section, out of which their cords travel to be connected to the television, which sits on top at the appropriate viewing height.  We were delighted when we had ascertained that we'd be able to use the stand with the new unit.  You have to know that the connections for the new television are going to be in one of the few places they could be to NOt fit our stand's configuration.  Luckily, I have a plethora of coaxial cables so it was a simple matter for me to replace that one. But the component connectors for the DVD player were just too tight a stretch to suit me -- it was going to be a problem.  Again, between us we were able to scare up a longer set of cables to make the appropriate connections.
Then I saw a change I wanted in the back of the stand which involved John getting a saw and working very carefully (so as not to cut any cables) to cut a hole large enough for me to get at a cable from the back if need be (usually, I have to pull stuff out by the front when there is a problem).
Then we checked that everything worked and we adjusted the colour balance until we were happy with it.  And I played with the remote controls until I determined that I didn't know how to tell the TV remote how to recognize my satellite dish (it came with a manual on a CD -- big lot of good that does me).  And I would have to call my satellite company for the code for the television because my two year old receiver's manual doesn't include this newer model tv on its list.
So what we have by supper time is a wonderfully big screen on which I can read the ticker tape (that is HUGE for me!).  But we have to use one remote for all functions except volume control and the other remote only for volume control.
In this household, that just won't do.
Because we don't do commercials around here; however, we handle them differently.
You see, I tend to turn down the volume when a commercial comes on.
John mutes the television when a commercial comes on.
If I'm driving, I can hear when the show starts up again so I know immediately to increase the volume (and to start watching again).
If John is driving, he has to keep his eyes on the screen to know when to "unmute."
Anyway, that's just an aside.
Point is, it simply will not work in this household if we have to use two remotes when watching television.
I was dog tired from the physical exertion of the day, not to mention the mental stress of it all.  John hit the sack early and I drew a bath to let the jets massage my aching body.  I can't even begin to tell you how therapeutically beneficial that jet tub has been around here.  We have gotten our money's worth I don't know how many times over the years since we put that in.  Because I'm sure if I didn't have that therapy available to me at any hour of the day or night (and I have been known to be in there at 3:00am if necessary) I would absolutely be forced to make frequent commutes to Ottawa for warm-water therapy sessions (there are no warm-water pools in my immediate area).  And frequent commutes would simply exacerbate the problem with my hips.
Later that evening, I called our satellite provider and the young gent very nicely helped me program my remote to recognize the new television and voila! it turns the volume up and down!  He had me check this that and the other thing to ensure that all was right with our world.  And while we were talking, because the television was on and was interfering with my hearing him, I tried to mute it.
"Oops," I said to him.  "The volume up and down works, but the mute doesn't."
So he explains that if the volume buttons work but the mute does not, that means that the television is wired differently or some such thing.  I accepted his explanation, thanked him for all his help and went on my merry way to bed.  I figured volume control was better than nothing.  At least we could do pretty near everything with the one remote now.  And how often do we really need to mute the television anyway?
As I write this, I remember that the first code he gave me didn't work.  The second code did.  There may well have been a third code that may have worked better on this particular television.  I'm thinking now that I'll have to call them back and ask how many codes they have for this model television.  If they have more than two, I will ask for all of them and start over until I find the one that gives us full functionality.
If it means buying some third-party super duper universal remote that sees both and actually contols both properly, we will probably end up doing just that. Because John simply cannot live having to hold onto two remotes all the time (you know how men are with remote controls). 
Friday morning I woke up with legs that simply would not co-operate with me.
But this time it wasn't just my hips that were screaming (I had worn the TENs unit all day Thursday; I'd have never gotten through the day without it).  This time, my thigh muscles were letting me know that I had helped move a 100+ pound television the day before (my inner arms are also witness to the activity; I bruise easily).
I had a follow-up appointment with my eye doctor to see if there's any more change.  There is.  But the change is on the positive side so we know there is nothing sinister going on with the eyes that warrants further investigation.  But we are still going to wait another three months and test again to see if by then she can write me a new prescription for Bonnie's glasses again (we call my current ones 'Betty's glasses' because the prescription is certainly not what I should be wearing).  The reason we're waiting is because while my vision has changed since I bought these glasses a year ago, the prescription she would have had to write when I saw her last October would have been different than the one she would have written when I saw her last December and that one would have been different again, albeit very close to what she could have written yesterday.  So IF she gets the same or very close to the same results again in May, I will get glasses and will again have my distance vision restored to what it should be>  And I'll be able to enjoy reading with my glasses ON the way I'm supposed to. I've worn graduated tri-focals for over 20 years and now I have to take my glasses off every time I want to read the printed word -- it's craziness!  So, I will see her again mid-May and I may or may not be getting Bonnie's glasses at that time.
After that appointment, I went to visit "my angel" at her home.  We had been trying to organize a lunch get-together for some time but our schedules simply weren't co-operating.  Once we had settled on yesterday, my eye doctor's office called and asked if I could move my appointment by an hour.  That was just enough to skew the timing for our lunch.  Rather than have her with a bout of down time in the middle of nowhere with nothing to do, she came up with the brilliant idea of my just going to her place whenever I finished with the doctor (cancelling our get-together was NOT an option). 
It actually worked out better than going to a restaurant because we were able to sit and talk and visit at our leisure.  We agreed that we should do it that way more often but I only agreed on the condition that she would on occasion allow me to make lunch for her.  (Note to My Angel:  You will comply.)
It was almost dusk by the time I got home and man I was tired.  But my biggest problem was my thigh muscles.  They would have preferred that I didn't walk at all.  And they especially didn't want me to go downwards anywhere (try lowering yourself onto the throne when your thigh muscles don't want to work).
Another jet massage bath was in order and that is exactly what I did before hitting the sack early again.
It paid off because I woke this morning feeling much refreshed and my thigh muscles, while still sore, are very much improved.  Walking is still difficult but much easier than it was yesterday.
My morning today has been rather productive too.
Last night, I had called the shop where we bought the tv to discuss with a sales manager the matter of what we were sold vs what we received.  Turns out the salesman made a mistake (surprise, surprise) and never should have told us that it would be installed for that price.  It's a different price and a different delivery company for installations.  That, of course, is not my problem.  We expected a service that we thought we had bought.  Otherwise, we could have gone to the store and brought the unit home ourselves and perhaps not waited a month for it.  And we would have arranged with friends or neighbours to move the other television for us. 
This morning, Will called to let me know that they are refunding what we paid for the delivery AND he was sending someone to move the old tv out of our living room.
I had been prepared to push for a refund; I didn't refuse the offer of the move.
At 2:30pm, two salesmen from the store who had just finished their shifts arrived at our door to move a television for us (AND they came through the summer road -- "Oh yeh, we saw the sign, but I have winter tires," he said as they left.)
They could barely lift that sucker!  "I can see why you and your husband couldn't move this thing," one comments.
They weren't movers and they knew not what to do but they were going to complete their mission.
And were they ever glad to see my stair lift! They were gladder still when I agreed that they could use it.
With one in front, and the other in back, they supported the tv on the footrest of the stair lift and I used the remote control to direct it down the stairs.  The poor guy in the rear had a difficult time because he was practically crawling down; but the guy in front had the bulk of the weight to worry about while he went down backwards.  It was a tricky maneouvre but they made it.
So now it's approaching 4:00pm on Saturday, and I have spent the better part of the afternoon writing this post.  I think it's plenty long enough.
Tomorrow I'll discuss the new "treatment" plan with respect to Cesamet that I have devised for me without having consulted my doctor.

Tuesday, January 26, 2010

Oops, I Missed an Anniversary

I did.
Sort of.
But it's easy to understand why I missed it.
The event wasn't exactly accompanied by the usual fan-fare that most people enjoy when they retire.
You see, last Saturday, January 23rd, was the fourth anniversary of my retirement.
I know because it was the fourth anniversary of Stephen Harper's having formed his first minority government.
We share the date -- he formed his first government, I officially retired.
You see, I worked for a Member of Parliament.
For many years, we had a deal:  he would be an MP as long as I stayed at work, and I would work as long as he was an MP (there were many days on which I begged him to quit to put us both out of our misery).
The deal worked well for both of us for quite a lot of years.
And then it became increasingly clear that I would not be able to continue working.
We adjusted my schedule as much as we could.  I worked from home as often as was practicable; whenever he was not in Ottawa, I was not in the Ottawa office.  Fortunately, the technological advances available to us allowed us to function that way quite seamlessly.  I had a "hot line" in my home which allowed the MP to reach me at all times (which he did!); there was a dedicated fax line in my home; my home computer was secured so that I could access the office e-mail from home.
But eventually, even making the commute a couple of times a week became too much for me.
I had to pull the plug and I went on sick leave.  My human resources consultant convinced me to apply for long term disability since my doctor was suggesting that I probably would not be able to return to work any time soon.  That application was pending when the election was called (it was subsequently approved).
The MP that I had been working for did not run in that election, choosing to retire and spend time with his then new grandson.
Because an election was held and the MP I worked for did not offer for re-election, my employment was terminated as of the date of the election.
I effectively "retired" as of the date of the election.
I'm really sorry I missed that anniversary.  I'm sure Stephen would have loved to join me in the celebration.

Monday, January 25, 2010

Happy Anniversary to Me

Today is our 13th wedding anniversary.
Hard to believe that John and I have been together 15 years already.
It was back in the summer of 1995 that we met -- on Carleton University's Freenet chat line.
John calls me his 'computer virus.'
After months of on-line exchanges, we arranged to meet in person on the afternoon of August 8th.
John told me later than when he saw me walk into that restaurant, he knew that his life was about to change forever.
I guess he was right!
By mid-September, he had offered to clear a drawer for me.
Everyone knows what that means.
Sixteen months later, on January 25, 1997, we married in a small, non-denominational ceremony in the basement of JR's Restaurant in Almonte.
I didn't want a church wedding.
I didn't even want to say the standard vows.
All that is legally required is for the officiant to ask if we want to be married and for us to say yes.
That would have worked just fine for me.
But John insisted on having vows.   "I take .... in sickness and in health yada yada yada" and he wanted us to promise to love, honour and (there was no way on God's green earth I was going to take a vow to OBEY!) respect each other.
So, I acquiesced and we said vows.  (It was, after all, his wedding too.)
I managed to say my vows without too much incident.
But when John was saying his, he puffed up like a peacock and it just struck me as funny.
I started laughing.
I was damned-near doubled over.
My little chickadee, who was my witness, was positioned behind me and she kept hitting my butt telling me to stop laughing.
Which just made me worse, of course.
Fortunately, it was a very small wedding.
And the guests knew me very well (except maybe for John's adult kids -- they might have been wondering what kind of nutjob their father had brought into their family).
The officiant commented later that he had seen lots of interesting bridal responses, but never hysterical laughter.
I just found the whole thing very amusing.
And all I could say in my defence was, "I told you I didn't want any of that nonsense in my wedding ceremony!"

Bonnie Cherryholme and John Fowler Wedding - January 25, 1997
After the ceremony, we had a buffet meal at the restaurant with the few people who shared our day with us, and then we all came back to our home for celebratory drinks.  Other friends who had been invited to drop in that evening to join us for drinks were given the news of our marriage when they arrived.
Within a year of our marriage, we were enjoying long romantic evenings through the Ice Storm of 1998.  Our power was out for 13 days and it wasn't  pretty around here.  We managed better than some because we have a wood stove in our living room but it was still a difficult time.   I remember telling John that it was a good thing we were still in the honeymoon stage of our marriage; otherwise, we might have been looking for divorce lawyers by the time our power was restored!  After thirteen days of having to live by candllight, our nightly candlelit dinners weren't all that special any more.
Later that same year John received his diagnosis of prostate cancer and that sent us into a tailspin.  Today, he is classed as one of the fortunate ones; he is a cancer survivor.
Since our marriage, our blended family has grown by the addition of one grandchild (my beautiful boy).  We lost a daughter-in-law to breast cancer, and we gained a daughter-in-law who brought with her several more extended family members.
It's been an interesting thirteen years, admittedly not without challenges but we've weathered them together.
And that, my friends, is what we vowed we would do when we made the decision to get married thirteen years ago.
Tonight, John and I will toast each other with our Wedding Glasses, as we do every year on this date.  And God willing, we will do the same thing again next year, and the year after that, and the year after that,  and ...

Sunday, January 24, 2010

Now For My New Plan

It seems that I've settled into what I'm calling my "new" pain threshhold.  At least, I'm coping with it at this level.
So, as of tomorrow I'm decreasing the Cesamet dosage again.
John isn't convinced that I should be doing this.  He's concerned about an increase in my pain level.
But my doctor's instructions were to decrease by .5mg per week and I haven't done that.
I think it was wise of me NOT to decease the dosage as quickly as the doctor wanted me to.  My body needed more than a week to adjust to the new level of pain that it had to endure as a result of the reduction.
Now that I've adjusted to this pain level as my new "norm" I will risk thrusting myself into another round of misery.  I will reduce the Cesamet dosage by .5mg as of tomorrow to see if that makes a further improvement to my appetite.
I hope it takes a couple of days before my body realises that it isn't getting the same dose of Cesamet to which it had become accustomed.
It took almost ten days at the lower dose before we noticed that I had a bit of an appetite.  For that reason alone, it would seem silly to decrease the dosage any faster than every two weeks, I think.
So, my next reduction in dosage will not happen until February 8th.  At this rate, I won't be taking my last Cesamet capsule until May 1st, unless my doctor instructs me otherwise.
Let's hope this treatment plan is not for nought.

Thursday, January 21, 2010

Moving Along, Slowly

Well, this business of decreasing my Cesamet dosage really isn't going very well.
My pain level is such that I can't be upright for more than a half hour; my right hip just can't tolerate the impact.
It's like my brain is saying, "No, I'm not going to move that leg in that manner because that is going to hurt too much."  So I end up essentially dragging my right leg.  Which is physically very draining.
Hence I'm exhausticated.
By the time I get to where I'm going, I'm too tired to do whatever it was I was planning to do when I got there!
It is all so frustrating.
And now my brain is apparently in conflict with my stomach.
You see, the impetus for taking me off Cesamet was to see if my appetite would return.
My massage therapist told me today that I'm "fading away" and I told her that I'm within ten pounds of my goal weight, but I digress.
Anyway, with this first reduction in the Cesamet dosage, I'm already seeing an increase in my appetite.
Yes, you read right.
I actually get hungry now.
Problem is, I still can't eat very much.
I am hungry but after eating very little, the abdominal discomfort starts so my brain tells me to stop eating or the pain will just get worse.
So I'm battling two conflicting messages:  I'm still hungry but I just can't eat!
I've tried eating through it, ignoring the pain message in an effort to satiate the hunger message, but the suffering I have to endure afterwards simply isn't worth it.
I have always lived by the credo that one should eat if one is hungry, but only if one is hungry (hence, when I lost my appetite, I stopped eating).
In my youth, I could pack away more food than anyone could believe was possible for someone of my size (I weighed 98 pounds soaking wet, quite pathetic really).  I used to say then, "I don't know what it means to be full; I'm always hungry."
At that time in my life, I didn't eat to live, I lived to eat.
I find it interesting that the reverse has been true for the past several months.
But the past few days has taught me that I still don't like to be hungry.
I never did like to be hungry.
Just ask my little chickadee.  The only specific instruction I've ever always given her with respect to my ultimate care, is that I don't ever want to be medically "starved" to death the way some famous cases have happened.  I said, "Don't ever make a decision like that where I'm concerned.  Don't let me be hungry, even if I don't know it."
I can assure you, I won't last long on a treatment plan that leaves me hungry while I'm still unable to eat.

Monday, January 18, 2010

Another Difficult, Slow Day

Well, I saw every second hour all night again last night.
Even before I opened my eyes, I could predict what time the clock would read based on what time it had been the previous time I had been up!
When I did get up for the day, it didn't take long to determine that I was facing a day just like yesterday, except the pain is that much worse again.
Every step takes tremendous effort; it's like my legs are not attached to my brain.  They just don't seem to get the message that they are supposed to propel me forward.
This was supposed to have been a physiotherapy day but I couldn't face the drive into Ottawa.
It simply didn't make sense to subject myself to the 45-minute drive for the therapy session and then have a 45-minute drive back home.  While I certainly would have benefited from the therapy itself, I had to weigh the impact that the drive would have had on me because 90 minutes in the car takes its toll too.
So, I ended up slapping on the TENs machine again and that allows me to move around here and get done what needs doing.
Hopefully, I'll settle into this level of pain and will not have to cancel out of too many more of my life's pleasures.
In the meantimee, I can't tell you how thankful I am that I have so many pain management tools available to me at home.  I can't imagine what I'd do if I didn't have these options.

Sunday, January 17, 2010

Slow and Easy

That will be the order for today let me tell you.
I'm sure I slept last night.
It just feels like I didn't.
I swear I saw every other hour of the night, all night long.
And I ran out of positions to try for comfort.
Just couldn't find one.
Eventually, after arranging pillows in the proper positions, I flopped down on my tummy (a position I really hate!) and managed to fall asleep for another 90 minutes.
And woke up with a sore neck!
There's a reason that my most natural sleep position is on my left side but my left hip has now gotten as bad as my right and I simply cannot stay in that position for more than an hour.  And I cannot roll over without physically getting up so I actually have to wake up to switch positions and that is a major interruption to my sleep.
Because my first mental awareness on coming awake is the burning pain in my hips -- I really don't even know which words to call on to describe the pain.
But it is always with me.
Sometimes more so than others.
Once I was "up" for the day, the pain was unbelievable!  Every step was a supreme effort.
So, today I will again be wearing the TENs machine all day because without it I apparently can't walk!
As to the problem with my neck, Santa helped out tremendously with that problem.  He brought me a few wonderful additions to my arsenal of pain management tools.  One of them, a Shiatsu Neck Massager, has proven to be especially beneficial in my case.
Last fall, after my "incident" in Nova Scotia, my doctor ordered x-rays of my neck and shoulder area to monitor the progress of the whiplash that I had suffered.  The test indicated that I have osteoarthritis in my neck and my doctor quickly ordered up physio and suggested that massage might help.  Since I was already using both services, we just added the neck area to that which was being treated (we were already treating the area, we just concentrated a little more closely as a result of that diagnosis).

Bonnie uses the Shiatsu Neck Massager
I use the masssager every morning and it seems to keep my neck quite happy.  I've christened the unit Janet, after my massage therapist.  When I took it to show it to her, I told her that my neck was in good shape now because I have "Janet on demand."  We laughed at the time and agreed that it's a good thing it can't address all my pain areas, or she might be out a client!
By the time I took it to show it to my physiotherapist, I had realized that I could use it in other areas which have also proven to be supremely beneficial to me.

My physiotherapist was mightily impressed when I told her how else I was using the neck massager!
I suffer from debilitating calf pain and my weekly physio sessions combined with my bi-weekly massage therapies help to keep the cramps at bay.  But since I started having "Janet" massage my calves (the Shiatsu balls grips my calves in precisely the right spots!) the cramping has been all but eliminated.  And my foot pain (both in the heel and in the ball of the foot) has been decreased significantly since I discovered this trick.  Now, whenever my feet hurt, I can simply put Janet into action.  She does a fabulous job!
These pain management tools, combined with the acupen which I use on my way to bed, all help me "function" from day-to-day while I'm home.  Of course, there is also the jet massage tub that soothes my aching joints on a regular basis too.  And the stair lift assists me when I need to get up and down the stairs.  But I must be at home in order to take advantage of them.
My real difficulties occur when I leave home and have to function without the benefit of these non-medicinal pain managment techniques.
My pain level is increasing with each day because we have decreased the Cesamet dosage.
I'm due to reduce it further tomorrow.
John and I have decided that I will not reduce it this week.
Instead, I will stay at the same already-reduced dosage for at least another week.
Our reason?
We have noticed that I actually have an appetite the past few days.
At least I managed to eat breakfast yesterday morning, and I ate supper last night, interspersed with a sort-of lunch.
Now I'm not saying that I ate a humongous amount of food at any one of those sittings.
But the point is that I ate much more food at each sitting than I have eaten in the last long while.
So we are encouraged that maybe the lower Cesamet dosage has in fact helped with my eating difficulties, perhaps suggesting that it was the dosage causing the problem.
If that is the case, we should give the new "bowel protocol" that the doctor put me on last week a longer opportunity to work its magic to see if the abdominal discomfort and pain are a result of a motility issue.  If it is, and the pain on eating subsides, perhaps we might rethink our treatment plan vis-a-vis Cesamet.
John is concerned about how quickly my pain level has increased with such a small reduction in the dosage (which was exactly my doctor's concern -- what else will he give me?)
And frankly, with the state I'm in today, I have to agree with John.

Saturday, January 16, 2010

My "New" Norm, I Guess

I believe I am now settling into what will be my new norm, at least for the near future.
After only five days on the first-step reduction of Cesamet, my pain level is such that it is a supreme effort to walk from my living room to my dining room (which is no distance at all).
On Wednesday, I went into Ottawa for my physiotherapy session, after which I picked up my little chickadee and we had a nice visit that evening.
The following morning, I met my girlfriend for a leisurely breakfast before heading home around noon (we sat and talked and talked and talked some more).
On the way home, I stopped at our local grocery store to pick up a few things.
Our local grocery store several years ago expanded to this ridiculous size which now makes me walk forever to get that bag of milk before making the trek back to the front of the store to pay for said bag of milk.  And now they are rearringing the store to make it more efficient for shoppers.
You know, efficient like:  "Ketchup?  Oh, that's in the baking aisle now because people use it for baking."
Huh?  So that would be why it isn't with the other condiments where I used to find it then?
Anyway, I ended up walking the store a few too many times looking for stuff that I had figured out over the years since their expansion but I apparently will have to learn all over again.
By the time I got home, I couldn't move.
I was, as I often say, exhausticated.  Completely done for.
But my problem was in my hips.  They simply wouldn't co-operate to propel my body. I could barely compel my legs to shuffle along, my hips were that sore.
Normally, after a physio treatment, I enjoy relief for at least 48 hours and this was less than 24 hours after I had left her office!
The massage tub was called into action and I let those jets pound at the highest setting this time.
Yesterday, I wore the TENs machine all day so I was able to function around here quite comfortably.  It's truly amazing how immediate the relief is with that but there appears to be no particular residual relief from it.  Once I take it off, the pain is back quite quicly, but on the days I can wear it, it sure beats taking a narcotic!
Before I went to bed, I of course used my acupen which usually gives me several hours of relief.
Still, I woke during the night from the pain.
I am scheduled to further reduce the Cesamet dosage on Monday.
I'm no longer so sure this plan was such a good idea.

Wednesday, January 13, 2010

Quick Update

I have to be quick about this posting.
I'm heading into Ottawa (finally, a much-needed physio treatment).
Picking my little chickadee up at her work and we'll run some errands before picking my beautiful boy up at his daycare.
Then we'll go to my hairdresser's place so I can get my hair cut again (woo hoo -- not like it needs it much).  I'm at the stage where I call myself "a bush."  My hair is so baby fine, that it flies all over the place when it isn't kept in check.  So I like to try to keep in under control as much as I can (which isn't much since I swear I am the world's worst with any hair-related implement).  This appointment is only one week off my normal rotation and you'd think I was a month late.  Unbelievable!
Since it will be dark by then of course, I stay overnight at my little chickadee's and we get to have a nice visit, which is always a highlight of my month.
Tomorrow morning, I'll meet a good friend for breakfast (which will last until late morning, because we have a lot to catch up on).
Then I'll head home and I'll stop for groceries en route.
So some time mid-day tomorrow, I'll get back from this excursion.
Don't look for another update on here before some time on Friday.
Perhaps by then, I might even have something interesting to talk about.

Monday, January 11, 2010

More Medication Adjustments

I saw my doctor today.
Got the results of my endoscopy/colonoscopy -- "normal."
No surprises there.
So our discussion had to revolve around what to do next because my inability to eat is becoming a more concerning issue with each passing day.
Our new approach is to go off Cesamet.
He is fairly certain that, in the absence of any other medical explanation, my appetite will return once I am off the Cesamet.
And then, I ask, what about the pain and discomfort in my gut every time I eat -- will that stop too?
Perhaps the one is associated with the other; both the pain and the loss of appetite occurred coincidentally with my starting on Cesamet.
I'm not convinced that the pain and discomfort are necessarily related to the Cesamet (I talked him into a requisition for a pelvic ultrasound to rule out another possible sinister cause).
He has given me a "bowel protocol" to follow which should help ensure that my system functions as it should (my gastrointestinal tract is still trying to recover from the effects of years of codeine medications).
The plan is to reduce Cesamet by .5mg per day starting today.
And every week, reduce it by a further .5mg per day until I am taking nothing.
I've mapped it out on the calendar.
I will take the last .5mg capsule of Cesamet on Sunday, March 7th.
I don't even want to think about how bad my pain will be by then.
We've agreed to worry about how we'll manage the pain once we determine whether or not the Cesamet is the cause of my current eating problem.
It's going to be a looooooooooooooooooong eight weeks.

Sunday, January 10, 2010

10 January 2010

Two years ago this evening, my mother passed away.
She lived in Kitchener at the time, having relocated there some fifteen years earlier, following her return to Ottawa after my father's death in 1979.
My mother was born Dorothy Mae Sharpe in 1925, the sixth of thirteen children born to Sam and Sarah (Gizzard) Sharpe.  Four children died as infants; so my mother's family composition closely mirrorred the family she herself would eventually have:  she was one of seven girls and two boys.  One sister, Catherine, after whom I am named, died at the age of sixteen following an accident on a playground (our details are fuzzy).  My mother was barely past her tenth birthday when she witnessed the accident, and she remembered well not only the vision of the incident, but also the anguish her mother suffered as she tried to deal with the health care system of the day.

My mother's education was interrupted before she completed high school and she once confided to me that she always felt inadequate because of that.  I had a tough sell convincing her that she was in fact a very intelligent woman, in spite of what circumstance may have thrown her way.  She worked for some time as a waitress before her early marriage, when she devoted her time to raising a family of six girls and two boys.

My parents were childhood sweethearts, having first met when they were 12 years old, and my mother devoted herself to the role of motherhood and managing her busy household.  But one of my most vivid childhood memories is that of seeing my mother getting cleaned up, putting on a fresh apron (yes, women wore aprons over their dresses) and standing in front of the mirror applying her lipstick.  We always knew, by that scene, that our father was due to come home.  She wanted to look nice for her husband.
With their family grown and having started families of their own, my parents moved first to Montreal in 1973 and then to Toronto in 1976.  My mother had returned to the workforce some years earlier "for something to do" and she settled easily into the Toronto community.  Unfortunately, her time there was short since my father passed away in 1979 and she quickly returned to Ottawa, where most of her adult children were still living.
In the early 1990s, my mother decided that she would rather live in Southwestern Ontario where her three youngest adult children were by now living (see folks, it pays to have lots of children!) so she once again packed up and relocated to Kitchener.

The photo on the left was my mother's "official portrait," which was taken in 2006; the photo on the right was taken in December 2007, just one month before her death.

On January 10, 2008, my mother finally returned to her beloved Richard, for whom she had mourned since his untimely passing 28 years earlier.

Rest in peace, mother.

Friday, January 8, 2010

Will I EVER Catch On?

There is a pattern.
Really there is.
You see, I was sick as 2009 turned to 2010.
Couldn't really put my finger on an ailment, per se, but I was definitely sick.
Now I read an article in the paper about the norovirus that is making the rounds in the region.
Yup, that's what it was alright.
At least, in the absence of a precise medical diagnosis, I will declare that I contracted a bout of the norovirus to help me bring in the new year.
The symptoms certainly fit, in any event.
Since the culprit itself has run its course, I've been battling heightened pain.
That's right.  After declaring myself "back in the land of the living" because I was feeling so much better for having come out of the fog of whatever I had been fighting, I've been dealing with much greater generalized pain than had been my "norm" for the past while.
My physiotherapist is away this week so I had to forego that treatment, which is unfortunate because I really needed it on Monday.
On Tuesday, my hips were so bad that I wore the TENs unit all day trying to get relief (it worked, while it was strapped to me).
Yesterday, my bi-weekly massage therapy resumed after being interrupted since early December.  My therapist found knots in a whole host of new places and when she was working the hip area, I was crying out in pain.
Normally, on the night that I've had my massage, I sleep like a baby; but not this time.  I woke repeatedly last night; my hips were burning with pain, presumably because the manipulation from the massage has them so inflamed.  But that doesn't usually happen as a result of my treatment.
And just this morning, the light went on.
Of course.
I had to call on my resources to battle a virus, which left me depleted.
So I am now enjoying a fibro flare-up.
And when I'm in a fibro flare-up, everything hurts.
Big time.
You'd think, after more than 30 years of this nonsense, I'd have caught on to the pattern by now.
Now, I get to wait this one out.
What fun!

Wednesday, January 6, 2010

"Little Christmas"

Today is what's known in the world of christianity as The Feast of the Epiphany, or "Little Christmas."
There are many versions of the origination of the feast but put simply, it is the Twelfth day of Christmas, marking the day that the Magi (the three wise men) arrived at the manger offering their gifts of gold, frankincense, and myrrh to the new-born child.
As Catholics, we are quite attuned to this story and if the family displayed a creche as part of their Christmas tradition, it would be left up until January 6th to mark the feast of the Epiphany.  A special mass would be said at the parish church and devout Catholics would be sure to attend.
Some families would find small gifts at the foot of the family creche, marking the gift-giving occasion.
Growing up, our family did not do the gift exchange on Little Christmas.
Once I was living on my own, and certainly once my little chickadee was on the scene, I added a creche to my Christmas display, buying the one I use today in 1978.
Sometime around the 10th of December, my daughter and I would carefully set up the creche once the tree was decorated.  We would also start reading her many books about the story of Christmas.
Since Mary and Joseph didn't arrive at the "Inn" until the 24th, they would be placed off in the distance, as though walking toward Bethlehem.  The shepherd would be set further off in the distance since he was "following the star of Bethlehem" and would arrive once the baby was there.  The three wise men were positioned really far away because they were not due to arrive until the 6th of January.
On the 24th of December, Mary and Joseph would arrive at the manger and would be placed inside, but the baby would be "hiding" behind the structure, to be added the following morning.  (Remember my earlier posting about my little chickadee coming downstairs on Christmas Eve to lie Mary down since "she was going to have a baby" that night?)
At some point in her young life, my little chickadee convinced me that she should start getting a gift on January 6th.   "It was, after all, Little Christmas," she whined.  So, I would hold back one gift from what she would otherwise have received on Christmas Day and give it to her on January 6th.  Not sure how she figured she was ahead on that one but whatever.

In my current household, the creche remains until this date, (after all, the three wise men have only just arrived this morning) but the "tradition" of offering a gift on January 6th has not prevailed.
Tomorrow, with all original members present and accounted for (although the shepherd is a little worse for wear), the creche will be dismantled, carefully wrapped (I just this past Christmas threw away the original packing material) and put away for another year.
And thus will mark the end of Christmas for another season.

Tuesday, January 5, 2010

The New Math Perhaps????

How the heck does this math work?
Last August, John fell (yet again) for that darned tele-marketing scheme that convinced him that he absolutely needed to call now (he didn't have all day, after all) to order the Slap Chop (make America skinny, one slap at a time).
Our Visa was charged for the gem in September, one of the last purchases that made it through on what was then our old Visa card.
Along about late October, we received a message from what sounded like Slap Chop, saying they needed to put through a further charge on our credit card but it was declined.  Would we please call them and straighten it out?  I figured, "Yeh, sure, in your dreams, baby."  I didn't return the call.
In mid-November, we received a letter from Slap Chop telling us that they have tried to put through the additional charge but the credit card company has declined it (thank God I had changed cards in the interim!) and asking that we remit the required amount ($4.92US) to clear the account.
My response to them was pointed:
"I really paid for two items (by the time you add in the exorbitant shipping charges), but I actually received nothing (the items are not worthy).  Yet you still think I should send you an additonal $4.92 US?"
"I can return the items to you, if you wish; as long as you pay the return shipping, and you cut a cheque payable to me representing the full Canadian equivalent that was already charged to my credit card."
Imagine my surprise when, on December 16th, Slap Chop somehow managed to process a CREDIT for $8.00 US.
I know not why for (there has been no further communication from them).
Instead of our sending them $4.92US to clear the account, they have refunded $8.00US, further reducing our costs for the stupid items by $8.25 CDN.
OK by me.
And to add to the mystery, I never gave them the current Visa card information.
So presumably, if a vendor tries to put through a purchase with outdated card information, the credit card company won't authorize it; but if a vendor tries to put through a credit with outdated card information, the transaction is allowed.  Interesting indeed.
I still don't know how the math works down in Connecticut, USA though.
Wonder if that manouvre cleared the account?
John just told me that there was a message from Slap Chop some time last week.
Maybe they're trying to correct the stupid mistake they now realize they made.
Trouble is, our Visa card changed again in mid-December.
I don't think the credit card company is going to allow any more activity  on a number that is three cards old.
Perhaps we should return their next call?  Maybe they want to issue us a $12.00US credit to help clear our current balance?  We would suggest they mail us a cheque.

Sunday, January 3, 2010

Coming out of the fog

Three days of doing nothing helps I guess.
I've literally done nothing ...
Except sit around the house and read.
I finished reading a second novel today.
Gonna start a third one tonight (very soon actually).
I'm feeling much better now.
Even managed to eat some dinner.
Which thrilled the heck out of John.
The first real meal I've eaten since I don't know when.
I didn't really eat a lot you realize.
It was just a significant amount of food for me, in the scheme of things.
I'm monitoring my daily intake and my weight loss so that I can let my doctor know if we still need to worry.
And we do.
I can eat very little before the pain starts.
So I try to eat something every two hours.
Problem is, I don't get hungry.
So John kind of watches and keeps on my ass about what I'm eating, IF I'm eating.
And tonight, he was absolutely delighted when I asked if there was any more rice to be had.
My weight loss continues, albeit not as profoundly as it had been.
My little chickadee thinks I'm fading away to nothing but it's not quite that bad; the scale tells me that I'm almost holding and truth be known, I could still lose a good chunk more.
Just not this way.
Eventually, an explanation will be found
I will just get down to my goal weight and all will be right with the world.
Yeh, that's what will happen.

Friday, January 1, 2010

Happy New Year

The start of a new year.
Things can only get better, right?
I ended 2009 sick.
Sick, sick, sick, I tell you.
So 2010 has to get better.
I'm sure whatever I have is just a bug of some sort.
After experiencing about 30 hours of extreme chills, nausea, loose you-know-what etc, this morning I've got the sweats from very little exertion and I'm very weak.
Obviously, I've picked up something and I have to wait it out.
Which is exactly what I plan to do.
Luckily, I received a few good books for Christmas (one of which I've already finished) so I'll just curl up and read until I start to feel better.
I have nothing on my agenda until January 7th so there's lots of days to rest.
Which is what I'm on my way to do again.

Note to the person in Indianapolis who was directed to this blog after doing a google search for Dorothy Mae Sharpe:  If you want information about my mother, please do contact me by e-mail.