Saturday, October 31, 2009

It's Hallowe'en

I love Hallowe'en.
It's always been one of my favourite holidays.
Of course, when I was a child, I loved the door-to-door part and collecting candies.
But I especially loved collecting pennies for UNICEF.
Remember UNICEF?
When I lived on my own (in the days before my little chickadee came along), I used to convince my friends to dress up and come with me to go door-knocking.
That didn't always go over very well -- a group of early-twenty-year-olds going around the neighbourhood having fun.  How could they?
So then I would "borrow" a child so that I could enjoy the door-knocking part of Hallowe'en.
Or I would tag-along with a friend or sibling who had a child.
I just love witnessing the excitement the children exhibit as they see the goodies fill their bags.
It's not unlike the joy of sharing Christmas morning with a child -- another favourite experience of mine.
Of course, once my little chickadee came along, I had licence to go trick or treating again.
So every year, I would dress up as something to take my little chickadee door knocking.  I always made costumes for both of us; I don't think I ever bought a costume.  Eventually, we went out as mother and daughter witches -- we were very impressive, even if I do say so myself!
It was really fun to see the reaction at the doors as my daughter and I arrived and people would see me all dressed up too.  They always wanted to give me candy!  My little chickadee often got double treats because "her Mom had taken the time to dress up and she deserved some candy too."
Then my little chickadee got too old for me to take her out and I had to borrow my "other daughter" to go trick or treating.  Luckily, my girlfriend had a daughter the right age and we are "other mothers" to each other's children so I just took her daughter out (which got my girlfriend off the hook for that duty).  I dressed up too because of course, that's the whole point of Hallowe'en.  I would arrive at my girlfriend's home already in costume and get the poor child all worked up and excited and make her mother crazy!
Have I mentioned that I love Hallowe'en?
In 1989, my boss at the time knew that I always got dressed up and went door-knocking for Hallowe'en.  How could he not know? If the holiday fell on a week day, I had to leave early because ... . He suggested that I should go "door knocking" throughout the building just to see if anyone figured out that it was me.
So I did.
My boss took this photo of me just before I left to collect goodies (the phones never stop in a busy MP's office).  It was fabulous fun going door-to-door -- just like when I was a kid.   But I was all grown up and I was at work and at each office everyone was trying to figure out who I was.  Not even my own sister, who also worked in the building at the time, knew that it was me behind the get-up!  Of course, MPs' offices are not normally canvassed at Hallowe'en time so I collected some very interesting goodies:  staplers; pencils; pens; erasers.  It was, after all, an office building! 
When I finished trick-or-treating, I went down to the in-house Day Care Centre that just happened to be in the basement of my building.  I had pre-arranged with the staff that I would arrive at Circle Time, in costume (they knew what the costume was), to distribute pre-approved treats to the children (boxed raisins that I had bought).  None of the children appeared frightened; they had all been prepared for a Hallowe'en surprise and when "Good Witch Grizelda" arrived, they were pumped! One little guy was jumping out of his skin wanting to help me distribute the treats!
A tradition was established and Good Witch Grizelda became a bit of a legend around the place.
Each year, I dressed up and went trick or treating throughout the building (by now, co-workers were catching on that it was me behind that outfit).  Some offices actually started having candy for me.  The children at the Day Care looked forward to their visit from Good Witch Grizelda as the older children briefed the younger ones.  And the Day Care staff never did find out who I was.

Friday, October 30, 2009

This Damned H1N1 Quandary ...

I'm in a real quandary now!
As I've already discussed here, I don't relish participating in these horrendously stupid line-ups to get the H1N1 shot that my doctor insists I need.
He is, after all, my doctor and he knows my history and it was he who advised me many years ago to take the seasonal flu vaccine because of my respiratory difficulties.
And, on his sage advice, I have taken the seasonal flu vaccine for many more years than it has been offered province-wide.
I used to have to pay for it!
Then in later years, there was always a clinic set up at my workplace so I was able to get my shot there if I hadn't already received it at a routine doctor's office visit.
I would like to get my seasonal flu shot this year as soon as possible.
But, my doctor's hands are tied.  He cannot give me the seasonal flu shot yet.
The powers-that-be have decided that I can't get my seasonal flu shot until AFTER I've had the H1N1 shot, OR, some time in December/January.
I will most likely have caught a flu by then (let's hope it isn't the H1N1 version).
Following is the protocol for delivering the seasonal vaccine (excerpted  from the City of Ottawa's FAQ page):
"According to the Ministry of Health, those 65 and over are at a much greater risk of becoming ill with seasonal influenza than with H1N1 influenza. Evidence is showing that in general, those 65 and over have built up an immunity to H1N1-possibly because they have been exposed to a similar virus earlier in their lives. It is therefore recommended that those 65 and over get the seasonal influenza vaccine as soon as possible and the H1N1 influenza vaccine once it is available to this age group (sometime in November). The Ministry’s vaccination program has been set up this way to best protect everyone."
OK - that means that John, who is over 65 and has already received his seasonal flu vaccine, can receive his H1N1 vaccine as soon as it is being offered to the general public (possibly as early as next week) -- if he chooses to participate in the line-up fiasco.  At which point he is doubly protected because, according to an article I read in the newspaper this morning -- the seasonal flu vaccine has for many years contained a component of H1N1 virus -- so what the heck is all the commotion about a dedicated one?
BUT, the FAQ adds some confusion to the issue on the very next question when it explains:
"Adults who were born before the year 1957 are at lower risk of contracting the H1N1 virus. There is evidence to suggest that this age group has been exposed to viruses in their lifetime that are similar to the H1N1. Therefore they may have antibodies that are protecting them from coming down with this H1N1 influenza. However, there is always the potential for infection and the Canadian government is offering all Canadians the vaccine if they want it. Due to limited supply of vaccine, the current recommendation is to offer those people who are considered at risk (such as health care workers, individuals under 65 years of age with chronic medical conditions, pregnant women, very young children, household contacts of infants less than 6 months and persons who have weakened immune systems) in the first round of shots. When this group has been immunized, the rest of the population, including the snowbirds, will be offered the vaccine. We do not know at this point when enough vaccine will be available and can not guarantee that it will be available before your trip. Please keep checking the Health Unit web site for up-to-date information about our clinics."
Now I don't know about your math, but the way mine works, in 2009, anyone born before 1957 is going to be 52 or older, not 65 or older.  So, it would seem to me that had the policy been to encourage anyone 55 years and older to first get their seasonal flu shot there would have been a signifantly larger portion of the population removed from those queues at the clinics every day.  And that demographic could have waited until the very end of the line because their seasonal flu shot contained a component of the H1N1 virus (if in previous years it always contained a component, this year it would have to as well -- more people might get the seasonal vaccine than might get the dedicated H1N1 vaccine).
And I notice that the rationale in both answers was very similar:  apparently both groups (those over 65 and anyone born before 1957) are somewhat protected from the H1N1 virus.
So I ask you.
Why can't my doctor give me my seasonal flu shot right now?  Eventually, when the powers-that-be have worked out all the wrinkles in the delivery method for the H1N1 vaccine, I'll get my swine flu shot -- probably from my own doctor.  I know I'm high risk but that, to me, says I should get the seasonal flu shot as soon as possible since the H1N1 vaccine is nigh-on impossible to get!
If I could at least have my seasonal flu shot, (did I mention that it contains a component of the H1N1 virus, and that I was born before 1957 and therefore it is assumed that I have some degree of immunity to the H1N1 virus) I would be protected to the same level that John is and eventually we could walk into our respective doctors' offices and get our H1N1 vaccine (you know it's going to come to that).
Did I mention that I don't buy the "logic" being spun by the powers-that-be?
Wonder what story they'll have for us tomorrow on this issue?
There was another story in the paper that referenced something about the flu "season" lasting six to eight weeks and it has already started.
I would suggest that it had started well before we were hearing about it.  I can't be the only person who noticed that prior to Health Canada's issuing approval for the vaccine, we weren't hearing very much about the flu in terms of numbers of incidences in Canada.
But wow, approval for the vaccine is given on October 21st, and the next day the numbers start rolling out and pandemonium breaks out right across the country!
I went to my local pharmacy yesterday to have a prescription filled.  Usually, it would take about 15 minutes for such a request.  This time, it would be about an hour because they were "backlogged with Tamiflu orders which have to be filled first."  That means that the flu is well under way in my community.
No wonder everyone is flocking to the clinics with a "me first" sense of urgency.
No wonder I'm not going near the clinics.
But if the season had started well before the vaccine was approved, and we are about to enter week two since approval was given, is there even time to inoculate everyone before the season has run its course?
The way the queues are moving, I think not!
Did I mention that I don't see why I should have to wait in stupid line-ups for a shot that I could take later in the season just like my husband will?
Did I mention that I want my seasonal flu shot now?

Thursday, October 29, 2009

I Fixed It My Ownself !

I don't have to go into Ottawa today after all.
So, as it turns out, I could have gone to Barrhaven and waited in that interminable lineup and actually got my H1N1 shot yesterday  (my girlfriend went through the process and got hers -- it wasn't fun but it's done).
Anyway, as I was going to bed last night, I went through the usual routine of putting my hearing aids away for the night.  That routine involves cleaning the devices with a thread-like tool that pushes out any debris that has collected in the airway that is critical to the operation of the unit.
Now, normally, when one arrives at the shop saying, "My hearing aid doesn't work," the first thing they do is ascertain that it is in fact operational, after which they clean it for wax build up that the client cannot get at (over time, everybody has to go in and have their hearing aids cleaned properly).
Keep in mind that I just got this hearing aid on August 14th; that's a mere two months prior to my arriving on their doorstep telling them that it wasn't working.  One would not expect it to have any unnatural wax build-up in that time-frame.  That should not have stopped them from putting it through the paces.
So last night, I pushed the thread through and it didn't want to come out the other end (usually, this is a very routine exercise).
So I pushed a little harder.
And out came a piece of old wax; judging from the colour, it had been there a while.
Now, when I first told them that it didn't work, I described the sensation as feeling like "a piece of wax was moving around in my ear but only when the hearing aid was in place."  That should have been a dead give-away for them. 
Apparently, there was no attempt to clean the hearing aid when they had it last week; they obviously didn't clean it before giving it back to me on Monday.
When I cleaned it on both Monday and Tuesday nights, I must have slid that thread "around" the wax plug (there must have been a sliver of an opening somewhere and I must have been finding it).
Then last night, I hit the jackpot!
And none too soon, I might add.
Because I really didn't want to be going into Ottawa if I don't have to.
And I don't have to.
There is no need for the ENT specialist to waste his time or mine checking my ear for no good reason.
I'll call and cancel the appointment and I'll let them know that it was a wax plug that caused the "intermittent" and "positional" problem with the unit.
Perhaps they should start paying closer attention to their own intake protocol:  (2) clean device for wax build-up.

Wednesday, October 28, 2009

The Decision is Made

I will NOT be going to Barrhaven today to get in the queue for the H1N1 flu vaccination.
Not because I don't want to get the shot, you realize.
But more because I cannot drive an hour to wait an undetermined length of time in line without having the next day to recover before asking my body to engage in anything else physically demanding.
And tomorrow, I HAVE to go into Ottawa to see the ENT specialist.
No choice on that one.
I have to sort out this hearing aid issue.
So, the decision becomes an easy one, really.
"A woman has got to know her limitations,"  to misquote a favourite spaghetti film star.
And I know my limitations.
If I go to Barrhaven today, I will not be able to go to Ottawa tomorrow.
Plain and simple.
So, I guess I'll just watch those reports and see when the next opportunity for the swine flu shot presents itself.
Or not.
I'll just wait and watch.
I've heard that term before with respect to health care.

Decisions, Decisions ...

Oh dear, what to do???????
This business of the H1N1 flu vaccine is enough to make one crazy isn't it?
John is over 65 years old and isn't in any of the high-risk categories, so he can't get the vaccine yet but he has already received his seasonal flu shot (my doctor's office was nice enough to give him the shot while we were there last week, avoiding the need for him to attend a clinic somewhere, some time).
I am under 65 but I'm high-risk (asthma; respiratory difficulties) so I'm supposed to be in the first round of people receiving the H1N1 vaccine.  I am not looking forward to joining the queues that are being reported on the nightly newscasts. 
My doctor explained to me that he is not allowed to give the seasonal flu shot to anyone under 65 years of age until they have already received the H1N1 shot -- should he give the shot and the patient subsequently contracts the dreaded swine flu he can be sued!  That embargo will be lifted in December/January when the seasonal flu vaccine will be made available to everyone, regardless if they have received the other shot first.
AND that got me to thinking (I do that sometimes).
What if someone under-65 doesn't want to take the H1N1 shot?  It is, after all, voluntary.  What does the doctor do then? 
The patient is still at risk from the seasonal flu (just as the over-65 patient who HAS been vaccinated against it) and is perhaps at higher risk because of asthma and respiratory difficulties.  (Yes, I know, then that person should be taking the H1N1 shot, but stay with me here -- for some reason, this patient doesn't want the H1N1 shot but does want the seasonal flu shot.)  I think that patient should be entitled to receive the seasonal flu shot as early as it is available, just as the over-65 patient is "allowed" to receive it.  We have to sign consent forms to take these shots; waivers can be incorporated into consent forms quite easily.
That's the end of my thoughts on that.
So, bottom line is, if I want to get the seasonal flu shot before December/January (I have always recieved it well before then in previous years) I have to first get the H1N1 shot.
And I want my seasonal flu shot as soon as possible.
Because when I get sick, I GET SICK!
I don't get just mildly sick.
I get deathly sick.
For days on end.
That means getting in a queue somewhere for the H1N1 vaccination as soon as possible.
But the reports of the line-ups at the clinics are talking me out of participating in this nonsense.
Ontario has been conducting province-wide seasonal flu vaccine clinics for several years.
They go off without a hitch.  I've been to them with my little chickadee and my beautiful boy.
No line-ups out the door.
No waiting five hours to get a shot (people wouldn't do it, I'm sure).
No getting to the clinic four hours before the clinic doors even open.
This is pure and simple nonsense.
So if Ontario can conduct seasonal clinics every year without this chaos, why can't they offer H1N1 clinics in a more civilized manner?
  • Because we've been told that only certain people should go first so anyone who doesn't fit that identified first category is in greater panic mode than they might have been and decides to "fit" the category.
  • Because we've been told that the clinics will only operate for five weeks so people are frightened that they might not get theirs in that timeframe and they rush to be in the first wave of recipients.
  • Because we've been told that everyone needs to get one NOW so everyone rushes to get their shot NOW.
  • Because the vaccine has only just received approval and everyone needs to be first ("me first" syndrome).
  • Because every time we turn on the news we're being given another bad news story concerning the swine flu and a new urgency is identified so more people rush to get in line.
So, do I head off into Barrhaven today to get in the line-up for the roving clinic that is being set up there?  A good friend lives there and we could sit and bond while we wait for our shots (we are both high risk so we aren't 'jumping the queue' by any means).  Physically, there is no way I can stand in a queue for any length of time.  Hell, I can't go shopping for 15 minutes without being plunged into agonizing pain!  If I do go to Barrhaven, it probably means staying overnight because it's not likely that we will be out of there before dark (I can't drive at night so if I don't head home before dark, I don't go home that day).
If I end up staying overnight, it means that I have to drive back to Almonte tomorrow morning for my massage (which I don't want to miss) and then I have to drive back into Ottawa to see the ENT specialist (remember my hearing aid woes?).  That's a lot of driving in a 30-hour span, and I'm not doing well in the pain department on this dose of Cesamet (4.5mg/day now). 
So much to consider.
Whatever is one to do?
One gut tells me to stay home today and just go for my massage tomorrow, then go into Ottawa just the once.  I suspect that changes will have to be made in how the province is administering this H1N1 flu vaccine because the current method is clearly not working.  So perhaps waiting might not be a bad idea (and John will have to get his at some point too, so we could stand in line together somewhere, and he could hold me up).
My other gut tells me to go to Barrhaven today and take my chances that the wait will not be as long as reports have been (they always embellish don't they?) and I'll be able to come home tonight.  That would still be consecutive 'travel' days but at least I wouldn't be gone from home for 30 hours straight!
Decisions, decisions ...

Tuesday, October 27, 2009

My Hearing Aid Woes Continue ...

Oh dear, where does one start with these danged hearing aids?
For those who aren't familiar with the saga, I have worn a hearing aid in my right ear for some seven years now.  It was only in 2008 that I graduated to needing one in my left ear.
And that is when the fun started.
I paid top dollar for high-tech hearing aids that would provide me maximum benefit in various situations.
It wasn't until John was being refitted for his high-tech hearing aids that I mentioned to the audiologist that "when I'm in that situation ..." and she offered to check mine out.
Turns out I hadn't been given quite what I had paid for, or at least what I had reason to expect I should receive.
Back to the drawing board for new hearing aids.
New moulds were taken and the original hearing aids were sent off to have their electronics installed in my new hearing aids.
On August 14th of this year, I received the hearing aids that I had bought a full year earlier.
Everything was going along tickety-boo until mid-September when the right hearing aid went kaput.
It was rebuilt -- the internal electronics had to be replaced (high-tech you know).
Now, since October 18th, my left hearing aid has not been working.
Every time I put it on, it feels like I'm putting a plug in my ear.  Not good.
Last Thursday, while we were in Ottawa, I dropped off the hearing aid to be checked out.
On Friday, I received a call telling me that they could find nothing wrong with it -- it seems to be working just fine.  Of course it is -- the tooth never hurts once you get to the dentist!
Yesterday, I went to pick up my hearing aid, popped it into my ear and guess what?  I put a plug into my ear.
The staff were fabulous.  Immediately, the clerk called on the audiologist who offered to check my hearing in case it had changed, because the device was definitely working.  The clerk knew that I was in town for another medical appointment so she was very accommodating and asked if I was able to wait to be tested or would I have to come back.  It worked out that I was way early for my physio appointment so I sat and waited and had another hearing test right away.
No change in my hearing.
Let's check those hearing aids while I'm wearing them.
No.   Their settings are fine too.
And now the hearing aid is working just fine!
"It must be an intermittent problem," offers the audiologist.
Obviously, it's intermittent -- it happened before and now it's not happening.
We decide that I will wear it and if it continues to happen, it will have to be sent back for closer scrutiny.
So I head home.
And every time I move my jaw, my head, my anything -- the stupid thing feels like I have a plug in my ear.
I've been testing.
If I hold my left hand up to my ear, and push every so slightly upward on the bottom of the hearing aid, it works as it should.
Obviously, the problem is positional.
I just talked with the audiologist.
She agrees with me.
So now the question becomes, what happened between August 14th and October 18th to cause the shape of my ear to change?
We have decided that I should first see the ENT specialist to determine if something wonky has gone on with my ear (I have a very narrow, twisty canal and it causes no end of problems).
I see the ENT doctor (he's in the same office as the audiologist) on Thursday afternoon this week.  Once he clears me (assuming he does), we will take another mould of my left ear and send it off to the lab along with the hearing aid (here I go again, earless for ten days!) to have yet another hearing aid made.
Let's hope that we get this frustration sorted out.
I'm really tired of going to doctors' offices!

Monday, October 26, 2009

Another Early Morning Medical Call

My doctor's assistant called again this morning.
They just received the report of the X-ray that was done on my neck (hmmmm, I thought he had that report when I saw him last week).
It seems there is significant degeneration in my neck and spine.  No kidding doc?
On the morning of October 4th, when the doctor in Truro lifted my neck to examine the back of my head, the first words out of his mouth were, "You have serious arthritis in your neck and shoulders."  And that was just from putting his hand across the back of my shoulders to support me as he lifted me up!  He certainly didn't need an X-ray to tell him the state of my shoulders.
I remember giggling about it later with John -- imagine, I have arthritis; who woulda thunk it?
This was/is not news to me.
Anyway, my doctor recommends that I see a physiotherapist.
My choice.
I'm going into Ottawa for my weekly physio session today anyway.
The report is being faxed to my physiotherapist so she can know what she's dealing with.
We'll add it to the list.
She's going to have to start billing me double -- or triple -- for my sessions.

Sunday, October 25, 2009

Does My Body Know?

My doctor has often told me that he is more than a little impressed at how "in tune" I am with my body.  He has witnessed time and again incidences when I will present to him with really very little evidence of something, suggest what the difficulty is, we test my theory and voila!  I was right.
So he has learned, in the more than 30 years he has been treating me, to approach with caution when we are introducing new drugs and/or adjusting dosages.
My body will tell me very quickly if we are on the right path.
Obviously, Cesamet levels are something that my body responds to quite readily.
  • At 5 mg per day, I was virtually pain-free at home and I was able to pretty well function insofar as day-to-day activity was concerned.  On "out and about" days, I would take an additional 1mg in the morning, meaning I had taken 6 mg on those days (I was on day four of the higher 6 mg level while in 'travel status' when I had my seizure).  But at 5mg per day, I had already stopped eating and my weight loss was significant.
  • At 4 mg per day, which is the level the doctor reduced me to upon my return from Nova Scotia, my hip pain quickly increased and my sleep became disturbed (I returned to waking every two hours which is what I used to do prior to taking Cesamet).  However, 4 mg per day, I started eating again, even having periods of 'feeling hungry.'  Although I wasn't eating very much, at least I was eating.
  • At 4.5 mg per day, which is the level the doctor increased me to once he established that all my bloodwork was OK and the EEG was normal, I have not yet seen any significant hip pain relief and I still woke every two to three hours all night last night (it's only been three days after all).  Yet already this morning, I could not choke down a piece of toast for breakfast!
So it is clear that the Cesamet is affecting my ability to eat.
I will continue at the 4.5 mg per day for the next few days and see (a) if I get any pain relief for my hips, (b) if my sleep pattern improves, and (c) if this inability to eat continues and/or worsens.
The answers to each of these will dictate what my options will be with respect to Cesamet.

Saturday, October 24, 2009

The Highway will have to wait ...

So now I know I can drive, the highway will have to wait.
I know the roads will still be there, waiting for me to enjoy them.
The fact is, I CAN DRIVE should I choose to.
But for today and tomorrow, I have to rest.
We went out yesterday.
We left home at about 11:30am.
But we took John's truck because we had to buy huge bags of seed (we feed birds and it's getting to that time of year again).
I waited in the vehicle while John bought the seed and it was loaded into the back of the truck, so that wasn't physically demanding on me at all.
Then we walked through store #1.
I managed to get what we neeed and was OK when we left there.
We went to store #2.
I walked through that store because I wanted to look at stuff (I'm in Christmas shopping mode; used to be I would finish that shopping on Remembrance Day -- tempus fugit!).
When we left store #2, I had had the biscuit.
We got home at about 1:30pm -- a mere two hours after we had left.
And I was completely out of gas.
My hips were sore beyond measure and I could not put one leg in front of the other!
Now I know that the reason for this complete exhaustion was because I had so totally depleted myself the day before -- it had been far too long a day and I need lots of time to recover.
But near-home errands should be allowed, shouldn't they?
Apparently not.
Once we got home, I hit the massage bath tub and let it pound my aching body.
Then I rested.
I was asleep by 8:00pm last night.
And I didn't wake 'til 4:00am for a pee break (note:  I did not wake every two hours!).
I actually went back to sleep again until 7:00am -- that is eleven hours sleep.
I should be well rested today.  But I'm not.
My body is aching in every muscle it can identify.
I have applied heat pads to my upper back and ice packs to my hips and groin.
We have done gentle traction, now that we can do that again.
So far today, the TENs machine has addressed my neck and shoulders before it was moved to my mid-back.  It's being moved to my hips next.
Obviously, the reduction to 4mg/day of Cesamet has had some undesirable effects (Note:  my doctor increased me to 4.5mg/day as of yesterday):
  • my sleep pattern became interrupted (was last night an anomaly or did the slight bump up in Cesamet yesterday make the difference?);
  • my hip pain has increased considerably (previously, it took 5mg/day to eliminate the pain at home; 6mg if I was "out and about"); and
  • my body requires longer recovery periods following "abuses" of physical demands (at 5mg/day, recovery periods were very short between physical exertions).
I'll give my body another day to recover before heading into Ottawa on Monday for my physiotherapy session.  So I'll have to wait 'til then before I start ruining Tom Cochrane's song.

Friday, October 23, 2009

Life is a Highway ....

... I'm gonna drive it all day long.  (Apologies to Tom Cochrane -- I had to change it cuz I can't drive at night!)
My doctor's assistant called at 7:49am.
The EEG report arrived at 8:11pm last night. (Her nagging calls ...)
Everything is normal.
I CAN FIRE MY CHAUFFEUR!!!!!!!!!!!!!!!!
And I can take my ownself wherever I want to go.
Not sure where I want to go ---
But I'm sure I want to go somewhere.
Woo hoo.
I can drive.
I can drive.
I can drive.
(Sing along with me)
Live is a highway ...
... I'm gonna drive it all day long.
(or until my Cesamet runs out and I get too tired!)

We are "Temporarily" Depressed ...

At least the doctor is convinced it is a temporary delay.
He didn't have the EEG results yet.
His assistant had popped her head in to warn me before the doctor came in -- she had tried.
She had phoned and begged.
She had pleaded.
She explained how badly the doctor wanted it for the following morning's appointment.
No can do.
It takes at least two weeks for reports of EEGs to be completed.
We would just have to be patient.
The doctor waltzed in, pleased as punch.
"We have all the results," he says. "And everything is normal."
"No, you don't," I'm saying over him.  "You don't have the EEG -- and that is the one that matters."
"True," he says, "EEGs take a little longer.  But it will be normal, I'm sure of it.  The good news is that all your other levels are excellent."
I explained how desperately I want to fire my chauffeur and he said we just have to wait a little longer because he is convinced, having seen the results of the bloodwork, that the EEG will in fact be normal.  So we discussed the fact that everything else is settling down and I seem to be able to eat now (not a lot, but I am eating).  He felt that I should remain at the lower dose of Cesamet.
I explained that since the lower dose is not giving me enough pain relief to function around the home for normal day-to-day activities, it made no sense to stay on it at that dose.  I would therefore go off it altogether so I would appreciate his advice as to how I should do that (otherwise, I would proceed on my own counsel).
My doctor is one frustrated medic.
He simply doesn't know what to give me to replace the Cesamet if I stop taking it.  As he put it, "you've tried the gamut, haven't you?"  You bet I've tried the gamut.  In 25 years, we've had lots of time to try to address the matter of my hip pain!
He then explained about another approach that we might try, further down the road, but it would involve his taking further certification before he would be allowed to prescribe it for me.  I would have to research the drug thoroughly before I would agree to go that route (I did not get the name of it yesterday).  When I pushed for more info about the drug, he kept mentioning that it "works well for fibromyalgia" and I had to remind him that my fibro appears to be reasonably well controlled by Lyrica; we are trying to address the matter of the bursitis that I have in both hips -- that pain thus far has NOT been controlled by Lyrica or any other fibromyalgia-specific analgesic.  It did, however, respond extremely well to Cesamet.
In the end, we agreed that I would increase the Cesamet by .5mg in the morning, to see if it gives me the extra pain relief I need during the day, but I must continue to abstain from all alcohol.  If my appetite is again affected negatively, we will have to revisit this strategy.
The goal, of course, is that I will be able to get back to the Cesamet dosage that affords me pain relief and allows me to function on a daily basis, without putting me at risk of seizures.
Once we get the EEG results, which he fully expects will show normal activity, he will refer me to the neurologist who saw me back in 2006 to pursue further testing.  I want to have a sleeping EEG to see if my "nocturnal seizures" are an issue again.  We also need to address the matter of why my vision continues to decline at the rate it is.  My bloodwork results ruled out my eye doctor's concern with respect to diabetes in that regard.
Following the doctor's visit, we dropped off my hearing aid; went for lunch; physio; visited my little chickadee and beautiful boy; I got my haircut and then we came home.
It was a very long day and we were both absolutely exhausticated!
So now, we will wait for the doctor's call to tell us when I can fire my chauffeur.

Thursday, October 22, 2009

Revelation Day ...

Today, I find out the results of the EEG.
And the bloodwork and the X-ray, too.
But it is the EEG that interests me.
I really hope they didn't find that for which they were looking.
Will I be able to resume my own chauffeur driving duties after this visit?
It would seem that John and I are not the only people who are anxious for this visit to happen.
My doctor's office called yesterday to confirm that I would be there for the appointment.
They have NEVER done that (other than when I've had an annual physical booked).
And I've been seeing this doctor for over 30 years.
Kind of gives you pause, doesn't it?
Could be a simple change in office procedure.
Or could be he got results back and wanted to be damned sure I was going to be there (read: his staff was instructed to call me in and since I was on the books, they called to ensure I was in fact going to be there?)
Anyway, only a few more hours before I find out.
I also received a call from a doctor at the Truro Hospital yesterday.
Seems they just got the results of some of the bloodwork that was done on October 4th (sure glad it wasn't anything too very pressing!)
My Topamax level is very low and they would like to send the report to my doctor.  She was delighted that I was able to give her his fax number.  She would send that off to him right away so that he'd have it for my appointment this morning.  I didn't bother telling her that of course that level is low.  My seizures have been fully controlled for the past 21 years. I take the anti-seizure / anti-migraine medication more to reduce the frequency of migraines than for its anti-seizure properties.
So now my doctor and I have yet another item to discuss at this appontment this morning.
Like there wasn't enough on the agenda already.
And we have to stop in at the hearing aid place because it seems that my left hearing aid is kaput yet again.  I'm beginning to wonder about the quality of chips being used in this new-fangled  technology!
Another physio session today and my physiotherapist will be pleased to have been wrong.  Twelve weeks my you-know-what!
I'm not wearing the collar around the house any more. 
I will wear it for the car drive into Ottawa though because I know that I will need it for that.
My neck is still sore and still doesn't like certain movement but the dizziness and nausea seem to have stopped.
The severe pain has stopped.
And my range of motion is mostly back.
Discomfort is still evident but I expect that will be the case for a while.
Certain reaches hurt but that is to be expected.
But overall, I am much improved.
And I expect that I am vastly improved since last week in terms of physiotherapy expectations.  I was told to go slow and easy, which I did (sort of).  I just wasn't going to take 12 weeks -- that's ridiculous!
This was supposed to be my hair cut / sleep over in Ottawa day but because I don't have my "freedom of wheels permission" as I leave home this morning, I can't stay overnight tonight.
So after physio, we head over to my daughter's place for a visit.  Haven't seen her since we got back from Nova Scotia.  My beautiful boy must be missing me cuz he actually told me that he would give me five (did you hear me -- FIVE - that is four more than one!) hugs when he sees me.  That's huge coming from him and I plan to collect every one of them!
My little chickadee will take me to get my haircut (hairdresser's home business is just a few blocks away) while John stays with my beautiful boy.  Then we'll all have supper before John and I head home.
That will make for a long enough day indeed.

Tuesday, October 20, 2009

Good Day / Bad Day ...

That's the pattern that is life as a fibromyalgic.
As is typical for a fibromyalgia sufferer, you do today, you rest tomorrow.
Yesterday was a good day.  I was able to go into Ottawa and enjoy a nice leisurely lunch with my former boss-man.  OK, I felt the discomfort of sitting for three hours in an over-plush chair with no place to rest the back of my head (and thus my neck), but it was nevertheless a very pleasant outing.
And when we got home, I heated my neck (numerous times) and did my stretches and ouchie-ouchie-ooed as I went about my business.
It was definitely evident to both John and me that my neck had improved significantly by yesterday.
And then I got up this morning.
And my neck is oh sooooooooooooooooo sore.
You'd almost think it was last Friday all over again.
To be sure, the lower Cesamet dose is playing a role in this development.
My drugs go down; my pain goes up.
Also, since reducing the dose of Cesamet, I continue to wake every two hours all night long.  So as my sleep quality reduces, so too does my pain level increase again.
But also adding to my discomfort is the fact that I endured yesterday without benefit of any additional pain killers (I am still refusing to take anything other than my regularly-prescribed meds -- I think that's plenty under the circumstances).
My doctor will tell me I'm my own worst enemy, or I deserve what I got, or explain again how silly I am to have put myself through this.  But frankly, a regular Tylenol isn't going to do anything for the kind of pain I'm in.  The day before I had my seizuire, I had taken a Codiene Contin for the additional pain I was having.  While I have always tolerated Codeine in the past, I don't know if that is true since I'm taking Cesamet and I'm not prepared to take any more chances until I have more answers to too many questions.
I have long since learned to trust my instincts.
And my instincts are telling me to follow my instincts on this one until I see my doctor on Thursday.
So until then, I'll continue to treat my discomfort with heat pads, ice packs, my TENs machine, and my Acupen.
John has taken a much deserved day off today to spend the day hunting birds with his bird dog.
I will spend it here vegging.  It's good for the soul.
Not to mention what it can do for the neck and shoulder muscles.

Monday, October 19, 2009

Improvement is Evident ...

My neck is definitely improving.
Each day I see signs of improvement.
"And that's a good thing," to quote a nauseating homemaking queen.
My range of motion has increased a great deal and I can last longer each day in an upright position without using the neck brace.
But I have to be careful not to overdo it too.
Yesterday, the "kids" as John calls them, came over and made dinner for us, which was a really nice break from everything.  Jr was able to help his Dad with a few things that needed doing around here, and we always enjoy visiting with them so the day itself was a welcome interruption from the chaos that has reigned around here for the past few weeks.
The extra rest has obviously paid off and this morning, I feel better again than I did yesterday.
Hence, improvement is evident.
However, (there always has to be a caveat, doesn't there?) the reduction in the Cesamet dosage is really starting to impact on my well-being.
My right hip is back to its permanent "throbbing like a toothache" state again, just as it was before I started taking the Cesamet.
And last night, I woke every two hours like clockwork.  Just like I used to do in my pre-Cesamet nights.
Obviously, I am now below my therapeutic level of Cesamet in terms of its pain management benefit to me.
Which begs the question:  If the decision is made to keep me on a lower dose of Cesamet (assuming my appetite returns and any other issues are resolved to everyone's satisfaction), why remain on it at all if it does not afford me the pain relief and the sleeping enhancement that we were trying to achieve by adding it to my arsenal of pain management techniques.  I know what my position will be on that question.
We're heading into Ottawa today, but this time it's for pleasure.
We're going to have lunch with my former boss who is still a very good friend.  He's in town for meetings regularly throughout the year and we usually get together when he's here.  Once, it was brunch on Fathers' Day; another time it was dinner before we dropped him off at the airport as he headed out of Ottawa.  Whatever works for busy people!  This time I opted for lunch and, fortunately, it worked with his schedule.  In fact, he has the whole day free so we can take our time, enjoy a nice leisurely visit and still be home early, before I run out of gas.
He's been out of the country (Greece, Turkey, Italy and God only knows where all else) for the past month or so, and our contact has been minimal.  We made the lunch arrangement via chancy e-mail exchanges which include my reference to a "story" I had to tell him.
Just wait 'til he sits down and says, "So, what's new?" and we start to tell him.

Sunday, October 18, 2009

Finally, some Breathing Room

Well, I guess I kind of hit a wall Friday evening.
I just couldn't put one more step in front of another.
My sister and I considered the responsibilities associated with taking on the executrix duties of my cousin's estate and the legal advice we received was to leave it to the beneficiaries of the estate to work out.  Having come to that decision, we notified the appropriate parties and I will have to make a trip to Arnprior to deliver her personal effects to the lawyer's office. So there is nothing pressing for us to do in that regard now, other than whatever assistance the lawyer might need from me with respect to her personal family background, if he needs that at all.   Of course, once everything is sorted out, we hope they contact us about a service if they choose to have one (she was to be cremated and we expect her remains will be disposed of along with those of her partner, who predeceased her two years ago).
By Friday afternoon, the back of my neck had been becoming increasingly sore.
My neck muscles are not strong enough to hold my head up for any length of time, which in turn strains my shoulder muscles.  So if I'm upright, I need the collar to help hold my head up (and that collar is damned uncomfortable).  But I'm still "falling forward" because my neck muscles can't seem to propel my upper body backwards without a lot of pain yet.  I'm working on it.
Yesterday, I spent the day applying heat to my neck, shoulders and mid-back area and ice to my right hip area.
All day long.
When I wasn't battling dizziness.
And nausea.
The nausea comes from forward head movement.
The dizziness comes from forward body movement.
As long as I stayed sitting on my recliner, with my head and neck very well supported, I was fine.
Otherwise, I was dizzy, nauseous, or in pain.
Yesterday was not a fun day.
Yesterday was day 13 since "the incident."  Perhaps I'm a tad overly optimistic but I'm thinking I should be feeling better than I am.
I watched an episode of Law & Order, Special Victims' Unit yesterday (I had a couple of weeks' worth to catch up on).  In this episode, the character Elliott Stabler was pushed, very vigourously, off a rooftop (looked to be about three or four storeys, not clear how high). Anyway, Elliott lands flat on his back, on the pavement below.  He should have been dead!  But this is television after all.  And it is Elliott, after all.  So they find him and take him away on a body board and there he is in hospital, with the requisite neck brace, on the stretcher, the whole nine yards (just like I was).  Next thing you know, Elliott is up and about, in the squad room, even in court -- not even a little collar on his neck, and he's moving like he doesn't have a pain in the world.  By the end of the episode, he was good as new. The timeline was presumably within days of his having been thrown from that rooftop.   Gotta love the realism (lack of medical research?) in these television scripts!  Why wasn't mine written that way?
By 7:30pm last night, I had had the biscuit.
Hence, by 4:00am today, I've had enough sleep.
At least, I've wakened enough times and can't find another position to try for comfort, so I'll try upright for awhile.
I know that I should be taking something for pain. 
One of the reasons I'm feeling the pain more now is because of the reduced Cesamet dosage (and it's going to get worse too, because as of today that level reduces again by another .5mg per day).
It's not a coincidence that my neck pain became more evident and my hip pain returned as the Cesamet dose went down.
And I know that my doctor is going to tell me that I should have taken some Tylenol #3 for the pain and should not have put up with this.
But we are trying to figure out what is happening with my brain and there are so many things going on and we are adjusting this and trying to see if that is the cause of this --- I just don't want to introduce anything else into the mix; not even a pain killer.
My stepson and his new wife (you know, my new step-daughter-in-law who is older than I?) are bringing the fixings to make dinner for us today.  They figured we could both use the break from the craziness that has been going on around here.  It will be a fun afternoon, and John doesn't have to do any driving!
Other than a very pleasant outing to have lunch with my former boss tomorrow, I have no demands on us until my doctor's appointment on Thursday, so I'll lay low for the next several days and just let my body heal.
Thank God for hot pads and ice packs, and TENs machines, and Acupens.

Friday, October 16, 2009

Steady as we go ...

I am seeing progress ...
Each morning when I wake, my neck feels better than it did the previous morning.
As the day wears on, of course, and as I tire, my neck and shoulders tire and one would think I was in much worse shape than I am.
But I think that is quite normal with any kind of pain -- it's always worse when you're tired. 
So I am encouraged on the whiplash recovery front.
Of course, I knew that it would improve.
It's just that I don't like to be kept down at all.
And to be slowed down at a time when an unpleasant responsibility falls upon me (you cannot pre-schedule or delay the Big Man's plans) is just adding insult to injury.
Another factor diminishing my ability to physically keep up, of course, is having reduced the Cesamet dose (could we have picked a better time?).   I'm already feeling the effects of that lower dose -- my right hip is objecting to what had been becoming "normal" day-to-day in-home activity (throbbing like a toothache by late afternoon) and my energy level is starting to wane again.  I am supposed to reduce the dose again next week but I might wait until I see the doctor before I do that to discuss the pain management impact of that strategy.
Yesterday, I went for a massage therapy session.  We weren't sure how much pressure, if any, she would be able to apply in my hip and shoulder areas, but I really needed the treatment (and there are many stroking methods that can be used if the actual massaging is too much for me).   My massage therapist happens to be a Registered Nurse who works at the Heart Institute on weekends.  So she knows medical stuff too.  She tells me that the bruising on my left hip will remain visible for a good four more weeks, easily.  But she was amazed at the extent of area beyond the visual bruising that she was not able to touch, even gently.  And when she got to my neck and shoulders, she was able to do gentle stroking but that was it.  We agreed that my body is "still broke" in very many areas.  My bi-weekly sessions with her will provide another indicator of my progress.
The rest of the day yesterday was spent on the telephone, dealing with matters relating to my late cousin's affairs.
This morning, we head into Ottawa again, this time for my EEG.  Sure hope they don't find that for which they're looking.

Thursday, October 15, 2009

Gotta Take a Breath

Have you ever wondered why it is that just when you think your life is about as stressful as it can be for you, more stresses are thrown your way?
That's the way I'm feeling right now.
It seems that since some time mid-summer, I've been hanging on by my finger-nails waiting for something to give.
For that little something to just let go and give me room to breathe.
But there just seems to be one thing after another.
With never a break.
I'm sure a lot of it has to do with the fact that I need, probably, more rest time between efforts than most.  This damned fibromyalgia impacts on every aspect of everyday living and it is, I'm afraid, beginning to take a serious toll on my psyche.
Managing pain involves managing stress.
And managing stress is not easy when your soldiers are depleted.  I suspect my army is seriously in need of new troops.
I saw my eye doctor yesterday.
My vision has changed again, significantly.  (Really?  That's why I made the appointment!)
Normally, that would not be cause for concern, given my age.
Except that the prescription I'm wearing was just issued in January of this year and that was only done after six months of repeated testing to get a stabilized reading of my vision.  Why?  Because the prescription that had been written only 18 months earlier than that had already changed again.  And the changes in my vision have been happening too rapidly, even for my age.  So she did a Visual Field Test and checked me out super thoroughly to rule out any apparent eye disorder.  She will send a report to my doctor so he has it on time for my visit next week because she wants him to test me for diabetes -- that is one of the conditions that would cause this kind of rapid change in vision.  Woo hoo - more tests to book.  And she wants to see me again in six weeks to redo the Visual Field Test (if she gets the same results -- onwards for more indepth testing!) and to see if there is further change in my vision.
On a more encouraging note, by the time I returned from that visit, there was a message from my doctor's office advising me that my EEG has been booked -- for Friday, October 16th, at 9:15am.
OK, he must have called in a favour for that one!  I know he wanted this stuff done ASAP and he wants all the reports in his hot little hands when I see him next Thursday.  But I just saw him on Tuesday morning; the results of the X-ray and bloodwork that were done that morning will already have been reported to him; and I'm having an EEG tomorrow -- a mere three days after the "initial visit."
That, folks, has to be a record, unless you are actually IN THE HOSPITAL.
Obviously, my doctor knows me and he put the requisite priority level on that EEG request.
He knows that I don't like being chauffeured (I told him the brake pedal on my side is defective).
Unfortunately, between now and then, my chauffeur's duties will be many:
  • Today -- 11:30am -- massage (but he then has an hour+ to kill in downtown Almonte - ouch)
  • Friday -- 9:15am -- Civic Hospital in Ottawa for my EEG (sure don't want to be late for that one!)
  • Saturday -- he can have the day off -- my sister and I have to go to Arnprior to perform Executrix duties on behalf of my late cousin (my sister will have to be chauffeur that day)
  • Sunday -- he can have that day off too (I'm taking the day off to tend to my own personal affairs)
  • Monday -- let's hope we are doing nothing during the day because we are having dinner with my former boss (and still a good friend) in the evening
  • Tuesday -- probably have to go to Arnprior and/or Renfrew with respect to my late cousin's affairs
  • Wednesday -- ditto  (very much unknown as to timeline on that front)
  • Thursday -- back to Ottawa to see my doctor for results day.  Let's hope I can start singing, "Life is a highway, I'm gonna drive it all day long ..."  (apologies to Tom Cochrane)
My chauffuer and I have discussed this and we both hope (and believe) that he can be fired after doing his final duty next Thursday.  I promise to give him a good severance package.

Wednesday, October 14, 2009

Goodbye Cousin Deb

Tonight I held my cousin's hand as she passed away.
She had been held on life support until someone could get to the hospital to be with her as she passed.
Deb was taken to hospital the night before I left for Nova Scotia.
I had spoken with her on the telephone that evening, and she was not well.  She promised to seek medical attention and I told her I would follow up from Nova Scotia.
Well, we know what happened while I was there.
On my return from Nova Scotia, I had several messages to the effect that Deb was in hospital and had been since the very night I had last spoken with her.
I visited Deb in hospital last Thursday after my physio appointment.  She was her usual feisty self.  Issuing orders.  Straining to see what was happening out in the hall. Deb worked in the nursing profession so she had to know what everyone was up to.
The next time I went up to see Deb was yesterday, again following my physio appointment.
She was not doing well.  She had been moved to the Critical Care unit and it didn't look very promising.
This morning while I was at my eye doctor's office, the hospital called to say that Deb had taken a turn for the worse and they asked about next of kin.
Attempts to find her siblings were unsuccessful so I became the next of kin.
Which is exactly what she wanted. 
That is why we were on the phone the night before I left for Nova Scotia -- she wanted to make sure I had the name and phone number of the lawyer who had prepared her will, which names me as Executrix.
When I spoke with the Doctor, it wasn't clear whether we would get there before Deb would decide that enough was enough.
But we did get there before she left.
And I held her hand, and stroked her head.
And I told her it was OK to go, that her husband was waiting for her.
I believe she had actually really left some time mid-morning perhaps, but the hospital staff needs to know, for their own benefit, that people don't die alone.  So they did everything they could to keep her here until we could be with her for her final journey.  And I love them for caring so deeply for the strangers who pass through the revolving doors of the Critical Care Unit.
Rest in peace, Cousin Deb.  Your suffering has finally come to an end.

On the Road to Recovery ...

Well, I saw my medic yesterday. 
And, oh what a relief it was!
Along with the instructions from the Truro Hospital doctor was the information that when I had been admitted on the morning of 4 October, my potassium and sodium levels were very low.  The doctor wanted me to be sure to tell my doctor at home that those levels had to be checked again as soon as possible.  I, of course, did not fully understand the significance of that information (I do now).
My doctor jumped on it immediately.
He has ordered more bloodwork and we discussed many aspects of what happened, not the least of which was the acknowledgement that I had created "the perfect storm" for a seizure.  Except my seizures have been totally absent for the past 21 years and I am currently taking two different anti-seizure medications (Topamax and Lyrica).
He is requesting an EEG, of course, to rule out any current epileptic activity and naturally, I am not to drive until that has been done. 
Since I started taking Cesamet, my appetite has waned big time.
I have lost close to 20 pounds.
That's a good thing (for someone who would still like to lose that much again).
Except that I not only reduced my food intake -- my food intake all but stopped.
But I continued drinking the huge amounts of water that I drink, thus diluting the few nutrients that my body was getting, setting the stage for metabolic imbalance.
Apparently, that is why I was having intermittent dizziness, which I had not yet previously reported to my doctor (I put it to other causes -- I am, after all, fibromyalgic).
My doctor fully expects that my October 4th seizure was due to metabolic imbalance -- brought on as a result of my inability to eat (he is not ignoring the role the other factors played in the incident, he just doesn't think that they were the precipitating factors).  I had not yet discussed with him how much difficulty I was having eating; all he knew was that my appetite was reduced and I was losing weight.  Prior to going to Nova Scotia, I had intended to make an appointment to see him on my return; I wanted to discuss that very issue because I was concerned about the rapidity of my weight loss.
So now we have to find out WHY I don't eat.
As far as Cesamet is concerned, we have agreed that I would gradually reduce my dose, by .5mg per day each week to see if my appetite improves.  That way, we'll find out if it is Cesamet that caused the change in my ability to eat (fewer than 3% will have that response to the drug) or if we have to look for a more sinister cause.  So, as of yesterday, I only took 4.5mg of Cesamet (2mg in the morning; 2.5mg at bedtime).  I will remain at that dose for the rest of the week and will adjust downwards to 4mg/day as of Sunday.
In the meantime, bloodwork and other tests are being done to make sure we aren't missing the tree for the forest.
After the doctor removed my stitches (for which he had to dig, "the hair growth and colour very nicely matches the stitches," he grumbled), he proceeded to address the matter of my continuing sore neck.  I knew I had suffered whiplash in the fall backwards, but I was troubled because I was still having so much difficulty with forward motion (still causes dizziness and nausea) and backward motion (still causes pain).  Side motion is only mildly painful.  He examined me and announced, "Yes, you have whiplash."  WOW, no kidding doc? 
He ordered an X-ray of the area to rule out any extensive damage and suggested that I see my physiotherapist for rehabilitative treatment, and gave me a referral for same.  I was going to physio later that morning -- what a coincidink!
I have to see him again next week for follow-up, at which time he will have the reports on both the  bloodwork and X-ray requests, both of which he ordered ASAP.  We went to a lab down the road and had both completed within the hour, and still got to my physio appointment a half hour early.
The good news from my physiotherapist is that my whiplash could take as long as 12 weeks to fully recover.  Not that I will be in this state for that long -- just that there could be lingering pain for that long, and perhaps nagging pain beyond.  Oh joy!  And of course, because I am fibromyalgic, I can look forward to a possible longer recovery period, with probable longer residual effects.  Oh double joy.  But she has given me my guidelines for wearing that damned collar (on which, as it turns out, my instincts have been guiding me correctly).  I will continue with the gentle stretching and movement that I have been doing and we will monitor my progress with my weekly physio visits.  Twelve weeks my you-know-what!
Now, please, bring on that EEG so I can start being my own chauffeur again!

Tuesday, October 13, 2009

Stitch Removal Day

Finally -- the doctor should remove my stitches today.
Off to Ottawa to see my medic.  Lots to talk about.
Then to physio -- boy do I need it!
Then I'll visit my cousin in the hospital again.
Of course, there's always errands to run on the way home.
Gosh, I hate being chauffeured -- that brake pedal on my side just doesn't work!

Monday, October 12, 2009

I Washed My Hair!

I couldn't stand it any longer.
I had to do it.
This is day eight since the stitches were put in.
The doctor said to have them removed in ten days.
I'm seeing my doctor tomorrow, on day nine.
I expect he will remove the stitches.
In the meantime, I could find no way to keep the stitches dry while I washed my hair.
So, I opted for not washing my hair (yucko!) -- I wasn't going anywhere anyway.
But, today dawned and I just couldn't bear it any longer.
So I made an executive decision, just like I used to do when I was working.
I determined that the area SHOULD have been kept clean for all these eight days (it wasn't).
I determined that I was just lucky that I hadn't acquired an infection.
So, I decided that I would shower, wash my hair quickly (and very carefully, because my scalp is still really sore to the touch), and then blow it dry very, very thoroughly.
Surely, there can't be any harm in that.  In fact, I convinced myself that I probably should have been doing that all along (I've been making good use of my massage tub, let me tell you).
Oh well, better late than never.
Message to all Team Bonnie members.
If you had joined the "Shave your Head like Bonnie" group -- I'm really sorry.  My little chickadee tried to explain that the way my hair grows, by the time I was due for my next haircut, nobody would know that my head HAD been shaved.  On the other hand, if she were to shave a spot on her head, she would still be looking for replacement growth on her 50th birthday.  Having just washed and blow dried my hair, I took a look at the back of my head and my little chickadee was right:  nobody would know that my head had been shaved.  The doctor is going to have to look for those stitches tomorrow!  Thank you for your show of support though.  I hope your hair grows faster than my little chickadee's might have (had she shaved hers in support of her Mom).
If you were in the "Don't Wash your Hair for 10 Days" group -- go ahead.  You can wash your hair now.  I did.
So, now my hair is clean and I'm beautiful again.
Can you tell I'm feeling better folks?

Saturday, October 10, 2009

Slow Progress, But Progess Still ...

My neck feels much better this morning than it did yesterday -- I removed a pillow from my stash so that my neck would be more perpendicular to my body all night.  Obviously, it was the angle at which I normally sleep that it had objected to -- duhhhh!!!!!
It is abundantly clear that I cannot move my neck forward or backward without difficulty, although side movement is not an issue.  Forward movement induces almost immediate dizziness and nausea; backward movement simply causes pain.  The weakness in my shoulder muscles is still such that I can't hold my neck and thus my head upright for any length of time without having tremendous pain.  So I have to sit back and rest my shoulders about every 15 minutes or so.  While the neck brace helps my neck hold my head up, it does little to help my shoulder muscles do their job.
This morning, I iced the back of my neck while I read my newspaper and that gave me some relief, for a while.  Gentle exercise is difficult but necessary so the icing helps with the therapy.  I haven't progressed in my range of motion yet but I'm sure that will come, eventually.
My physiotherapist had also advised me to ice my bruised hip area because of the amount of heat emanating from it.  Ice is a wonderfully relieving way of dealing with lots of injuries -- but cold makes fibromyalgia pain so much worse.  Sometimes the cure is worse than the curse!  Anyway, here's a view of what my bruised hip looks like on Day 5:

You can see by the lovely hues that the bruises are healing nicely -- but oh, the area is sore to the touch!  One can only wonder what the bones in there must look like?
Anyway, I'm taking the week-end "off" and going very slowly.  Yesterday, I did a couple of loads of laundry (thank God for the stair lift!) and that was my limit.  I in fact only put one load away this morning.  The second load still hangs on the line downstairs.  It will be brought up later today, some time.
This morning, John had to forego his Saturday "big breakfast" but he was a real sweetheart about it and he made breakfast for me, because he is a sweetheart! And he even waited until I had read my newspaper before he served it.  Then he helped me empty the dishwasher (a chore that, as an unwritten division of responsibility, we agree is mine) to save me from repeatedly bending forward.
I plan to spend the rest of the day vegging -- gonna watch all those canned TV shows I taped while we were in Halifax.  Have to catch up on my fave series so I can start watching them live as they air.  Lots of viewing to do between now and Monday night!
Then John will take me into Ottawa on Tuesday morning to see my doctor.  An appointment to which we are both very much looking forward.
Did I mention that I hate being chauffeured?  The brake pedal on the passenger side doesn't work!  I really don't know how well my psyche will handle being curtailed if this goes on for too very long.
Let's hope for everyone's sake that I'm up and at 'em again before too much longer.

Friday, October 9, 2009

Another day dawns ...

And my neck is still way too stiff to suit me.
The doctor did not indicate how long he thought my neck should continue to be sore.  Truth be known, he wasn't overly concerned about my neck, having x-rayed and scanned to confirm that nothing was amiss.  He told me that it was OK if the nausea continued (which it has), but if continuous vomiting occurred (it has not), I was to return to the hospital immediately.  When he telephoned the next day to check up on me, he asked how my neck was and I told him that it was better than it had been but it still seemed to "want the brace" and he said I should wear it at least until I got home to give me the extra protection for the flight.  That would suggest that he felt that I should be fine without it by the time I got home.
I'm finding that I am fine without it now that I'm home.
Just as long as I'm not upright and trying to do anything.
Because then the dizziness starts.  And the pain.
It is quite evident that my neck still needs the assistance of the brace to hold my head up when I'm trying to walk or remain upright for any length of time.
And the pain in my neck on waking is significant so I don't know what I'm doing during my sleep but obviously I'm turning my head in a way that my neck is not liking.
I know that the effects of concussion can last certainly beyond the five days that it has been but I am an impatient person when my activities are curtailed.  And I didn't suffer just a minor blow to the head.
But I only have to make it until Tuesday morning until I see my doctor and get answers ... maybe.
In the meantime, I will continue to wallow in self-pity and drive those around me crazy.
I am so glad I am loved!  Sure hope I am still when this is over.

Thursday, October 8, 2009

Oh, my aching body ....

My bruises continue to surface -- everywhere.
It's amazing to think that I could have thrashed about enough to acquire the amount of bruising I have and NOBODY in that household heard me.  I know it was early in the morning, and everyone  had had a very long day the day before, and with the exception of the absolute non-drinkers in the group, I expect they had consumed mucho vino.  It was, after all, a wedding.  John was not wearing his hearing aids while he slept (who does?) so he certainly wouldn't have heard anything.  The location of the bathroom didn't help either -- it was off at one end of the house, isolating me from everyone else really.
Back in 1988, when I experienced my first episodes of seizures, I was naturally put through the whole gamut of testing, including the dreaded angiogram.  They threaded a tube through my groin up to my brain and then shot hot oil all through my brain (at least that's what it felt like!)  Everything showed clear.  No tumours.  So my epilepsy was ruled "idiopathic" and in discussions with my neurologist at the time, he opined that I had probably been an epileptic all my life and it just hadn't been known because my seizures only occurred at night.  He also thought that the late onset of my seizures (I was 38 at the time) was hormone related.
An interesting theory that might support that is the fact that I was also a late bedwetter, not stopping until I was 12 years old.  That is also the age when my menses started.  I suppose that the nights I wet the bed could have been the nights I had seized (the bladder usually does eliminate during a seizure).  I remember often complaining that my sister must have been punching me during the night because I was mysteriously bruised.  The neurologist suggested that I was seizing; and the bruising was from thrashing about.  (Many years later, the pain management specialist explained that fibromyalgia is often a result of the injuries suffered during epileptic convulsions.)
The neurologist explained that the seizures may have stopped altogether when my menses started, and then had started again at that point in my life due to hormonal changes (menopause).  But we had no way of knowing that I had NOT been having seizures in the intervening years because my seizures were nocturnal and one needs witnesses to report what happened.  So the hormonal influence was just theory at that time, but I remember his saying that he was fairly certain of his diagnosis.
In 1988, it was determined that I have "nocturnal epilepsy" -- for some reason, when I'm sleeping, my brain misfires.  If I wake and try to call on my brain to perform too many tasks before it is fully awake, I risk having a seizure. I did not lose my driving privileges, because it was felt that unless I drove in my sleep, I was not at risk. In any event, since 1988, my seizures have been totally controlled.  So much so, that I truly had "forgotten" that I am an epileptic.
On the morning of October 4th, I woke to go pee, but I didn't really want to be awake yet; I was in a strange environment; it was dark (I am light-challenged); I was groping my way and looking for the light switch and trying to be quiet so as not to wake anyone.  I guess I exceeded the number of tasks my brain was able to process on that particular morning in those particular circumstances.  And with the long, stressful, physically demanding days, and short nights, that had preceded the event, not to mention the consumption of more wine than is normal for me (on two consecutive nights, no less) I had set the stage for the perfect storm.
But the question I have to ask is:  what has happened to alter my hormonal balance to cause my brain to become actively epileptic again, after all these years?  The only fly in the ointment is Cesamet.
Today, John will take me into Ottawa for my physiotherapy session.  She will have to be very selective about where the needles can be placed for this visit!
We will then go to visit a cousin of mine.  We've just discovered that she's been in hospital since last week so we'll drop by to see her before we head home.
I still can't do too much; I have to rest a lot more frequently than is usual even for me.
But we will press on ...

Wednesday, October 7, 2009

I'm Baaaack

Well, I made it to Halifax and back, and I lived to talk about it.
But let me tell you, I almost could have been NOT able to be writing this blog.
Let's start at the beginning though and explain a little history.
My doctor had suggested that I should increase my Cesamet by taking the extra 1 mg a day or so before my departure date to help boost my pain tolerance for the trip.  And of course I would be taking that extra 1 mg each day while we were in "travel status" so he wanted me to then wean myself off the higher dose slowly by reducing it gradually when I returned -- in .5 mg increments to avoid the withdrawal symptoms I had suffered on previous occasions when I had taken the higher dose for several consecutive days. 
That was the plan.
I altered it slightly.  I only took an extra .5 mg two days before our departure date and I started taking the extra 1 mg the day before we left;  my plan was to continue taking the extra 1 mg until the day of our return on October 6th.
Thursday, October 1st was a stressful day for me, as documented below.
Friday, October 2nd was a very long, stressful, day.  What I didn't include in the post for that date was that once we arrived at the wedding home, I met a very busy house full of wonderful new people who were in full-fledged party mode.  They were also in a state of pre-wedding jitters and there was an air of excitability that I could have done without.  I was very tired and should have exchanged enough pleasantries to be polite and then excused myself, given my known limitations.  But I didn't do that.  I sat at the table and I partook and I enjoyed the socialization. Over the course of the evening, I consumed a bottle of wine.  I was able to push myself like that because I take Cesamet.  But I should not have consumed a full bottle of wine because I take Cesamet.  A glass or two OK, but not a bottle.  The evening ended at 1:00am.  I had difficulty going to sleep because the venue for the wedding reception had been moved to a considerable distance further than was originally indicated.  This had significant ramifications for me because John was the Best Man and was part of the wedding party, which meant that I would be on my own to drive 45 minutes through roads that reminded me of driving through the BC Rockies!  I spent a great amount of time mentally fretting about the matter.
Saturday, October 3rd of course was another long day and turned out to be stressful again for me.  You'd have thought I was the bride!  I was trying to stay back from everything and I did but the house was abuzz with activity.  The women left by 8:30am for hair appointments, instructing the men to be out of the house by 11:00am.  But by the time the women left, it was determined that I would drive the bridal party between venues!  OK.  At least I wouldn't be driving the BC Rockie-like roads alone!  So that left me fretting the rest of the morning.  My stress level was increasing as the day went on.  I tried to remove myself from the hub-bub but it was everywhere.  I took a Codeine Contin because my hips were already quite painful by mid-day, and the wedding wasn't until 3:00pm.  I would be wearing borrowed shoes that were comfortable but not what my feet are used to.  The wedding was beautiful. By the time we arrived at the reception hall, where it turned out we were standing for some time, my hips were screaming in pain.  I kept finding somewhere to sit while we waited for dinner.  I had noticed that the chairs around the dinner table were not very comfortable so I had scrounged about to find something to cushion the seat for me, which I succeeded in doing.  My stress level continued to increase because of the environment (noisy; can't hear anyone because everyone is talking).  We toasted the bride and groom with a glass of champagne.  By the time we sat down for dinner, I should have been calling it a day.  But again, I didn't.  I kept on trucking.  Dinner was stretched from 7:00pm to 12:00pm, over which time I again had several glasses of wine, along with several glasses of water.  I did not partake of the food, other than bread (many pieces).  We knew ahead of time that the menu was all foods that I would not eat so I had made sure that I had eaten before I left the house.  Again, the only reason I was physically able to last this long was because I'm taking Cesament.  We arrived back at the house by 1:00am and went immediately to bed.
Sunday, October 4th at 6:00am I woke for my usual pee break.  Nothing unusual about that.  Except I really didn't want to be awake.  So, in my half-wake state, I got up and tried to find my way to the washroom in the dark, in a strange home, trying not to disturb anyone else in the house, and hoping I didn't knock anything over with my outstretched arms as I groped my way through to the washroom.  I came to semi-consciousness in the final throes of convulsing, laying on my back on the bathroom floor, in a pool of urine.  Initially, I didn't know what was happening or where I was.  I located my glasses and put them on.   I looked at my watch.  It was 6:20am.  Twenty minutes had passed since I left the bedroom.  I came to again laying on the floor with my glasses in a different place beside me. I sat up and rested against the wall, but could not move further. I started crying, and I called for help but I was too weak for anyone to have heard me.  Eventually, I pushed myself toward the toilet where I managed to get up and finish my business.  I used my pajama bottoms to clean up as best I could (I was horrified that there was urine on the floor that needed to be cleaned but I knew that I could not take care of it properly).  I made my way back to the bedroom, fell onto the bed, and alerted John to the news of what had just happened.
"I just had a seizure."  It was 6:40am
Of course John was up in a flash.  We've been together since 1995 and he's never had to deal with this.  I am an epileptic, but it's never even been a concern.  I haven't had a seizure since 1988.  What the hell was going on?
I told him that my head really hurt and I was concerned because I must have hit it very hard and after what happened to Natasha Richardson, I didn't want to ignore the injury.  So we should go to the hospital.  It didn't take long before the entire household was up and involved and concerned, of course.  The groom became the chosen one to make the 40 minute drive to the nearest hospital.  I was bundled up, carefully placed in the car with John beside me, and off we went.  It was 7:00am
By the time we arrived at the hospital, I had begun to vomit and my neck was very stiff.  We were quickly ushered in and a neck brace was slapped on me. I was checked out neurologically (all appeared OK); an X-ray was done (no broken bones in the head or neck); and they ended up having to take a CT Scan because I kept vomiting (it too showed all OK).  They also did bloodwork which indicated low levels in a few areas which the doctor wants followed up by my doctor to see if the levels come up once the "trauma" is over.  Then he finally paid attention to the back of my head which hurt like hell.  "Oh, yeh, you need stitches," he says.  And he proceeded to shave the back of my head, place three stitches down the middle of my head, and then put a pretty bow back there.  "Leave the stitches in for ten days," he says. (Do you know how dirty my hair will be in ten days' time?) 

Before leaving the hospital, the doctor instructed my husband that I was to be awakened every two hours for the next 24 hours and it would not just do to wake me up.  Nooooooo, I would have to answer a series a questions.  (My name; where I was; the date; the usual post-concussion stuff, etc)  We went back to the house and I rested (with two-hour wake-ups).  I offered to write out the answers for them and post them on my pillow, since it didn't sound like they would be able to remember who I was, where I was, or what date it was.  But they insisted they would be asking me every two hours anyway.
Monday, October 5th
This was a much better day, in the scheme of things.  I awoke very sore (and very tired, with having been wakened every two hours all night long).  By now the bruises were really surfacing: my left hip is bruised the entire width of the hip (the photo below was taken on October 5th but doesn't do my hip justice; the bruises are much uglier today);

my left shoulder is bruised; my right shoulder has an abrasion; my right hip is lightly bruised; my right elbow is bruised.  My shoulders are sore from left to right (a common phenomenon following a seizure).  The bride was able to reconstruct what happened for me by "following the evidence" -- it would seem that as I lost consciousness, I reached for a towel that was hanging on the wall rack in front of me, my head went backwards and hit the door frame as I went down, slicing the back of my head and scraping my right shoulder on the door jamb in the process.  The other miscellaneous bruises would have come from the seizing activity against the floor and/or door frame.
The doctor telephoned to find out how I was doing, which I thought was rather nice of him.  I don't think that kind of thing happens here in Ontario following an ER visit by a tourist, does it?
Tuesday, October 6th
Finally, we flew home (did I mention how much walking there is at the Halifax airport?)  Yet another long, tiring day.  My little chickadee was really glad when I got home and she saw for herself that I really was OK.  Once home, I took a nice long, relaxing, bath before crawling into my own bed.  I don't think anything was ever so welcome!  My bruises have really started to surface now.
Wednesday, October 7th
Today was a busy, but slow and easy day.  I had to contact my doctor, of course.  I will see him first thing Tuesay morning to have the stitches removed and to discuss the matter of why my seizures have returned after 21 years of being held at bay.  There are lots of contributing factors, to be sure, but we still need to wonder why, after 21 years of being so well controlled, have I had a seizure again?  The fly in the ointment is Cesamet, which is contraindicated in active epilepsy, but my epilepsy has laid dormant for 21 years!  But for now, my chauffeur's name is John.
So there you have it.  My exciting adventure to Halifax.  What a trip.  Not one we're likely to forget any time soon!  On a lot of levels.