Sunday, February 27, 2011

Oh dear, I overdid it again.

Really, you'd think I'd learn.
My physiotherapist even warned me too.
But do I listen?
Oh no, not moi!
I'd been having such success with the TENs machine (no reaction to the electrodes) and was tolerating the bike so well, that yesterday I left the TENs unit on for most of the day whilst I sat in front of the computer finalizing our income taxes.
Took care of that little project, and a few others, making sure I took frequent breaks to stretch and do all the required stuff in order not to stress my body too much.
And after dinner, before retiring with a dose of the valerian tincture, I hopped on the stationary bike.
Pedalled for four minutes, with little effort.
Now, the only reason I stopped at four minutes was because I could hear my physiotherapist cautioning me not to overdo it.  So, having done three and a half minutes the day before, I figured I'd better not push it.
Yeh, well, I guess I should have gotten off that damned bike at the three and half minute mark.
Because, in spite of having taken that valerian tincture on my way to bed last night, each time I woke to change positions, I was acutely aware of how much sorer I was than normal (although I had no difficulty going right back to sleep, thanks to the tincture, I'm sure).
And when I got up for the day today, my hips were letting me know that they were not at all happy.
Same old, same old.
I'm paying the price for having done too much, too soon.
Needless to say, today is a day of imposed rest and relaxation, whether I like it or not.
And, to add insult to injury, I have a rash from the TENs electrodes -- but only on the front contact spots, ever so slightly on one back contact spot, and not at all on the other back contact spot.  Go figure -- part of me is allergic, but not all of me?
So here we go again.
Now I have to lay off the TENs machine until the allergic reaction calms down.  And when I start using it again, I'll have to limit my time to less than six hours (that should be doable, as long as I remember to remove it).  Why do I leave it on so long, you might ask?  Because I don't get any residual benefit from it.  It only provides relief while I'm wearing it, but the relief is profound!  It beats taking pills and frankly, I think it works better than any pills I've tried so far.
I'm starting to become increasingly anxious to see that surgeon -- I might just beg him to expedite my surgery, given the success stories I'm hearing from people who know people who have had a hip replaced.

Friday, February 25, 2011

On the bike again!

I climbed on the exercise bike earlier this week (since I'm wearing the TENs machine again) and pedalled away.  I managed two minutes before I'd had the biscuit.
That was Tuesday.
On Wednesday morning, I again managed two minutes (but it was a struggle to stay on that long!).
My physiotherapist was delighted to hear that I'm tolerating the TENs electrodes again and that I attempted the bike.
"Now remember," she cautioned me, "just because you can, doesn't mean you should.  Don't overdo it!  You know you have to be careful of that!"
I know that all too well.  At least, I haven't yet forgotten that lesson.
And my hips were certainly letting me know that I had to approach with caution.
Yesterday, even having had my physiotherapy treatment the day before and then going for massage before coming home, walking was very difficult.  My left hip was especially problematic, yelling at me with every step.
But as has been my usual pattern, having had that massage yesterday afternoon, I slept restfully last night (in spite of the repeated wake ups to change position).  Hence, I awoke this morning feeling quite refreshed.
Now, there is another factor that may have influenced my more "restful" sleep last night but I will have to do more tests to determine its efficacy.
As I was leaving my massage therapist's office yesterday, I mentioned to her that I was in search of "valerian tea," which I understood helped promote sleep.  She is big time into this kind of stuff and told me that she had tried the tea and it "smelled of dirty socks" so she couldn't stomach it.  But she had the valerian tincture which most people preferred to use. (I had earlier been to the health food store and had seen the tincture but had not bought it, wanting to discuss it with her first because I knew she was knowledgeable about it.) 
I bought a bottle of valerian tincture from her and took some at bedtime last night.
So how much did the tincture add to the quality of the restful sleep that I usually enjoy following my massage session?  The only way I'll find the answer to that is to take the tincture on a non-massage day, which of course I will do.
Apparently, for best effect it is recommended that you take this stuff in small dosage three times a day, every day, so the body gets used to the calming effect it offers.  But some people prefer to take the entire daily dose once, at bedtime (the tincture available at the health food store was actually labelled for once a day dose).
I do not believe in taking anything every day to promote sleep, preferring to take something, if I have to, only once in a while.  In my case, if it does in fact help me sleep, I will use it perhaps once a week on a non-massage day (say, Sunday?) so that I will conceivably enjoy two nights of restful sleep each week.
Naturally, I'm hoping that once my hips are replaced I will be able to enjoy a full night's sleep every night, without assistance of any kind.
At least, that's the long term plan.
Anyway, this morning, I managed three-and-a-half minutes on the exercise bike (yes, I was wearing the TENs machine, and yes, I pushed myself).
Two and three minutes might not sound like much to a lot of people.  But for me, that is HUGE.
I will follow my physiotherapist's sage advice and I will try not to overdo it (I don't want to sabotage my own progress).  Perhaps, by spring, I'll again be able to get outside walking with my poles.
I'd like to lose another ten pounds before my surgery.  Now that I can tolerate the TENs electrodes again, my chances of succeeding at that weight loss goal are certainly increased because as long as I'm wearing the machine, I can move without pain.

Wednesday, February 23, 2011

TENs to the rescue

After not being able to use my TENs machine for several months, having suffered an allergic reaction to the electrodes, I decided to try it again on Monday morning.
I wore it for three hours and the relief was unimaginable.  There is an incredible "aaaaaaahhhhh" effect when I wear the TENs machine, and I guess I had forgotten just how beneficial it was.  Too bad there is no residual benefit for me though (the relief I get from it stops immediately that I take the damned thing off).
Anyway, I wore it again yesterday and this time I left it on for six hours.
It is so nice to be able to go about my day, walking around like a normal person, without pain.  I managed to take care of quite a few naggy chores that had been hanging over my head for way too long.  What a sense of relief to have them off my worry wheel!
So far, no allergic response to the electrodes.
This morning, I'm again wearing the TENs unit but I'll only be able to leave it on for about two hours until I have to hit the shower to get ready to leave here.
Today is my physiotherapy day and I have to leave earlier than I normally would because my usual 1:00pm appointment is at 11:30am.
I'm staying in the big city tonight because I have an appointment with my doctor first thing tomorrow morning, so to make use of the time, I'll be having lunch at my good friend LC's after my physio.  Then I'll pick up MLC at work and we'll go back to her place to watch two of my TV shows that my stupid DVR failed to tape last week (long story).
We'll go get MBB at his daycare just before it's time to go to my hairdresser's place for my routine haircut (time to get beautiful again!).  Then we'll all have supper (at this point, the specifics of the meal are undecided).
Tomorrow morning, since my doctor's appointment is so early, I can't take MBB for breakfast (I'll make it up to him), but my good friend RLR will meet me and we'll have breakfast.  When that meeting breaks up at around 10:30am, I'll head home.  But since tomorrow is massage day, I'll linger around town (there's groceries to do etc) until it's time for that ever-beneficial session.
That means I'm leaving here at 10:30am today, and won't be back before 2:30pm tomorrow.
Later, gotta go get grub.

Tuesday, February 22, 2011

Guess I'll be ready

My physiotherapist is readying me for hip replacement surgery -- way ahead of schedule!
You see, her husband is having his right hip replaced today, so he has already jumped through all the hoops that I will be going through in the coming months.  And my physiotherapist accompanied her husband to the "prehab" session that all patients are required to attend prior to their surgery.  These sessions are designed to get the patient ready for the procedure and to help prepare them for recovery.
A large part of the recovery is muscle strength and there are certain exercises that work the precise muscles involved with the hip joint.
My darling physiotherapist, being the proactive health care worker that she is, showed me the exercises a couple of weeks ago (I happened to see her the morning after her husband's prehab session).
I've been doing the exercises faithfully ever since.
Three times a day.
And I can already feel the difference.
At first, my left hip was really objecting to the new demands being put on it but it has decided now to co-operate.
With each day, the exercises are getting a little easier to take, not hurting quite as much.
So I'm really ahead of the curve on this project.
Normally, a patient would attend the prehab session some time between the appointment with the surgeon and the actual surgery date (usually some six weeks prior to the surgery).
Here I am, haven't yet seen the surgeon, and I'm already two weeks into the exercise regime.
By the time I see the surgeon, I will have already been doing the strengthening routine for nine weeks.
By the time I go for the prehab session, I could conceiveably be some six months into the program.
And that should be another six weeks before the surgery.
Surely by the time my date with the scalpel rolls around, my muscles will be well-strengthened, no?
If I keep this up, I might be recovered before they even replace my hip!

Sunday, February 20, 2011

We're going to Opening Day

Yup, we're going to be in the stands for opening day of the Blue Jays 2011 season.
Actually, we'll be in the stands that entire weekend (well, during the games anyway).
Bought the tickets yesterday.
Unfortunately, we'll be in the nosebleed section for the Friday night -- only seats available.
But on the Saturday and Sunday, we almost got the section, row and seats we like (it's like our names are stamped on them).  We like section 228, row 9 or 10, seats 101 - 102 and 103.
We'll be in Section 227, row 11 (on Saturday) and row 10 (on Sunday), seats 101 - 102 and 103.
So we didn't do too badly overall.
Oh, it's going to be so much fun to be there for opening day.
Last time we were at opening day for a ball game, it was at the Montreal Expos and that was waaaaaaaaay back in about 2000, I think.
Yes, I'm fairly certain that was the year because Bob, our baseball-fanatic friend with whom we stay in Toronto, had driven my new car to me (my cars usually came from Hamilton), and then we all drove to Montreal for opening day.
We had a blast.
That was back when I could handle long days and long car trips.
I had worked all day (having left home with the van service at 6:00am), John and Bob picked me up at work at 3:30pm and we headed off to Montreal to catch the game.  Then after the game, John and I drove back home.  And I went to work the next day, again catching the van service at 6:00am.
I can assure you, I couldn't even hope to keep a schedule like that today!
Anyway, this year, we'll take the train to Toronto on the Friday, arriving early enough for me to rest before we head off to the evening game.
I'll be able to rest the next morning before taking in the afternoon game.
Same thing the next day.
Then the day after that, on the Monday, we'll take the train home, leaving Toronto at noon.
Then I'll crash.
But it will be sooooooo worth it.

Friday, February 18, 2011

Trying to get a good night's sleep

Gosh, it would be nice to be able to sleep through the night.
My body so needs a good night's rest.
But my hips simply won't allow that to happen.
I naturally sleep on my left side.
So that is my "going to sleep" position (with the requisite pillow between my knees, of course).
When I waken, usually at the two-hour mark -- never more than two and half hours later -- my left hip is burning in pain.
I switch sides.  But that manouever, as I've related many times, requires that I sit up, reposition my body, then lie down on the opposite side (positioning the pillow between my knees again).
When next I waken, at about the two-hour mark -- again, never more than two and a half hours later -- both hips are burning in pain (the left hip hasn't yet calmed down).
I roll onto my back.
The effort of relocating my legs causes excruciating pain in both hips.
I have great difficulty going to sleep on my back and only do so in the most exceptional of circumstances.  Most times, I end up getting out of bed, often staying up for the day at this point during the night (actually, early morning).
On Wednesday night, I went out to the sofa (which is a recliner at each end) and got myself set up to go back to sleep there.  Normally, I can drift off in that position because it forces me to stay on my back.  Problem is, my neck objects to it and this time, when I woke some two hours later, I had a headache as a result of the tightness in my neck.
Can't win for trying in this game.
Fortunately, I had massage therapy on Thursday.  She found my analogy very interesting when I told her that my legs "weren't listening to my brain."  That's how I describe the sensation when my hips are as sore as they were yesterday, making it particularly difficult to walk.  She was able to work out the knots very nicely.
I'm a little better rested this morning because I always sleep best on the nights I've had a massage.  I still wake frequently, but for some reason, I never seem to have any problem going right back to sleep.
Perhaps the answer is more frequent massage sessions.
Like, every day.
Yeh, right, like that's gonna happen!

Thursday, February 17, 2011

I've got my next consult date

Well, my appointment with the ortho surgeon has been set:  April 12th -- 1:45pm.
It just happens to be a Tuesday.
Which just happens to be my physio day.
Which I just happen to always schedule for 1:15pm.
Soooooooo, rework required of my physio appointment.
But ooops.
My calendar shows that I also have a 10:30am appointment with my ENT specialist that date (that's the vacuum-my-ears procedure that I have to undergo every four months).
You had to know that something like this would happen.
My plan?
Keep the ENT appointment (it's a good thing to be able to hear well when visiting a new doctor, I think).
Schedule physio for the down time between that appointment and the ortho surgeon appointment.
Grab lunch at Tim Hortons at the Hospital before hitting the Clinic to see the surgeon (they're all in the same place and one ends up paying maximum daily rate at the two hour mark anyway).
Then finally go home.
I want John to accompany me at the ortho surgeon appointment.
That means we will, together, have to leave home by 9:30 that morning.
John will have to sit and wait while I'm getting my ears vacuumed (fortunately, that's a five minute procedure at best).  Then he'll again have to sit and wait while I'm at physio (sometimes he's able to take advantage of the time and go somewhere nearby to take photos).  Then we'll go to see the ortho surgeon and hear what he has to say (my best friend sister, who also just happens to be one of his patients, tells me that he reminds her of Dr. Sweet from the TV show Bones).
We probably won't get home much before 3:30pm.  Another long day away from home.
These kinds of days are hard on me, on lots of levels.  But they take a toll on John too, mainly because they involve so much waiting around for him.  But he is usually very gracious about it.
We regard these types of days as opportunities to hang out together, something of which we don't do nearly enough. I guess we'll have lots of opportunities for that during my recoup period, since I won't be able to drive for, I believe, six weeks following each surgery.
Between now and April 12th, I guess I'll continue obsessing about the whole thing, because that seems to be what I do!

Tuesday, February 15, 2011

Happy Birthday, my Best Friend Sister

Today is my big sister's birthday (she has 18 months on me).
She's been by my side since the day I was born.
In fact, she brought me home from the hospital, so she claims (I don't actually recall the event).  But while the older siblings had been farmed out to various aunts' homes while our mother was confined to hospital for my arrival, she stayed home with our father.  So she of course went with him to bring "her baby" home.
And "her baby" I've been ever since.
That's me (the baby) with my big sister and our mother on my first birthday (we think).
We grew up very tight, never straying far from each other's side.
Obviously, life's circumstances took us in different directions but the telephone was always there.
When our children were young, we lived within walking distance of each other so the cousins grew up very closely, until their lives took them in different directions.
My best friend sister and I now live very separate lives, but our affection for each other has not changed.
Each time we speak, it's like we've never left each other's side.
"Sisters by chance; friends by choice"
Happy birthday, my best friend sister.

Monday, February 14, 2011

Happy Valentine's Day

I've already talked with my three most special valentines today, my husband (naturally), my little chickadee and my beautiful boy.
My husband and I will celebrate the day in style when we go for that romantic dinner we tried to have on our recent anniversary outing.
That's right.
We're going for that pizza dinner we wanted to have two weeks ago.
We're such romantics, aren't we?
Happy Valentine's Day!

Sunday, February 13, 2011

Should I or Shouldn't I?

OK, here goes.
The fact that I have to "decide" whether or not to undergo hip replacement surgery has caused me to undertake a great deal of research over the past few days.
A little learning can be a dangerous thing!
Notwithstanding the fact that the nurse practitioner clearly outlined for me precisely where I am "bone-on-bone" in both hip joints, there are many other indications for what could be causing my pain, not the least of which could be weak muscles from years of non-use!
We cannot forget that I am fibromyalgic, a sydrome that in itself imposes far too many limitations on my activity level (but we cannot allow that diagnosis to cloud another, possible different cause for the hip pain).
Add to that the bursitis (that I may or may not have) and the osteoarthritis (that I now seem to definitively have), and we have quite a schmozzle to try to untangle.
I guess the bottom line is, I don't want to have surgery if it is not indicated; but I also don't want to NOT have surgery if it is indicated.
I don't have the earliest reports of the many x-rays, scans and MRIs that have been taken over the years, but I know that as early as 2001 (when my beautiful boy was born), I was already walking with a cane, presumably because the "bursitis" in my right hip demanded that I use something to assist me.
In February of 2002, an X-ray of my lumbar spine reported, "... mild disc space narrowing at L4-L5 with anterior lipping. ... There is arthritic change at the articlar facets at L4-5 and L5-S1."
In March of 2002, a CT scan of my lumbar spine reported:  "At L3-4 ... mild degenerative disc changes ... and mild OA changes of the facet joints; ... At L4-5 ... mild degenerative disc changes with small anterior and right posterolateral osteophytes ...  There is a disc bulge. ... mild OA changes of the facet joints." (Note:  osteophyte = bone spur). "At L5-S1 ... disc bulge with no focal herniation or evidence of spinal stenosis.  ... mild OA changes of the facet joints."
An x-ray of both femurs was taken in January of 2003 and reported "mild degenerative change in both hips with mild narrowing of the joint spaces."
In February 2003, the orthopaedic surgeon who had requested said X-ray commented in her report to my doctor that, "There is definitely some narrowing of the joint space of the hips, but more marked on the left than on the right.  There is no calcification over the greater trochanteric bursitis. ... I am not convinced she actually has a bursitis since her bone scan in 2001 was negative."  (So as early as 2003 it was suggested that we were not dealing with bursitis ... hmmmm.)
As a result of that report, an MRI was done at Kingston General Hospital which reported, "The right hip joint appears unremarkable with no evidence of joint effusion."
Yet, by 2005, I had incorporated numerous pain management techniques, some at considerable cost:
  • We renovated our bathroom to install a jet massage bath tub (added in 2003).
  • We bought an egg foam mattress insert to provide me with an extra level of comfort when sleeping (eventually, we changed our mattress, at great expense).
  • I changed my vehicle to a larger, higher-off-the-ground SUV, because I could no longer get in and out of a car comfortably.
  • We installed a stair lift in our home because I could no longer manage the stairs.
  • I was by this time going to physiotherapy on a weekly basis and having full-body acupuncture as part of that treatment.
  • I started going for bi-weekly massage therapy in 2005.
By February 2006 I was retired, on disability pension, because I could no longer carry out the duties of my job or make the daily commute to Ottawa.  My inability to get restful sleep was taking a serious toll on my state of mind and I was frantically seeking pain relief.
A March, 2007 X-Ray of both knees reported, "no evidence of osteoarthritis." 
In June, 2007, a Bone Mineral Densitometry test was done and found me to be in good health.
Also in June of 2007, an X-Ray of my lumbosacral spine reported , "disc space narrowing demonstrated at the L4-L5 level ... Lumbar spondylosis at L4-L5 level."  (Note:  spondylosis = osteophytes = bone spurs)  So apparently, I have arthritis in my spine too. At L4-L5-S1 -- precisely the points that send referred pain to the hip and down the leg, mimicking hip pain.
In March, 2008, the X-Ray of my pelvis and bilateral hips reported "The hips are bilaterally symmetrical.  There is no significant joint space narrowing or osteoarthritic change in either hip."
In June, 2008, a whole body scan reported, "A mild degree of increased bony uptake in the medial aspect of the left acetabulum as compared to the right side is probably representing mild degenerative bony change."   (Note:  The "acetabulum" is what we lay-people would call our hip socket.)
Also in that report:  "A focal mild increased uptake in the medial aspect of the right shoulder at the humeral head is in favor of mild osteoarthritic change ..."  (Wow, I have arthritis in my shoulder -- who woulda guessed it?)
It was at this time that I started taking Lyrica which helped greatly in the management of the pain of fibromyalgia, but did nothing to relieve the pain in my hips.  I continued to wake every couple of hours because I could not put pressure on either hip joint for any length of time.  Turning over in bed was an impossibility -- I had to actually sit up and reposition myself to switch sides.  The lack of restful sleep was becoming a significant concern.
In September 2008, my doctor had me try Ralivia for added pain relief.  It didn't work for me so we went back to Codeine. 
In 2009 we replaced the mattress we had bought in 2005, hoping it would lead to a better night's sleep.  Within a few months, I added a piece of egg foam to my side of the bed because I needed yet more cushioning under my hips.  In spite of these changes, I continued to wake every couple of hours to switch sleeping sides -- a physical effort that was becoming increasingly difficult for me.
In March, 2009, an X-ray of my pelvis and both hips reported, "Both hip joints appear normal.  No evidence for osteoarthritis."  (What, it went away?  All by itself?)
In March 2009, steroid injections in each bursa failed to give me any relief.
By April 2009 I was using Oxycodone for pain relief, except it wasn't working overnight.  I still woke every few hours to switch sides, so now I was doped all day long because I couldn't get a good night's sleep and I was taking a powerful narcotic.  It didn't take long though for my body to decide that it wanted more of that "good stuff" way too often (physical dependence) so I pulled the plug and took myself off it, cold turkey.  Since I was effectively in "withdrawal" every six hours while I was taking it, I opted to go through the misery and force my body to do without and just "get over it."  It wasn't pretty, but thankfully I hadn't been on it long enough to make it too difficult a process.
In June 2009, on the advice of the rheumatologist who had tried the steroid injections in my bursa, my doctor prescribed Cesamet (synthetic marijuana) for pain relief.  I used it successfully for eight months until it became obvious that it was causing an eating disorder (I had lost 20 pounds without explanation and I was experiencing severe discomfort on food intake).  Discontinuance of the drug plunged me into withdrawal symptoms such that I probably should have been hospitalized (nobody should be made to witness their loved ones going through that).  Another 20 pounds was lost through that episode.
Having now tried opioids unsuccessfully, I stopped using anything for added pain relief, choosing to take Codeine on an "as needed" basis only.
In January 2010, my cervical spine was X-rayed: "Marked disc space narrowing is seen at C-5-6 and C-6-7 with some moderate narrowing at C-4-5, in keeping with degenerative disc disease." 
In February 2010, an MRI reported, "There is increased joint effusion on the left in comparison to the right.  There is associated alterations signal articular cartilage weightbearing surface of the acetabular roof. ... There is also slight effusion along the trochanteric bursa. ... On the right ... No significant trochanteric bursal effusion."  (So, the degeneration is worse in the left than the right, and there is evidence of bursitis on the left but not on the right.) 
That same MRI reports, "Hamstring tendonosis at the tuberosity insertion right and left.  No significant attenuation."
The conclusions of that MRI report are: "1. Effusion of the left hip more so than the right. ... The changes at the degeneration are fairly symmetrical to the contralateral side.  2.  Minimal bursal effusion. 3.  Tendonosis hamstring insertion."
In June 2010, a steroid injection in my left hip joint gave me 12 weeks of heaven. I was able to walk like a normal person for the first time in many years.
In August 2010, a steroid injection in my right hip joint only gave me eight weeks of relief (but by then, my left hip was too painful for me to truly enjoy the lack of pain in my right hip).
In October 2010, another X-ray of my pelvis and hips reports, "There is mild sclerotic change and irregularity of the acetabular margins of both hips, suggestive of mild degenerative change."
As of this date, I am not using any drug for added pain relief.  I have become so used to the ever-present throb that I barely notice it now -- until I make a move that causes a tearing pain through my groin.
I go to physiotherapy every Tuesday, and as long as I don't overdo my physical activity, I can hold the benefit of the treatment for about 48 hours.
I have massage therapy every Thursday.  While previously I had been using massage therapy on a bi-weekly basis, it is only since last October that I have been going every week.  It took until January of this year for me to reap the benefits of those weekly sessions.  I now recognize the need for me to continue using massage as one of my pain management tools. The massage benefit holds for about 48 hours too, but again, I can't overdo my physical activity if I want to truly enjoy those benefits.
Since I need to "hold the benefit of treatment," I cannot plan social engagements on the days following those therapy sessions.  That shortens our social week considerably.
Taken all together, my inability to sleep through the night would appear to be my "priority" complaint since it is the lack of restful sleep that is impacting so seriously on my emotional well-being.
And that inability to sleep through the night would appear to be the result of pain in my hips (and legs).
The pain in my hips would appear to be the result of osteoarthritis.
But, osteoarthritis of what?
The hip joint itself, where there is "mild" degeneration?
Or L4-L5-S1 and facet joints, where there is also "mild" degeneration but which would also cause referred hip and leg pain?
Or is the pain in my hips that is so badly disturbing my sleep a result of bursitis?
Or is it just another manifestation of fibromyalgia?
I'm thinking that only the surgeon can render his opinion now, and I will have to rely on that.  I will take this summary to him and let him wade through my history.  If he recommends surgery, so be it.

Thursday, February 10, 2011

Second guessing

Is it second guessing, or is it sober second thought?
My head has been reeling for the past couple of days with "should I?" or "shouldn't I?" thoughts.
The nurse practitioner at the Assessment Clinic sent me home on Monday with a booklet to read and a DVD to watch to help me make my decision.
So I asked her right out, "But if I understand you correctly, your recommendation is that I have both hips replaced?"
"Well," she replied, "you've tried everything else that I could recommend.  You're already going to physiotherapy; you're using acupuncture and massage therapy; you're using a cane and walking poles; you have a stair lift in your home; you've tried drugs and can't use them for various reasons.  There's really no other option left.  And you can't really tell me which hip is worse so not only am I referring you for surgery, I'm not indicating that one hip should be done before the other, that will be your choice."
I have since read the book and watched the DVD.
And I have again reviewed my x-rays (you had to know I burned a copy for myself!).
Clearly, there is a patch of bone-on-bone on each hip joint.
And clearly I meet all the criteria discussed in the book and in the video as to how to know when to have surgery.
"Some doctors suggest that it's time to consider surgery if hip arthritis pain:
  • Keeps you awake at night.
  • Makes you give up normal activities that you enjoy doing or need to do.
  • Affects you emotionally and puts stress on your relationships."
I read that and I wonder, what took my doctor so long to refer me?
I mean really, I don't know how long ago it was that I complained to him about waking every two hours or so because I could not sleep on either side so he jokingly suggested that I'd have to learn to levitate.
And it was many years ago now that I sat in his office, in tears, telling him that I simply wanted to have a life again.  Was that too much to ask?
Now in his defence, he was basing his diagnosis (bursitis) on the many x-ray reports, and the two MRI reports that stated "mild degeneration," which on the surface would not suggest a reason for the degree of pain or the diminishing range of motion I was exhibiting.
Therein lies the problem.
A radiologist was reading the x-rays and MRIs, without knowledge of the history.  My doctor knew the history, without benefit of actually seeing the X-rays and/or MRIs.
Now the doctor on the video actually discusses the matter of some patients presenting with serious pain and diminished range of motion, with very little evidence being seen on x-ray; while other patients present with practically no pain and full range of motion, but significant evidence of degeneration is found on x-ray.
The diagnosis must be made based on the history and the impact the symptoms are having on the patient's life.
Everything is subjective and my x-rays don't look like anything "debilitating," so the radiologist reported what was seen.  My doctor acted accordingly.
Obviously, the action he took in December (referring me in spite of the x-ray report) is what should have been done six years ago.  Had the ball been started then, we could have avoided the past six years of misery because presumably, based on the three criteria mentioned above, my hips would have been replaced then.
  • My sleep has been seriously disturbed by this nemesis for well over six years now.
  • I have had to curtail many normal activities for almost ten years -- so many years that I don't know if I remember what is "normal" for me any more.
  • The emotional toll has been tremendous and I can never get those years back.
Having said that, there is no point lamenting what can't be changed.
We can only go forward and move on from here.
But it makes me very angry.
Because I have endured this pain, and the interruption to my life, needlessly.
All because the left hand doesn't talk to the right hand.
From this day forward, whenever I am sent for x-rays, I will be asking for a CD of the images.  They are, after all, mine.  And I will take that CD to my next doctor's visit and let him review the x-rays himself so that he gets the "whole picture," and not just a radiologist's impression of the situation.

Tuesday, February 8, 2011

Apparently, I have arthritis!

Yup!  Who woulda guessed it?
Been hobbling around for nigh on ten years now, and finally, I have a definitive diagnosis:  osteoarthritis of both hips.
Mind you, ten years ago it was only in one hip.
Only been in the second hip for about six years.
But it's that second hip that causes me serious grief.
Or, seriouser grief (I know, that's not even a word, but it conveys the message).
I had my appointment at the Total Joint Assessment Clinic yesterday morning.
Very interesting indeed.
After watching me walk, and taking my height and weight, the nurse practitioner sat with me and we talked for a while.  The usual questions, including on a scale of one to ten, when your pain is at its worst, where would you put it?
Without hesitation, I responded, "12."
OK then.  She got the message.
Then she did the physical assessment.  That's where she tries to measure my range of motion and she quickly found out that I had little.
The interesting part for me came when she looked at my X-rays and very nicely took the time to explain in detail what everything means.  She showed me precisely where my hip joints are "bone on bone" (the left joint also has a bone spur).  As she was pointing out the spots to me, I could clearly understand why certain movements cause such excruciating pain while others not so much.
I should be seeing the surgeon some time in April, and his surgery wait list is about four months.
That puts the first surgery at about August (happy birthday to me); the second could follow about four months later (Merry Christmas to me).  The decision as to which hip is done first is entirely mine.  (It will be the left -- no contest.)
Then I put the question to her about the possibility that increased activity (once the hips are replaced) would aggravate my bursitis, since that has seemed to be the pattern every time my physiotherapist adds activity to my regimen.  She suggested that I don't have bursitis, that what I've been told all these years is bursitis, is possibly just another pain point of fibromyalgia.
Get out of here!
If she's right, wouldn't that be a logical explanation for why the steroid injections never worked in my bursa?  Can't fix what ain't broke!
Wait 'til I present that one to my doctor!
Wait 'til I tell my physiotherapist that one.  I'll be seeing her later today and she will be most intrigued with my report.  But she will also be delighted to hear that we are finally making progress with these hips.
Who woulda guessed it?

Monday, February 7, 2011

Sometimes I feel like such a pariah ...

I've always tried to be a very considerate person.
I mean, I'm always mindful of the other person's feelings.
And I try not to hurt anyone.  At least, not intentionally.
But apparently, I must not be very successful at it.
Because it seems that my efforts go unappreciated by my family.
I don't mean my progeny or my husband -- they fully appreciate me.
I'm talking about the family to which I was born.  The one about which I can do nothing.
You've all heard the old adage:  "You can pick your friends, but you can't pick your family."
Well, I've done a bang up job of picking my friends.
And it's a good thing too.
Because when it comes to picking families, I really got the short end of the stick.
For all intents and purposes, my father abandoned me when I was twelve.  That's when I found out that it was more important to him that I present a physical image that would be acceptable to the outside world rather than  simply be me.  Much to his chagrin, the lesson he taught me was that I should always be true to myself, no matter what society might expect of me.
My siblings abandoned me, one by one, as I stood my ground against parents who failed to support my choices in life.
And my mother abandoned me when she effectively forced me to choose between her and my daughter.  Could there be any doubt who would win that battle?
I've struggled with this separation from my family on and off for many years, telling myself variously that it does or does not really matter ... much. That as long as I have the love of those who do matter, that's all that really does matter.
But truth be known, it hurts.
I've just found out that yet again one of my siblings has been to this area for the weekend and failed to contact me. I might have liked to join her for a meal, or perhaps a coffee. Had I known she was visiting.
Over the years, various members of my family have shared meals together but none has included me (with or without my husband).
We live only 45 minutes outside of Ottawa and might, if invited, join them.
But we've never even been given the right of refusal.
I don't even get a phone call to say, "Hi, how are you?"
Kind of makes you feel like a bit of a pariah ... sometimes.

Friday, February 4, 2011

Yes, I'm still here

It's been a terribly busy week.
Let's see now, I'll try to remember what's kept me from posting.
I have no idea, now -- this being Friday and all -- what used up that day.  But usually, my time is taken with household chores and computer tasks.
It seems that everything takes me so much longer now than it used to, and before I know it, my day is over.
Keep in mind that our days end in this household at 4:00pm when John and I stop "working" and spend time together (drinky-poo time) before our favourite political show comes on television.  And of course, once supper is behind us, my day is really over!
Tuesday is physio day so that means I had to make the round trip into the big city which always takes a toll on me, although the benefit of the treatment far outweighs that toll.
Just the fact that I have to shower and do my hair uses up a lot of my energy on the days that I have appointments but I usually manage to take care of a few things around here before I leave the house.
On this outing, I also had to stop at the hearing aid place to pick up John's repaired aid and leave his other to be repaired.
And, as usual, I had to stop for groceries on my way home.
Once I got home, it was very close to our "drinky-poo" time and before I knew it, my day was over.
Another free day at home.  Weather conditions actually gave us a snow day so we would have been home whether we had intended to be or not, as it turns out.
I spent the morning catching up on correspondence and doing the bookkeeping that hadn't been done for several days.
My afternoon was occupied with watching television.  That's what I tend to do when I'm up and down the stairs doing laundry.
But I felt guilty for doing "nothing" so I exercised.
Not vigourously, but I exercised.
Physiotherapist says I gotta do it.
So I did it.
And that night, I slept very poorly.
My hips were not very happy with me for having engaged in the extra physical activity that day (something I always do in the 24 hours following physio).
Massage day.
I was supposed to take my car to the garage for an oil change but I called and postponed because I woke up feeling oh so tired and I just couldn't face the half-hour drive there and back.
My hips had been giving me fits all night, not letting me get comfortable at all.
So I opted out of the oil change and decided to just go for my massage therapy.
But while having breakfast, I had a bit of an "aha" moment, as Oprah calls them.
I've begun to notice the pattern.
Following my Tuesday physio session, I always feel remarkably better and because I can, I do.
And I do too much.
I know I do, because it's been my curse since forever.
So by Wednesday evening, I've had the biscuit from being too physical, from having done too much.
Wednesday night is always my worst night in the week.
Then I go for my massage therapy, from which I am only now noticing the cumulative therapeutic benefit of the weekly sessions, and she fixes me up again.
When I return from massage, I never "do" anything.  That is absolutely, guaranteed veg time.  I need to secure the benefits of the session.
And I always sleep the best sleep ever on the night that I've had a massage.
Just as I did last night.
I went to bed at 10:00pm and I actually slept straight through 'til 5:00am.
That's seven hours folks.
I did it.
I slept seven consecutive hours, without even waking up to pee!
I think I'm going out to buy a lottery ticket!
Today, Friday
John and I both have to go for bloodwork so we're doing that this morning, after which we'll stop and have breakfast (John has had to fast since last evening; I at least have been able to have my morning coffee).
Then we'll come home and I will take another slow day to ensure that my body gets maximum benefit from yesterday's massage therapy.
Gosh, it would be nice to just be able to run around and do things every day like normal people do.  But I have to be so careful about my schedule.
For instance, we received an invitation to dinner for Sunday of this coming weekend.  I had to beg off because it would have meant a drive into the city on Sunday and we have to go into the city on Monday for my hip assessment, and then I have to go into the city on Tuesday for my physiotherapy (I also have a dental appointment that day).  I simply cannot do three consecutive days of trips into the city -- I would absolutely be inviting a major fibro flare-up which would surely bring on a mental melt-down.
Planning our social lives is becoming a very fine balancing act, but we're slowing getting the hang of it.
Hopefully, I'll soon come to mental terms with these fibro-imposed restrictions -- because I'm certainly not liking what it all means.