UPDATE: I've been living 2+ years now with my PRC and suffer from very little pain and almost only when I "overuse" my left hand. My right wrist has happily not yet progressed, so I'm just careful - and grateful!
press play & read4(double-click first track if necessary - the rest will play!)
Showing posts with label Kienbock's Disease. Show all posts
Showing posts with label Kienbock's Disease. Show all posts
Thursday, January 6, 2011
Thursday, December 23, 2010
In the End: This Much is True (for me)
Some people have referred to my KD story as a journey. I suppose it was. And is. It is one journey woven through our daily travels and travails. My KD is running alongside all the other challenges and joys of life and in doing so, has imparted wee nuggets of knowledge. I consider them gifts and, although some of these may be specific to my experience, I feel there is a general thread of truth and common experience worthy of sharing. This is what is true for me when it comes to:
Kienbock's Disease It sucks. It sucks the joy from your life. It is a progressive and potentially debilitating disease. It's the end of the world and it's not the end of the world. It is not as rare as it appears and yet rare enough to make finding treatment tricky. No one, not even surgeons, knows why we get KD for sure. No one, not even surgeons, knows with certainty how KD will progress in each patient. No one, not even surgeons, knows with certainty what the best treatment is for each patient. No one, not even surgeons or KD sufferers, knows with certainty when and what surgery will be the most successful or if another surgery will be required down the line. It is these uncertainties coupled with the loss of the use of one's hand(s) that create fear and anxiety in KD sufferers.
KD is not a vascular disorder. Three months of acupuncture and four months of casting did not and will not trigger the blood supply to the lunate. In the months I believed a cure for KD was simply a case of restoring blood flow to the lunate, I wasted precious energy and time on the wrong solutions. The only way to restore blood flow to the lunate is surgically, through a revascularization procedure. In my amateur opinion, if casting *cures* your KD, you did not have KD.
Canada's Medical System There exist many myths about Canadian health care and Canada's Medical Services Plan, mostly perpetuated by Michael Moore and my grandmother. Oh, and Kiefer Sutherland. Don't get me wrong, Tommy Douglas was a great man with astounding vision, but no system is perfect, and ours certainly has its flaws. It is incredible that ANYONE, rich or poor has access to medical treatment for every category of illness, disease, or injury. No one in Canada will or can go bankrupt due to the need for medical care. Paying for the prescription drugs one might need is another story, of course.
Medical care in Canada is not free. Yes, those living desperately at or below the poverty line do not pay for medical services, but that line is pathetically low. Middle- and high-income families or individuals pay around $1500 a year. Our personal tax contributions to the system amount to much more, though don't ask me how much (that's what Google is for).
But Canada is a vast country with a relatively small population, a large number of which resides in rural communities. The number of medical care facilities and practitioners is not infinite. Making do is the motto of the northern community, the non-urban hub.
In our courts of justice, it stands that if one is not granted timely access to trial, then justice is not being served. Many of us seeking medical care in Canada are receiving too little, too late, sometimes with tragic consequences.
The small matter of life or death aside, I fail to understand the economics of a young workforce crippled by a lack of medical treatment. The cost of sick days and disability and unemployment payments alone must be staggering. What is the social and economic cost of a young man or woman waiting a year for a surgery that will allow him or her to return to work within weeks?
Surgeons Chances are, if and when you need a surgeon, he will most likely be male, aged 35 -60. As I've written before, he will be a type-A personality with a very black-and-white approach to your surgical needs. He will be confident and, in most cases, absolute. He will not be impressed by your Google-degree in medicine.
It is important that you like and trust your surgeon. He does not care if he likes or trusts you. If you do indeed feel comfortable with your surgeon, you must accept that the surgical procedure he performs on you will only be one he is both willing and able to do, regardless if there is a multitude of theoretical surgical possibilities, as in the case of KD. Despite the unprofessional and, in my view, unethical behaviour of my Dr. D, I now realize that he had only the capacity for those two things. Being willing. And being able.
If you don't like nor trust your surgeon and have the option of a second or third opinion, seek one without delay. If your surgery is inevitable, commit to it as soon as possible and get on with healing and life.
Most surgeons see their jobs as starting and finishing in the OR. Your outcomes are moderately important to them and best read about in a journal of medicine. A good surgeon is a surgeon who is good at performing surgery. A rare surgeon is one who is a good surgeon, a problem-solver, and a compassionate human being. I wish everyone a rare surgeon.
This much is True:
Kienbock's Disease It sucks. It sucks the joy from your life. It is a progressive and potentially debilitating disease. It's the end of the world and it's not the end of the world. It is not as rare as it appears and yet rare enough to make finding treatment tricky. No one, not even surgeons, knows why we get KD for sure. No one, not even surgeons, knows with certainty how KD will progress in each patient. No one, not even surgeons, knows with certainty what the best treatment is for each patient. No one, not even surgeons or KD sufferers, knows with certainty when and what surgery will be the most successful or if another surgery will be required down the line. It is these uncertainties coupled with the loss of the use of one's hand(s) that create fear and anxiety in KD sufferers.
KD is not a vascular disorder. Three months of acupuncture and four months of casting did not and will not trigger the blood supply to the lunate. In the months I believed a cure for KD was simply a case of restoring blood flow to the lunate, I wasted precious energy and time on the wrong solutions. The only way to restore blood flow to the lunate is surgically, through a revascularization procedure. In my amateur opinion, if casting *cures* your KD, you did not have KD.
Canada's Medical System There exist many myths about Canadian health care and Canada's Medical Services Plan, mostly perpetuated by Michael Moore and my grandmother. Oh, and Kiefer Sutherland. Don't get me wrong, Tommy Douglas was a great man with astounding vision, but no system is perfect, and ours certainly has its flaws. It is incredible that ANYONE, rich or poor has access to medical treatment for every category of illness, disease, or injury. No one in Canada will or can go bankrupt due to the need for medical care. Paying for the prescription drugs one might need is another story, of course.
Medical care in Canada is not free. Yes, those living desperately at or below the poverty line do not pay for medical services, but that line is pathetically low. Middle- and high-income families or individuals pay around $1500 a year. Our personal tax contributions to the system amount to much more, though don't ask me how much (that's what Google is for).
But Canada is a vast country with a relatively small population, a large number of which resides in rural communities. The number of medical care facilities and practitioners is not infinite. Making do is the motto of the northern community, the non-urban hub.
In our courts of justice, it stands that if one is not granted timely access to trial, then justice is not being served. Many of us seeking medical care in Canada are receiving too little, too late, sometimes with tragic consequences.
The small matter of life or death aside, I fail to understand the economics of a young workforce crippled by a lack of medical treatment. The cost of sick days and disability and unemployment payments alone must be staggering. What is the social and economic cost of a young man or woman waiting a year for a surgery that will allow him or her to return to work within weeks?
Surgeons Chances are, if and when you need a surgeon, he will most likely be male, aged 35 -60. As I've written before, he will be a type-A personality with a very black-and-white approach to your surgical needs. He will be confident and, in most cases, absolute. He will not be impressed by your Google-degree in medicine.
It is important that you like and trust your surgeon. He does not care if he likes or trusts you. If you do indeed feel comfortable with your surgeon, you must accept that the surgical procedure he performs on you will only be one he is both willing and able to do, regardless if there is a multitude of theoretical surgical possibilities, as in the case of KD. Despite the unprofessional and, in my view, unethical behaviour of my Dr. D, I now realize that he had only the capacity for those two things. Being willing. And being able.
If you don't like nor trust your surgeon and have the option of a second or third opinion, seek one without delay. If your surgery is inevitable, commit to it as soon as possible and get on with healing and life.
Most surgeons see their jobs as starting and finishing in the OR. Your outcomes are moderately important to them and best read about in a journal of medicine. A good surgeon is a surgeon who is good at performing surgery. A rare surgeon is one who is a good surgeon, a problem-solver, and a compassionate human being. I wish everyone a rare surgeon.
This much is True:
| Spandau Ballet - True .mp3 | ||
 | ||
 | Found at bee mp3 search engine |  |
Sunday, December 19, 2010
In Emergency - Part 2
I've already forgotten the name of my angel. Of all the things I can recall of these days, her name eludes me. Her essence does not. She swept aside my torturers with a quick word and a firm hand - her needle at the ready. She is gently brushing the hair from my forehead as the morphine seeps into my bloodstream. She calls me dear. And sweetie.
I do not know how I arrived here in the hallway, on the gurney. My angel is telling me they are trying to find a doctor for me. It's just crazy here tonight. Tonight. Where did day go, I wonder. I am able to wonder. The morphine has both anchored me and allowed me to be free again. I am also aware. My gurney is opposite the doorway of a room. I can hear and see the elderly wife of an elderly man berate him. She hits him with something. Her purse I think. The morphine does not let me feel shock but I feel Eric behind me shift uncomfortably. Security is called and the wife screams obscenities as she is pulled from the room. This is more than I can fathom at this moment.
My angel is telling me that the orthopaedic surgeon on duty is in the clinic. My gurney starts moving in that direction. I know this hallway well - the "clinic" is where I have had my arm casted no less than 5 times in the last 12 months. The clinic is almost like a second home. And who should be there but John, my left- and right-hand man.
Beside John is Michael. I think. I'm pretty sure it's Michael. I'm certain he is an orthopaedic surgeon. I'm doubly certain he has just returned from Afghanistan. The pieces of his life trickle through the morphine. But who is reporting them? And why?
Michael looks so tired, already. He is reading my file. John is filling in the bits he knows. Michael leans close to me and asks me: what happened? I talk about the coming of the pain. I talk about the onslaught of the pain. He asks me what I feel now. I say numbness. He looks confused. But you can feel this, right? Yes, but it is numb. He stares at me. If it's numb then you can't feel it. I feel anger build in me. How can this be happening? It is like I am arguing with my 4-year old instead of talking to a doctor. The veil of morphine is lifting. Numb does not mean without feeling, I want to shout. Anyway, I feel fine now. I refuse to look at him.
Michael shifts some paperwork, talks into his computer mike, and instructs John to cast me again. The danger has passed. I seem ok.
John is so gentle with the gauze - my eyes thank him. Michael is talking to Eric as John lays the first strip of hot plaster on my arm. My angel has left me. There is only ice-blue and blood-red and black. The whimper comes before the scream. The scream comes from someone outside my body - I am suspended - begging Eric to help me, to make it stop. I am begging and screaming at John, at Michael, at Eric. I lose feeling in my left arm. Then my right arm, then my right leg. I can't feel either of my feet. I am going into shock. I don't comprehend this logical chain of events. I am beyond logic.
Michael calls emerg across the hall - but we discharged her from emerg to orthopaedics. Shit, I hear him say. I can't have morphine unless I've been admitted or am in Emergency. John is pushing my gurney to emerg, fast. Michael is dialing St. Paul's hospital as we cross the hallway. Incredibly, I hear him laughing. He and Dr. G are sharing some joke. Michael has just come back from Afghanistan - my little drama must pale in significance.
I catch sight of Eric's face - there is a surprising degree of control there. I am another plane now, moaning low and deeply. When my angel reappears and rushes me back into emerg, I know relief is close. I just need to be inside the emerg doors and she can give me morphine. She stops in the nearest hallway and injects me quickly. It takes no more than 30 seconds to
flood my body. I breathe.
Michael is suddenly back and, beside him, Dr. D. Dr. D speaks in the softest of voices, Hi, Fiona. how are you feeling now? My tongue is thick and slow. Tired, I reply. Dr. D is holding my arm and chatting with Eric as he gently wraps it in gauze and padding and a soft sling. This can happen sometimes, Dr. D is telling Eric. There is some talk of opening my hand up for what sounds like bloodletting, to relieve the pressure. She doesn't need a plaster cast - we'll leave it like this. Dr. D has been summoned from dinner. He is not on call.
Something is happening in this moment between me and Dr. D and Eric. It has been almost exactly a year since he refused to treat me. There is a strange reparation taking place. There is more than morphine spreading peace and light through me. Perhaps.
We arrive home some time after dinner. The house is dark. An entire day has passed. Only a single day has passed. Eric walks me to bed and the boys quietly watch me ascend the stairs. I am fine, completely and totally fine, and will only continue to get better. My pain is manageable and within a day or two requires no management at all. My cast had simply been too tight. My skin and flesh squeezed to bursting - my nerve endings raw from surgery and my pain receptors on super-charge. Small things.
I do not know how I arrived here in the hallway, on the gurney. My angel is telling me they are trying to find a doctor for me. It's just crazy here tonight. Tonight. Where did day go, I wonder. I am able to wonder. The morphine has both anchored me and allowed me to be free again. I am also aware. My gurney is opposite the doorway of a room. I can hear and see the elderly wife of an elderly man berate him. She hits him with something. Her purse I think. The morphine does not let me feel shock but I feel Eric behind me shift uncomfortably. Security is called and the wife screams obscenities as she is pulled from the room. This is more than I can fathom at this moment.
My angel is telling me that the orthopaedic surgeon on duty is in the clinic. My gurney starts moving in that direction. I know this hallway well - the "clinic" is where I have had my arm casted no less than 5 times in the last 12 months. The clinic is almost like a second home. And who should be there but John, my left- and right-hand man.
Beside John is Michael. I think. I'm pretty sure it's Michael. I'm certain he is an orthopaedic surgeon. I'm doubly certain he has just returned from Afghanistan. The pieces of his life trickle through the morphine. But who is reporting them? And why?
Michael looks so tired, already. He is reading my file. John is filling in the bits he knows. Michael leans close to me and asks me: what happened? I talk about the coming of the pain. I talk about the onslaught of the pain. He asks me what I feel now. I say numbness. He looks confused. But you can feel this, right? Yes, but it is numb. He stares at me. If it's numb then you can't feel it. I feel anger build in me. How can this be happening? It is like I am arguing with my 4-year old instead of talking to a doctor. The veil of morphine is lifting. Numb does not mean without feeling, I want to shout. Anyway, I feel fine now. I refuse to look at him.
Michael shifts some paperwork, talks into his computer mike, and instructs John to cast me again. The danger has passed. I seem ok.
John is so gentle with the gauze - my eyes thank him. Michael is talking to Eric as John lays the first strip of hot plaster on my arm. My angel has left me. There is only ice-blue and blood-red and black. The whimper comes before the scream. The scream comes from someone outside my body - I am suspended - begging Eric to help me, to make it stop. I am begging and screaming at John, at Michael, at Eric. I lose feeling in my left arm. Then my right arm, then my right leg. I can't feel either of my feet. I am going into shock. I don't comprehend this logical chain of events. I am beyond logic.
Michael calls emerg across the hall - but we discharged her from emerg to orthopaedics. Shit, I hear him say. I can't have morphine unless I've been admitted or am in Emergency. John is pushing my gurney to emerg, fast. Michael is dialing St. Paul's hospital as we cross the hallway. Incredibly, I hear him laughing. He and Dr. G are sharing some joke. Michael has just come back from Afghanistan - my little drama must pale in significance.
I catch sight of Eric's face - there is a surprising degree of control there. I am another plane now, moaning low and deeply. When my angel reappears and rushes me back into emerg, I know relief is close. I just need to be inside the emerg doors and she can give me morphine. She stops in the nearest hallway and injects me quickly. It takes no more than 30 seconds to
flood my body. I breathe.
Michael is suddenly back and, beside him, Dr. D. Dr. D speaks in the softest of voices, Hi, Fiona. how are you feeling now? My tongue is thick and slow. Tired, I reply. Dr. D is holding my arm and chatting with Eric as he gently wraps it in gauze and padding and a soft sling. This can happen sometimes, Dr. D is telling Eric. There is some talk of opening my hand up for what sounds like bloodletting, to relieve the pressure. She doesn't need a plaster cast - we'll leave it like this. Dr. D has been summoned from dinner. He is not on call.
Something is happening in this moment between me and Dr. D and Eric. It has been almost exactly a year since he refused to treat me. There is a strange reparation taking place. There is more than morphine spreading peace and light through me. Perhaps.
We arrive home some time after dinner. The house is dark. An entire day has passed. Only a single day has passed. Eric walks me to bed and the boys quietly watch me ascend the stairs. I am fine, completely and totally fine, and will only continue to get better. My pain is manageable and within a day or two requires no management at all. My cast had simply been too tight. My skin and flesh squeezed to bursting - my nerve endings raw from surgery and my pain receptors on super-charge. Small things.
| Rare Earth - I just want to Celebrate .mp3 | ||
| | ||
| Found at bee mp3 search engine | |
In Surgery - Part 2: What a Wonderful World
It's been 3 months since my arthroscopy. I can't get my surgeon's MOA on the phone. She doesn't reply to my emails. I have realized that a surgeon is only as good as his hands and only as available as his MOA. I've now passed the one year anniversary of my diagnosis and my every waking thought is about having my surgery and getting on with my life. This holding pattern is purgatory.
I have learned this past year that protocol is a bit of a sham. I have no intention of waiting in some imaginary queue. When I do get Ms. P on the phone, I lie: Dr. G was clear that I was to have my surgery 1 month after my arthroscopy. Ms. P taps on her keyboard and replies that she doesn't see any notes to that effect but if he told you that, then...oh, I have an opening for February 17th. It is that easy. After all the fighting and waiting and suffering, it comes down to a single, well-timed phone call. The lie was more of a partial truth anyway. What Dr. G actually said was that I needed to wait at least a month before my next surgery. I feel like I have reached the summit of a mountain. February 17th is 3 weeks away. I am almost giddy.
Dr. G meets me in the nurse's office, where she and I are completing my pre-op paperwork. He smiles and says: so you're ready to do this, are you? It's as if he doesn't know I have late-stage KD. It's as if he's forgotten that we last talked about this surgery 8 months ago. I am struck again by the irony of a surgeon not comprehending the loss of the use of one's hands. I just smile.
Dr. G brandishes a menacing-looking red marker and starts mapping my arm. Some circles here, a line or two there, a definitive "L" on the back of my hand. God forbid they get the wrong arm. I am not comforted by this extra security measure. See you in there, he says over his shoulder as he goes to prep.
I am a little disappointed that Brian is not my anaesthetist. We had talked about round 2 back in October and he'd said he'd be around. I actually don't have just one anaesthetist, I have a team - a team-in-training, it turns out. I tell them about my last nerve block wearing off after 3 hours. They exchange glances with each other and say they'll top it up.
I am decidedly wasted when they wheel my bed into the OR. This will be a longer surgery than before. And noisier. Electric saws, pliers, and chisels. Ok, the chisel could be my imagination - but I'll never forget the crunching sound of the pliers or the whirr of the saw blade cutting through bone. Or the bits of bone and flesh that spit out of the wound. I don't get the tv screen for this one. I am grateful.
My surgery is called a PRC and involves the removal of the proximal row of three bones, one of which is the lunate - the source of all my trouble. The surgery allows for the distal row to slide down into the vacated space, in turn helping convert the existing joint to something more akin to a hinge. Like a door.
There is a point where I can feel incredible pressure and my OR anaesthetist slides a syringe into my IV. The pressure fades away.
In recovery, I am quite helpless. I think my gown is twisted. One of my breasts is hanging out. I don't really notice or care. A nurse discreetly shifts and tucks my gown until I am covered. In an hour or so, this same nurse will try to help me put on my underwear and bra. I am too stoned to stand and my right arm is like jelly. She has to remind me to hold it up because otherwise I don't remember it is there and it thuds to the side of the bed. Getting dressed seems to take forever and makes me giggle like a little girl. God bless nurses.
Incredibly, I've been discharged. This time, I have the pain killer prescription filled. This time, when we get to the already-full ferry, my husband declares us a medical emergency and a vacant spot magically appears. We learn that this spot is always left free for any emergency. I store that little nugget away in my cloudy mind.
I am three bones lighter, high as a kite, and on my way home to rest and recovery. Hallelujah.
What a Wonderful World:
I have learned this past year that protocol is a bit of a sham. I have no intention of waiting in some imaginary queue. When I do get Ms. P on the phone, I lie: Dr. G was clear that I was to have my surgery 1 month after my arthroscopy. Ms. P taps on her keyboard and replies that she doesn't see any notes to that effect but if he told you that, then...oh, I have an opening for February 17th. It is that easy. After all the fighting and waiting and suffering, it comes down to a single, well-timed phone call. The lie was more of a partial truth anyway. What Dr. G actually said was that I needed to wait at least a month before my next surgery. I feel like I have reached the summit of a mountain. February 17th is 3 weeks away. I am almost giddy.
Dr. G meets me in the nurse's office, where she and I are completing my pre-op paperwork. He smiles and says: so you're ready to do this, are you? It's as if he doesn't know I have late-stage KD. It's as if he's forgotten that we last talked about this surgery 8 months ago. I am struck again by the irony of a surgeon not comprehending the loss of the use of one's hands. I just smile.
Dr. G brandishes a menacing-looking red marker and starts mapping my arm. Some circles here, a line or two there, a definitive "L" on the back of my hand. God forbid they get the wrong arm. I am not comforted by this extra security measure. See you in there, he says over his shoulder as he goes to prep.
I am a little disappointed that Brian is not my anaesthetist. We had talked about round 2 back in October and he'd said he'd be around. I actually don't have just one anaesthetist, I have a team - a team-in-training, it turns out. I tell them about my last nerve block wearing off after 3 hours. They exchange glances with each other and say they'll top it up.
I am decidedly wasted when they wheel my bed into the OR. This will be a longer surgery than before. And noisier. Electric saws, pliers, and chisels. Ok, the chisel could be my imagination - but I'll never forget the crunching sound of the pliers or the whirr of the saw blade cutting through bone. Or the bits of bone and flesh that spit out of the wound. I don't get the tv screen for this one. I am grateful.
My surgery is called a PRC and involves the removal of the proximal row of three bones, one of which is the lunate - the source of all my trouble. The surgery allows for the distal row to slide down into the vacated space, in turn helping convert the existing joint to something more akin to a hinge. Like a door.
There is a point where I can feel incredible pressure and my OR anaesthetist slides a syringe into my IV. The pressure fades away.
In recovery, I am quite helpless. I think my gown is twisted. One of my breasts is hanging out. I don't really notice or care. A nurse discreetly shifts and tucks my gown until I am covered. In an hour or so, this same nurse will try to help me put on my underwear and bra. I am too stoned to stand and my right arm is like jelly. She has to remind me to hold it up because otherwise I don't remember it is there and it thuds to the side of the bed. Getting dressed seems to take forever and makes me giggle like a little girl. God bless nurses.
Incredibly, I've been discharged. This time, I have the pain killer prescription filled. This time, when we get to the already-full ferry, my husband declares us a medical emergency and a vacant spot magically appears. We learn that this spot is always left free for any emergency. I store that little nugget away in my cloudy mind.
I am three bones lighter, high as a kite, and on my way home to rest and recovery. Hallelujah.
What a Wonderful World:
| Louis Armstrong - What A Wonderful World .mp3 | ||
| | ||
| Found at bee mp3 search engine | |
Saturday, December 18, 2010
In Progress - Part 5: Beast of Burden
However much I hate being in cast, being without one is sometimes terrifying. KD sufferers know the brutalizing pain of an accidental bump or twist of the wrist as well as the constant, grinding agony of the wrist simply at rest.
For KD sufferers in the late stages, there is no respite at rest or in action. A cast can at least eliminate the fear of further injury, prevent one from over-using, and provide a convenient cradle in which to nestle the lame appendage.
Similar to this love-hate affair with one's cast is the compromise one accepts with public reaction. There is relief in the fact that people are more careful around you, more solicitous, sometimes more helpful. There is frustration in the reality of constant questions, annoying quips (middle-aged men with floating duck rings), and the worst, medical opinion. Most people believe you have a broken arm. Others might inquire and with the brief details you provide them conclude you have something akin to carpal tunnel syndrome. Not that there is anything wrong with that.
It is so childish, so small-minded, but every so often I am enraged by this and want this well-meaning stranger to feel very bad about my condition. I want to establish my case in the hierarchy of illness. I will solemnly reveal all the sad details of my disease and its worst case scenarios. I will watch as the stranger's face drops a little. It's mean. I can't resist it.
With one arm casted and the other virtually useless I have given up the pretence of being capable. My reluctance to ask for help has all but slipped away. I can't cook, drive, or write any longer. I now have a housekeeper. I order my groceries online and they are delivered promptly. I am working out a system that will let me live my life and fulfill my responsibilities. I miss small things though. I miss reading to my youngest at bedtime, snuggled beside him on the pillow. My hands can only bear the weight of the lightest of books. So we sit up and lay the book out on the duvet, my 3-year old turning the pages. It's not so bad.
Dr.G has booked a surgery for my right wrist for late October. He is keen to not let the KD progress as it has in my left. While I am willing to do almost anything to be rid of the pain in my right, I understand his logic. In the meantime, I can only be.
To Eric, my tireless
Beast of Burden:
For KD sufferers in the late stages, there is no respite at rest or in action. A cast can at least eliminate the fear of further injury, prevent one from over-using, and provide a convenient cradle in which to nestle the lame appendage.
Similar to this love-hate affair with one's cast is the compromise one accepts with public reaction. There is relief in the fact that people are more careful around you, more solicitous, sometimes more helpful. There is frustration in the reality of constant questions, annoying quips (middle-aged men with floating duck rings), and the worst, medical opinion. Most people believe you have a broken arm. Others might inquire and with the brief details you provide them conclude you have something akin to carpal tunnel syndrome. Not that there is anything wrong with that.
It is so childish, so small-minded, but every so often I am enraged by this and want this well-meaning stranger to feel very bad about my condition. I want to establish my case in the hierarchy of illness. I will solemnly reveal all the sad details of my disease and its worst case scenarios. I will watch as the stranger's face drops a little. It's mean. I can't resist it.
With one arm casted and the other virtually useless I have given up the pretence of being capable. My reluctance to ask for help has all but slipped away. I can't cook, drive, or write any longer. I now have a housekeeper. I order my groceries online and they are delivered promptly. I am working out a system that will let me live my life and fulfill my responsibilities. I miss small things though. I miss reading to my youngest at bedtime, snuggled beside him on the pillow. My hands can only bear the weight of the lightest of books. So we sit up and lay the book out on the duvet, my 3-year old turning the pages. It's not so bad.
Dr.G has booked a surgery for my right wrist for late October. He is keen to not let the KD progress as it has in my left. While I am willing to do almost anything to be rid of the pain in my right, I understand his logic. In the meantime, I can only be.
To Eric, my tireless
Beast of Burden:
| The Rolling Stones - Beast Of Burden .mp3 | ||
| | ||
| Found at bee mp3 search engine | |
Monday, December 13, 2010
In Progress - Part 4: Cruel Summer
I'm watching Eric unload the car, humping tents and poles and coolers stuffed with food. Kieran is helping in that non-committal way teenagers do - a pillow here, a pop bottle there, dragging his body from the car to the picnic table.
It's our annual, end-of-school-hop-on-the-ferry-drive-to-the-interior camping trip and we've just arrived at Paul Lake Provincial Park. The campground is full - it is Canada Day after all - and we are perched at the end of what is essentially a parking lot. A parking lot with spectacular views of the lake and a cool shower close by. It is hot and dusty and my teenager is moaning. I want to jump in the lake so desperately.
But there are chores to do - setting up camp and all that implies: assembling tent poles, inflating mattresses, organizing food and drink and camp chairs and camp stoves. I am not doing a damn thing. I am standing, sitting, pacing. I am about as useful as a turnip.
The day before we left the island, I saw John, my cast man at the orthopaedic clinic. He was casting me for the third time in 6 months, but this time it was my right arm.
A month previous, in my desperate search for a surgeon, I had paid $500 for a surgical consultation at a private clinic in Vancouver. This new surgeon examined me and proposed the exact procedure I didn't need at a cost of about $8000. He did, however, cut off the 4 1/2-month-old cast that encased my left arm. I had been anxious to have it removed, something no one would do without a surgeon's requisition. I didn't have a surgeon, yadda yadda...there is a hole in the bucket dear Liza, dear Liza...so I guess that was worth the $500.
Anyway, John was acting on orders from Dr.G. and was prepping his materials when I asked for a light summer colour in fibreglass. Sorry, but we're all out of gortex right now, I can only do a plaster cast, John shouts from the computer. Turns out, there is no gortex in any of the hospitals on the southern part of the island. Will take about 2 weeks, John tells me. When did I start living on Gilligan's Island? It's the beginning of summer and I'm about to leave for the lake for a week. Me and my old-school plaster cast. I can't quite believe it.
So here I am, Mrs. Turnip, with a left arm so weak I can't trust it with a cup of coffee and a right arm weighted down in layers of plaster, dreaming about swimming in the lake and helplessly watching my husband do virtually everything.
As the week passes, we settle into a routine of early morning walks, midday swimming, and afternoon excursions. The same families seem to gather at the lake shore by mid-morning and there is an easy rapport amongst us all. I've wrapped my plaster in a plastic grocery bag, securing it with elastic bands. I splash a little at the water's edge when the heat becomes unbearable.
One of the dads around that week, middle-aged with a bit of paunch and goofy look, makes a new wisecrack about my cast every morning. What does the other guy look like? Time to stop skateboarding, hey! It makes me crazy. I see him lumbering towards me with a floating duck ring under his arm. He's smiling and about to greet me with something spectacularly unfunny about my cast. I sigh.
It's going to be a long,
Cruel Summer:
It's our annual, end-of-school-hop-on-the-ferry-drive-to-the-interior camping trip and we've just arrived at Paul Lake Provincial Park. The campground is full - it is Canada Day after all - and we are perched at the end of what is essentially a parking lot. A parking lot with spectacular views of the lake and a cool shower close by. It is hot and dusty and my teenager is moaning. I want to jump in the lake so desperately.
But there are chores to do - setting up camp and all that implies: assembling tent poles, inflating mattresses, organizing food and drink and camp chairs and camp stoves. I am not doing a damn thing. I am standing, sitting, pacing. I am about as useful as a turnip.
The day before we left the island, I saw John, my cast man at the orthopaedic clinic. He was casting me for the third time in 6 months, but this time it was my right arm.
A month previous, in my desperate search for a surgeon, I had paid $500 for a surgical consultation at a private clinic in Vancouver. This new surgeon examined me and proposed the exact procedure I didn't need at a cost of about $8000. He did, however, cut off the 4 1/2-month-old cast that encased my left arm. I had been anxious to have it removed, something no one would do without a surgeon's requisition. I didn't have a surgeon, yadda yadda...there is a hole in the bucket dear Liza, dear Liza...so I guess that was worth the $500.
Anyway, John was acting on orders from Dr.G. and was prepping his materials when I asked for a light summer colour in fibreglass. Sorry, but we're all out of gortex right now, I can only do a plaster cast, John shouts from the computer. Turns out, there is no gortex in any of the hospitals on the southern part of the island. Will take about 2 weeks, John tells me. When did I start living on Gilligan's Island? It's the beginning of summer and I'm about to leave for the lake for a week. Me and my old-school plaster cast. I can't quite believe it.
So here I am, Mrs. Turnip, with a left arm so weak I can't trust it with a cup of coffee and a right arm weighted down in layers of plaster, dreaming about swimming in the lake and helplessly watching my husband do virtually everything.
As the week passes, we settle into a routine of early morning walks, midday swimming, and afternoon excursions. The same families seem to gather at the lake shore by mid-morning and there is an easy rapport amongst us all. I've wrapped my plaster in a plastic grocery bag, securing it with elastic bands. I splash a little at the water's edge when the heat becomes unbearable.
One of the dads around that week, middle-aged with a bit of paunch and goofy look, makes a new wisecrack about my cast every morning. What does the other guy look like? Time to stop skateboarding, hey! It makes me crazy. I see him lumbering towards me with a floating duck ring under his arm. He's smiling and about to greet me with something spectacularly unfunny about my cast. I sigh.
It's going to be a long,
Cruel Summer:
| Bananarama - Cruel Summer .mp3 | ||
| | ||
| Found at bee mp3 search engine | |
Tuesday, December 7, 2010
In Progress - Part 3: (Don't) Lean On Me
Pain is a personal thing. Explaining your own physical pain is challenging, it is almost pointless. And dull. Not that that stops any of us. My head is killing me. My arms are going to fall off. I can't move my back. It's sore. It's swollen. It's tender. It throbs. It stings.
It burns. Burning. A burning pain. This is the only word I can find that fits me - the only description I can muster that matches the sensation in my wrist.
In describing my pain this way, I feel that I'm disrespecting true burn victims. Victims. Not mere sufferers or simply patients. The extraordinary pain of a burn makes one a victim, as if you were shot in your own bed by a crazed stranger. Something horrible has been done unto you. Something unexpected. Incomprehensible. Irrevocable. I am dishonouring many I know: acquaintances, a dear friend - men and women who daily tolerate extraordinary, unrelenting pain. I think of Natalie and I am ashamed.
However much I know I am not on fire or even smoldering, I can only say and feel that it burns. In my imagination, a slow burn, like a subterranean Saskatchewan coal seam, is methodically laying waste to the core of my hands - until it is spent.
"Some smolder deep within abandoned mines; others blaze forth in exposed seams of coal. Like forest fires, coal fires can be sparked either by natural phenomena such as lightning or by people's carelessness. Beyond their potentially devastating effects on mining communities, coal fires change the landscape and damage the environment. "
But what I think I know about pain at this moment, even after surgeries and disease and childbirth, will be shattered, blasted apart in a few months time. Burning has its own vocabulary. Burn. Singe. Sear. For now, I have my slow burn.
Doctors have a system for helping patients articulate their pain. The 1-10 scale. You know it: So where does it hurt? Here? How does it feel now? When I do this. On a scale of 1-10? 1 being little pain.
Of course, the relativity of pain renders this assessment tool almost useless. One man's 10 is another man's 5. The man that has broken his back understands 10 just a little differently from the man who has suffered a bout of indigestion. Nevertheless, somehow, both you and your doctor learn something about you.
And then there is the hierarchy of suffering. Me and my Natalie. Many, if not all of us, in our quest for validation and treatment, seek to paradoxically *score* higher on and refute the hierarchy. But the hierarchy is meaningless. In the end, it is only you. You, and what you can bear.
I can almost bear the burn. There is no painkiller that can reach inside a dying bone and soothe it. No tonic or lotion. There are just forgetting drugs: wine, laughter, love, distraction. These I have in abundance, when I remember to take them. And accept them.
God bless my husband for easing my pain and my load - thank you, Eric, for showing and saying time and again:
Lean on Me:
It burns. Burning. A burning pain. This is the only word I can find that fits me - the only description I can muster that matches the sensation in my wrist.
In describing my pain this way, I feel that I'm disrespecting true burn victims. Victims. Not mere sufferers or simply patients. The extraordinary pain of a burn makes one a victim, as if you were shot in your own bed by a crazed stranger. Something horrible has been done unto you. Something unexpected. Incomprehensible. Irrevocable. I am dishonouring many I know: acquaintances, a dear friend - men and women who daily tolerate extraordinary, unrelenting pain. I think of Natalie and I am ashamed.
However much I know I am not on fire or even smoldering, I can only say and feel that it burns. In my imagination, a slow burn, like a subterranean Saskatchewan coal seam, is methodically laying waste to the core of my hands - until it is spent.
"Some smolder deep within abandoned mines; others blaze forth in exposed seams of coal. Like forest fires, coal fires can be sparked either by natural phenomena such as lightning or by people's carelessness. Beyond their potentially devastating effects on mining communities, coal fires change the landscape and damage the environment. "
But what I think I know about pain at this moment, even after surgeries and disease and childbirth, will be shattered, blasted apart in a few months time. Burning has its own vocabulary. Burn. Singe. Sear. For now, I have my slow burn.
Doctors have a system for helping patients articulate their pain. The 1-10 scale. You know it: So where does it hurt? Here? How does it feel now? When I do this. On a scale of 1-10? 1 being little pain.
Of course, the relativity of pain renders this assessment tool almost useless. One man's 10 is another man's 5. The man that has broken his back understands 10 just a little differently from the man who has suffered a bout of indigestion. Nevertheless, somehow, both you and your doctor learn something about you.
And then there is the hierarchy of suffering. Me and my Natalie. Many, if not all of us, in our quest for validation and treatment, seek to paradoxically *score* higher on and refute the hierarchy. But the hierarchy is meaningless. In the end, it is only you. You, and what you can bear.
I can almost bear the burn. There is no painkiller that can reach inside a dying bone and soothe it. No tonic or lotion. There are just forgetting drugs: wine, laughter, love, distraction. These I have in abundance, when I remember to take them. And accept them.
God bless my husband for easing my pain and my load - thank you, Eric, for showing and saying time and again:
Lean on Me:
| Al Green - Lean On Me .mp3 | ||
| | ||
| Found at bee mp3 search engine | |
Sunday, December 5, 2010
In Progress - Part 2: The Beat Goes On
This was what I had feared most. This was my monster under the bed. "To salvage" means to save from peril, from complete destruction. My wrist is one step from annihilation. All those months under the gortex and fibreglass, it was disintegrating quietly. It had done everything I had imagined it could. And here it and I are, at least with a chance of salvaging.
Yet I also have a nagging feeling - could it have been this bad all along? In the coming days, still obsessed and preoccupied, I will cross-reference MRI results and doctors' notes. From a report done 7 months after my initial diagnosis, one sentence haunts me: The lunate looks very similar to the previous study done in December 2007.
I have not let go of my anger and sense of betrayal over my (lack of) treatment by the Victorian group of plastic surgeons. Even though I am now in the gifted and concerned hands of another surgeon, I cannot forget what has happened. Did Dr. D actually know this all along? Was this the reason for his arrogance and reluctance?
I know how petty and sad this seems. It is petty and sad. There is no end to my conspiracy theories. Nothing will satisfy my need for validation. My family, my friends, and my neighbours listen to me patiently. It will be many months before there is a letting go, a peace established within myself but also, significantly, with Dr.D.
In the meantime, my monster has not only reared his ugly, bony head, but is waggling his slimy tongue at me. Surprising even myself, and despite my suspicions and bitterness, I almost immediately begin coping, strategizing. The worst case scenario is being played out and there is nothing to do but accept it and move on. That is all there is.
A rant, a drink, and a few tears later, Elvira and I are on our way back to St. Paul's. Unfortunately, the day has progressed and with no known protocol for queue jumping, we wait with dozens of others until our need to get to the ferry terminal becomes urgent. I don't get to see Dr. G again this day but after five more hours in Friday afternoon gridlock and a ferry ride, I am home, exhausted, sharing the news with my husband.
There is also a voicemail from Dr. G. He regrets that he didn't get to see me again and leaves a detailed explanation of why he must do the salvage procedure and an insistence that I cast my right wrist immediately. It seems a small and natural gesture, this 3-minute follow-up call, but I recognize and respect it for what it is: an anomaly, a gift.
And The Beat Goes On:
Yet I also have a nagging feeling - could it have been this bad all along? In the coming days, still obsessed and preoccupied, I will cross-reference MRI results and doctors' notes. From a report done 7 months after my initial diagnosis, one sentence haunts me: The lunate looks very similar to the previous study done in December 2007.
I have not let go of my anger and sense of betrayal over my (lack of) treatment by the Victorian group of plastic surgeons. Even though I am now in the gifted and concerned hands of another surgeon, I cannot forget what has happened. Did Dr. D actually know this all along? Was this the reason for his arrogance and reluctance?
I know how petty and sad this seems. It is petty and sad. There is no end to my conspiracy theories. Nothing will satisfy my need for validation. My family, my friends, and my neighbours listen to me patiently. It will be many months before there is a letting go, a peace established within myself but also, significantly, with Dr.D.
In the meantime, my monster has not only reared his ugly, bony head, but is waggling his slimy tongue at me. Surprising even myself, and despite my suspicions and bitterness, I almost immediately begin coping, strategizing. The worst case scenario is being played out and there is nothing to do but accept it and move on. That is all there is.
A rant, a drink, and a few tears later, Elvira and I are on our way back to St. Paul's. Unfortunately, the day has progressed and with no known protocol for queue jumping, we wait with dozens of others until our need to get to the ferry terminal becomes urgent. I don't get to see Dr. G again this day but after five more hours in Friday afternoon gridlock and a ferry ride, I am home, exhausted, sharing the news with my husband.
There is also a voicemail from Dr. G. He regrets that he didn't get to see me again and leaves a detailed explanation of why he must do the salvage procedure and an insistence that I cast my right wrist immediately. It seems a small and natural gesture, this 3-minute follow-up call, but I recognize and respect it for what it is: an anomaly, a gift.
And The Beat Goes On:
| Sonny & Cher - The Beat Goes On .mp3 | ||
| | ||
| Found at bee mp3 search engine | |
Wednesday, November 24, 2010
In Limbo - Part 8: Help! (at last)
If I had to pinpoint the day and time I started to get desperate and paranoid, it would probably be this day in April, that minute or two I spend on the phone with Dr. T. It’s not a clinical, official, paranoia, but I have definitely moved beyond what some call a healthy scepticism. I now have a very unhealthy scepticism. Whereas I may have felt like a drug dealer when “smuggled” in for my MRI, I now feel like a drug addict, looking for a fix. Please, doctor, won’t you help me out? Just a little?
There is a psychology to any illness, whether you have chicken pox or a broken leg. There is a particular psychology to a progressive illness or disease, one in which the pain, loss of mobility, and exhaustion are all framed in a race against the clock. The matter of you walking or not, or living or not, is a matter of time and timely treatment and, occasionally, of timely miracles. The sense that time is slipping from you and taking with it your potential to live well or better or at all makes your heart race. The squeeze of time shortens your breath and flips your stomach. It makes small talk and eye contact difficult, and it pushes you to the edge of every seat, one leg rapidly shaking and tapping. Up and down, up and down. You are ready to take flight at any given moment.
Another thing occurs as you begin to identify with yourself as sick or disabled: you think you are too young. You feel ripped off. The irony of Kienbock’s, as well as many other much more serious conditions, is that it generally affects the “young”. Kienbock’s most commonly affects those aged 20 to 40. People just starting their working and family lives. At 37, I am a grandmother in the Kienbock’s family, but I have young children, a new husband, and a new business. I’m just getting started, I feel. I don’t think of myself as old. That youth is a relative concept doesn’t truly become clear until you’re older…or sick. And as they say, youth is wasted on the young.
You believe that the medical profession should be rushing to treat you. You’re a young, vibrant contribution to the world and they’re just letting you waste away. Doctors and medical caregivers, however, have a broader perspective of illness and aging. They realize early on that the big secret is that most of us don’t just suddenly keel over when we’re 90 and go gentle into that good night.
No, the secret is that our bodies start to break down slowly, lose function bit by bit: bursitis by herniation by emphysema by cancer by toothache. The secret is that there comes a day when one or several "medical" conditions, however minor or serious, exist in your body and there is no cure or treatment, there is simply management. Your body and its activities may be forever limited or altered and there may be chronic pain.
That doctors know this and that their patients can’t fathom or won't accept it is the great disconnect in medical care.
I can’t explain my new, sad sense of self to anyone, not my husband or my closest friend. I feel isolated and pathetically, alone. There is no need for this, for what is tantamount to self-pity, yet this new introversion smothers me, traps me.
My mother, as mothers do, sees the crazy in my eyes, my disconnect from “real” life and unbeknownst to me, is working her way up to a semi-friendly takeover of my medical care. When all is said and done – the numerous phone calls and faxes and costly private consultations (yes, there is a two-tier system in Canada!) - good old Mum has landed me a surgeon. A surgeon who has even treated Kienbock’s.
Dr.G works out of St. Paul’s in Vancouver. Each way, it is a 4-hour car and ferry journey from my home. But you know what, it’s all good because what I need most of all is:
Help!
There is a psychology to any illness, whether you have chicken pox or a broken leg. There is a particular psychology to a progressive illness or disease, one in which the pain, loss of mobility, and exhaustion are all framed in a race against the clock. The matter of you walking or not, or living or not, is a matter of time and timely treatment and, occasionally, of timely miracles. The sense that time is slipping from you and taking with it your potential to live well or better or at all makes your heart race. The squeeze of time shortens your breath and flips your stomach. It makes small talk and eye contact difficult, and it pushes you to the edge of every seat, one leg rapidly shaking and tapping. Up and down, up and down. You are ready to take flight at any given moment.
Another thing occurs as you begin to identify with yourself as sick or disabled: you think you are too young. You feel ripped off. The irony of Kienbock’s, as well as many other much more serious conditions, is that it generally affects the “young”. Kienbock’s most commonly affects those aged 20 to 40. People just starting their working and family lives. At 37, I am a grandmother in the Kienbock’s family, but I have young children, a new husband, and a new business. I’m just getting started, I feel. I don’t think of myself as old. That youth is a relative concept doesn’t truly become clear until you’re older…or sick. And as they say, youth is wasted on the young.
You believe that the medical profession should be rushing to treat you. You’re a young, vibrant contribution to the world and they’re just letting you waste away. Doctors and medical caregivers, however, have a broader perspective of illness and aging. They realize early on that the big secret is that most of us don’t just suddenly keel over when we’re 90 and go gentle into that good night.
No, the secret is that our bodies start to break down slowly, lose function bit by bit: bursitis by herniation by emphysema by cancer by toothache. The secret is that there comes a day when one or several "medical" conditions, however minor or serious, exist in your body and there is no cure or treatment, there is simply management. Your body and its activities may be forever limited or altered and there may be chronic pain.
That doctors know this and that their patients can’t fathom or won't accept it is the great disconnect in medical care.
I can’t explain my new, sad sense of self to anyone, not my husband or my closest friend. I feel isolated and pathetically, alone. There is no need for this, for what is tantamount to self-pity, yet this new introversion smothers me, traps me.
My mother, as mothers do, sees the crazy in my eyes, my disconnect from “real” life and unbeknownst to me, is working her way up to a semi-friendly takeover of my medical care. When all is said and done – the numerous phone calls and faxes and costly private consultations (yes, there is a two-tier system in Canada!) - good old Mum has landed me a surgeon. A surgeon who has even treated Kienbock’s.
Dr.G works out of St. Paul’s in Vancouver. Each way, it is a 4-hour car and ferry journey from my home. But you know what, it’s all good because what I need most of all is:
Help!
| The Beatles - Help .mp3 | ||
| | ||
| Found at bee mp3 search engine | |
Monday, November 22, 2010
In Limbo - Part 7: Out of Control
My cast is starting to break down. Not the fibreglass of course, but the layers of gortex underneath. It’s been 3 months. Those layers that haven’t matted together and begun their own, moist, science experiment are flaking and flying off into space, drains, dinner.
My GP dutifully requisitions a cast change and I pop down to visit John, my cast man. He asks how I’m doing; we briefly discuss the “incident” with my former surgeon. John says that he’s kind of a serious guy. Who’s your new surgeon, he asks. I tell him that it’s a Dr. T and ask if I’m pronouncing it right - I haven’t seen him yet. John tells me Dr. T is a good guy but did you know he works in the same office as Dr.D? I do know and I’m certain it won’t be a problem. He’s a professional after all.
I’m a little shocked by my arm when it’s unwrapped and naked under the hospital lights. It looks tiny and white but also a bit hairy and dirty-looking. John tells me that it is just dead skin and hadn’t you just come back from Mexico when I put this on? My January tan has flaked off and stuck itself to my old gortex padding. Gross.
I choose a baby blue wrap to celebrate spring and drive home with a fresh 75 dollar cast, still hot from the molding and shaping, my shrinking arm pulsing underneath. Four days until I see Dr. T. I am excited, nervous, and relieved all at once.
The phone rings the next morning and I mumble a hello through a mouthful of toast. May I speak with Fiona Bramble? It is Dr.T. He’s terribly sorry but he has reviewed my case and feels he is unable to treat me. My second, sneaky, MRI has just been forwarded to him. It confirms that I now have bilateral Kienbock’s. It is beyond my expertise, he says.
I have been waiting to see him for almost 3 months.
My appointment is in 2 days, I say. I know, which is why I am calling you personally. I am very sorry. I ask him what I am supposed to do now. He replies that he doesn’t know. Good luck, he says.
I shouldn’t be surprised, I suppose, and I’m not. I’m stunned. And angry. So angry I can’t move or speak for several minutes.
When I can speak, I pick up the phone. I call my husband. He can’t believe it either. He almost doesn’t believe me, I feel. I call my GP’s office. Maggie, her receptionist, has known me a long time. Maggie has some understanding of my case and condition. I need to see Gillian right away, I tell her. She asks what is happening. My voice shakes when I tell her about the call from Dr.T. There is a pause. I’m sorry, did you say Dr.T called you himself? I don’t understand. That is highly unusual. That word doesn’t mean much to me anymore.
I am starting to feel crazy again. I have cried more in the last four months than in my entire life. It’s not because my wrists hurt. Or because my feelings are hurt. I have lost control over my body. Over my life.
The tears come, hot and furious.
Out of Control:
My GP dutifully requisitions a cast change and I pop down to visit John, my cast man. He asks how I’m doing; we briefly discuss the “incident” with my former surgeon. John says that he’s kind of a serious guy. Who’s your new surgeon, he asks. I tell him that it’s a Dr. T and ask if I’m pronouncing it right - I haven’t seen him yet. John tells me Dr. T is a good guy but did you know he works in the same office as Dr.D? I do know and I’m certain it won’t be a problem. He’s a professional after all.
I’m a little shocked by my arm when it’s unwrapped and naked under the hospital lights. It looks tiny and white but also a bit hairy and dirty-looking. John tells me that it is just dead skin and hadn’t you just come back from Mexico when I put this on? My January tan has flaked off and stuck itself to my old gortex padding. Gross.
I choose a baby blue wrap to celebrate spring and drive home with a fresh 75 dollar cast, still hot from the molding and shaping, my shrinking arm pulsing underneath. Four days until I see Dr. T. I am excited, nervous, and relieved all at once.
The phone rings the next morning and I mumble a hello through a mouthful of toast. May I speak with Fiona Bramble? It is Dr.T. He’s terribly sorry but he has reviewed my case and feels he is unable to treat me. My second, sneaky, MRI has just been forwarded to him. It confirms that I now have bilateral Kienbock’s. It is beyond my expertise, he says.
I have been waiting to see him for almost 3 months.
My appointment is in 2 days, I say. I know, which is why I am calling you personally. I am very sorry. I ask him what I am supposed to do now. He replies that he doesn’t know. Good luck, he says.
I shouldn’t be surprised, I suppose, and I’m not. I’m stunned. And angry. So angry I can’t move or speak for several minutes.
When I can speak, I pick up the phone. I call my husband. He can’t believe it either. He almost doesn’t believe me, I feel. I call my GP’s office. Maggie, her receptionist, has known me a long time. Maggie has some understanding of my case and condition. I need to see Gillian right away, I tell her. She asks what is happening. My voice shakes when I tell her about the call from Dr.T. There is a pause. I’m sorry, did you say Dr.T called you himself? I don’t understand. That is highly unusual. That word doesn’t mean much to me anymore.
I am starting to feel crazy again. I have cried more in the last four months than in my entire life. It’s not because my wrists hurt. Or because my feelings are hurt. I have lost control over my body. Over my life.
The tears come, hot and furious.
Out of Control:
| The Chemical Brothers - Out Of Control .mp3 | ||
| | ||
| Found at bee mp3 search engine | |
In Limbo - Part 6: Emotional Rescue
My husband knows a guy who knows a guy. Let’s call him Yves. Yves makes Murphy beds and goes mountain biking. Yves also does the graveyard shift on the MRI machines at one of our local hospitals.
I am given Yves’ cell # and email address. The drill is: email or call Yves with your contact information; if some time opens up on one of those long nights in medical imaging, Yves will call or email you to come on down. ASAP and on the hush-hush. I feel like a drug dealer.
For reasons unknown to me, MRI testing is carefully rationed in this part of Canada. Perhaps our provincial government is worried about its effects. Perhaps our premier thinks they are alien probe machines. Whatever the problem, patients sometimes wait years for an MRI, often long past the point that reasonable treatment is possible for whatever ails them. Sometimes patients die waiting, the machines and those that operate them sitting idle and empty.
I know I’ve been lucky. I have actually had several MRIs in what I consider to be my young life. I’ve had various problems and excellent doctors and sometimes friends in, if not high, at least well-placed positions. My MRIs have led to immediate and successful treatment. It should be the same for everyone.
Now, my deal with Yves may sound illicit but when I do get the call and rush to the hospital at 11 in the evening, squeezed between his first patient and his 12:30 one, Yves is nothing but professional. Of course I don’t have a requisition from a specialist, Yves knows this, but he does insist on having copies of my confirmed diagnosis and the xray that suggests my possible diagnosis, which recommends an MRI for confirmation.
He is dotting his i's and crossing his t’s. He is curious about Kienbock’s and seems to understand the relative urgency to my treatment. He knows his MRI can get me help faster. This gives me a strange confidence.
I put on my head phones and slide into the tube. I detest the tube. It is like a coffin and when the banging starts, it is easy to imagine yourself banging on the lid of the coffin, trying to get out. The U2 being piped in to comfort me is barely audible. I am very uncomfortable and a little scared but most of all, I am grateful. Progress at last.
Emotional Rescue:
I am given Yves’ cell # and email address. The drill is: email or call Yves with your contact information; if some time opens up on one of those long nights in medical imaging, Yves will call or email you to come on down. ASAP and on the hush-hush. I feel like a drug dealer.
For reasons unknown to me, MRI testing is carefully rationed in this part of Canada. Perhaps our provincial government is worried about its effects. Perhaps our premier thinks they are alien probe machines. Whatever the problem, patients sometimes wait years for an MRI, often long past the point that reasonable treatment is possible for whatever ails them. Sometimes patients die waiting, the machines and those that operate them sitting idle and empty.
I know I’ve been lucky. I have actually had several MRIs in what I consider to be my young life. I’ve had various problems and excellent doctors and sometimes friends in, if not high, at least well-placed positions. My MRIs have led to immediate and successful treatment. It should be the same for everyone.
Now, my deal with Yves may sound illicit but when I do get the call and rush to the hospital at 11 in the evening, squeezed between his first patient and his 12:30 one, Yves is nothing but professional. Of course I don’t have a requisition from a specialist, Yves knows this, but he does insist on having copies of my confirmed diagnosis and the xray that suggests my possible diagnosis, which recommends an MRI for confirmation.
He is dotting his i's and crossing his t’s. He is curious about Kienbock’s and seems to understand the relative urgency to my treatment. He knows his MRI can get me help faster. This gives me a strange confidence.
I put on my head phones and slide into the tube. I detest the tube. It is like a coffin and when the banging starts, it is easy to imagine yourself banging on the lid of the coffin, trying to get out. The U2 being piped in to comfort me is barely audible. I am very uncomfortable and a little scared but most of all, I am grateful. Progress at last.
Emotional Rescue:
| Rolling Stones - Emotional Rescue .mp3 | ||
| | ||
| Found at bee mp3 search engine | |
Thursday, November 18, 2010
In Limbo - Part 5: Timebomb
Surgeons remind me of children at Christmas. X-ray, CT-scan, and MRI requisitions are like their letters to Santa. The results, the gifts, wow, the possibilities. Dr. Johnny could get a sketch pad but man, imagine if he gets the Nerf Longshot CS-6, rare and extremely coveted by all the little Johnnys out there. Dr. Susie is hoping for a Taylor Swift Jukebox Doll Set. The other Susies will be so jealous.
Like all of us, perhaps even more so, orthopaedic surgeons want to do something exciting and challenging. Something different. Another carpal tunnel? No thanks. When the test results come back and it's something "rare", Johnny and Susie have just scored this year's hard-to-find-totally-sick-Christmas present with full bragging rights. That present gets their full attention. For about as long as it takes for the next big thing or next birthday to some around.
My kinda-cool Kienbock's Disease got delivered, opened up, and played with for awhile. Now, I'm the scruffy Taylor Swift doll under the bed, hair matted and skirt askew. Nobody wants to play with me.
So, I play by myself for awhile.
I visit my GP and confess the story behind my surgeon's refusal of treatment. I'm still feeling a little crazy, unkempt, guilty. To her credit, she thinks what I asked of him was perfectly reasonable. She reassures me. We will find you another surgeon. Give me a week or two. Neither of us knows yet that the week or two will stretch to months.
I go back to my one-armed life. I've figured out some things, like if I keep driving straight, it's not so hard. Sure, it takes me a little longer to get around but hey, I get there. I discover parallel parking is even harder now than it was on my driving test 20 years ago.
I clock that it takes 10-12 minutes for my cast to drip dry as I wait on the mat outside the shower, squeezing the fibreglass and gortex every so often.
I quit running because even though my cast weighs only a few pounds, my back and shoulders get out-of-whack and it hurts. I probably look silly too. I continue with aerobics though and feel guilty when the sweat drips from my cast and leaves small puddles on the floor as we leap about the room. I worry I'll slip. I worry one of the sweet, little old ladies that frequent my gym will slip in my sweat puddle. There are a surprising number of sweet little old ladies that frequent my gym.
I'm surprised what a good sous chef my husband makes and he kindly shows me how the food processor works. Chopping is quite tricky with one hand. Tricky and dangerous. More than one cucumber has shot out from underneath my cast and flown across the room.
My soon-to-be three-year old is getting quite adept at buttons, laces, and zippers. He even tries to help me with mine. Now, if only he could get my ponytail right. Don't even ask about the toilet thing. Or bras.
I write right-handed on the classroom board. My letters are almost legible. When I was a little girl, my mom would sometimes get me to practice writing with my right-hand - just in case you lose your left hand she would say. Creepy.
I stop typing. It's awkward with my cast propped up on the desk and my other hand is too sore from doing double duty. I can't mark my students' work or add comments on their essays. I miss email. The techie at the college where I teach sets up a voice program for me, so I can leave private audio messages for my students in the computer lab. I install it on my home computer too and start send voice emails instead. I think it's brilliant. I try to explain it to my friends and colleagues but most don't get it and never open the audio files attached to the emails. I think they think that I'm sending them spam or dirty videos. I am relieved when the spring session comes to an end.
I am coping but I have also become keenly aware of why God designed our bodies with two of mostly everything.
During all of this, I'm worried. What is happening under those layers of gortex and fibreglass? KD is a progressive disease after all. The clock is ticking. I also need an MRI to confirm or refute the diagnosis on my right wrist. Only a specialist can order one. My GP comes through in early March: I have an appointment with a new surgeon for mid-April. Sure, I can wait 5 more weeks. No problem.
Timebomb:
Like all of us, perhaps even more so, orthopaedic surgeons want to do something exciting and challenging. Something different. Another carpal tunnel? No thanks. When the test results come back and it's something "rare", Johnny and Susie have just scored this year's hard-to-find-totally-sick-Christmas present with full bragging rights. That present gets their full attention. For about as long as it takes for the next big thing or next birthday to some around.
My kinda-cool Kienbock's Disease got delivered, opened up, and played with for awhile. Now, I'm the scruffy Taylor Swift doll under the bed, hair matted and skirt askew. Nobody wants to play with me.
So, I play by myself for awhile.
I visit my GP and confess the story behind my surgeon's refusal of treatment. I'm still feeling a little crazy, unkempt, guilty. To her credit, she thinks what I asked of him was perfectly reasonable. She reassures me. We will find you another surgeon. Give me a week or two. Neither of us knows yet that the week or two will stretch to months.
I go back to my one-armed life. I've figured out some things, like if I keep driving straight, it's not so hard. Sure, it takes me a little longer to get around but hey, I get there. I discover parallel parking is even harder now than it was on my driving test 20 years ago.
I clock that it takes 10-12 minutes for my cast to drip dry as I wait on the mat outside the shower, squeezing the fibreglass and gortex every so often.
I quit running because even though my cast weighs only a few pounds, my back and shoulders get out-of-whack and it hurts. I probably look silly too. I continue with aerobics though and feel guilty when the sweat drips from my cast and leaves small puddles on the floor as we leap about the room. I worry I'll slip. I worry one of the sweet, little old ladies that frequent my gym will slip in my sweat puddle. There are a surprising number of sweet little old ladies that frequent my gym.
I'm surprised what a good sous chef my husband makes and he kindly shows me how the food processor works. Chopping is quite tricky with one hand. Tricky and dangerous. More than one cucumber has shot out from underneath my cast and flown across the room.
My soon-to-be three-year old is getting quite adept at buttons, laces, and zippers. He even tries to help me with mine. Now, if only he could get my ponytail right. Don't even ask about the toilet thing. Or bras.
I write right-handed on the classroom board. My letters are almost legible. When I was a little girl, my mom would sometimes get me to practice writing with my right-hand - just in case you lose your left hand she would say. Creepy.
I stop typing. It's awkward with my cast propped up on the desk and my other hand is too sore from doing double duty. I can't mark my students' work or add comments on their essays. I miss email. The techie at the college where I teach sets up a voice program for me, so I can leave private audio messages for my students in the computer lab. I install it on my home computer too and start send voice emails instead. I think it's brilliant. I try to explain it to my friends and colleagues but most don't get it and never open the audio files attached to the emails. I think they think that I'm sending them spam or dirty videos. I am relieved when the spring session comes to an end.
I am coping but I have also become keenly aware of why God designed our bodies with two of mostly everything.
During all of this, I'm worried. What is happening under those layers of gortex and fibreglass? KD is a progressive disease after all. The clock is ticking. I also need an MRI to confirm or refute the diagnosis on my right wrist. Only a specialist can order one. My GP comes through in early March: I have an appointment with a new surgeon for mid-April. Sure, I can wait 5 more weeks. No problem.
Timebomb:
| Beck - Timebomb .mp3 | ||
| | ||
| Found at bee mp3 search engine | |
Wednesday, November 17, 2010
In Limbo - Part 3: Superfreak
I keep looking at my left hand, my wrist - looking for changes, looking for anything. I imagine the bones inside, all of them, not just my poorly lunate, crumbling, breaking off, crashing into each other like dominoes, taking each other down. I stick my tongue out at it sometimes, swear at it under my breath quietly and other times loud, out loud. But mostly, I nurse it, cradle it - worry that my every action will hurry along the inevitable. I am afraid to carry my books to class, too chicken to open heavy doors. Two weeks is suddenly a long time.
My husband comes with me to the "clinic", the orthopaedic casting clinic at the local hospital. This is where, I am to discover, my surgeon spends two days of his week, consulting, casting, and splinting for trauma and non-trauma patients alike. I feel like a trauma patient.
When my surgeon sits down across from my husband and me on our cold metal chairs, he peeks at my file and gathers his thoughts for a brief moment before he says: Why aren't you in a cast?
I, um, I don't know. What? I splutter. I um, have a few questions. I have my sheaf of papers, articles from medical journals, a list of questions one is supposed to ask her surgeon. I kind of hold them up and wave them in front of his face. I have lost my nerve completely.
Listen, he says, you don't have time to fool around. If you can't decide on surgery, you have to be put in a cast today, now. I'll get John to come and cast you.
Oh my god, I think to myself. I am left-handed. How will I drive? How will I write? How will I teach? How will I cook? How will I dress myself? How will I do anything? I'm bloody well going to shower.
Gortex, please. Can I have the black wrap, please?
The casting process itself takes only 20 minutes or so, and my husband and I are back in the car making our way home. I can't remember if we speak. The list of activities and responsibilities that I now feel I can't do or fulfill seems to be growing by the second, by each intersection we pass. My surgeon came back briefly to check the cast and was gone as quickly. I don't know how I see him again. The cast completely immobilizes my forearm, wrist and all but the tips of my fingers. I can't hold anything with this hand. I can't do anything with this hand. The cast feels very heavy with its layers of gortex and stiff, hard black fibreglass. It's hot.
When we get home, I go straight to the bathroom. I pee. I pull some tp from the roll with my right and pass it to my left, as usual. Then I stare at it. How am I going to...? Oh my god.
My husband comes with me to the "clinic", the orthopaedic casting clinic at the local hospital. This is where, I am to discover, my surgeon spends two days of his week, consulting, casting, and splinting for trauma and non-trauma patients alike. I feel like a trauma patient.
When my surgeon sits down across from my husband and me on our cold metal chairs, he peeks at my file and gathers his thoughts for a brief moment before he says: Why aren't you in a cast?
I, um, I don't know. What? I splutter. I um, have a few questions. I have my sheaf of papers, articles from medical journals, a list of questions one is supposed to ask her surgeon. I kind of hold them up and wave them in front of his face. I have lost my nerve completely.
Listen, he says, you don't have time to fool around. If you can't decide on surgery, you have to be put in a cast today, now. I'll get John to come and cast you.
He stands up and leaves the room. Enter John.
So, um, what kind of cast is it? Can I get it wet?
No, said John, but you can pay extra for a gortex one if you want; those you can get wet. They're 75 bucks.
Well, how long am I going to be in it?
6 months, John responds casually.
Oh my god, I think to myself. I am left-handed. How will I drive? How will I write? How will I teach? How will I cook? How will I dress myself? How will I do anything? I'm bloody well going to shower.
Gortex, please. Can I have the black wrap, please?
The casting process itself takes only 20 minutes or so, and my husband and I are back in the car making our way home. I can't remember if we speak. The list of activities and responsibilities that I now feel I can't do or fulfill seems to be growing by the second, by each intersection we pass. My surgeon came back briefly to check the cast and was gone as quickly. I don't know how I see him again. The cast completely immobilizes my forearm, wrist and all but the tips of my fingers. I can't hold anything with this hand. I can't do anything with this hand. The cast feels very heavy with its layers of gortex and stiff, hard black fibreglass. It's hot.
When we get home, I go straight to the bathroom. I pee. I pull some tp from the roll with my right and pass it to my left, as usual. Then I stare at it. How am I going to...? Oh my god.
Superfreak...
| Rick James - Superfreak .mp3 | ||
| | ||
| Found at bee mp3 search engine | |
Sunday, November 14, 2010
In Limbo - Part 2: Welcome to the Jungle
There is not much grey in a surgeon's world - everything is as black and white as the x-rays they inspect and dissect. For those who have had any professional contact with a surgeon, you will nod furiously in agreement when I describe mine as Type-A, decisive, blunt, jargon-prone, and about as fun as a bunion. Surgeons are also very much one other thing: unavailable.
When I left my surgeon's office that morning, disoriented and overwhelmed, having tossed a "I'll call you" as I sprinted to the elevator, desperate for some air - some thinking space, I had no idea, no basic understanding at all, that one does not simply ring up his surgeon and have a chat.
After I had slowed my sobbing to a weep and was generally able to drive my son and me home safely, I did what every modern patient or potential patient does: I googled my diagnosis.
This should have been straightforward I suppose, except I had no idea what my diagnosis was. All I had was my foggy memory of the name of a disease that was uttered before an onslaught of images and terms and treatments were thrust upon me. My surgeon hadn't written anything down and my inexperienced self hadn't thought to ask. I had left his office in shock and completely ignorant. I racked my brain for the sounds of the word. I got as close as I could recall and in the Google search box, I typed: KING'S BOX disease
Now, any fellow sufferers might be laughing their pants off right now or, like when reading those lines posted on "misheard lyrics" sites, might be thinking: Yeah, that's what I heard too.
The truly funny part is, Google responded with: did you mean kienbock's disease?
No word of a lie. And so it began.
I googled and read and cross-referenced stories, websites, and medical journals. I am a researching geek, a linguist by training and a writer by will. I can and will eek every bit of information about something until the information and I are spent. But as my fellow sufferers will attest, to find any "answer" in all the Kienbock's research and articles is impossible. Each bit of information brings only more questions.
So I called my surgeon for a chat. As I'm sure I don't need to tell you, the conversation with the surgeon's receptionist/bodyguard went something like this:
Me: Hi there. I’m a patient of Dr. D-‘s and I have a few questions about my diagnosis.
Receptionist: Um, o.k. I can book you a follow-up appointment.
Me: Can he call me back? Or can I just leave some questions with you and he can email me or call me with some answers?
Receptionist: No. I can book you into the clinic in two weeks.
Me: Um, o.k. Where’s that? What time?
Etc… etc…
Surgeons do not chat. Surgeons are unavailable. Duh. Two more weeks pass.
Welcome to the Jungle...
| Guns N' Roses - Welcome to the Jungle .mp3 | ||
| | ||
| Found at bee mp3 search engine | |
Friday, November 12, 2010
In Limbo - Part 1: It's the End of the World as We Know It
He delivers the information with great seriousness and gravity and suddenly I've fallen down the shaft of a well I didn't see. I hear words like necrosis, loss of use, crumbling, deformity. Ice-cold blood slowly trickles from my brain to my senses as I register that whatever revelations I had thought might come to pass in this surgeon's office - a pulled tendon, a sprain, perhaps the ganglion my OT friend was so sure about - those possibilities have evaporated, swallowed by the light of the X-ray image being projected on the wall.
Having only just opened my file for the first time, the surgeon is suddenly rushing from the room to consult with his colleagues - there is a flurry of activity, of doors opening and closing, his white coat whisking around the corner. Then, there is the discussion of treatment - so many terms I can't understand - vocabulary I would later, over time, permanently add to my lexicon. There is an immediacy to his look, an urgency I don't fathom. He wants me to say something, to decide my course of action. I swear I see something close to pity in his eyes. Perhaps it is impatience.
I keep bouncing my two-year old on my lap. Then I say I will call him. I get up, take the elevator to the parking lot, buckle my son in his car seat, then collapse in my own, sobbing.
You're probably expecting me to say that I have cancer or, at the very least, some other terminal, life-threatening condition. Thankfully, no, and no. I have and had Kienbock's Disease, also known as avascular necrosis of the lunate, a small bone in your wrist. Doesn't sound so bad now, does it?
Not life-threatening, true, but life-altering in many ways. Besides not knowing any of the terms my surgeon tossed around that morning, I knew least of all that his most grave pronouncement would set me up to become fearful, paranoid, and singularly obsessed for over two years as I became a reluctant member of a small club fighting for the best treatment possible.
It's the End of the World as We Know it...
| R.E.M. - It's The End Of The World As We Know It .mp3 | ||
| | ||
| Found at bee mp3 search engine | |
Subscribe to:
Posts (Atom)