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!

	The Beatles - Help .mp3
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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:

	The Chemical Brothers - Out Of Control .mp3
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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:

	Rolling Stones - Emotional Rescue .mp3
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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:

	Beck - Timebomb .mp3
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In Limbo - Part 4: The Last Day of Our Acquaintance

I am 50/50 when I pick up the phone.

50% wanting to get some answers out of the man. 50% freaking out because my right wrist is now hurting quite a bit and, it seems, losing some range of motion. Sigh. All 100% of me needs to meet with my surgeon asap.

I live on beautiful Vancouver Island, off the coast of British Columbia, Canada. Victoria is the provincial capital and a haven for young families and retirees alike. We are blessed with a medical system that is accessible to everyone, although it can creak along at a dinosaur pace at times. In Victoria, all hand and wrist surgery is performed by plastic surgeons. We have 4 plastic surgeons. Number of plastic surgeons in Victoria who will treat Kienbock's: 1

The answers I seek are elusive. I know this. In addition to all I have read and researched, I joined an online support group and though Kienbock's Disease is classified as "rare", the numbers in the group belie such designation. All the information I have and all the stories I am now intimate with make it crystal-clear that each case it very different and each corresponding treatment debatable. There are some constants, though, and it's these that give me the confidence to approach my surgeon again.

For those with Kienbock's, or KD as I have come to know it, the abbreviations and terms I use next will be familiar; for those unencumbered, the abbr. will be more than adequate. Suffice to say, the lunate bone is "dying" because it is no longer receiving blood and there are a number of stages and corresponding treatments and surgical procedures that attempt to either trigger or redirect that blood flow again, "revascularize", or essentially act as pain management, known as "salvage procedures". Skip ahead even. Trust me.

I am diagnosed Stage 1, possibly Stage 2 (although I'll later doubt this original diagnosis - this is what I have for the moment) and my surgeon wants to perform a radial shortening with a VBG. I am negligibly ulnar negative, -1mm. Therefore, while I don't take any major issue with the VBG, I feel pretty strongly that I am NOT a candidate for radial shortening, particularly having read so many of the complications and "non-success" stories arising from that procedure. I'm also keen to discuss MCD, a relatively new procedure that is less invasive and has reported good outcomes.

I've got my print-outs ready again. I'll stick to my guns this time. My husband is with me this third visit - he knows I might crack and we talk strategy. Stay focused, he reminds me.

It all goes wrong almost immediately. My surgeon walks in the room, barely glances at either of us, and says: So, what is it?

I decide to go with the warm up, a plea to that side of him that is supposed to help me. Help me. I tell him that my right hand is giving me trouble and I am worried. He nods, completes an x-ray requisition and hands it to me. He doesn't examine my wrist. He doesn't touch me or even look at me.

I ask him when I can get my cast off. He says in 10 more weeks. I ask then what? He says that depends.

I am starting to panic, feel a bit crazy. He's treating me like I am crazy. I don't understand. I do realize though that this is probably my last chance. I ask him if he has ever heard of MCD. I feel the air leave the room. I can see that he is deciding whether to be civil with me or not. He decides yes - for the moment.

He tells me that he has read something about it but doesn't know anyone who has performed it. I seize the moment. I show him the copies of articles on MCD that I have brought. I mutter something about good outcomes. My eyes and my body language practically beg him to look down at the papers or even take them. I feel like a Jehovah's Witness on a Catholic's doorstep.

He stops being civil. He suggests that I am wasting his time. I crack. I am not going to cry in front of this man. I say I have to go and rush out the door. While I am running down the stairs, he is telling my husband that he cannot treat me anymore.

I am crying, again, in the undergound parkade. I am clutching the x-ray requisition, the eventual test and results of which one week from now will suggest I also have Kienbock's in my right wrist. My surgeon never passes on those results. My surgeon never refers me to another doctor. I will see this man again one day, in a horrible moment neither of us can predict, but for now:

My left arm is in a cast. I have bilateral Kienbock's. I have no surgeon.


The Last Day of Our Acquaintance:

	Sinéad O'Connor - The Last Day Of Our Acquaintance .mp3
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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.

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
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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
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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
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