Identified

It finally arrived, my medicalert ID bracelet. See the picture? 

Sorry, not the greatest, but I just used my phone, in the dark. It’s rose gold, with a filigree ID tag.  It states, “NO MRI, spinal cord stimulator implant”.  That’s it right.  It doesn't say Sambot though, although I thought about it. Ugh, ending a sentence with a preposition, sorry, it was for dramatic effect.  I only ever do it for dramatic effect, I call it artistic license.

I've been silent because my chest pain has been back with a vengeance, keeping me from going to sleep, keeping me from staying asleep, stabbing and relentless, like my heart is covered with a deep rooted infectious scab that's being ripped and torn apart.  Eeeuuwww, while that was really disgusting, it's actually quite an accurate description. 

My technician called to check in to me the other day and I expressed my fears and anxiety about the increasing, and re-surging pain, and she suggested that I give myself a master reset.  Hilarious. I turn the stimulation off for about an hour, and then restarted it at 10% and slowly increased the stimulation, until ultimately I ended up where I began, at 92%.  Even so, it was very reassuring to speak with her, she said it was normal for me to experience this breakthrough pain.  She said that I would definitely need reprogramming, as things move as healing happens.

Once I turned the stimulation off, I certainly noticed it.

 If nothing else, it made me realize that even now, with this breakthrough pain, the stimulation is working.  When it was off, and I was hit with the full force of the pain of yester-month, I found myself instantly back at the precipice of desperation, and I wanted to reach for the magic potion. But no, even somewhat failed stimulation is markedly better than that, teetering on that precipice.  So, Tuesday, back to the hospital for reprogramming, fingers crossed she has parameters of perfection for me now, like she did during the trial.

 In more positive news, three and half weeks post major procedure, today, I walked around the block! Oh yes, big news around here, much excitement.

Cleanse me

It’s almost three weeks since the final procedure, and I’m still sending most of the days horizontal in bed. I’m certainly more mobile (I wanted to say spry, but it brought to mind images of a crafty, wizened old lady- not yet thank you very much!), with each passing day, but with each new confidence, the very next day I get pushed back a little further again.  It still really, really hurts. On the sunnier side, the evil chest infection is almost gone, and I’ve actually tried turning the stimulation down, which has been somewhat effective.  Hopefully one day it will even out, or settle into a forwards pattern.  That would be nice.

But…. drum roll….  I can now report, I’ve had a real shower!!!!  After more than thirty, unkempt, prosey days. 

And yes, it was almost everything I’d hoped it would be, except that I couldn't bend, which is actually more restrictive than you realise, until you can’t.. bend that is.

It may have been the longest shower in the history of my showers. I’m actually normally very conscious of water conservation, also I get bored in there.   

Not this time.  While I was in there, delighting in the rainforest over my head feelings, the steam, the soaps, scrubs and suds, I noticed the name of one my cleansers… You'll have to look very closely at the gold writing, how very appropriate, tres amusant.

There are some benefits...

There's got to be some benefits to this whole stimulator caper right? So, on Easter morning, I present to you, my top three advantages of being bionic. 

1. First of all, I get to go to the head of the line at airport security, no security sensors for this Sambot.
2. Secondly, I get new jewelery, my new ‘NO MRI’ bracelet is on its way.  Although I have a card for my wallet stating that I have a stimulator, and that I'm not to undergo MRI, or walk through security sensors, apparently, paramedics look for jewelery, and not through peoples wallets for little cards with instructions.
3. And third, I present to you, mah reachin' stick!

Yes, I'm very aware this seems like it may be a children's toy, and quite frankly, I'm not sure that it isn't. But, as I'm restricted from bending, it does a remarkable job of, well, reachin'… oh, and then pickin', (up that is).

Yes, that’s three whole benefits, as I think of more, I’ll add them.  Oh yeah, maybe I can stop taking drugs, get out of bed, go back to work, and get my life back.  That’s got to be one, or more.  I'll let you know.

The Many Do's and Don'ts of life as a Sambot

I've already whined abut the trampolining..  here's the comprehensive list.

 0-6 weeks post operatively

• Do not lift your elbows above shoulder height

• No bending, stretching, reaching, twisting, pushing or pulling

• Walking: you may walk as much as you like but do pace yourself, particularly if your

walking has been quite limited prior to the procedure

• Stairs: You may walk up stairs as much as you can tolerate but remember to pace yourself. Avoid going up two   stairs at a time.

• Carrying and lifting: You may lift and carry light things e.g. kettle as long as not full, cups/mugs, light     saucepans only.

• Cooking: Can be done as long as at waist height only. No bending to ovens.

• Driving: No driving until advised by pain nurse

• Sitting: Pace your sitting. Do not sit for long periods. When sitting sit with the back well supported at all time –   no slouching.

• Sleeping: Sleeping on your side will be less painful but any position is OK as long as the spine is not twisted    into a strange position. No hands above the head.

• Exercise: No stretching or rehabilitation exercises at this stage.

• Sex: Not advised at this stage.

6-12 weeks post operatively.

• Do not lift your elbows above shoulder height.

• No bending, stretching, reaching, twisting, pushing or pulling.

• Walking: you may walk as much as you like but do pace yourself

• Stairs: You may walk up stairs as much as you can tolerate but remember to pace yourself. Avoid going up two   stairs at a time.

• Carrying and lifting: You may lift and carry light things e.g.kettle as long as not full, cups/mugs, light saucepans    and light shopping bags only.

• Driving: No driving

• Sitting: no slouching and back to be supported at all times

• Sleeping: Any position is OK as long as the spine is not twisted into a strange position, and no hands above the head.

• Cooking: if predominantly at waist height.

• Exercise: No stretching or rehabilitation exercises at this stage.

• Sex: Not advised at this stage.

 3 months – 6 months post operatively.

• No prolonged elbows above shoulder height

• Gentle bending, stretching, pushing or pulling

• Minimal reaching and twisting.

• Walking: you may walk as much as you like but do pace yourself

• Stairs: You may walk up stairs as much as you can tolerate.  Avoid going up two stairs at a time

• Carrying and lifting: You may gradually increase the carrying and lifting.

·   NO GYM workouts.

• Driving: Driving can commence with short journeys only. Be aware of your posture and positioning especially when reversing. Mirrors should be used when reversing where possible. Remember – the minimum requirement for driving is the need to make an emergency stop. If you do not feel you are able to do this then do not drive.

• Sitting: no slouching and back to be supported at all times

• Cooking: Ovens can be used as long as knees are bent. Minimal bending from back.

• Exercise: You may begin gentle rehabilitation exercises.

• Sex: You can return to this activity as long as gentle. Remember to switch off your stimulator before undertaking activity.  Hahahaheehee!  So immature...

Long term dos and don’ts

• DO NOT receive manipulation from a physiotherapist, doctor, osteopath or chiropractor.

• DO NOT turn the head right the way round if you have a cervical stimulator (neck). (I'm imagining the Exorcist)

• DO NOT undergo MRI scanning. Normal x-ray and CT scan is OK.

• Avoid contact sports such as rugby and football.

• No judo, karate, taekwondo or boxing

• No carpentry, plastering or painting  (for shame!)

• No horse riding (sorry Bins)

• No operating arc welders, power tool etc with the stimulator switched on.  Noooooooooo!

• No driving with the stimulator switched on.

• Avoid high g forces e.g. fair ground rides, motor car racing

• No parachute or bungee jumping

• No trampolining

• No sprinting as a sport and avoid any sprint training.

• Avoid rowing as a gym exercise or activity.

• No Zumba exercise.

• No Cricket

• Golf is OK but those with upper stimulators may find this problematic.

• Gardening: Digging is OK as long as you pace yourself.

• Dancing is a good aerobic workout but no overhead arm movements or heavy stamping- what am I to do?

• No scuba diving.

Expectations

Ain't that the truth, well the truth as I've discovered. Dastardly expectations, they'll bring you down every time. Obviously it's important to expect high standards of yourself, but I've certainly come to realise, the hard way, that you can't count on your life's plan staying on track.  The weight of crushed expectation is a an albatross for sure, if you're thinking in Ancient Mariner terms that is.. 

Gosh, for a moment there I was sounding darned preacher like, well wrap me up like an evangelical giftbox, and send me to the closest prayer tent!

In more important news, I definitely feel improved today, I think my chest infection is clearing.  Although, admittedly, I did give in and apply more patches.  But hopefully, the surgical pain will have diminished enough by next week, that I won't need to do this again.  It's raining and stormy outside, the leave whirling through the air in an autumnal maelstrom. It's nice being in bed today.

What if it's not?

The pain is really bad today.  It's hurt a lot since taking off the bandages, and I only have the smallest 5mg morphine patches left to apply. I’m in too much pain to get in the car to go to the doctor.  I have to wait until after hours so that I can call for a home visit doctor, and I’m not sure that they will get down in prescribing me opioids.

My chest infection won't go away.  It’s been five weeks. It’s making my chest hurt deeper below, and way above the flutter of the stimulator. I'm at 97% of the set parameters of my stimulator, and I'm freaking out a little bit.  I’m crying, and alone, in bed. Although, I s’pose, this is usual. I’m scared, and anxious, dare I say it, fretful.

Fretful, that this is not it.  Fretful, that this is not the answer. Fretful, that the pain is coming back, or that it’s never gone, or that it’s never going away. And that’s not something that I can contemplate.

I’m trying to maintain my lifelong façade of okay. I just can't tell Mum, she's just so, so happy that I'm ‘better’. She’s giddy with delight.  It’s her birthday. She's convinced I'm painfree, and that this is it forever. I'm scared that it's not.

In more depressing news, I discovered last night that I shall never trampoline again.  'Tis a sad day indeed.

I couldn't do it to you...

I intended for this to be an open discussion on experience of, and the recovery process from the spinal cord stimulator surgeries.  I found other people’s stories to be so helpful when I was considering whether this would

Until today.

Today was a day that dressings were changed, and I thought I’d duly grab the opportunity to capture the moment, and the scarring, for time immemorial.  

I will save ye all from the fate I have suffered.  For it seems that there is truly no end to the indignity, nor to the hardship that I must endureth. I’M HIDEOUS!!!  

Reviewing the photos, particularly of the implant scar, gave me that feeling one only feels when one has been sick in one’s mouth.

On the upside, I'm shuffling a little faster.

Instead, I bring you this delightful, and un-nauseating, picture of our doggy.  You are welcome.

28 Days without a shower and I'm haiku-ing

The water splashed

but not on me, no not me

You, you're glistening.

Disconnect in pain

I'm alone. You're all joined

No sorrow in you

Les Accoutrements

I’m feeling slightly improved today, a lightness of being, like my happier self is starting to hover above.  Perhaps this oddly floaty, alternate self, is a sign that my chest infection of month long residence is finally departing, and maybe the swelling from all of the surgeries, is just a little less swelly. 

I thought maybe I'd share the items that come with being part cyborg.  One is never quite alone while being chronically stimulated. Euuwww, does that sound rude?? hmmm.   

Of course there are all of the internal parts, the wires permanently affixed along the spine and the dastardly nerve, and the rather too large magnetic base device, in my rather too large, ahem, base. And then, there are the carry-on items. (complete photo below).  The programmer itself actually resembles an old blackberry.

It is very, very large, much larger than I expected, and you even control it old school, with a stylus.  My lovely technician has assured me that this is the prototype model, and they are currently designing a much smaller model, but for now, it’s something to laugh about.

 Even more hilarious, I actually turn it on by holding it up to the base device in my, well you might say right hip, upper buttock, or derriere, whichever way, I will never stop giggling. 

Even, even, more hilarious than that, it makes a “Bleeeeeeeeeeepp!” sound with an upward inflection at the end like it’s delighted to be stimulating with you. 

My lovely technician has set parameters having consulted with me, and if you look carefully at the picture, you can see I’m at the upper end of those parameters.  This is likely attributable to my chest infection making everything so much more painful. It’s likely that we’ll have to have another session in a week or two once I’m disease free to set new parameters.  

The techs control everything from their own stims and ipads.  The parameters they can set, and therefore the possibilities, are endless- it is just phenomenal. 
The little black square in the right corner at the back of the picture is the magnet to end all magnets, it’s why I harbour a desire to be called Magneto.  If for some reason the programmer won’t work, you can hold that magnet up to the base device, (read my butt), and it will turn the stimulation off.  

At the moment, it won’t turn the stimulation on again, but they are working on that capability too. I was forewarned I might a feel a buzzing sound, or a feeling like a jackhammer, or something like a TENS.  I feel none of those things.  Sometimes, especially if I sit up or lean forward, I feel a slight flutter in my chest, but amazingly, most of the time, I feel nothing at all. 

Love it.

Once upon a time

There was a vibrantish young lady, who held the city in the very palm of her hands. She skipped, and she danced, and she delighted through the days and nights, enjoying all of the things that an accomplished life could offer.  She was surrounded by a wide, but very close circle of friends and family who skipped and danced and delighted through the days and nights alongside the young lady.

One gloomy day, a day of endless rain, a portent of things to come, an untimely illness struck the young lady, struck so severely, that she could no longer skip, or dance, or delight through even one day, and certainly not through the nights.

The young lady cried, and cried with the pain so agonizing like she'd never known, until eventually, she was sent away, and she was examined by everyone who was thought to have been imbued with the knowledge of everything, over and over and over again.  

And the young lady cried and cried. A thousand treatments were tried, over, and over and over again. And there was no skipping, or dancing or delighting through the days, or through the nights. 

And over, and over again, this pattern repeated.  And the young lady felt alone and without hope.

But then finally, almost two long years after the young lady was so stricken, a wonderful proposition was suggested to the young lady, terrifying and exciting in its finality, a proposition that might finally lead her to once again skip and dance and delight through the days and the nights.  But for now, it's led her here, to the beginning of this blog.

Some go up, Some go down

I mistakenly thought I’d had an epiphany the other day. I was awake and aware and the world was bright. The edges were crisp. The grass was green, so green.

I was in a whirlwind of change and heightened...yes!  And I knew what I needed to do, what was going to happen, why it was meant to be.  It was going to be alright.  I'd been viewing the world through soot coloured glasses for such a long time, and as the pain withdrew its agonising grip, I saw munchkin like Technicolour, ruby slipper Technicolour, all the cliches Technicolour!  And then each time I coughed, the pain returned, visceral, raw, each time I coughed, I felt another stab, and the fear, another glimmer dashed. It’s raining grey.

A week or so...

Left foot, right foot, left foot, right foot...  When I say that in my head, I have an hilarious sample from The Family Guy running through my mind.  It works regardless though. Each day plods along pain in, pain out, oh no- no pain out, just pain, relentless, tiresome, I'm going to follow you until you're not there anymore, pain.

In light of my previous post, I asked my surgeon how long it might be until I might be able to shower, and he asked me to travel to his rooms, over an hour away, for post-surgery wound inspection.  I stood my ground like the crybaby I am, impossible.

Instead I was allowed to see a local doctor and report back. I completely forgot that I was entitled to a free home doctor visit under my most excellent health insurance policy, even though I happened to be on the phone to the health insurance company when it was time to leave for the appointment. 

So, the upshot is, it's been a bit rough for me post car trip, although it was only twenty minutes return.  The implant device is implanted in my right buttock, making for a right uncomfortable car trip, even with my lovely latex pillow along for the ride.

But I‘ll be able to shower in  a week or so.

Unkempt

I've been rather unkempt lately, given the surgery, and being forbidden from showering because of the surgery for the last three, and the next however many weeks. Yes, unkempt and morose, perhaps one leading on from the other.  Somehow, I've thought it appropriate that I exploit my unkemptness by reading poetry (apologies to all poets).  Lots of poetry.  The great anthology of great poetry. Lots of greatness. And lots poetry. I'm not entirely sure why I associate the two.  Maybe it's the poverty and/or adversity I'm sure all good poets must undergo, either willingly, or not, to maser their art.  There's also garrets.. although why I'm not sure -  they should surely be associated with artists.. but hey.. this is my imperfect mind.

In some ways it's positive, within minutes I feel learned, and special, I can spout occasional knowledgeable thoughts about writers and concepts that other people perhaps cannot.. but mostly, I feel like a wanker.

I'm living up to my name ...

It was either going to be that, or Magneto!  Magneto, sounds so superheroish, and I am rather fond of capes, be they practical, or fashionable.. but as I lay here.. nibbling the ears off a bunny and wearing a princess headband stolen from the head of my two year old niece, I think perhaps I currently lack the requisite gravitas  to pull off the aspirational Magneto.

So, to anyone interested in the SCS surgery, five days after the event I am significantly improved. Had you spoken to me just yesterday, you would have had tears for a rather unsatisfactory response, and the day before, howls of agony.

Yes, there's no whitewashing here, those doctors are tunneling right up your back with a rather thick metal skewer and then digging a grave to lay to rest your implant which will likely be at least the size of a giant matchbox.    Owwww.

The surgery itself was fine.  It was performed under a general anaesthetic, and the local anaesthetic injected into the incision sites lasted the first night... but it was all downhill from there..

It is, however, without question, most exciting that my butt is programmable AND makes a beeping noise.   Worth the additional pain and morphine? Yes, this is most satisfying.  I bid you, ein guten nacht.

The end of the beginning and the beginning of the end

When I was small I wanted to be a writer.  I thought reading was the greatest thing in the world, and if I could just be the creator behind the magic that leaped from the pages of so many of my beloved, dog eared books, well, that would just be plain incredible.

And then, I don't know what happened. I think I became too generic, or maybe too lazy, or maybe both, but lately, I've been having amazing dreams, which demand that they are in some way recorded, indirectly or otherwise.

And here I am, writing a blog ostensibly in the name of my soon to be state, due to my soon to be implanted spinal cord stimulator (SCS). Finally driven to action by illness and desperation.

I've found very few blogs on this subject, and for those I have found, I am grateful to them for sharing their stories. Their candour assisted me in determining to proceed with such a momentous decision. It's been almost two hopeless, relentlessly pain filled years since I became sick with pneumonia, which left me with the debilitating chest pain which the SCS promises to cure, and it's been two weeks since the trial surgery, which was an astounding success.

I'm overflowing with anxiety and excitedness, positivity and domesday thoughts, and I don't know how I can possible express everything or anything at all.  So, I guess, what I'll do for now, when there's just one more sleep to go, is just say to myself that I'm just going to do it one word at a time…  and come back to you on the other side….part cyborg, well you know, I just like the drama.