And the winner of the Lazybones giveaway is......

Okay, so I may make even the simple things in life a production. I could just write some names on a couple of plain pieces of paper and close my eyes and pick one, but where is the fun, or more importantly, the pizzazz, in that. 

Instead, I chose the crafty route, complete with Thor involvement. Even surgery and constant pain are no impediment to making this little draw an event. That's what Panadeine is for! Go big or go home, that's my motto. And if you can involve feathers, pretty paper, and the world's most gorgeous Great Dane, why not. 

Unplanned, I did just realise that the dress and cardigan I am wearing are also from Lazybones. Told you I love their gear. I blame my wild hair on not being able to lift my arms to brush it yet. Really you should be impressed that I am out of my pjs and have managed a shower. That's a feat and a half at this point.

Getting my craft on.

See world's most gorgeous, and patient, Great Dane in the world. His sister in the background on the other hand, is like the Loony Tunes, Tasmanian Devil and was not allowed to participate.

He may have been a bit reluctant to give up the winning entry.

Congratulations Kendall!!!

I'll be contacting you to organise your size and delivery. I hope you enjoy your lovely Lazybones pjs.

Thanks to everyone who entered the draw for the Lazybones giveaway. And thank you for supporting the blog. It's the readers and the community over on Facebook that keep me motivated to keep slogging away at the keyboard. I really appreciate all the well wishes, prayers and good luck messages that I have received both before and after my surgery. It seems that Jeri (my pacemaker) is working a treat and excluding the post-surgery malarky, I feel better than I have in months. Amazing what having your heart beat can do. 

And a big thanks to the fabulous and friendly team at Lazybones for sponsoring my blog's 4th birthday giveaway, and making sure I was the most comfortable and fashionable patient on the ward. Thank You xx

Cheers

Michelle :)

Pacemakers, capes and becoming the bionic woman, or Seven of Nine, if you talk to Mr Grumpy.

This time one week ago I was in the midst of teeth clenching and swear-mumbling. I begged for icepacks and looked aghast at the fact my cardiac surgeon left for the day thinking that a couple of panadol would do the trick for post-op pain. Ah, good times. But that was a week ago. And today it seems a lifetime ago.

(Jeri Ryan as Seven of Nine, source)

I am now the proud owner of a pacemaker, or Jeri as I like to call her. You see, Mr Grumpy has always had a thing for Star Trek Voyager's Seven of Nine, played by gorgeous Jeri Ryan.

And because I love him and really this is as close to his dream as he is ever going to get, my pacemaker will forever be known as Jeri. I do refuse to wear the skin tight body suit though. Unlike Jeri Ryan, I am less hot hourglass and more icypole stick/stick insect. No one needs to see that. But I do have my first Borg implant, it's apparently of the cutting-edge medical type, so lets just go with it.

To say I was a little nervous pre-implant is a bit of an understatement. No matter what you read or hear (and a huge thank you to everyone who were kind enough to share their experience, it's so good to hear from other Dysautonomia patients who have been there and done that) the idea of someone cutting into your chest and screwing wires in your heart is a little concerning.

I cleaned and crafted. At odd hours and in my pjs. I even tried to be as fit as possible pre-surgery. Though needing Mr Grumpy to carry me up the stairs at home after a 5 minute walk sort of put paid to that. I had a couple of okay days and started to doubt my need for surgery. Of course that was followed by a few days feeling like I was going to die, so you know I kinda thought maybe, just maybe, my cardio was right after all.

Why yes I did have to finally start that craft project that's been sitting around for months, 

9pm, in my pjs, two nights before my surgery. 

(Always pack things that make you happy. 

Like Dorothy slippers, a cape, a spoon dress and nice pjs etc)

Thankfully Mr Grumpy held my hand and managed my anxiety as he always does. We stayed in the city the night before, about 5 minutes from the hospital to avoid the shamozzle that is peak hour traffic. Not that either of us slept, but we went through the motions, tossed and turned all night and were woken up by the tradie truck beeping it's way back into the small driveway next to where we stayed.

I don't often name the hospitals I go to, but this time I have to give a shout out to The Epworth here in Melbourne. Great staff from the admissions lady to the porters and the medical staff. Nothing was too much trouble. Everyone was friendly. They even made me delicious meals from scratch to account for my food intolerances and allergies. I can't stress enough how much of a difference it makes to the whole experience. Last year's admission to another hospital in the city was a disaster from go to woe. Surgery stress aside this was the best hospital experience I have had by far.

(Waiting sucks)

The pre-op nurses were amazing. Even scored me a private room! Mind you once more I was odd woman out. There were a bunch of 50+ year-old men, a 94-year-old woman, and me. I don't think I am their normal pacemaker demographic. For once the staff had read, and more importantly believed, that I had medical adhesive allergies, so they tried their best to avoid the worst of them such as the tegaderm and steristrips. In the photo below you can see they even used a sock over my cannula rather than tape which was a godsend. What I particularly loved was that the staff and the surgeon were happy for me to keep on my red Juzo Soft's for the surgery rather than the hideous white TED stockings you are usually forced to wear. I believe I may be the first patient they'd had with bright red legs on their operating table!

(Go red compression stockings)

The surgeon came in pre-op and went through the surgery, what to expect, what not to expect, all the risks etc. He even openly gave his infection and complication stats, all super low thankfully. Now that's a first. I had some IV antibiotics pre-op which I will say was a relief after the nightmare of last year's post-op infections. So far so good, my GP checked the wound on Monday and no signs of infection.

In the OR things did go a bit pear-shaped as my body's reluctance to process either sedation or local anaesthetic has become worse (wish I knew that beforehand). Whilst the procedure itself went well, I have way too many memories of pain and hearing the surgeon say "give her 5 more". I may have dropped a number of F-bombs in that OR. He did come in the next day and apologise. Apparently I was given a ridiculous amount of anaesthetic and sedation, but it just didn't work. At least now I have an official letter stating that I am only ever to have general anaesthetics from now on. After battling to get other doctors to believe me, it is a relief to have it finally acknowledged and documented. Now if only I didn't have to feel the pain during the surgery that would have been nice.

Now, because many have asked, down to the nitty-gritty.

I ended up with the latest Medtronic Advisa MRI SureScan Pacemaker, which is MRI compatible (not for the first 6 weeks post-surg, though). Helps to have a surgeon who is researching their efficacy. Given the high likelihood that I will need further MRIs that is a bit of a relief. It's set to kick in when I drop under 60bpm at the moment, though my regular cardio did say it'll likely go up to 70 long-term. Thanks to the weight I've lost he had to cut a pocket in my chest under the muscle for the device, whereas most go under the skin. So the pacemaker sits in that pocket, which I can see and feel, and then two wires were threaded through a vein and into my heart where they were screwed into the internal heart muscle wall. Just a heads up for anyone who has this done: Under muscle is more painful and takes longer to heal and settle. The scar is pretty small compared to what I was first told. About 2 inches long and about two inches below my left collar bone.

It's strange how many people who think I would be worried about the scar or that the pacemaker will be visible. That is the least of my concerns. In fact, I couldn't give a crap about scars or visibility. Now, my heart stopping? That I was concerned about. Aesthetics doesn't even rate in that context.

I was unable to move for the next 4 hours and had continual heart and bp monitoring during that period. The nurse wrote 6:45pm up on my board and said I could get up to pee at that point. That may have been the longest 4hrs of my life. Urinary frequency and a bag of fluids during the procedure meant that I was using every Kegal exercise and prayer I had ever heard of to hold on. Their was the bed pan option but having had that indignity before I was determined to hold out. Amazingly I made it, and even more surprisingly I managed to walk from the bed to the loo without help. Go pacemaker. Go!

Pain was not my friend that first night. Not just my chest but, left shoulder and arm, as well. All that was on offer was a couple of Panadol and an icepack. Not sufficient by any measure. About 4am it was tears in the eyes level of pain, and it takes a lot to get there these days. The nurse did take pity on me and get me a couple of Panadine, but really I might as well had a sugar tablet it was that useless.

I had a holter-monitor on till the next morning to monitor how it was working. And the pacemaker was checked the next morning to make sure it was working. This consisted of simply placing, what looked like a large computer mouse over the area for about 5 minutes. A chest x-ray to ensure all was in place and a visit from the surgeon and I was finally allowed to leave.

And now Jeri and I are home and getting used to each other.

Many macarons have been eaten (thanks Julia) and many movies have been watched. Prometheus, disappointing. The Hobbit, much better than I expected. Zombieland, still cracks me up. My bestie came by with CDs and meals (thanks Kerri) and made me laugh.

Pain is still an issue but somewhat reduced. I can feel Jeri kicking in all the time, it's weird and kind of hard to explain. A weird fluttering/hiccup is the best I can do. All I know is that I am now even more aware of the drops, so I realise how much I do need her.

Do I feel better? That's a hard one. I think I will know more when the pain subsides. But I will say that I feel clearer mentally than I have in months. Funny how adequate blood flow can help like that.

I managed a slow 5 minutes on my mini-cycle tonight. My heart rate dropped repeatedly but Jeri kicked in and I didn't have that horrible crash I am so used to. My legs hurt but I'm calling it a win at this stage. I did manage to do some crafting today, though I am paying for that now painwise. But still it felt good to do something.

(Woo hoo crafting denial for the win, even with the post craft pain hike.)

Not being able to use my left arm sucks. Showering in particular is not fun. Mr Grumpy washed my hair for me the other day. Lets just say it involved more shampoo in my eyes and me spluttering than the romance I remembered from Out of Africa. Not being able to do washing or vacuming whilst good, is frustrating as I have to keep asking for things to be done. I need pjs people, and underwear. Maybe if I streak through the house they'll get the message.

Oh and for all those on FB who wan't me to wear my cape in hospital (thanks Kate), I did. Just for you. I may have been in pain and little over it all, but I made it through. And that my friends, is cape worthy.

Cheers
Michelle and Jeri :)

PS don't forget to enter the Lazybones pj giveaway for my 4th Blog birthday. It closes tomorrow.

Blog Birthday Bonanza.

Today is my blogging birthday. 4 years! Who'd a thunk it? What started as me venting a lot of frustration and clawing back my sense of self, lengthy rambling post after length rambling post, has turned into so much more. Where I was when I began and where I am now, are two very different places. 

Back in 2009 I was rather lost. It's strange looking back now at how emotionally strained things were then. Sudden and serious illness has a way of hitting you for six. It leaves you reeling, and if you're lucky holding on by the skin of your teeth. The physical symptoms are bad enough. Chest pain that leaves you gasping in pain or collapsing tends to send your fear levels skyrocketing. But the changes to your sense of self and your relationships, and issues regarding loss and grief, can be rather hard to deal with. 

These days I am in a much better frame of mind. I have ups and downs but am better equipped to deal with them. I know I've faced a lot of bad health times and come out the other side. That knowledge makes it easier to cope when I'm stuck in that periodic quagmire of pain and fear, as my symptoms escalate. Strange to think that as my health has deteriorated my ability to cope with that fact has increased exponentially. 

What started as my personal venting has become a community, a place of shared experience and support. Advocacy and awareness have emerged and the blog has become a place to give voice to the patient experience not just for myself but for many. And I love the community that has sprung up here and on Facebook. 

And to say thank you to you, my fabulous readers, 

I want to celebrate my 4th blogging birthday 

with a GIVEAWAY. 

As I've mentioned many times, I like pampering. I think it is particularly important when you are chronically ill. We are in and out of hospital. Stuck in bed or on the couch, often for long periods of time. Times like that you need to make your world, as limited as it may be, as comfortable and lovely as you can. 

Anyone who has followed me on FB for any length of time knows I love Lazybones clothes and own more than a few of their pieces. I love the mix of vintage and feminine style. I love their dresses, but am particularly enamoured with their fabulous Relax range which I wear all the time. Practical, comfy, and pretty are a good mix. And, more importantly, can make you feel better even on your worst days.

And thanks to the lovely folk at Lazybones, one lucky reader has the chance to win two of their pieces. 

Up for grabs are two items from their Relax range, shown below.

(Rosita Top in Amalfi)
100% cotton voile, I love the loose fall of the Rosita top. So light and comfortable.

(Kate pants in Cream)
I love the detail on the bottom of the Kate pants. They are 100% cotton and light and flowing. 

How to Enter:

COMPETITION IS NOW CLOSED

The competition opens as of, 9am Friday the 19th July 2013 (Australian Eastern Standard Time).

To enter simply leave a comment at the bottom of the post sharing your favourite way to pamper yourself along with an email address so I can contact you should you win.

The giveaway will close 5pm Friday the 26th July 2013, (Australian Eastern Standard Time) using the Thor Method. With the winner announced Monday the 29th. 

The lovely folk at Lazybones were also kind enough to send me a pair of their soft and light Frankie pjs in Enna just in time for my surgery. If I have to be stuck in hospital I can now at least do it in style.

Thanks Lazybones!

Cheers
Michelle :)

Angus and Julia Stone, Mango Tree (2009)

I want.

(Tree of Hope, Frida Kahlo 1946)

I want someone to come and massage away all the aches and pains. To release the toxins, of both body and spirit.

I want to feel my blood flow and the warmth suffuse my limbs. To feel that moment of release when a rock hard knot of muscle finally releases. When the burdens of the word are lifted.

I want to smell the oils. The lavender and sandalwood. The lemongrass and rosemary. The melange of fragrance, that infuses the air. The smell that weaves its way through your body from that first intake of breath. Permeating and cleansing every pore as it works it's way through the body.

I want candles. Soft warm light. A counterpoint to the harsh light of the world.

I want white noise. To shut out the whirring in my mind.

I want soft towels and warm air.

I want to feel the stress and the pain leave my body.

I want my strained nerves to stand down.

As the world is massaged away stroke by stroke.

I want to feel that inner hum where everything is balanced as it should be.

I want the world to leave. Just for a while.

I don't want to hurt.

I don't want to feel exhausted.

Mentally and physically.

Day after day after day.

I want to feel renewed, if even for an hour or two.

I want to lie quietly and absorb the moment.

I want to forget my body.

I want to forget the burden of keeping it all together. All the time.

I want to exist as another me.

The me that just is.

I want that me.

If only so I can remember that it exists.

That there was a moment.

When it didn't hurt and I wasn't broken. When I felt whole and at peace.

That my body could hum and not scream.

That I could just be.

I want that.

I need that.

Michelle

Home

You are my Home.

I know that now. But I don't know if I truly knew that back when we said our I do's.

I had an idea. An idea created before I stepped into the world. An idea created before time and challenge could teach me what truly matters.

Only on reflection can I realise that what I thought was important back then, missed the mark. My heart was in the right place, it was just young and naive, kinda like the two of us. Not that I didn't love you, I most definitely did, but just that I didn't really know what that meant.

Time has never changed my feelings but it has reworked them. Moulding, reshaping, and kneading. It's pulled apart the pieces and reassembled them over and over. Distilling the original brew, until the true essence was finally found.

My home.

The place I feel safe. The place I feel loved. The place I feel comfortable. And the place where I don't have to hide.

You're there when I need you. Through the good and the bad. And no matter how rough it gets, if you're with me, it is always easier to bear.

You accept me, baggage and all. Pile upon pile of disappointments and hurts. Walls built to protect and to hide. But slowly you've unpacked them or put them in their place.


I know I'm not easy to live with. I can be opinionated and at times, unreasonable. My temper, well that may best be described as fiery. And I am stubborn to a fault. I expect you to read my mind and my moods like a fortune-teller, and get angry when you don't. I am more than a little left of centre and live in a world of my own half the time. And I know I frustrate you. Yet despite it all, you are here. Yet despite it all you still love me.

I owe you. More than I can ever express. The last seven years have been hard, not just for me, but for you. Life threw us a curveball and we had to learn to deal with it on the run.

There have been far more downs than ups. But in many ways, it is easier now. What could have broken, has instead strengthened. Things are more stable, even though the circumstances have become rockier.

After so long together there is a rhythm that is just ours. An unspoken language, knowing looks, the finishing of each others sentences, and laughing at shared jokes. All born by times passage and experiences shared.

You are both best friend and lover. Champion and partner in crime.

You reign in my frantic nature, whilst supporting me in all I want to do.

You know me better than anyone and for some baffling reason still, want to be with me.

I don't say thank you enough for all you have given. But I'm grateful every day that you are here.

So

Thank you for letting me know that it's okay to be me.

Thank you for being there to wipe my tears or hold me tight.

Thank you for making me laugh when I can least find something to laugh about.

Thank you for letting me know what it's like to truly feel loved and supported.

Thank you for two beautiful sons.

Thank you for letting me know family.

And thank you for letting me know the true meaning of the word home.

Because you are, and will always be, my home.

Happy 20th Wedding Anniversary, Mr Grumpy.

I Love You

Michelle xx

I loved The Cure's original version of this back in the day, but really love this cover by Adele.

Making life bearable.

*This is not a sponsored post. The items I'm mentioning are simply ones I already own and love and will hopefully give some inspiration to others to make their environments a little more cheery.*

Since my health has deteriorated again I have found myself focusing on making my environment a place of pleasure and happiness. I figure that I can't change what is going on at the moment (although hopefully the pacemaker will improve things somewhat) but I can change the four walls that surround me.

This is nothing new. I've never understood why practical items can't be beautiful, or why they can't reflect what makes me happy. As I've mentioned before, the batcave is a rather depressing monochromatic salmon/apricot 80's extravaganza. Now we are moving I'm not inclined to change that, but I can add a splash of colour or pattern in the form of soft furnishings or decorations, to make me happy.

Similarly, my couch time can be improved by items that provide a little luxury whilst I'm grey and feeling like death warmed up on a daily basis. Comfort and beauty go a long way in making you feel better physically and emotionally.

Most of what I have has been purchased on sale (red Sale signs are what Mr Grumpy terms Come-In-Michelle signs), at $2 shops, were gifts, hand me downs, or have been re-purposed and re-used from their original purpose. I am not above picking things off the kerb during Hard Waste, or Second Christmas as I like to think of it, and finding them a place in my home.

Luxury and beauty don't have to be expensive but it does need to be purposeful, and meaningful for you. Whilst I love vintage style, colour and pattern, you may be into sleek modern. Finding what works for you is key. When you are stuck unable to get off the couch being able to look at things that make you happy takes on new levels of importance.

Here are a few of my bits and pieces.

Loungeroom:

The pillow. I spend A LOT of time on my couch. When we purchased our new couch, (the last one was destroyed by Thor and Freyja, Great Danes and cheap 15-year-old couches simply don't mix) we picked one with a chaise just for me. It now has a lovely print of my bum and soft soft leather. But to add to my comfort I now have a gorgeous velvet vintage print pillow to snuggle with from Ishka. I love snuggling with it on the couch and it makes me happy each time I see it.

The blanket. My temperature control is completely gone now. I vary between 35-38C throughout the day, no rhyme or reason to the changes. With my frequent drops into bradycardia I am finding myself ice cold on a more regular basis. I have a blanket that I keep on the couch. It's an oldie. I purchased it back when I was working so 7-8 years ago and I still love it. I'd tell you the brand but the tag is so faded I can't read it. But suffice to say, I love to snuggle with it on the couch, or in the car, or out in the garden, or pretty much anywhere.

Pictures and prints. I finally made Mr Grumpy put up my pictures and prints in the loungeroom. Most are gifts but others include things like the first painting I attempted after becoming ill. It represents a break through. A "screw you, Bob", moment. And each time I look at it I think "I did that". That sense of achievement is priceless. I have a mirror I revamped. Pictures from bric-a-brac stores and photos. All are moments that make me happy.

(Each piece has memories. From the left. Angelic Houtcamp print gift for my 40th birthday, Beautiful painting by a local artist from my best friend for my 40th, mirror I found on the side of the road and did up, painting from a local vintage store, conical hat that I bought and wore when we travelled in Vietnam, small 40's print that I found under our house when cleaning it out.)

Clothes. For a long time I moped around in my pjs and old trackie dacks. I didn't realise but they were an extension of how I was feeling about myself and my life at the time. It wasn't until I went shopping with Lady Melbourne that I moved into the idea of pj alternatives. On that shopping trip I purchased clothes that were both beautiful and comfortable. I've since continued that theme. Not to say that I don't still do the pj and trackie dack thing. Sometimes energy is so minimal that a pj day is in order. But I do now try to get dressed each day. I've mentioned Lazybones before and I love their clothing. Their vintage inspired dresses are gorgeous, but it's their Relax range that I wear most days. So comfortable and pretty, the perfect combo. With most of us on a budget I can say their sales are fantastic and that is how I have purchased most of my items. I wear them at home and when I go to hospital. There is something empowering about wearing pretty clothes whilst you have a tube hanging out of your arm. I say this as the woman who wore bright red compression hose and sparkly silver shoes to my first IV session, much to the amusement of the nursing staff. My health can be depressing enough, might as well look fabulous whilst I'm sick.

(Dress and cardigan from Lazybones, so comfortable. Plus added Thor photo bomb. 

Teeth gritting and chest pains post-standing, are one bonus I could do without.)

(Who says you can't sparkle in hospital?)

Mug. I drink two double espressos every morning to try and bring my heart rate up and also because I love coffee. I decided to buy myself a The Walking Dead mug for my 40th, because, well, I could. It's silly and stupid but makes me happy every time I drink from it and that's what counts. It's also on sale on Cafepress at the moment for under $12, brilliant! I also have a gorgeous and delicate, floral tea cup that my eldest gave me for a birthday which I use for my evening cup of relaxing tea.

(Who doesn't need a Daryl inspired mug?)

Scents. Certain scents bring back memories. I burn incense most days. I have one particular brand, Nag Champa which I love. It reminds me of our travels throughout Asia and is very relaxing and is cheap as chips at our local $2 store. In Summer, I burn an oil which is a mix of things like cloves and cinnamon and simply smells like Christmas. In both cases the smells invoke good memories and happy times, so important when you are clasping your chest dramatically on the lounge.

Bedroom.

The water bottle. Given I am mostly home I also need a water container for beside my bed or in the lounge. I have two glass holders. One is a bright red bottle I purchased at a $2 shop years ago. The other, which sits beside my bed is a cranberry cut glass carafe and matching glass. I remember buying it at a gift shop years ago but I couldn't tell you which one. I love it for the vintage feel and little bit of luxury.

(Bad photo, much redder in real life.)

Dust gatherers. This is what Mr Grumpy calls my bits and pieces that have made their way to my bedside table. Most are gifts or little bits and pieces that simply make me smile. I have red glittery robins attached to my lamp (they are also on the re-purposed metal garden door at the top of our stairs), A small vintage silver clock, a gift from Mr Grumpy on one of his overseas trips. A vintage deep green bakelite bracelet again from Mr Grumpy. A Bohemian crystal specimen vase has a posy of tiny drink umbrellas. An old green Depression glass butter container holds my chocolate stash. The list goes on. There are more practical items such as puke bags and pill boxes, but they fade into the background when I look at my other bits and pieces. I can also see into my en suite from my bed, so I try to put flowers in there so I have a spot of colour and life to look at.

(Lindt dark chocolate with a hint of Sea Salt of course)

(One vase is an old maple syrup bottle, the other is a ruby glass specimen vase I bought at a trash and treasure market as a kid. The flowers are from my garden.)

(I also love reading so I use an old pot holder that belonged to my grandparents, 

as a book shelf next to my bed.)

(Everyone needs a leopard print eye mask)

Bathroom.

Bubble bath and soap. This is the one time I splurge. I love my L'Occitane Lavender bubble bath and it lasts for months. My body aches 24/7 these days and soak in a warm bath is just the trick. Our bathroom is in renovation purgatory. I don't look up for fear of spying something with 8 legs poking it's head through where the cornice should be. But I can make the bath itself enjoyable. I also bought a lovely musk triple-milled soap from Sohum which again lasts for months. I keep it on a flowery vintage plate from a set that I scored at a local bric-a-brac store for $2. Add in my candles (from my trusty $2 shop) in old glass jars and it's pampering that's good for the soul.

Body creams. My love for MOR Cosmetics is well known and I continue to feed my addiction. Again it's the luxury aspect. My skin is very dry thanks to the medications I take so I need good quality moisturising. Even the packaging is beautiful and on the days I don't have the energy to rub in cream I have the Marshmallow perfume to pop on so I can at least get the fragrance. The creams and other products are in my bathroom and on my bedside table.

Travel.

The travel drink bottle. This is a recent purchase and again from Ishka. I love Frida Kahlo, her attitude and her art work. If you haven't seen Frida, staring Salma Hayek, do yourself a favour and rent it now. As soon as I saw the drink bottle I had to have it.  One of those impulse buys that makes me happy. Given how much water we have to drink, I am always carrying drink bottles or have plastic bottles deposited all over the house and car. Now I have a travel one that looks good and is also practical.

These are just a few of the things I decorate my life with. I have colour, texture, and pattern, all that makes me happy, and feel pampered. I may not be able to get out much these days, but I make my small world as luxurious and enjoyable as I can. Hopefully you can too.

Cheers
Michelle :)

Treat me right.

(source)

I have made a deliberate effort here on the blog and on Facebook to point out the great medical professionals I encounter. Too often our interactions with the medical profession, the system and assorted allied health, are negative. We need to be reminded that there is a lot of good out there, although it may seem hard to find at times. As a long term chronic illness patient I am a frequent medical consumer. And more interaction equals more chances for some truly appalling encounters, but I am also lucky enough to have found some great practitioners to be part of my team. My cardiologist, neurologist, GP, physiotherapist and OT, and even my local phlebotomist, are all practitioners with whom I have formed good relationships. I feel heard and that my voice, and my experience, is valued. That I am both person and patient and not just a body part, disorder, or patient 34 for the day. It is important to recognise these good relationships and encounters, and even more important to talk about them.

I am also open about the bad encounters. Be it poor professional knowledge, outright hostility and disdain, or complete lack of bedside manner, I've discussed it. But today I was faced with an instance where I wasn't sure I could post about my experience. I am stuck in a place where the balance of power isn't equal. I don't have a choice of walking away and going elsewhere. I am stuck in a position where I feel like I have to hold my tongue, where I would normally say my piece and move on. I am in a place of vulnerability. A place that many patients find themselves in. And it's making me angry.

I don't name practitioners or clinics. That is a decision I made early on. The reality is that one patient's godsend is another patient's arsehole. I don't want to put another patient off from seeing a specialist who may hold the solution for them, simply because my experience was negative. But the reality is that it doesn't matter the speciality or locality. This same situation is played out in clinics and hospitals across the world.

Patients are forced to stay in situations that are sub-optimal. Situations that don't facilitate their diagnosis, treatment, or care. Whether we are constrained by the obscure nature of our disorder, or our geographical location, we are forced to remain in situations due to a lack of choice. The medical profession are the keeper of the keys, and we must beg for admittance to the knowledge we need, and hope that we will be granted access. We have to put up with rudeness, exorbitant fees, huge waiting lists, poor communication, the list goes on and on. An already difficult situation is made far worse by the forces that surround our disorder and medical needs. Forces over which we have little control. When in truth, the disorder should be our major obstacle.

We are forced to swallow our complaints, and silence our voices, to get the care we desperately need.

Do I complain now and risk being told not to come back?
Do I complain now and wait another year to get into a different clinic for the test that I've already been trying to organise since May 2012?
Do I complain now and be forced from a free, bulk-billed list, to a non-refundable $500 private clinic? To find money I don't have?

These are the questions that I and many other patients are forced to face. I pride myself on being an empowered patient, and yet, today I found myself biting my tongue and putting up with substandard service because I need a test I am unable to access anywhere else. For the first time in a long time I felt powerless. And I hated it.

I left exhausted not just from the physical toll that comes simply from the logistics of attending such appointments, but from the emotional toll of playing the game. From knowing I had to balance my need for care against the need to assert my rights, and in this case my need for care won. It is disheartening to know that in this instance I couldn't be the patient I want to be.

I don't believe that the clinic is run by Dr Evil, intent on deliberately making my experience, and the experience of my obviously unhappy fellow patients in the waiting room, so poor and damaging. But there is a definite disconnect between the clinic and the patients they serve. And that disconnect is apparent in the poor coordination, administration, scheduling, interpersonal skills, and general communication. And that disconnect has left me stressed, frustrated, tired and angry.

It is far too easy to become disillusioned with the system and those who practice within it. To borrow a phrase from Dr Phil (I know, I know. I'm embarrassed for myself) "....it takes 1,000 "Atta boys" to overcome one, "You're worthless and no good...." The same is true for our experiences in the medical system. The negative is like a flashing neon light that colours all our other experiences. With each negative experience taking a large bite out of our belief in the good. Be it the overt experiences such as the doctor who told me "when a woman your age walks in with those symptoms it's always in her head", or the more subtle experiences where doctors don't listen, or act like you are nothing but an annoying interruption to their day. Or others like today's tactless experience:

Dr Blunt: what did you do pre-sick?
Me: Neuropsychologist.
Dr Blunt: must suck to really know what's ahead for you?

Each of these experiences make it harder to keep faith in the inherent good that exists within the system.

Power shifts and turns in our ongoing experiences in the medical system. The older position of the doctor being the keeper of knowledge and exclusive director of our care is waning and, thankfully, I have noticed a discernible change over the last 10 years. Patients and doctors benefit when interactions are seen more in a with mind set, rather than the traditional at. Respect is two-way. We the patients have the responsibility to respect a doctor's knowledge and training. But in turn our doctor's need to respect that we as patient's are the expert in our own functioning, and often our own obscure disorder. At our most basic, most patient's just want to know that they have been heard and seen. That in that one consult, they matter.

But it is not just the one-on-one experiences that are important. It is also the associated experiences that surround a medical appointment. Service provision begins when the referral is first sent. It continues with the creation of appointments, the returning of phone calls, the interaction at the clinic desk, all the way to the sending of reports and the reporting of test findings to patients. Hostile or disorganised administration makes the experience so much harder to deal with, especially when your reserves are already stretched. Finding out that after waiting 7 months since the last scheduling balls up mistake, that the test you were expecting to have today is still not scheduled. That you have to answer the same questions yet again, and wait yet another month, before testing, due to continuing administration mistakes, only adds to the overall stress that already exists. To know that complaint could further impact on your access to that test is both frustrating and wrong. So for now I suck it up, grit my teeth and focus on the goal. After which, letters shall be written.

We should have a reasonable expectation that we can respectfully say when we are not happy, without fear of repercussion. And we should not have to put up with substandard service because we are desperate for care.

I am choosing to see today's ongoing issues with this particular clinic as the exception rather than the rule. I am choosing not to let it colour the good that I have encountered.

But it's damn hard some days.

Michelle

Dear Doctor

You tell 'em Pat!

So there's this thing called a Pacemaker, and apparently I need one.

(Gotta love the 70's source)

When I was a little kid I used to love watching The Bionic Woman. Jaime Sommers was beautiful, kickarse, and had a great wardrobe. Plus, she got to hang out with The Six Million Dollar Man. What more could you want? Plus, headlines like the ones above, "an army of "Fembots!" ", who wouldn't want to watch a show with such a catchy tag line?

Well it seems I am going to become The Bionic Woman myself, well apart from the whole tennis pro, school teacher, skydiving, secret agent thing. But that's just details. I do hope I get theme music, though.

My dicky ticker is indeed very dicky, or just a dick. I mean, I knew to certain extent. My bradycardia has been getting steadily worse. This past year it has become more frequent and my health has been in a nice neat downward spiral for some time. Equally, my coping skills have been slowly slipping as my body decided to up the ante and become a complete arsehole. And not surprisingly, maintaining a Stepford persona is hard when you are clutching your chest on the floor wondering for the first time if you're actually going to die. 

A strange thing occurs when you are chronically ill with a weird unpredictable illness. You start to hope for positive findings. Not positive as in sunshine, lollipops and rainbow farting unicorns, but positive as in, please find something concrete wrong with me. So often with this disorder you go in for testing and it's a "good" day so the tests come back clear. Symptoms fluctuate day-to-day so trying to catch them in a one off, short test can be difficult. So part of me wondered if the tests my doctor ordered would show anything. Even my cardio said, Murphy's Law says that it will a good day and come up clear. 

But this time I had the clear results I hoped for, and I'm equal parts glad and terrified. My 24hr holter monitor showed clear bradycardia. Not an hour went past without my heart rate dropping to dangerous levels. 80+ times over the 24 hr period. No wonder I've been feeling like death. 

It's also the first time in the 7 years I've seen my cardio, that she was 100% sure about my options. Pacemaker, pacemaker or pacemaker. I do have high risk factors for the procedure due to other issues (because I'm lucky like that), but it's either have the procedure or risk my heart stopping. So really it's a Clayton's choice, the choice you have when you don't have a choice.

In reality I know that getting it done is the right choice. Avoiding things like a hypoxic stroke, or heart attack, and getting blood to my starved organs is all good. Getting rid of this permanent chest and neck pain and feeling my body randomly shutting down are also a positive. But, ARGHHHHHHHHHHHHHHHHHH.....

At this point it's looks like by early July I will be, The Bionic Woman. Mr Grumpy is already calling me Jaime, because sarcasm and humour with a good dose of denial is the only way to go with these things. 

To say I'm a little freaked right now, may be an understatement. I decided last night that I would meditate the crap out of my stress, only to find that my fantastic meditation skills lower my damn heart rate even further. Well played, Universe. Well played.

So make me laugh Internet. Distract me with bright shiny objects and inappropriate humour. Because right now I'm feeling a little vulnerable and scared.

Michelle