Monday 29 July 2013

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

Michelle :)

Thursday 25 July 2013

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 Ninesource)

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'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.

Michelle and Jeri :)

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

Friday 19 July 2013

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:


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!

Michelle :)

Angus and Julia Stone, Mango Tree (2009)

Friday 5 July 2013

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.