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.

Some days you can either cry into your pillow, or you can be Batman.

Okay so maybe I'm not coping so well with all these health shenanigans. I'm a week out of hospital now and still a mess.

Those who followed on FB will know my week of hospital testing was not the smoothest of runs. Rather than bore you with it all, here's a quick synopsis.

• I left 3kgs lighter thanks to food services who couldn't cope with my dietary intolerance and allergy issues. Fasting each day for a repeatedly cancelled MRI didn't help matters along either.
• When I finally went for my MRI I discovered that medazelam doesn't work on me. Survived thanks to many tears and "So Humming" the hell out of my meditation techniques. 
• A post-op heart attack scare which led to an unplanned night with my roomie Lois, who thought an Islander christening was going on behind the curtain next to her bed. All. Night. Long. 
• Another discovery that despite a bright red hospital wristband and personally speaking to the neurosurgeon, anaesthetist and head nurse during pre-op, you still wake up covered in bright red welts from the adhesives you told them you were allergic to, but they used anyway. 
• And then there's that bucket load of pain thanks to three large incisions in my leg and belly.

Now one week later I am stuck in bed with an infected ankle (sural nerve biopsy) incision, widespread numbness (expected) and spots of near permanent electric shocks (not so expected, or fun). My thigh (open muscle biopsy) still black, with new and exciting levels of bruising coming out. tearing of the wound when I move, plus electric shocks radiating from the site (again, this does not fall high on the fun metre). And a stomach (fat biopsy) incision that, like the other two, refuses to heal.

To add insult to injury I missed my son's 18th birthday dinner last night so now I feel like a super shit mum to boot. A tear or two may have been shed into my pillow last night.

Of course I am dealing with all this in the most mature way.

Conversation with youngest son today:

Me: I'm staying in the Batcave today, Bud.
Son: Why don't you put on [other son's] Batman costume and we can take pictures?
Me: Why not?

And the result?

Some days you can either cry into your pillow, or you can be Batman.

Today, "I'm Batman".

Cheers
Michelle :)

PS I'd like to say it's Alfred's day off, but really my bedroom hasn't been cleaned in a long time.
PPS I have discovered that having a bedroom where every wall, ceiling, carpet and fixtures are 80's salmon pink is not really conducive to healing or my mental health. If I start writing REDRUM all over the blog, blame the salmon colour scheme. The 80's really do have a lot to answer for.

Lodestar

Just a quick post to say I'm home from hospital finally. It's been a long week and whilst I'll blog a bit more about it all, suffice to say for now, I'm beyond exhausted and in a fair bit of pain. Hopefully it'll slowly blow over but till them a huge thanks to everyone for their well wishes, prayers, finger crossing and the works. It definitely helps to know that there are so many wonderful and caring people supporting me through it all. The beauty of social media that means there is a support network at your finger tips to commiserate, bump you up or make you laugh when you need it most, cannot be underestimated. So I'll be keeping an eye on my own little lodestar, whilst I try to get on board with this whole recovery process.

Till then, may you all have a symptom minimal day filled with love and laughter.
Michelle xx

And just because it made my geekness smile I leave you with this (Thanks Claire :) ).

"What doesn't kill you, makes you stronger" and other BS sayings.

When I first became ill my doctors tried to comfort me/fob me off/make me feel whingy, with the "it wont kill you" line. And so far they are correct. I'm still not pushing up daisies, although some days I do feel like I should. I may look like death. I may even feel like a warmed up version of death on what is now a fairly regular basis. But I'm still here, kicking on, or crawling on, or lying elegantly on my bathroom tiles still breathing if not moving. Whatever the truth may be.

I realised today that unlike the ridiculous saying in the title of this post, I don't always feel stronger for all this crap. By rights I should be the Arnie of the illness world by this stage. But apart from a really bad attempt at "I'll be back", I am feeling a little on the lacklustre side of the ledger.

Monday I go into hospital for the week to try once and for all to sort out what the hell is wrong with this old body of mine. It's going to be a hell of a week. I made the mistake of reading over the neuro registrar's letter that lists all the things I need to be tested for and all the painful ways they are going to do just that. And frankly a little piece of my mind whimpered a pathetic "mummy", whilst it rocked in the corner.

I've known for a while that something less savoury is going on with my body. But compartmentalisation and denial have been wonderful bedfellows and I've been reluctant to kick them out. Now I am faced with having to take it all seriously. By the end of next week I could have an answer. Or not. I don't know which is worse. If I get an answer it means something rather nasty is happening to my body. Something that may or mostly likely, may not have a solution. Or even better may have a solution that I am no longer well enough to attempt. Both my neuro and the neuro registrar were very clear on that, again and again. No room for false hopes.

Or I can be poked and prodded, scanned and zapped, for a week and come out none the wiser. Stuck in the holding pattern yet again, with only a few extra nifty scars to show for my efforts. Which is worse? Knowledge or no knowledge? I'm not sure at this point. Though it would be nice to have a proper name for this damn shadow that follows me everywhere. It'd be nice to know what I'm up for, even if it's not that great. It'd be nice to have certainty once more, because I sure as hell have missed that over the last six years.

Because despite all the assurances that "it wont kill me" or I'll get some fricken' life changing epiphany from the last six years of my life, it doesn't make it any easier. I'm tried of being sick 24/7. I'm not all smiley, perky, moonbeams and sunshine. I'm not the brave sickie valiantly fighting the good fight and worthy of a Hallmark movie of the week. I'm just me, and I'm tired. I'm bitter, and I'm pissy. I want to say a big FU to the universe. Just for once I want an answer. Just for once I'd like to get it without pain and fear. Just for once I'd like to feel well. Because I really don't know what that is any more.

I don't want empty platitudes. I don't want someone to tell me it'll all be okay. Because it may not. Because that's not reality. Because none of those sayings mean a thing when I can't stand or stop the pain shooting down my legs, or am throwing up in yet another public loo. I want someone somewhere just to say "I hear you". To acknowledge that yes, this is shit. That no one should have to deal with this. And that it's okay to say just that.

I know people don't know what to say. That they mean well. But every time someone trots out those perky sayings, they might as well just tie a gag around my mouth. Because each one tells me to be silent. To not raise my voice. To stuff down my feelings. To not rock the boat. And most importantly, don't make others uncomfortable by my suffering.

I have fears. They whisper in my ear at night. Fear that I'll get an answer. Fear that I wont. Fear that the damn tests themselves could leave me with further pain. Fear that if I share these fears that I make them real. Fears that live alongside all my positive affirmations and distraction techniques. Fears that still exist even when I laugh and act the fool. Because that's reality. Because not sharing them, or pretending they don't exist, doesn't make them disappear.

So my emerald suitcase lies open and empty on the bed. And today I just want to crawl inside, zip it shut and hide from the world. Because I don't want to be strong today. Because this sucks. Because it scares those who love me, just as much as it scares me. Because I can't give them those empty platitudes. Because I wont lie to them. Because they deserve the truth. And if that truth is unsavoury and unpalatable, so be it. We will deal with it because there is no other choice.

We tell lies when we are afraid....Afraid of what we don't know, afraid of what others will think, afraid of what will be found out about us. But every time we tell a lie, the thing that we fear grows stronger.

Tad Williams, Storm (1993)

So I'll share my truth. I'll shout it from the roof tops. It'll be battered and bruised. It'll burn the eyes and hurt the ears. It'll make many uncomfortable. But I wont be placated. I wont hide. And maybe, just maybe, those fears will grow weaker.

Michelle

The Machine That Goes Ping

Just a quicky to let you all know I've been admitted to hospital so probably wont be on here for a while.  I have attempted to do a delayed post, actually tried it before admission, so that may or may not come up.  Bob has kicked my butt big time.  At this point not sure when I'll have my freedom again.  At least I'm on day 3 of continuous fluids so I feel a little more alive.  Though having the machine that goes ping go off all through the night if I bend my arm is not conducive to rest.  Fingers crossed I'll be out in a few days, with some answers and solutions.

Till then, take it easy.
Michelle