Friday 28 September 2012

Well Mrs R, it seems you have a bad case of FUBAR.

Okay, so my neurologist didn't exactly use the word, FUBAR. She may have started our appointment by saying I was "special", but as any seasoned chronic illness patient knows, that is doctor speak for FUBAR. You see, out of options A (write your will now), B (don't stress, you've got a good 10 or 20 yrs of painful, untreatable, deterioration to write your will), and C (we have no fricken idea what you have, you weirdarse freak), it appears that I am a big fat C.

Don't get me wrong. I'm pretty happy to finally rule out some of the particularly nasty things which have been hanging over my head as serious contenders for a cause. Lets face it, avoiding a painful death any time soon features pretty high on the win side of the ledger. So a big YAY to no death. And a big old YAY to no long lingering nastiness whilst I'm at it. But a big loud and moist raspberry to no answers.

My neurologist is lovely. She's a top specialist in the country and I know she tried her best to work out what the hell is going on with this stupid body of mine. The testing she organised for me in hospital was very thorough and managed to rule out many hard to pronounce and scary diagnoses. But being told that you're one of a handful of her patients who will most likely never have a name or known cause for their illness, is a rather big blow. Turns out knowing that my current state of health was likely permanent, is a lot different to having it finally confirmed.

The one thing I know from my hospital stay is that I have seen all the top doctors. This was further confirmed by the epileptologist who brought his students in to interview me. As I listed off the testing I've had done and the doctors I've seen even prior to my stay, he was in awe. It's not often that a patient is so thoroughly investigated, being 'interesting' has some perks. So at least I know I've done all that I can do to find some answers. But conversely it means there is no where else to go. And frankly, that's a little disheartening.

I am left with a complex collection of weird unexplainable symptoms. Apparently, it's clear I have severe autonomic dysfunction, that my hypothalamus and pituitary are no longer working properly, that I have either a primary or secondary enteric dysautonomia, progressing small fibre neuropathy, some of my axonal sheaths are thinning, the list goes on and on. My body is clearly breaking, but none of that gives me a definitive diagnosis as to why. And with no definitive diagnosis, I have no treatment plan past symptom management. A cure is no longer a realistic option. I have no idea what comes next, though with six years of consistent progression it's a pretty safe bet that it'll continue to progress. But most concerning for me, is the fact that I don't know if this is something I can pass on to my kids.

I know I have a team of doctors who are all the top in their fields, who are willing to go above and beyond, are willing to investigate anything I suggest, and are equally frustrated. Doctors who take me seriously and work collaboratively despite all the obstacles my contrary body provides them. And thanks to that one fact, I've ticked all the testing/hypothesis boxes off my list. I know in this respect I am far luckier than many other patients. I now also know that even with all this it is still no guarantee of answers, or solutions.

Since yesterday I have alternated between, tears, anger, and numbness. The stress before yesterday's appointment, thanks to all the possible "what ifs" that kept playing through my mind, has taken a toll. Add in that I am in the midst of a bad run of insomnia and my coping reserves are a bit lacking. A long soak in the bath last night and just sitting in my garden today, feeling the earth under my feet has helped. I'm no where near finished processing what it all means. I'm at a crossroads. I've done all I can and I have to make a choice to accept that what I was told is the simple truth. That it is what it is, no matter how much I wish it were otherwise. Sometimes, shit just happens. 

As I sit here tonight I realise that my ideas of hope are evolving. Where once I hoped for a cure, now I hope for happiness and acceptance. And whilst the recency of this news means I am still an emotional basketcase as I sort through all the implications for my life and that of my family, I do believe that happiness is a choice you can make regardless of your circumstances. And if this is as good as it gets I will damn well make the most of it. Besides, happiness really is the best way to give my body the middle finger.

In the words of Peggy Lee,

" Is that all there is, is that all there is
If that's all there is my friends, then let's keep dancing
Let's break out the booze and have a ball
If that's all there is "

Michelle :)

Pretty sure this will be playing rather loudly on loop for a while.

Tuesday 25 September 2012

Ballet worthy fashion? Help!

In yet another attempt to avoid reality and tomorrows neurology appointment, I have once again badgered my eldest into taking more ridiculous photos. All to help decide what I should wear to the ballet this Saturday. Yes, that's right, I said 'ballet'. Following on from a post, where I admitted my love of D grade scifi movies, a night at the ballet may seem a rather counter-intuitive pursuit. But my tastes are rather eclectic, something a scan of my ipod favourites, or book shelves, would quickly reveal.

In truth I am taking my mum to see Swan Lake. Going to a traditional ballet in all her finery, was on her Bucket List, so for her 70th I decided to go all out and shell out the big bucks to see The Australian Ballet's production. We are also staying at the beautiful and historic Hotel Windsor, yet another item on her bucket list (and mine) so it's a wee bit of a glam weekend. I have no idea how I'm going to make it through a night out in the city, but hey, we'll cross that bridge when we come to it. For now I'm concentrating on the fact that we're going to have a bit of a posh weekend that neither of us are ever likely to ever do again, and simply enjoy the moment.

Now my big problem is, what does one wear to the ballet? I really have no idea. I have a budget of $0 so am forced to shop my wardrobe. I have scoured its darkest recesses and it seems my "let's get gussied up" wardrobe, is a bit lacking. Not much call for ball gowns and pearls over the last few years, I haven't purchased a ballet/black tie worthy gown in the last 10 years. In fact, the red number below could be classed as retro given it's over 20-yrs-old. Only the blue option is new. I was lucky enough to win that from another fabulous Australian fashion blogger and stylist, the all round lovely Cecylia last month. I am also faced with one more fashion obstacle, that being my still dodgy left ankle which has relegated me to one pair of black wedge heels I can wear, and even they give me a sexy limp. I do have accessories, not that I am at the point of deciding on those yet, or my hair, or makeup, or how I'm going to put on compression stockings with ankle that feels like an open graze when touched (gotta love neuropathic pain). Instead I'm going with baby steps and starting with the dress.

So I'm asking for your help dear readers. Which of the following are a "Yay", which simply make you giggle at the crazy woman, and perhaps most importantly, which are a big fat "Hell No!' for the ballet?

No 1. A nifty red number from way way way back in the day.

Eldest son insisted I put in at least one stupid shot. This is my version of the 'broke down' models on ANTM. Hope you're happy boyo!

No 2. Yet another old Chinese inspired dress. I never throw anything out.

   Are we done yet?

No 3. Miracle of miracles this one is under 10 years, just!
Yep, still can't put much pressure on that left ankle. Bloody hurts!

No 4. Another that just slips in under the 10 year mark. Must admit I do like that the lace overlay hides any errant cake that may be eaten.

No 5. About my only longer line black dress. Another oldie from back in the 90's. Actually wore it for a friends wedding way back in the day.

No 6. My only new dress thanks to Cecylia. A nice fresh Spring colour.

Help me Interwebz! As the photos show I really have no idea what to wear. PJs don't class as black tie do they?

Michelle :)

Early 90's supermodels and George Michael seemed an appropriate musical accompaniment given half my wardrobe is from that time period.

Monday 24 September 2012

Bugger reality, bring on the Mega Piranha.

Well, it seems I have run out of swear words. Who knew that was possible? I am forced to get creative with classics like "you purple donkey chair muppet" or "tissue sniffing glass bandit". Word salad (with a side of hypoxia) is a wonderful thing. I'm over being an adult, so I quit. Maturity is not for me. No way. No how. I'm going to pout. Scuff my shoes, and say "I don't wanna", over and over again. I'm going to take off my big girl panties and run around the yard swinging them above my head like a mad woman. Okay, maybe not the last one. My elderly next door neighbour may not cope too well with the sight of her crazy, sans undies, neighbour running around like a headless chook. Frankly, even my ever adoring dogs may be forced to re-evaluate our relationship should they see that little display.

I finally heard from my neurologist and will be seeing her this Wednesday. Two days. Ugh. Fanfrickentastic. Time for answers from my week of hospital testing. Stupidly, I've been peeved that it's taken so long and now that it's here and reality is about to jump up and slap me, I wish I was still playing the waiting game. My mind truly is a wonderfully contradictory and messed up place. The way things sit it's really a no win situation. Option A is that I have a disease of the nasty, better get used to the word 'bequeath', variety. Option B is that I have a disease of the nasty, wont kill you yet but there is no treatment and you'll slowly and painfully deteriorate over time, variety. Option C is they still have no idea of what is going on in my body other than I have a bad case of FUBAR, and I am left to continue on as I am, no idea why and no solutions. Which would also mean I have added to my collection of impairments for nothing (go sural nerve biopsy which is still swollen and scabby, 3 lots of antibiotics and five weeks later). YAY me. Can't wait for that appointment. Personally, I think my time would be better spent watching a bad SciFi movie like Frankenfish or Mega Piranha, or stapling empty Lindt wrappers to my head, as I ignore reality and immerse myself in chocolaty goodness somewhat akin to this scene from Chocolat.

On the good front. Youngest is slowly recovering from his second knee reconstruction of the year. And we are both slowly recovering from me having to help him bathe today. An event that surely rates as a highlight of any 14-year-old boy's life. Now if only we could get rid of the pungent teenage boy funk coming from under his leg brace, that would be lovely. In true Chateau Rusty style we did have a small familial celebration at his first post pain med poo. Lots of woo hooing and such. (When I think about it we do celebrate a lot of poo milestones in this household. There is also much in the way of fart humour. We even used to tuck our boys in at night with a goodnight fart, as well as a goodnight kiss, which always ensured giggles. Not much has changed over the years. I'm sure my mother is suitably proud). He's now sitting on the couch eating M&M's and watching movies, so I'm thinking alls well on his end. The good drugs will do that for you. Me, I'm still in recovery mode, though nearly 24hrs of coma sleep did help things along. Baking and gorging on cranberry and walnut hot crossless buns has also helped considerably.

On the personal front there's a whole heap of, out of left field need to be an adult, decision making to be done. All of which has left me feeling a tad overwhelmed, a tad manic, and desperately in need of a break from reality. Sitting in my pjs, watching 'so bad it's good' scifi, with a Lindt IV is looking pretty good at this point. I may even break out a bit of Two-Headed Shark Attack action to make it through.


I leave you with bad scifi at it's finest (2.6/10 stars according to IMDb) because it must be shared. Gigantic mutant killer piranha who fly and explode, and it stars 80's singer Tiffany and The Brady Bunch's Barry Williams! What more could you want?

Saturday 15 September 2012

Motivational Lessons.


Part of the Health Care Social Media Review blog carnival hosted by The Afternoon Nap Society.
Topic: What motivates you? What de-motivates you?

Back in my other, pre-sick, life motivating patients to participate in rehabilitation was a large part of my work. Most had experienced an acute event such as a stroke or head injury and had come to the ward for post-acute care. I remember sitting around in team meetings hearing each patient discussed. "Mrs B is refusing to come down to physio", "Mr K is non-compliant with his writing practice", "Miss G refuses to use her dosette box". And off I'd trot to go talk with Mrs B and all her non-compliant cohorts, to try and get her to agree to come down to the gym. I'd go through the usual speal, we'd look at goals, what would get her home quicker, explore why she didn't want to go down to the gym etc. Nine times out of 10, I'd get them to agree, I was pretty good at that aspect of my job. Though sometimes I do suspect that their compliance was somewhat motivated by a desire to avoid yet another encounter with the annoying neuropsychologist, I could be quite persistent. I look back now and wonder how my working self would assess my own motivation and participation over the last few years. On a good day I'd be the perfect patient, self-motivated, engaged, determined. On a bad day I'd be the surly, non-compliant patient threatening to throw a cup (or worse) at my head. It's just luck of the draw.

Motivation in those first early days was easy. Early on I was focused to the point of obsession. I wanted answers. I was determined to get them. I researched day and night. Health professionals make the worst, or the best, patients, depending on your point of view. We aren't satisfied with half-arsed answers or half-arsed medical professionals. We know the system. We know how and where to research. We come in armed to the teeth with journal articles, and wield Cochrane Reviews like broadswords. Don't tell me it's all in my head or my bloods look fine. Don't tell me you don't know that drug or I don't need that test. That only fuels me to continue my search (and imagine various Looney Tunes scenarios, with inept and dismissive doctors playing the role of Wiley E Coyote). And all that dogged persistence did pay off. One year on after my first symptoms appeared, after many wasted appointments, and facing the worst and best of the medical system, I received my first diagnosis, neurocardiogenic syncope (NCS).

That was 5 1/2 years ago. That first diagnosis gave me hope and and impetus to solider on. I took my pills, changed my lifestyle, dotted my I's and crossed my T's. I was the poster child for a great patient. My cardiologist gave me a timeline of six months till my life would be back to normal. It's easy to remain motivated with such a clear timeline. I knew I was ill, I knew what it was, I knew how to fix it. The ultimate health trifecta. But then that deadline rolled around and despite all my hard work, I was worse not better. The focus changed, uncertainty began and motivation become somewhat more complex.

In the past six years I have gone from NCS, to Orthostatic Intolerance (OI), to Dysautonomia and my personal favourite "Michelle's disease". Words like chronic and progressive, or another personal favourite 'confounding' have been added to my file. I have been poked and prodded to the nth degree, not an orifice has been spared, and dignity, just like clarity, is long gone. And the one thing that has become apparent is that maintaining the level of motivation I had in my early days of illness is not easy. And what motivation actually means is no where near as clear as I once thought. Trying to maintain that driving passion for diagnoses and cures is exhausting. Test. Hope. Disappointment. New pill. Hope. disappointment. New doctor. Hope. Disappointment. Repeat ad nauseam. It chews you up and spits you out. In an acute setting you can maintain that high intensity level of motivation, but it is simply not viable in the long term. In a sense you have to let it wax and wane or redirect the nature of the focus to maintain your sanity. 

I am still motivated to seek out answers. I am still compliant with my treatment and management strategies. I have a great team of doctors who I trust and with whom I have great working relationship. But my motivation now is multi-focused. Living life to the fullest, despite my health has become pre-eminent. Along with raising awareness and advocating for others with Dysautonomia and chronic illness, this gives me a break from my own ever present health concerns. Not that I always get these right or even that my motivation for these goals doesn't wax and wane. Chronic illness is hard no matter how motivated you are. Even with the best support systems and best available treatments, it's a heavy burden to carry. I have days where I am highly motivated and days where I just want to crawl into bed and ignore the world. The days where you have a bad appointment, the results you had been so hopeful about turn to naught, where someone in your life makes a disparaging comment about you still being ill, where you see an picture of yourself pre-sick, or find your symptoms progressing despite all your hard work, they can all smash your motivation to pieces. But that's part of the process. It happens. You think "Why bother?" You hide from the world for a while. Or give your disorder the middle finger and push to do something you shouldn't, and pay for it big time. Then something changes. You sit back, take a deep breath, dust yourself off and press on like a rational and motivated person once more. (I feel like the Lion King's, Circle of Life, should start playing right about now).

I have a much clearer picture of what motivation means for me now, and it's not the same as the one my old working self had. Patient-centred medicine is a very different kettle of fish, when you are the patient. Before I knew the theory and I employed it to the best of my ability. But it is only now that I truly understand the motivational process. What I employed with my acute patients can work in the short-term, or in spurts, but it is not a viable long-term model. Finding that middle ground in the long term is an ongoing process for me. Overall, I am motivated and long term that is what will sustain me. But I also allow myself to check out now and then. I can live my life as my disorder or I can live it as me, in all my messed up contradictory glory, as a person who just happens to also be ill. And personally I prefer the latter of the two options.

All these years later there's one patient in particular that I remember. He was an older gentleman who had come to the ward with Wernicke's encephalopathy. He was unmotivated in the extreme and thought I and my tests were fools, or other words starting with 'F' as he was fond of telling me. One day, after 20mins of trying to engage him, I threw in the towel. Instead, I took him down to the hospital garden, we had a coffee and discussed football for the rest of the session. Every session afterwards he came back motivated and engaged. When I asked him why he said it was the first time someone had treated him normally since his admission. Every second of every day since his admission had been filled with medical treatments and rehab sessions. But, for those football-filled 30mins he wasn't a patient, he was just a person. It was like a pressure valve had been released and now he could focus on rehab and getting out of hospital. After that every time I saw him on the ward or in passing, we'd chat about the football and have a laugh. And he kept coming back for therapy. All these years later I finally, truly understand what he meant. In a life that has become so dominated by my health issues, sometimes you simply have to let go of that focus and just be a person for a while, in order to be able to maintain the focus in the longterm. 

What motivates us is different for every person, but what is clear for me, is that different levels and types of motivation serve us at different times. What served me well in the beginning, would be a burden at this point in the game. What served me when I was in hospital in August, doesn't serve me a month later. What serves me today, may or may not serve me tomorrow. My goals and my desire to achieve them are often as fluid as my symptoms themselves. Half the trick is learning when to use each type of motivation and when to give myself permission to say, "stuff it" and take a well deserved sanity break from it all. Fingers crossed I'll get that all worked out soon.

Michelle :)

The Black Sorrow's, Chained to the Wheel. (1989)

Thursday 13 September 2012

Invisibility is a Multi-factorial Beast

[Image: a black and white still from the Invisible Woman (1940) Image of a midcentury bedroom an invisible woman is sitting on a round tartan covered footstool. All that is visible is the pair of thigh high stockings she is putting on.]

Interpretations of the 'invisible' aspect of Invisible Illness, are as varied as the people who live with the illnesses and disorders themselves. Dysautonomia falls into the invisible camp for the most part. Patients frequently report being told they look too well, or absurdly even that they are too pretty, to be sick. Not just from those in their lives, but sadly also by far too many medical practitioners. It often seems we are all part of some bizarre masquerade ball, wearing healthy masks, whilst our insides slowly fall apart. Whilst it is the aesthetic aspects of Invisible Illness that are often the most discussed, invisibility is really much more of a multi-factored beast. From common misperceptions of what sick looks like, to the way society and the organizations we create to deal with health and illness treat the ill, invisibility is a problem that needs to be addressed at multiple levels.

The aesthetic aspect is the most obvious feature of Invisible Illness. As I've written before I think this issue is two-fold. For many the lack of visible symptoms is problematic. Common perceptions of illness involve wheelchairs, hair loss, scars, bandages, and the like. Symptoms like tachycardia, weakness, nausea and pain aren't easy to spot. And yet their impact on functioning can be just as devastating. With regard to Dysautonomia, visible symptoms such as blood pooling are often covered by compression stockings. Or patients wear long pants to hide what is often thought of as an unattractive aspect of our presentation. Many, myself included, prefer to use what energy they have to try and look our best when we leave the home, even if that is just to see the doctor, thus hiding what few visible symptoms we have. At best a patient may look tired. But for the most part, others remain unaware of the continual internal symptoms with which they may be struggling.

This is further exacerbated by the simple fact that when most ill, and symptoms far more visible, Dysautonomia patients are usually not well enough to go out in public. And, not just at a social level. The common lament of being too ill to get to the doctor or hospital, means that for many patients even their primary doctor may never see them at their worst. It is often only those closest to a patient, their immediate family, who are present to see when symptoms are truly visible. This is further compounded for those who live alone or are isolated, who may never be seen when visibly ill, by the simple fact of their living situation. 

Then, and what I see as the more pressing issue of invisibility, is the lack of knowledge about the disorder. Dysautonomia, be it POTS, NCS/NMH, OI, or any of the many and varied subtypes is poorly known and little understood. Awareness campaigns are still in their infancy and neither the umbrella term, Dysautonomia, or any of the subtypes have made their way into the common lexicon. By comparison words such as 'cancer' convey a large amount of information in a short space of time, and you do not need specialist medical knowledge to understand the concept. As a community, we know that a cancer diagnosis is serious. From that single word we have instant basic ideas of risk, treatment options, difficulties a patient may face etc. This is not the case for Dysautonomia or any of the subtypes. Without direct knowledge of a diagnosed patient, very few have heard of the disorder. 

This lack of knowledge is not confined to the lay community. Even within the medical community it remains relatively unknown. Hence patients remain undiagnosed, untreated and often misdiagnosed. Many doctors may never (knowingly or unknowingly) seen a Dysautonomia patient in their career or may only have a single patient with the disorder. Additionally, many of the drugs used in treatment are orphan or specialist drugs, known only to those who specialise in the area. Even with doctors who have knowledge of Dysautonomia, many do not understand the impact these disorders have on day-to-day functioning and patients are often told that their diagnosis won't kill them, or is nothing to worry about. Leaving patients feeling both unheard and unseen.

Society does not encourage the free discussion of the less savoury side of illness. Illnesses that have a gastric component are a case in point. Many times these issues have a major impact on a patients ability to function, or even to leave their own home. Yet free discussion of these issues is strongly discouraged by societal norms. Many patients are living with issues such as daily faecal incontinence who have never discussed this with anyone in their lives. The sheer volume of patients living with this and other 'embarrassing' issues is not well known with many even too embarrassed to discuss them with their treating doctors. Yet as I have often found when discussing these issues on the blog, they are experienced at some level by many patients. Yet these problems remain essentially invisible due to societal taboos.

And then there is the simple fact that the sick in our society are frequently made to feel less. Especially with regard to chronic conditions. Most people can understand an acute illness. There is a very clear process involved. You get sick, you have treatment, you recover. A simple A to B to C. For those with chronic illness it's not that simple and as a society we have been taught to be ashamed of 'failing' to get better and many are essentially shunned. The implication being that they have not tried hard enough to be well and are therefore somehow to blame for their predicament. We apply a work ethic to health and fail to realise that work comes in many less obvious forms. Simply, getting out of bed and brushing my hair can be work some days. Being able to attend one school concert is an exercise in logistics and planning. Managing my medications and lifestyle modifications to maximise what I can do and maintain what little health I do have. But whilst important at a personal level, these exercises are not easily quantified or understood by traditional paradigms.

Our medical system, it's funding and treatment options then reflect this societal attitude. Yet another layer of invisibility to complicate the mix. Programs for complex and chronic conditions (especially those that are rarer) are limited and often expensive. Whilst, short-term rehabilitation programs exist for things like heart attacks and hip replacements, such options for disorders that require long-term rehabilitation are limited. Disorders such as Dysautonomia do benefit from long-term physical rehabilitation, but there is no quick fix and patients may need to come back year after year as their symptoms change (It is important to remember that there are subsets for whom such programs can be harmful). These programs are few and far between and quantifiable improvements and outcomes may not be as clear as they are for more acute illnesses. Often, particularly in remote locations and small communities, there is simply no place in the medical system for the complex, chronic patient. The lack of appropriate programs means patients aren't seen. And in our highly pressured medical systems, what isn't seen on a regular basis slips from the consciousness. As a result a whole community of complex, chronic patients exists out of sight, managing as best they can on their own. Invisibility in anyone's language.

How all these factors interact for the individual colours their perspective on what invisible means for them and for many all these factors contribute to patients feeling very alone and very invisible. 

As part of that community and having had those experiences I can empathise and understand the feelings of invisibility. But the reality is that these so called Invisible Illnesses, such as Dysautonomia, aren't actually invisible for those who live with them. At a personal level Dysautonomia is very visible in the way it impacts upon my life hence my post Dysautonomia: Invisible Illness my Arse! It is seen in my lack of participation in life. When I was unable to attend my child's sporting event or school play. When I am unable to simply go to a cafe for a coffee with a friend. When I am unable to stand to make dinner. When I am unable to brush my hair or lift my head from my pillow. Invisibility and visibility coexisting in one large, complex and chronic package.

Aesthetics are but a small part of the problem of Invisibility. It is how society treats the ill at the personal and organisational level. It is how our illnesses present and impact upon our lives and how we internalise our individual experiences, that defines Invisibility. Visibility and awareness and, in turn, improved patient experiences, will only be achieved by addressing all these factors.

What does Invisible mean for you? And what can we all do to enact change?

Michelle :)

Some other of my ramblings on the topic of invisibility can be found here and here.

I thought this was an appropriate musical accompaniment as we definitely need a better way of dealing with chronic and complex illnesses. 
Remember to share if you like :)

Tuesday 11 September 2012

The Waiting Game

Why must antibiotics smell like arse with a side of toe jam? That's what I want to know. Ugh. If efficacy is measured by malodour, these must be the most incredible bacteria killing capsules of all time. Yep. That's Right. I have yet another stupid infection in my ankle incision and it may be messing with my attitude (and cogitations) a little. Well that and the fact I am still playing the waiting game with my neurologist. Logically I know she is waiting on the final biopsy results to come back, before we can have our big sit down to discuss what was, or wasn't found. But damnit, logic is overrated, and right now I want to be pouty and stampy.

Waiting, waiting, waiting. This is not good for the soul.

I have tried soothing myself with copious amounts of chocolaty delights. In fact, as I type I am waiting on my bestie to bring round a tub of newly discovered chocolate gelati from a local organic takeaway. But even that's not doing it. I may be keeping Lindt in business. I may have a perpetual air of eu de chocolat, but it doesn't change my status.

I'm still waiting.

It is Spring here in Oz and the days are beautiful. Not too hot, not too cold. The air is fresh and the sunshine glorious. The yard is lush with new growth and if I squint just right, I can ignore that it is 90% weeds (I'm sure there's some cosmic metaphor in that). Though they are very healthy and very green weeds. Even the buttercups and onion weed look pretty. I can't even see the rather large Great Dane nards for the long luscious grass. Bonus. Though it does make moving around the yard a bit like a smelly and squishy game of Minesweeper. It is delightful to be in the warm dappled sunshine and listen to the very randy, local bird life. I can meditate outside now, or at least attempt a "So Hum" or two. Though having two dogs sit so close to me that I can feel their breath on my face, or worse still, snuffle in my ear, is not exactly conducive to finding my inner peace.

So I sit and curse as enlightenment eludes me, and still I wait.

I'm trying to ignore it as best as I can. I have even resorted to housework, a good indicator that I am in desperate straits on the coping front. Mind you I now have sparkly clean bedroom and bathroom windows. All the furry black mould that was multiplying and setting up a small feudal society on my windowsill is now gone. I still have yet to work up to the dust bunnies that seem to be reproducing at an alarming rate, but give me another week of waiting and they too will be gone.

And still I wait.

My body is slowly healing at least. I feel more normal sick, rather than the added blargh of the post-hospital/infection recovery phase. Most of the bruising is gone now. Just some sickly yellow/green patches, dead sexy right? The skin where the adhesive dressings were now carries some lovely rectangle scars framing my now lumpy incision lines. Another addition to the visual History of Me that I carry on my body. My thigh and stomach incisions are finally sealed over, which is cause for much celebration. And I no longer limp around the house. All things to be grateful for. But I look at my scars and once more I am reminded....

....I'm still waiting.

I want answers and I want them now. I need to process whatever the outcome and take the next step. Life is going on outside my health (eg, my son goes back in for surgery on the 21st) and I need to tick this one off the list so I concentrate on what is truly important. But I have no control. I can yell and stamp and curse, and tell my antibiotics I hate them (I'm sure they understand, and at least it makes me feel better) but it makes no difference.

I have to wait, and I hate it.

So I'll sit here muttering under my breath like the impatient, angry, crazy woman that I am. I'll sit in my garden and gorge myself on chocolate, and I'll polish my shower till it shines like crystal. And I'll wait like a good patient and slowly lose my mind in the process.

Wait, wait, wait,....why are we waiting, slowly dehydrating, oh why are we

Michelle :)

And just because I need some Patience, and because Guns N' Roses always cheers me up, and because I can't help but do a little Axel Rose dance every time I hear this, well it just had to be shared.

Friday 7 September 2012

Oriental Teahouse: Strawberry and Cream Tea. Nuffnang Product Talk.

(This review is part of Nuffnang's Product Talk. I did not receive payment for this review. However, I did recieve a box of the Strawberry & Cream tea to review.)

Growing up in country Victoria in the 80's, tea came in one of two forms: the cardboard tasting tea bags which my parents still enjoy to this day, or the mysterious tea caddy of loose fragrant leaves that my grandmother kept high in her kitchen cupboard. To this day I have no idea of the brand my grandmother used, all I knew was that mysterious tin was always full, the Magic Pudding of tea tins perhaps.

Tea time at my grandmother's house was always interesting. I still have clear memories of watching her scooping the leaves into the teapot, a tiny little woman, resplendent in her pearls and lippy. More Sundays than I can count we sat at her kitchen table, complete with rickety legs, multiple doilies and tea china, ready to down a cup or two. It was always pot luck as to how the tea would come, though if there wasn't a centimetre of leaves in the bottom of the tiny china tea cups, it just wasn't tea. From the almost tasteless initial cup where the tea was so diluted you almost had to imagine flavour, right to the last thick cup of burnt umber, tea took on the form of a ritual gastronomic challenge every Sunday afternoon, and was not for the faint of heart. Her lack of tea prowess was somewhat ameliorated by the generous provision of Lamington Fingers, Teddy Bear biscuits, and her feather light sponge cakes, all very important when you're 12. But needless to say, tea was more a means to a sugary end, than a joy.

It was only when I grew older and moved away from home, that I realised tea could actually be a pleasure. Or more importantly, that it came in more than those two uninspiring varieties. As much as I love my coffee, these days I also have a steadily growing collection of tea canisters filled with various fragrant offerings. The only tea bags in residence are for my parents who to this day, wont try any of "that fancy stuff". Tea has now become part of my night time pampering routine, and there's nothing quite like a fragrant cup or two at the end of a long day.

I am always on the look out for new flavours and tea ware (I may need a tea intervention if I'm honest), so I was rather excited to have the opportunity to try Oriental Teahouse's, Strawberry & Cream tea.
Strawberry and Cream is a fragrant mix of strawberry pieces, apple pieces, hibiscus, rose-hip peel, pineapple cubes, elderberry & flavouring. (I didn't find the apple pieces to be a problem, but if your fructose malabsorption is more severe, you may want to keep this in mind).

And the verdict:

It smells divine. I could sit and sniff the dried tea all day, and when brewed the smell fills the house. Or, as my youngest put it, "it smells like jelly", high praise from a 14-year-old. The colour of the brewed tea is quite lovely and even in today's rather overcast light still a beautiful pinky red tone, which turned a lovely plum red the longer it brewed.
In homage to my Nanna, I had to include my one and only doily in the pictures.
 Drinking out of mum's favourite teacup wasn't tooooo embarrassing.

As a hot tea I did enjoy it, but it did need a little sugar syrup to bring out the flavour and longer brewing than the suggest 3-5minutes to really appreciate the full flavour.
Their description of a "dessert treat in a teacup" is very apt and I must admit I much preferred it as a sweet iced tea. The suggested addition of some strawberries and ice cubes to the mix would definitely set it off. Sadly, I was sans strawberries thanks to my ravenous teenagers, but the addition of ice, a little leftover sugar syrup and a little fresh mint did make for a lovely refreshing drink. With Spring finally here, I can see myself sitting out in the garden sipping a big ice cold glass of the tea enjoying the warmer evenings.
Overall, I'd recommend the tea more as a very refreshing sweet iced tea, than a hot tea. Though if hot I would let it steep a little longer to develop the flavour. I do like that the tea is caffeine-free, so a cup of an evening isn't going to add to my ever present insomnia. My son's reaction makes me wonder if it could indeed be used to make a refreshing dessert. Maybe an adult jelly with a drop or two of strawberry liquor? Seems I have a plan for the weekend ahead!

Oriental Teahouse is situated in Melbourne, Australia, and provides not only a huge range of teas (7 categories of tea, with 50+ types in total) but is also a fantastic Yum Cha destination. I do love that they have suggestions for paring teas with dumplings, as a girl can never have enough dumplings in her life. Chilli Wagyu Beef dumplings anyone?

Their extensive range of teas, including Strawberry & Cream, are available for purchase from their online shop which is always a bonus for those of us who have trouble getting out and about. Their frozen dumplings are also available for purchase so you can enjoy them at home with a cup of your favourite tea. Be still my dumpling loving heart.

Oriental Teahouse can be found online at:
Twitter @OrientalTHouse,
Instagram @orientalteahouse

Time to feed my addiction with yet another tea canister, or tea pot, or cup, or tea, or....dumplings!

Michelle :)