Tag Archives: diagnosis

Finding A Magic Pill.

Good news! Our daughter has mild gastroparesis or delayed gastric emptying and no signs of coeliac disease or diabetes…phew! She has been prescribed periactin, which as far as I can see through a quick Google search, can stimulate the appetite in underweight people. I am also looking at her diet to boost her intake and she’s also having a food replacement drink.

So it’s looking like I’ve got all the bases covered…including having to grind up the tablets at the moment. She had a really good try at swallowing it but she just couldn’t even swallow half or quarter of a tablet. I was like this as a kid myself and I remember my poor mother grinding up tablets and mixing them with honey. It seems what goes around comes around.

I don’t think we could have had a better outcome from yesterday’s appointment. I was stoked, relieved, so very thankful and would have been doing the Happy Dance if I wasn’t feeling physically and emotionally drained. I still feel like I’ve been runover by a steamroller or squashed by that very heavy, metaphorical elephant. It was a long day and I did the 1.5 hour drive home admittedly via the deli in Wahroonga where I procured some top shelf gourmet mental health food: Double Choc Brownies and a gooey cinnamon bun. Cinnamon scrolls are a rare breed in Australia or at least gooey ones like this are. Wow, it was good!

Driving home, in some ways, the whole scenario felt like a huge non-event. Oh! It’s just mild gastroparesis and we were told there was essentially nothing they could do to treat it but we have this pill. Yet, this doesn’t negate that she’s underweight, a picky eater and was once again feeling sick after breakfast this morning. It doesn’t cancel out the extreme stress we’ve had with a child who can’t or won’t eat and ends up with low-blood sugar and gets cranky. I’m sure this isn’t going to magically go away by just clinking my fingers, either and it hasn’t!!

My kind of journey: time traveling back to the 1970s with Qantas flying over the Sydney Harbour Bridge.

My kind of journey: time traveling back to the 1970s with Qantas flying over the Sydney Harbour Bridge.

All of this is what people call “a journey”. However, when I think of going on a journey, doctor’s surgeries, hospitals, waiting rooms are certainly NOT on my itinerary. No! That’s not a journey. It might have its moments of sunshine but it’s still a perplexing quagmire and “journey” just doesn’t convey the intensity of those moments when bad luck, despair, pain and sorrow converge and attack. The bullets are flying. You’re madly scuttling for cover…any kind of cover just as a bomb goes off. Although you emerge from the battlefield unscathed without a scratch on the outside, you’re certainly NOT at the Teddy Bear’s Picnic either!!

If only life could be a continuous Teddy Bear's Picnic!

If only life could be a continuous Teddy Bear’s Picnic!

Here’s The Teddy Bear’s Picnic performed by Bing Crosby: https://www.youtube.com/watch?v=IrvkHAxnjzI

Don’t get me wrong. I’m as positive and the next person but it is what it is. Even when you come through the battle unscathed, there are still those invisible scars on the inside because you know what might have been. It didn’t happen but you went there in your mind and you knew. You saw. You anticipated but somehow found a U-turn.

So getting back to the elephant in the room…

It’s still with us and hasn’t gone away but it has very much shrunk and I hope become more manageable. As we left the doctor’s surgery, I picked the much deflated elephant off the doctor’s desk and brought it back home and it’s now sitting in my china cabinet alongside my vintage teacups. The elephant in the room is no longer looming overhead and intimidating me like a stand over man. It’s shrunk back down to size and I’m so relieved.

My next challenge after all these tests and appointments, is to convince our daughter that the elephant’s under control or at least will be in time. She is very much in the early stages of coming to terms things and this process is intensified through lack of food. As much as we might want things to go back to “normal”, she needs to be given the the time and space, understanding, compassion and acceptance to deal with this in her own way and I’m pretty sure that once she does that, she will start getting better too!

After this afternoon, I say: “Bring it on!!”

Thanks once again for your concern, encouragement and support. It means the world to me!!
xx Rowena

PS: Bex Powders used to be known as “Mummy’s Little Helper”

Evicting the Elephant from the Room!!

An elephant has been living in my room. It’s never had a name and it’s never shared its story but some time ago, it simply moved in and it hasn’t moved out, rudely bailing me up in my own home.

Ever since, I’ve been feeling like a teeny, weenie, terrified mouse scrunched up hiding in the corner too afraid to come out.

After all, how could a tiny, little mouse ever take on such a monstrous elephant? It wouldn’t even need weapons of mouse destruction. It could just sit on me and I’d be flatter than a pancake. I doubt you’d even find my shadow.

Obviously, confronting an elephant is a serious consideration and not something I’d file as an “irrational fear”.

However, costs are mounting and I simply can’t afford to indulge its freeloading consumption any longer. That elephant has to go and I will do whatever it takes to get it out!!

For many years now, the elephant in the room has been my auto-immune disease, which is inconveniently known as dermatomyositis. That elephant moved on now that I’m back in remission. However, as we all know, elephants are very sociable and have fantastic memories. So once you’ve entertained one elephant, word gets around and another one quickly takes its place. You don’t even need to serve peanuts.

While having your own elephant might seem amazing, they’re actually very hard work. It might be fun riding an elephant to work or using it to clean the car, water the garden and even to do a bit of heavy lifting. However, take a serious reality check. Elephants are actually seriously high maintenance!

After all, elephants not only eat and eat and eat and eat. What goes in, must come out.

Talking about what goes in, a handful of lawn mower clippings is hardly going to feed this insatiable beast. Elephants eat 250-300 pounds of food per day on average and in a zoo, a typical adult elephant eats 4-5 bales of hay and 10 – 18 pounds, or 4.5 to 8 kg, of grain. Annually, that’s more than 29,000 kg of hay and 2700 kg of feed per animal. Naturally, buying all this food puts a serious dent in your household budget.

An elephant also needs to be bathed and thery don't exactly fit inside your tub!

An elephant also needs to be bathed and thery don’t exactly fit inside your tub!

Elephants also need to drink and in a drought-ravaged country like Australia, an elephant places an enormous drain on your resources. Their daily water consumption is 25 – 50 gallons per animal, or 100 – 200 litres. Let’s hope you’re not depending on a rainwater tank! I wouldn’t like to run into a thirsty elephant on the rampage!

Obviously, just satisfying the consumption requirements of an elephant, even a metaphorical one, takes an enormous amount of effort.

However, that’s only half the story and to be perfectly honest with you, that’s the better end of the story too!

Elephant Poo.

Elephant Poo.

As I said, what goes in must come out and in the case of a herbivorous elephant…out and out and out!!!!!
An elephant defecates from 12 to 15 times a day, a daily quantity of 220 – 250 pounds. This adds up to a yearly quantity of over 85,000 pounds of manure, more than 40 tons per adult elephant. That’s a huge pile of dung in your room and can become something of a Tower of Babel rising right up to your ceiling and you really wouldn’t want to fall in!!

Yet, that’s not all that comes out either!

Elephants also produce huge amounts of methane gas. Properly equipped, a car could travel 20 miles on the amount of methane produced by one elephant in a single day. That also makes having an elephant in the room, a rather stinky proposition, well beyond the scope of even the strongest air freshners. Urgh!

So after exploring the barest minimum survival, “nothing fancy” requirements of that elephant living in your room, perhaps you, like me, can appreciate that it’s time to send that elephant packing.

No more being nice!!

Miss in hospital waiting for her endoscopy. So brave but she also loved having her own remote control TV!!

Miss in hospital waiting for her endoscopy. So brave but she also loved having her own remote control TV!!

The current elephant in our room is our daughter’s health. She is struggling to eat and is seriously under weight. She’s 9 years old and eats less than 500 calories most days when she should be eating upwards of 1,800. Most of the time, she can only eat very small amounts and then feels sick. She also complains about bread and potato getting stuck in her throat and troubles with reflux.

You can just imagine the stress that we’ve been through having a child who doesn’t eat. She’s now 9 and this has almost been going on almost since birth. Well-intentioned multitudes have told me that they’ve never seen a child starve themselves to death but our daughter has certainly pushed the boundaries. It might just be the gastro bug that’s been going round or our increased awareness, but she seems worse over the last couple of weeks and is arriving home from school looking weak and off-colour but perks up with food and will eat something. At the same time, she’s a pretty active kid so it’s hard to understand where she is getting that energy. It’s been very perplexing.

Late last year, we took matters in hand and over the last couple of weeks she’s had a barium meal test, an endoscopy and a tube into her nose to check her throat. She’s been so brave and gone through this with courage and strength but even though I’ve had these tests myself, it’s awful to watch her suffer. My heart aches for her and I just wish I could simply kiss her and make her better! Yet, I can’t and rather than being the strong rock I’m portraying, I want to cry and cry and cry. Crumble apart like sandcastle being swept away by a sea of tears. A bit melodramatic, I know, but she’s my little girl…our princess!

So for us, dealing with the elephant in the room has meant documenting what she eats and after realising how close she is to running on empty, I’ve bought her some medical food replacement drinks to at least try to bridge the gap while we seek answers.

I know I probably should’ve been looking into her calorie intake before, but I’ve been trying to keep this low key. I don’t want this thing to evolve into an eating disorder and I wasn’t sure that teaching a child who doesn’t eat about calories was a good thing. The same goes with getting on the scales. I also don’t want her feeling bad about herself or thinking that she’s faulty in some way. I would love to be thin but the more I look into how she is, the more I’m noticing that she’s becoming like a car running out of fuel. Moreover, I’m also realising that whatever the elephant in the room might be, identification, classification and treatment are beyond my capabilities.

I don’t know whether my awareness has just increased but she’s seemed worse this last week. She’s come home from school really tired and lethargic a few times. Feeling completely confused, stressed and perplexed; I didn’t even know which doctor to call or whether I should go to emergency or what. I’m trying to limit her doctor’s appointments and so I needed to pick the right doctor out of the hat. After flapping around all week and getting some good advice from the pharmacist and some food replacement drinks, I finally rang her paediatrician yesterday. I was trying to get my story out and convey some sense of urgency but didn’t need to. She gave me an appointment this very Monday. The only thing worse than having to beg and plead for an emergency appointment is being offered one. Then, you know that your worries are really something to worry about.

At the same time, I am so relieved!! Whatever we’re dealing with, we are no longer alone. Our concerns are being taken seriously and help is on its way. Our paediatrician really is excellent and I know he’ll help us navigate whatever this is and find a clear path. We are also fortunate to know two people with delayed gastric emptying, who have been very helpful and supportive. I also expect we’ll be seeing a dietician and other health professionals who’ll enlighten us.

I’m sure that now we’re starting to expose the elephant in the room and reveal it’s true identity, it’ll either take off straight away or deflate from a 4,500 kilo elephant into a mouse-sized ornament.
I sure hope so!!

Thank you to all those of you who are supporting and encouraging me through this journey with our daughter. It is much appreciated and reflects so positively on the bonds of friendship forged through blogging and even though we have never met face-to-face, that we are connected, if not becoming good friends.

Love and blessings,

Rowena xx

Sources

http://www.elephantconservation.org/stay-informed/just-for-kids/

Catching the Palm Beach Ferry – the Perfect Antedote for a Rough Week.

Last week might not have been the worst of times but it certainly wasn’t the best of times either.

No matter how medical tests pan out, they still put you through an emotional and organisational wringer. Moreover, I won’t even mention what we all could have accomplished if we hadn’t spent an eternity on hold… waiting. That just adds stress on top of stress because you can’t help thinking about what else you could be doing if you weren’t still waiting. After all, didn’t you know? Life’s a beach!

So far the test results are encouraging but we are waiting for the final results. Make that still waiting!!

Anyway, whenever you are going through a trial, you have to do the whole ying and yang thing and somehow balance up the good and the bad. You need to look after your mental health as much as your physical health…even when someone you love is seriously ill.

Ettalong Beach

Ettalong Beach

So after a rough week, we needed a great weekend. The kids were already been booked into scout and cub camps and were looking forward to extreme fun as well as pushing their physical limits.Geoff and I were off to Palm Beach together until fate intervened. Miss needed a taxi and so Geoff stayed home. I did reconsider Palm Beach but I really needed a break and we all know what the home front’s like. It’s a constant battle against an insatiable, demanding beast which is constantly sucking you dry. So as much as I hate to admit it, I took off on the Palm Beach Ferry looking forward to drifting off into a blissful state of suspended animation in Palm Beach and I wasn’t looking back.

Ettalong Wharf looking towards Booker Bay

Ettalong Wharf looking towards Booker Bay

Meanwhile, on the way to the ferry, Geoff’s short straw was cut even shorter when his mobile rang and he was off to work for a few hours. What have I mentioned about Mrs Murphy’s Law?

So there I was at Ettalong Wharf about to set off on my own private adventure, which, as it turned, it wasn’t going to be all rest and recuperation, after all.

What I love about traveling or going out solo is that you can meet an amazing cast of characters you’d never meet otherwise. When you’re with the family or group, while it’s fabulous to enjoy each others’ company and do things together, you also become insular. Immersed on your own private island. But Rowie was out of her chrysalis and my wings were just about dry. This repressed social butterfly was about to take off!!

Boarding the ferry.

Boarding the ferry.

Before even boarding the ferry, I met a wonderful group of 20 somethings who made me their  Paddington Bear.  I didn’t even need to lure them with marmalade. You see, with my broken foot back in the boot again and staggering along with my walking stick and my bag, I didn’t even need a sign saying: “Please take care of this bear”. It was pretty obvious I could use a hand. My new-found friends chivalrously carried my suitcase onto the ferry and even invited me to sit with them in the crew section, among the privileged few, which I might add, did not include the buck’s party wandering around the ferry wearing green aprons. Suddenly, I was part of a mobile party and it was such FUN!!!! Surrounded by a kaleidoscope of outfits, fake and real tans and short skirts. Actually, make that short short or some instances, even short short short. It was time to  Party!!!!

Traveling in style with my absolutely fabulous ferry friend, Emma. Happy Birthday!

Traveling in style with my absolutely fabulous ferry friend, Emma. Happy Birthday!

Fun and compassion…such a wonderful mix.When you’re having a bit of a rough trot, you don’t want all doom, gloom or even too much sympathy. There’s no better therapy than a laugh and experiencing an unexpected, spontaneous act of human kindness and the hand of friendship, especially from strangers from the distant galaxy of youth. It was just what the doctor ordered!

After all, don’t you sometimes get sick of being a grown up and I didn’t realise the Palm Beach Ferry could also be a time-machine.

Heaven!

Heaven!

But my new found friends, weren’t just about partying, looking good and having fun. They were such caring, compassionate and thoughtful people who really touched my heart. They had time for me. Included me.They even carried my bag to the bus stop, which also involved a lot of trust on my part as well. That’s gives an insight into the bond we’d forged on a very short ferry ride. I know this meeting wasn’t a random thing. That it was destiny. Meant to be. Serendipity.

At this point, we parted ways as I waited for the bus but the party continued. Another gaggle of twenty somethings were spilling over the footpath and onto the road. Putting my “mum hat” back on again, I felt like shepherding them off the road and back onto the footpath, although I said nothing. I don’t think you needed any testing apparatus to know they’d had more than a few drinks and I could sense the Palm Beach locals would be eying off this unruly mob thinking “@#$% Coasties!!” However, at least these characters knew how to have a good time and as long as they stayed off the road, they weren’t hurting anyone.They were all heading off to Newport Arms, which is abut a 15 minute bus ride from Palm Beach. The Newport Arms is one of Sydney’s most popular hotels or pubs and is quite legendary.

A disapproving Mrs Mangel from the hit drama series, Neighbours.

A disapproving Mrs Mangel from the hit drama series, Neighbours.

The bus pulled up and I sat opposite an elderly lady who was already sporting a few frowns and other disparaging expressions. If you ever used to watch Neighbours going way back to the beginning, there was Mrs Mangel and this woman was a white-haired impersonation a she sat in her seat so stiff and almost frozen,  The party revelers, including the bucks party, also clamber on board. By now, they were under the weather, rowdy and rambunctious. No sooner than the bus starts moving and the bucks start belting out iconic Cold Chisel songs, providing live, on bus entertainment. I loved it. Soaked up every minute of it. Great memories.

Cold Chisel: Cheap Wine & A Three Day Growth: https://www.youtube.com/watch?v=cFKxbr4_-Vc

Jimmy Barnes: Working Class Man: https://www.youtube.com/watch?v=tQl8_u-JKew

However, to say “Mrs Mangel” was looking “Uncomfortable” would be such an understatement. Evidently, she found the echoing sounds of fun and jovial happiness. as torturous as fingernails scratching down a chalk board. I could sense the pain in every cell in her body. It was etched across her face and she’s so incredibly uncomfortable. She yearned to get out of here. Get those louts off the bus so she could return to civilisation. She was really suffering in serious pain and looking across to me for some kind of understanding or even salvation. I haven’t made it to the hairdresser for awhile so the grey is showing but being more mature doesn’t make me a wowser. That said, I shouldn’t judge. I often struggle with loud noises myself but juxtaposed against everyone else on the bus, who were squeezing the fun out of life, it really looked like she’d swallowed a bag of sour lemons.

This reminded me of something an elderly friend once told me. She said that her husband had “decided to get old”. At the time, that struck me as odd. After all, he was in his late 80s and a returned serviceman, At that grand age, he was old. However, I am coming to realise that there is a difference between getting old and feeling old. Feeling old is a choice.My grandmother said much the same thing. That she’d look in the mirror and she didn’t know the old woman staring back at her. Quite remarkable really. At least, I used to think so until I started looking in the mirror and started seeing glimpses of photos I’d seen of my great grandmother looking back at me when I still feel 25 on the inside and I suspect I will feel forever young: www.youtube.com/watch?v=rQi8wEHMm5Y

I was barely on the bus and I was off, leaving the party behind as I headed for a weekend of silence, solitude and serenity alone at Palm Beach. Almost immediately, despite the animated screams from the kids playing in the pool next door (this time it was my turn to feel somewhat tortured), I fell into a deep, comatose sleep and began to dream.

Sunset, Pittwater, Palm Beach.

Sunset, Pittwater, Palm Beach.

When I finally woke up and the sun had all but set, I realised that the screaming had finally stopped. I’m not talking about the kids screaming in the pool but the screaming in my heart and in my head. I had only been vaguely conscious of the scream before but now that it had stopped, I could hear it so clearly and feel its pain. Yes, I’ve been screaming, silently, unconsciously screaming for some time but it was only now that it had stopped that I could ironically hear myself. The touch of human kindness on the ferry had released me. Set me free. Probably not forever, it was only intermission but it brought relief.

Now, I could feel myself slowly starting to stretch back into my full height, gaining strength and being able to stretch my wings enough to fly, instead of being curled up into a self-protective ball so I could just survive.

It was then I remembered a childhood song, which Google (my not so secret best friend) reminded me came from Romper Room: https://www.youtube.com/watch?v=aIRu8-5Nyek

Bend and stretch

reach for the sky

There goes Jupiter,

There goes Mars

Stand on tippy toes

Oh so high!”

I would love to hear how the love and compassion of a stranger has touched you. Please share!

Love & Blessings,

Rowena

Diagnosis: A Rough Week!

Just because things could always be worse, that doesn’t mean they couldn’t be better! Or, that you haven’t been through some kind of traumatic “Beam me up Scotty” experience where only bits of you have returned back down to earth. You’re feeling strangely fragmented and more than a little bit shell-shocked.

You should never have to apologise for these less than spectacular moments just because they don’t turn out to be something major. You are still having to go through the same hoops and they aren’t usually much fun in themselves either.

At the same time, these stresses can create post-traumatic growth because even though you might feel dreadful at the time, you are actually becoming “Tonka tough”. Through building up resilience, hardship adds new whiz bang state-of-the-art equipment to your personal tool box so you can fly and literally soar beyond all the crap and off into the blue yonder. That is, once you’ve cleared the ground.

“The heaviest of burdens crushes us, we sink beneath it, it pins us to the ground. But in love poetry of every age, the woman longs to be weighed down by the man’s body.The heaviest of burdens is therefore simultaneously an image of life’s most intense fulfillment. The heavier the burden, the closer our lives come to the earth, the more real and truthful they become. Conversely, the absolute absence of burden causes man to be lighter than air, to soar into heights, take leave of the earth and his earthly being, and become only half real, his movements as free as they are insignificant. What then shall we choose? Weight or lightness?”
― Milan Kundera, The Unbearable Lightness of Being (somewhat chauvinistic but still a good quote.)

We’ve had a pretty grueling week taking our 9 year old daughter to have a Barium Meal and an endoscopy to test for things like coeliac’s disease and other gastric nasties  So, it’s no wonder I’m feeling awful and I’m left wishing I’d snatched the anaethesetic mask off her face and breathed deep, so deep that I’d still be asleep. Not that I want to make it permanent. It’s just that after all this stress,  a good dose of anaethesetic is just what the patient’s mother has ordered.

“Name…Date of Birth…” Asks the nurse.

Damn! It’s pretty obvious I’m not a 9 year old girl.

Neither of these tests were nice or something you put your child through unless you’re pretty sure there’s  a problem. After all, they’re not an ice cream taste test challenge. In the case of the Barium Meal, it involves feeding a little person who is quite the non-eater  yucky, chalky tasting stuff. In the case of the endoscopy, they’ll be shoving a camera down into her stomach on a long tube. On top of that, there’s also the scariness of going into hospital and her terror that if she’s coeliac, that she’ll have to be gluten free and “never be able to eat party food ever again”. I don’t think the whole thing of having a camera fed done into her stomach had even sunk in and we certainly weren’t pressing the point. She was being so brave and courageous but she did want it over and done with.

As I said, you don’t put your child through all of that without very good reason. Our Miss is quite underweight and has trouble eating more than just a sparrow-sized meal. I have written sagas about sandwiches returning home untouched. That’s annoying and wasteful. However, the real gripe with all of this, is the shocking bad moods as her blood sugar plummets and Miss Jekyl returns home. These mood swings alone justify a swag of medical tests as they can be very draining.

By the  way, I should also mentioned that I’ve been through these tests myself. I can’t really remember the Barium Meal and I just remember the post-anaethesetic haze when I woke up from the endoscopy. I’ve been through much worse and they really are relatively minor tests but it’s very different watching your 9 year old daughter going through it than doing  it yourself. Indeed, so much worse that I really could have used that anaethesetic.

“for there is nothing heavier than compassion. Not even one’s own pain weighs so heavy as the pain one feels with someone, for someone, a pain intensified by the imagination and prolonged by a hundred echoes.”
Milan Kundera, The Unbearable Lightness of Being

Anyway, the tests began with the Barium Meal swallow on Monday. Needless to say, I worked myself up into quite a frenzy, wondering if she’d actually swallow the stuff or stubbornly refuse or even throw it up? I expected tears, protests and the biggest tantrum ever recorded and was truly bracing myself for the worst.Consequently, Geoff took the day off work and came with us and I’m sure that helped to maintain the peace because she was fine and handled it all like her mother.

Then, we had to wait for the results..

Stick any sort of probe into your body’s dark and mysterious innards and you have to be prepared that they’ll find something you might not want to be found. Now, I’m not talking about that secret pot of gold you buried in there years ago or other forms of hidden treasure. I’m talking about all those potential nasties which could be lurking in your body that you don’t want to know about. You have to be prepared that one of these has moved into your body and may not be willing to leave. Of course, Google fuels all these fears better than kerosene hurled on an open fire, lading to all cyberchondria is all it’s numerous mutations.

For our daughter,  the Barium Meal test was looking for structural anomalies such as a twist in the oesophagus. I quickly decided that we didn’t want this…especially when I read that the appendix can also be in the wrong place and need to come out as well. All of a sudden, I pictured our precious baby girl being carved up like a lamb roast as they seemingly rearranged and extracted her insides. My goodness. I quickly exited that diagnosis. Yes, we were definitely not having that…not that you can pick and choice your diagnosis or its severity but we all like to think illness is like a shopping list and we can have some degree of choice about which diagnosis we put in the trolley. Ha!

When it comes to medical test results, there’s the good news, the bad news and the inevitable inconclusive question mark. Obviously, we all want the good news but if everything was fine why was there a need for the tests in the first place? As long as there’s effective treatment, the bad news may not be quite so bad as it first seems if the problem can either be fixed or managed. However, the more I think about it, the inconclusive question mark might just be the worst result of all. Being neither good nor bad, this can easily fall into the rare disease category where you start hearing phrases like: “we don’t really know” and “I’ve never seen this before.”

Trust me! I know all about that!!

Anyway, the Barium Meal test went well and was relatively uneventful, although she did complain about the taste.On the other hand, she said that the x-ray equipment was great fun because it twirled her around. That was an unexpected joy so you can’t predict how these things are going to pan out!

The results were great and came back without a glitch!!

With Thursday being the endoscopy down in Sydney and a hospital admission and all, I just wanted Wednesday to go smoothly without any complications and for everything and everyone to leave us alone so we could be prepared. Of course, this is almost like an invitation for all those nasties concealed in Pandora’s Box to suddenly fly free and attack and that’s exactly what happened.

Our daughter was feeling sick and so she stayed home from school. Our son, who is notorious for being unable to find his shoes, was missing one shoe and saying he couldn’t go to school. What’s more, he was really starting to rev up with something of an Oscar- winning drama performance  and was refusing to look for the absent shoe  and was leaving me to do all the hard work, while throwing out incendiary devices such as: “You hate me!” Did I mention that he was still playing Minecraft through all of this? I was fuming!!! I was pulling out every trick in the book to get him to budge and eventually he moved. Found his shoe in a completely different room to where I’d found the other shoe and he was off to school. That drama was frustratingly stressful and very, very draining.

After a recharging cup of tea, the day was proceeding well and we were mentally psyching ourselves up for the big day.

That was until the phone rang. It was the school. I don’t like it when the school rings because they obviously never just call up for a social chit chat. There’s always a drama involved and while sometimes it’s simply a one Act play. More often than not, we’re talking the full four acts and an encore performance.

Mister had been hit on the head with a didgeridoo and wasn’t feeling well. Could I come and pick him up. What the @#$%?!!!! What were the chances?

It could only happen in Australia! Moreover, it could only happen to our son and at the most inconvenient moment. We specialise in statistically rare disasters in this house.

When you think about your child’s head doing battle with a didgeridoo,  being a hollowed out lump of wood, you don’t need much imagination to start seeing stars, concussion, a fractured skull, emergency brain surgery and,,,and…and…Oh yes! There’s also missing the signs of all of the above and we all know what that means.

I didn’t need to be thinking about taking our son of to Emergency with a suspected skull fracture not to mention bleeding on the brain the night before we’re taking our daughter off to hospital. I understand that parenting often involves a lot of multitasking but seriously this is all a bit much for even us to handle at once. We’re only human. Dear Lord, please remember that. We’re only made of flesh and blood and we can only take so much.

However, he refused to go to the doctor and perked up and went off to the cafe with my mum and Miss, while I went and had my blood test in preparation for my specialist appointment. Then I was off to my violin lesson and a talk at the high school. It was a very busy night…especially when, as I said, we just wanted peace..peace almost at any price!!

But this is my life we’re talking about and it is heavily influenced by Mrs Murphy’s Law. That’s right. Mrs Murphy says Murphy was an optimist.

Staying up way too late again writing on the blog, I was just getting out of my chair to go to bed when my good ankle crunched and I was in agony. Not as bad as when I broke my foot but certainly up there. I started to wonder what the chances were of breaking the 5th metatarsal on the left foot while the right foot was still healing? Then again, there’s odds and statistics and then there’s me.

My mother often says we were born underneath an unlucky star and as much as I try to prove her wrong, sometimes I succumb. Putting my good foot out of action the night before Miss goes to hospital…this was no conspiracy theory. Bad luck not only follows me. It eats me on toast. Not that I’m complaining or whingeing. The situation is what it is but as much as I have rotten luck, I’ve had so much experience fighting back and overcoming all this crap now, that I’ve developed a fight back routine which not only puts me back in the box seat. It also makes me better prepared for the next round.

So, after somehow getting through Wednesday, it was Thursday and we were off to Sydney to take Miss to hospital for the endoscopy.

By this stage, I’d all but decided our daughter has coeliac disease and I’ve been trying to get my head around becoming gluten-free. She has been very upset about the possibility of having to be gluten free and had a complete meltdown over never being able to eat party food again. These are big things for a kid and not easily dismissed with the usual Australian cop out: “she’ll be right, mate” and I didn’t try either.

Rather, I suggested that she try not to think about it too much and get busy doing something else and if she’s gluten free, we’ll deal with it then. I also reminded her that other people we know are gluten free and they still have yummy foods. It’s not the end of the world. Actually, coeliac’s disease can be quite serious but I didn’t want to stress that. From my experience, coming to terms with bad news is a bit like trying to eat an elephant. You’re best digesting it one mouthful at a time and not in one, painfully large gulp. This, of course, is the danger of Googling your symptoms and doing a selfie diagnosis. You can read the very worst cases and swallow too much information at once and even make yourself terminally ill!!

We are still waiting for the final results. So far they haven’t found signs of coeliac’s  but it seems her stomach may have delayed emptying. We’ll just have to wait and see, which I hope means whatever it is, it isn’t too severe.

Meanwhile, although I’m not superstitious but it’s Friday 13th today and of course the bad luck didn’t leave me alone. I might not have seen that wretched black cat cross my path but I know it was there. Otherwise, how would you account for yet another nasty fall this week and my right  foot back in the boot?

That’s right. The boot is back on the right foot.

Yes, I am feeling annoyed about it all and just because these falls are frequent, it doesn’t mean they don’t hurt even if I’m smiling. That I don’t need a hug or a bit of TLC. I might be strong but I’m still human and I bleed.

Do you have any experiences you would like  to share? Living with ongoing, resistant adversity isn’t easy though we triumph and inspire. If you are also traveling in this boat along with us, we send you our love, compassion and understanding. Take care!!

Love & Blessings,

Rowena

PS: BY the way, I just found out that it is ironically National Coeliac Awareness Week in Australia 13=20th March. See here for more information:

http://www.coeliac.org.au/

Sticking Labels Where They Don’t Fit…

When it comes to sticking diagnostic labels on people, I’ve always been in favour of diagnosis and treatment but I’m starting to change my mind.

Instead, I’m thinking that we need to be more cautious about where we start sticking labels, especially when those labels might have consequences down the track.

The American Psychiatric Association will be releasing the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) in May 2013.

Part of the changes to the new diagnostic criterion is the reclassification of Aspergers into the broader umbrella term “autism spectrum disorder,” which will now apply for all children and adults with some form of autism. This means that people with a sprinkling of traits (ie the equivalent to a sprinkling of hundreds and thousands on a serving of ice cream) will be in the same camp as those with severe autism. This involves a huge shift in how people currently defined as “Asbergers” will be placed or “categorised”. I also suggest that people who might have accepted or even celebrated being “aspy”, might prefer things just the way they are. They are and always have been , their own people.

This new classification fails to address society’s understanding of what it means to be “autistic” and how individuals or parents might feel when someone who is “a bit different” is labelled “autistic”, when quite clearly they are not. It is also a huge leap, especially in terms of social stigma, for someone who might be somewhat asbergersish and something of a  Sheldon from Big Bang Theory or perhaps an IT geek or scientist. With any diagnosis there is grief and there is no need to compound that grief by sticking on highly emotive labels which simply don’t fit.

It seems to me that this new umbrella terms is really going to make an already confusing mess, only more confusing and will turn people away from a diagnosis and in the process, away from possible help and understanding.

Labels are good when it enables people to get the help they need but I don’t believe that can happen with a one-size fits all diagnosis. It ends up becoming meaningless. It either waters down the serious difficulties some individuals experience or paints a fairly sociable kid as a loner.

It doesn’t work.

After being misdiagnosed myself with osteo-arthritis myself which has a totally different line of treatment to my auto-immune disease, I know that you have to be very careful when you apply labels and try to make them stick.

Just ask my dog!

DSC_4614

What do you think?

Best wishes,

Rowena