Tag Archives: medical

Playing Doctor and Patient.

After yesterday afternoon, I’ve concluded that playing doctors and patients is over-rated. That as much I enjoyed playing it as a kid (and without any kind of innuendo), that it’s no fun in real life…especially when your child has had an accident. All of a sudden, you need to be the strong one, her rock, when you’re nothing but jelly. You can barely breathe. Yet, your alter-ego is supportive, loving, encouraging.She’s holding her hand, exuding calm, while you’ve completely freaked out.

Yesterday afternoon, our daughter was walking back from the station when she walked into a pole quite hard. Her glasses cracked and the edge of the lens sliced into the edge of her eyebrow. It was a nasty cut and needed immediate medical attention.

Meanwhile, I was stuck in the queue at the supermarket. All I needed, was a carton of eggs, but I’d grabbed a few things while I was there. Of course, every man, woman and dog had the same idea.So, that’s where I was when my daughter had her accident and a complete stranger found her and stopped to help.

When I rang her from the queue, her little voice was sobbing. Her glasses were broken. Her head was bleeding and she was at the medical centre. Meanwhile, my husband calls. Our son had rung him and said she’d been taken off to hospital.

Forget Friday 13th. Fridays seem to be bad luck around here. Two week’s ago, we were at Emergency with our son.

Unconsciously, I switched gears faster than formula one driver, Sebastian Vettel. Mummy was on the way, siren blaring. I was given a superhero’s welcome. Mummy was there to save her injured baby bird.

Ouch! The cut was nasty and obviously needed stitches and I started wondering about plastic surgery. Ow! My baby!

The staff at the medical centre were beautiful and so caring, looking after Miss like their own and the woman who’d brought her in, had done the same.

Yet, we weren’t going home yet.

The wound needs to be stitched and Miss doesn’t want to be stitched.

She’s terrified and shaking like a leaf.

Then, the doctor starts talking about “numbing” the area.

Note she doesn’t mention the “n” word and silly me starts thinking she’s talking about applying some form of cream you rub on.

We’re given our options. She could get stitched up there or we could could take her to Emergency where they could also give her happy gas to ease the process. She was also told that numbing the area was going to be very painful but it would only last 10 seconds. We’re talking a needle under the eyebrow.

It was a grueling couple of minutes while she decided and fortunately, she decided to stay put and be brave. I asked her if she had her slime with her, which she could hold to calm herself, andwas relieved that helped. Like fidget spinners, making and fidgeting with slime have become a craze.

Four stitches later, we were on our way. On the way to buy her an ice cream. I’m a firm believer in food therapy. Then, we picked my husband up from the station. He could drive home, and I could pass the baton. Dad was in charge, and I could fall in an exhausted heap.

This morning her eye was all swollen and she could barely open it up. It wasn’t too purple, but purple enough.

This incident has also highlighted the possibilities with her travelling a long distance to and from school. I am also wondering whether I should be meeting her at the station again. It’s only a short walk to the shops and you’d think nothing could happen, but evidently it can and it has. However, it’s also important for her to gain independence and stand on her own two feet.

Of course, things could have been a lot worse. It’s terrifying to think how close the gash was to her eye, but it wasn’t. Yet, it was still traumatic. I still feel shaky inside. Indeed, I had a big sleep today. Wrapped myself up in my blankets and quilt with the electric blanket on. I desperately needed to shut the world out for a bit. Put myself on the charger.

I might be on call 24/7, but even Mummy is human.

Have you ever had an experience like this as a parent? What is your story?

xx Rowena

 

Holding Hands: Flash Fiction 11th Nov, 2015

Today, I’ve joined in a weekly flash fiction challenge with Charli Mills from Carrot Ranch http://carrotranch.com/

The prompt for November 11, 2015 prompt: In 99 words (no more, no less) write about a place of comfort that is a refuge. Have fun with it, like a pillow fight between best friends at a slumber party or newlyweds in search of the perfect mattress. Or you can go dark and write about unusual comforts, like a bad habit or a padded cell. Play with the idea of comfort and refuge.

Respond by November 17, 2015 to be included in the weekly compilation. Rules are here. All writers are welcome!

 

“Mum, it’s time,” whispered a familiar voice.

Yet, Margaret couldn’t bear to let him go. Not yet! There wasn’t much left of Jack but she could still hold his hand.

Now, as their entire lives had shrunk into this infernal hospital room, holding Jack’s hand was it. All they had left.

She was meant to go first. He was the strong one.

That was before the heart attack… the dreadful resuscitation. Such a mistake but had given them more time.

Now, it was her turn to hold his hand.

Yet, when she returned from the toilet, he was gone.

xx Rowena

 

 

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

When The New Yorker Came To Sydney.

Last week, I was absolutely stoked when I found a copy of the New Yorker when I took our daughter to her doctor’s appointment, instead of the usual trashy magazines. For a New Yorker, this would be hardly surprising but when you’re in Sydney, Australia, finding a copy of The New Yorker is a rare treat. It was time to celebrate!

Who hasn’t experienced the joy of being camped at the doctor’s waiting so long you’re putting down roots and all you have is a stack of trashy magazines for entertainment?  I’m sure the world over there are those familiar looking piles of trashy magazines, which should have been pulped long before publication. You know the sort of stuff I’m talking about where those flashy, glossy pages are smothered in the latest “Kardashian Krisis” and other celebrity crap. If you’re really lucky, there might also be some token National Geographics but don’t hold your breath!!

Knowing what to expect, I always BYO. Whenever I head down to Sydney for my specialist appointments, I usually take a choice of two books, a handful of pens and a writing pad to capture fleeting threads of inspiration. I must say that on some occasions, I’ve been bunkering down to write what seems like my entire life story, while I wait. It is nothing to wait for 1-2 hours for an appointment and indeed, there is a sign telling you to allow half a day. All this endless interminable waiting is all for a fleeting 15-30 minute appointment. While this might sound pretty dreadful, especially if you are seeing multiple specialists, it is what it is. I see my specialists for free so I’m not complaining. I just come prepared.

However, I can sure pick the newbies turning various shades of red and emitting shots of steam through their beetroot red ears while they openly complain that “being sick is a full time job”. Most of them could well be transferred to Emergency for immediate anger management. That said, being diagnosed with a serious disease is hard enough. Being forced to spend those precious, rapidly ticking away last minutes of your imminently evaporating life in the bland boredom of a doctor’s waiting room staring at white walls camouflaged by fancy prints, is enough to push even the most mild-mannered Clark Kent over the edge!! Trust me! I know!

I don't think hospital was on Dr Suess's list.

I don’t think hospital was on Dr Suess’s list.

Of course, nobody includes being stuck in a doctor’s waiting room on their bucket list when they have 24 hours to live! Not on your life!!!

However, all my expectations of waiting room literature were turned around last week when I took our daughter to her specialist appointment. Much to my delighted amazement, I found a copy of The New Yorker on the very top of the pile. Wow! I was thrilled. Indeed, “I had chills.  They’re multiplying and I’m losing control…” https://www.youtube.com/watch?v=J01QPxZFlw4

A cartoon from the New Yorker, which  I photographed on my phone.

A cartoon from the New Yorker, which I photographed on my phone.

The New Yorker is a rare breed in Australia so I was almost thankful that the doctor was late. I was glued to the pages and really had to peel myself away. Indeed, I was even taking photos of the funnies with my phone and seriously hoping the doctor didn’t catch me in the act. Of course, I was doing this in the name of serious journalism…snapping gourmet morsels to feed my blog!

The Statue of Liberty welcomes this adventurous Aussie Dreamer to the Big Apple.

The Statue of Liberty welcomes this adventurous Aussie Dreamer to the Big Apple.

For a few fantastic moments there, I felt myself being transported over the Pacific Ocean touching down for a refueling stopover in Hawaii to meet Max the Dog and indulge in a bit of Hula. Then, I was on a bit of a stop start journey through LA, New Orleans, Washington and finally touching down in New York in such a manner that I didn’t get my Wonder Woman cape caught on one of those spiky bits on the Statue of Liberty.

Just as well I didn't start singing and dancing in the waiting room! I have absolutely no shame!

Just as well I didn’t start singing and dancing in the waiting room! I have absolutely no shame!

I’m in New York and I can even hear Frank Sinatra singing New York New York: https://www.youtube.com/watch?v=K-0nNWOKK2Q

Though still sitting in the waiting room, I’m a  real New Yorker or at least a New Yorker with an Australian accent. Well, make that a sedated New Yorker with an Australian accent. Being a rather slow walker who doesn’t wake up before midday without intravenous caffeine infusions, I’d look like a comatose zombie among the fast-paced New Yorkers.

But then the dream shatters…

The door swings open and all my fantasies of New York are put on hold. The doctor is ready and it’s now time to discuss why my daughter doesn’t eat.

Humph! No more New York…New York…New York!

I’ve touched down with a painful thump and it’s time for a brutal reality check!!

New York…LA,Honolulu,Sydney, Wahroonga….Can’t keep the doctor waiting!

The door closes.

Have you ever been to New York and have any stories to tell? I am learning the fine art of living vicariously.

xx Rowena

 

Why Stay Calm, When You Can Really Panic???!!!

Keep Calm and Carry On might work well if you’re a rock or the proverbial brick. However, if your passions are somewhat more easily aroused and your blood starts to boil and explode despite going to your happy place or bathing in the Pool of Siloam, welcome to the club. Feeling rather aroused, agitated and more of an Incredible Hulk than a Bruce Banner, I have tried going to my happy place of calm. Indeed, I’ve tried locking myself inside and throwing away the key. However, I keep returning to turbulent seas, which are much better depicted by  Munch’s The Scream. Indeed, if only I could scream, I’d feel better.

The reason I’m feeling all wound up and tense is that our daughter will be having tests next week to investigate some issues with reflux and being underweight. She will be having a barium meal and endoscopy to check things out. These tests aren’t difficult, traumatic or life-threatening and neither are the potential issues we’re investigating. Miss is largely well and energetic but she barely eats and is about half the size of many of her average-sized peers. If this is who she’s meant to be, that’s great. I would love to be almost that lean and she can be the real fashionista. However, there are a few ripples that concern me…as well as my gut intuition.

Dr Suess

All the same, I’m still wound up and agitated about it all and feel like something sinister is running after me and I just want to whack it on the head and destroy it completely…a bit like Basil the Rat in the final episode of Fawlty Towers.  https://www.youtube.com/watch?v=mv0onXhyLlE

I'd love to put an ad in paper and get rid of my health issues.

I’d love to put an ad in paper and get rid of my health issues.

Where is a good cannon when you need it?

Of course, it didn’t help when the doctor’s secretary called out of the blue offering me an appointment “tomorrow” and then the doctor telling me he can do the endoscopy next week. I know I said it was urgent before Christmas but after being in the deep freeze for so long and not thinking about it, suddenly it’s all systems go and I’m struggling to defrost. Despite my best efforts to self-calm, I am well and truly freaking out!!

You would probably imagine that after all my medical issues and treatments, that our daughter’s tests would be a walk in the park. I’ve had brain surgery twice, chemo, an arterial blood test. I have lung function tests where they even block off my breathing for a second or two. Hey, I’ve even given birth to two children, albeit via the zip. I also had blood transfusions every 3 weeks for 5 years where they probed around through dry river beds and often had a few jabs before they found a decent vein…ouch! I also had my teeth cleaned at the dentist lately, which was probably more painful than any of this. My teeth, like the rest of me, are over-sensitive.

Oh yes! When it comes to medical trials, I’ve definitely earned my stripes. I am very, very resilient!!

However, there’s a huge difference between being the patient and being the patient’s Mum.

No parent likes seeing their child experience any kind of discomfort or pain but for me, there’s also this sense of responsibility. An awful, sinking feeling that I’m leading my precious, baby lamb to the slaughterhouse, especially as we’re not even 100% sure that there’s a problem. Of course, that would be the ideal outcome. We don’t want them to find anything. However, that also raises the question of whether the tests were needed in the first place and whether I’m putting her through all of this for nothing.

If only I could add this to the barium meal, Miss might drink it.

If only I could add this to the barium meal, Miss might drink it.

I mean getting a child to swallow the barium meal when she’s been known to refuse to chocolate cake is going to be no mean feat. Indeed, Dad will be coming with us for moral support. It reminds me of an old ad for Quik we had as a child: “Drink it Freddy! Drink it!” www.youtube.com/watch?v=-P-OFW3ZDB4

Am I just being an overstressed, over-anxious Mum? Am I so used to being overweight that seeing ribs on someone else seems odd and verging on starvation just because I’m so well padded?

Moreover, while we’re on the subject of overly anxious parents, Munchausen by proxy syndrome (MBPS) comes to mind. MBPS, which is also known as “medical child abuse,” involves the exaggeration or fabrication of illnesses or symptoms by a primary caretaker. It was named after Baron von Munchausen, an 18th-century German dignitary known for making up stories about his travels and experiences in order to get attention. “By proxy” indicates that a parent or other adult is fabricating or exaggerating symptoms in a child, not in himself or herself.

However, when it comes to attracting medical attention, I don’t need anymore.

I don't think hospital was on Dr Suess's list.

I don’t think hospital was on Dr Suess’s list.

Moroever, I’m with Dr Suess. When he wrote: “Oh the places we can go!”, he wasn’t talking about hospitals or doctors’ waiting rooms!

All these things aside, our daughter’s refusal to eat does put quite a lot of added strain on family meals. Under duress, she’ll eat a Weetbix for breakfast. For years, her sandwiches have come home from school untouched, day after day, year after year. She eats an amount of food the equivalent to two match boxes for dinner and often complains about feeling full or sick. Even as a baby, she refused to eat and her weight has hovered around the bottom 5-10% most of her life. The fact that she has remained on the same trajectory and is relatively healthy and active are very encouraging but there’s still this nagging doubt.

I just need to make sure. Know I have covered the bases but not put her through exhaustive, unnecessary testing. Despite my uncertainty, I do think that when you have concerns as a parent and that uneasy feeling in your gut, you need to put some trust in your own judgement and intuition. Investigate. Ask questions. My daughter’s doctor also thought there was enough evidence to take the next step and refer us on. After all, these symptoms are concrete, measurable and aren’t the product of my over-active imagination…the stuff of a medical, fantasy novel published by Hypochondriacs Anonymous. To be honest with you, I’d much rather be a hypochondriac than really be sick.

To some extent my approach, has been informed by my own experience. When I was around 25, I was diagnosed with Dandy Walker Syndrome (DWS), a variation of hydrocephalus or fluid on the brain and had brain surgery to insert a shunt to treat it. Our best guess explanation for DWS was my difficult birth. There were times where I’d had various tests and we came close to working things out but we always missed the next definitive step, which would have given us the answers.

I have often wondered how different my life would have been had the Dandy Walker been diagnosed as a child. Growing up, I always felt “different” and I think I always knew there was something and I really did try to work out what was going on. I turned to psychology to try to unravel these inner mysteries when in fact, the problem was organic, structural and all in the plumbing. I was teased and bullied and all but destroyed at times and it would have been helpful to have understood what was going on. Since I had the surgery, my coordination also improved and I could have been spared a lot of heartache.

On he other hand, I was very independent and  I traveled quite a lot with that harbour in my head. I traveled quite a lot within Australia, usually travelling on my own but meeting up with others on the road. All this travel culminated in a trip to Europe in 1992, after my parents gave me a 12 month open ticket for my 21st birthday. I stayed in Europe for 9 months, mostly living and working with a family in Heidelberg in Germany. To be quite frank, I doubt my parents would have funded that if they’d known about my head.

No! No! No! That would never have happened. I would have been way too precious. Wrapped in more layers of bubble wrap than a fragile porcelain doll, I would have been protected, sheltered and to be honest…as stunted as a bonsai. Not that all parents of children with disabilities closet their kids and when they do, perhaps not without due cause but having a shunt in your brain is a fairly major thing for a kid and they are renowned for blocking and being temperamental…particularly in years gone by. We’re not talking about having a broken toe. Brain stuff is at least potentially major.

I know my life would have been very different.

Perhaps, it is this awareness that even serious medical conditions can bubble along seemingly under the surface for many many years while only causing intermittent trouble, that has caused me to be vigilant with my kids’ health. That’s not to say that intuition is always right and that your worst fears will turn into reality but it is a reminder. Serious health complications can have relatively subtle symptoms (at least at the start) and prevention and early diagnosis can be life-saving.

That said, as I head towards our daughter’s medical tests, I am hoping that it’s all nothing or just something simple and easy to accommodate. I’d much rather be an anxious mother than having a sick child. Wouldn’t you?!!

By the way, thank you so much for listening and I would welcome your thoughts.

xx Rowena

PS I’d like to share Ronovan’s post on boosting your positivity. I need to revisit this myself: https://ronovanwrites.wordpress.com/2015/02/18/positivity-negativity-be-gone/

 

 

 

 

Chemo Brain…the Likely Culprit.

I just wanted to update you quickly after my appointment with my neurologist yesterday. While it’s quite cathartic to write humorous posts to deal with difficult situations, I felt I needed to stop being the clown and remove the mask.

The jury is still out on what’s causing my memory problems. It’s looking like chemo brain is the most likely explanation for my memory troubles and my neurologist has recommended eating lots of green leafy veggies, a multi-vitamin high in vitamin B but I also need to have a brain MRI and a neuro-psych assessment.

In case you haven’t had a neuro-psych assessment, it’s where a psychologist asks you a whole heap of questions like: what’s the name of the Prime Minister, count backwards by 7 and what’s the day of the week. Fortunately, they don’t ask you where you left your car keys or what you did with that school note last week. That said, some times even the day of the week could be problematic. Unless you’re Einstein, I’d say most of us don’t like the idea of someone tinkering around inside our heads.

Even if there is a medical justification for my memory troubles, I still don’t want to get the questions wrong. I have my pride and can still hear the humiliation of an entire classroom of kids laughing in my face. Growing up doesn’t erase the horrors of being picked  on at school and most of us have copped it at one time or another.

While I’ve done these tests before and can recall at least some of the questions, I’m trying to stop myself from rehearsing the answers:100, 93, 86, 79…

As much as I don’t want to make a mistake, it would be an even bigger mistake to cover-up my weaknesses. I’d ultimately only be cheating myself.

Meanwhile, I’m taking comfort that my writing is still going well and that I’m playing my violin and these are both mentally, if not physically, complex tasks. There’s still some sort of activity going on upstairs.

By the way, the brain MRI will check for the deadly brain virus with the long name I mentioned in my last post. Apparently, it’s statistically very unlikely: about 1 in 50,000. However, these days stats don’t appease my concerns. The chances of having dermatomyositis were much less at 100,000 to 1 and I struck the jackpot there. Once you have one statistically rare disease, the odds mean nothing.

The neurologist has also ordered some additional blood tests.

Meanwhile, while I’m waiting to get these tests underway, I’m self-medicating. Once you’ve been through chemo, a few bits of chocolate are absolutely harmless.

To read my post about cyberchondria click here: https://beyondtheflow.wordpress.com/2014/10/27/terminal-cyberchondria-yes-please/

xx Rowena

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