Tag Archives: medicine

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”

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

 

Brain Plasticity & Saving Two Australians on Indonesia’s Death Row

Frankly my dear, I do give a damn!!

When it comes to fighting for justice, I will personally stand up and be counted, even when the case is rather controversial. After all. it’s easy to have compassion for someone you love. It’s much more challenging when someone has a few prickles…or a past. Yet, sometimes our journey takes us down that road and we are forced to argue the points backwards and forwards inside our heads until we can make sense of it all and hopefully judgement turns to love.

I don’t know if the imminent execution of two convicted Australian drug smugglers in Indonesia has made International news. However, as citizens of the world, this case affects each and every one of us who believe in the sanctity and importance of justice and the capacity for humanity to change and redeem itself.

We are all called to stand up and fight.

The case I am referring to is the imminent execution of two convicted Australian drug smugglers in Indonesia: Myuran Sukumaran and Andrew Chan, who were part of the notorious Bali Nine. Since their conviction, these men have completely turned their lives around and deserve a second chance. I’m not saying that they shouldn’t be punished. Just that they don’t deserve to die.

Portrait of Andrew Chan by Myuran Sukumaran.

 

My justification for clemency lies in the science of brain plasticity or neuroplasticity. If you know anything at all about brain plasticity, you will know and understand that these men have changed the very physical structures of their brains through rehabilitation and are no longer who they were. That they are, indeed, very different men. After all, if you have a different brain, how can you possibly be the same?

Victorian Supreme Court Justice Lex Lasry , summed  this up well when he addressed the Melbourne vigil held on 18th February, 2014. Lasry had been involved in the case of Van Nguyen, the Melbourne man who was executed for drug trafficking in Singapore in 2005. Lasry said that he has visited Chan and Sukumaran in jail in Bali several times and was in no doubt the pair had redeemed themselves.

“The reality is that if Indonesia go ahead and execute these two men, they’ll be killing an artist and a church pastor,” he said.

“The drug traffickers have gone. The drug traffickers left in 2005. “4.

About Brain Plasticity

Neuroplasticity, also known as brain plasticity “refers to changes in neural pathways and synapses due to changes in behaviour, environment, neural processes, thinking, emotions, as well as changes resulting from bodily injury.[1] Neuroplasticity has replaced the formerly-held position that the brain is a physiologically static organ, and explores how – and in which ways – the brain changes throughout life.[1]

In The Brain Which Changes Itself, Norman Doidge M.D. a psychiatrist and researcher set out to investigate neuroplasticity. “He writes that the brain can change itself. It is a plastic, living organ that can actually change its own structure and function, even into old age. Arguably the most important breakthrough in neuroscience since scientists first sketched out the brain’s basic anatomy, this revolutionary discovery, called neuroplasticity, promises to overthrow the centuries-old notion that the brain is fixed and unchanging. The brain is not, as was thought, like a machine, or “hardwired” like a computer. Neuroplasticity not only gives hope to those with mental limitations, or what was thought to be incurable brain damage, but expands our understanding of the healthy brain and the resilience of human nature”. http://www.normandoidge.com/?page_id=1259

This brain plasticity isn’t just something for the laboratory or people experiencing chronic medical conditions or disability. It affects us all and is a more “scientific” explanation for what we have always known: “Use it or lose it!!”

To get an idea of how brain plasticity works, picture an old fashioned telephone exchange with all those cables plugged in. Our brain is built of these cables. So for example if we keep getting angry, those anger pathways will keep getting bigger and bigger just like exercising a muscle. Moreover, the bigger these pathways become, the angrier we will become unless we take action.

Conversely, each and every time we appease our anger and breathe deep, count to three whatever it takes, those neuropathways shrink and actually disappear. These are actual, physical changes in the structure of our brains. The brain map is different.

I have experienced these changes myself after undergoing brain surgery to treat hydrocephalus. I have experienced many changes but probably the most surprising is that I can actually play the violin and I now play in an ensemble. That takes some pretty complex brain and physical developments, which I never thought possible. I only took the violin up to help my daughter.

My argument is that through rehabilitation, Andrew Chan and Myuran Sukumaran have demonstrated that through such brain plasticity, they are no longer the men they were.

Therefore, as an exceptional case and while not dismissing the severity of their crime, these new men deserve a compassionate response…jail not execution!

This quote from US President John F. Kennedy sums it up well:

“The problems of the world cannot possibly be solved by skeptics or cynics whose horizons are limited by the obvious realities. We need men who can dream of things that never were.”

Background to the Bali Nine

Myuran Sukumaran and Andrew Chan were the ring leaders of a group of Australian drug traffickers known as “The Bali Nine”. On 17 April 2005, the Bali Nine were arrested for planning to smuggle 8.3 kg (18 lb) of heroin valued at about A$4 million from Indonesia to Australia. These men were no angels and heroin, as we know, is a hard core drug which destroys lives. Authorities must do whatever it takes to get heroin off the streets. While people do dispute the death penalty, they are not advocating a more relaxed after to stopping the trade of heroin.

Going back to the time of their arrest, I didn’t have any sympathy for the Bali 9. Due to the very publicised case of alleged drug trafficker, Australian Shapelle Corby, the severity of Indonesia’s drug laws had been front page news for some time. I might not agree with the death penalty but Indonesia’s tough anti-drug laws most definitely weren’t a secret.

Australian Shapelle Corby had been arrested in Indonesia on 8 October 2004 when she was found to have 4.2 kg (9.3 lb) of cannabis in a double plastic vacuum-sealed bag in her unlocked bodyboard bag. Corby was convicted on 27 May 2005 and sentenced to 20 years in prison by the Denpasar District Court and imprisoned in Kerobokan Prison. To this day, Shapelle maintains her innocence and there have been numerous theories about how the cannabis got into her body board bag. Her case became a “cause celeb” and during that media frenzy, the severity of Indonesia’s drug laws was made very, very clear.

From where I was sitting in front of the TV, you’d have to be a complete idiot or have a serious death wish to even consider smuggling drugs in or out of Indonesia. I know people talked about making their luggage more secure after Shapelle’s arrest. Indeed, I’d even be checking the paperwork on my prescriptions before heading to Indonesia…especially given the amount of pills I take in a week. They could easily be perceived as trafficking quantities!

Those were the sorts of precautions your average Australian traveler was taking when the Bali 9 were arrested. Nobody wanted to be another Shapelle Corby and we were leaving absolutely nothing to chance. The consequences were just too great.

Given the historical context, the Bali 9 did come across as a bunch of idiots who had earned themselves what’s known as the Darwin Award: http://www.darwinawards.com/ After all, they didn’t need to be Einstein or have some kind of mystical crystal ball to know what they were getting themselves into. They just needed to turn on their TV. Shapelle Corby’s face was everywhere. Remember: Shapelle Corby was arrested on the 8th October 2004 and on the 27 May 2005 she was convicted and sentenced to 20 years in prison. The Bali Nine was arrested On 17 April 2005, the Bali Nine were arrested right in the middle of Shapelle’s trial. You do have to wonder what they were thinking and if they were even thinking at all and certainly you would never expect these men to amount to anything much at all!!

That was then. This is now.

Self-Portrait by Myuran Sukumaran

Self-Portrait by Myuran Sukumaran

Fast-forwarding nine years, Myuran Sukumaran and Andrew Chan are changed men and are inspiring other prisoners and leading exemplary lives. These are not the same men who were convicted back in 2006. Their names might be the same and they are older versions of themselves but in terms of their soul, spirit, character and no doubt even the neurofibres in their brains, they are not who they were. Therefore, executing these men would be a great travesty of justice.

Victorian Supreme Court Justice Lex Lasry has long campaigned against the death penalty and was involved in the case of Van Nguyen, the Melbourne man who was executed for drug trafficking in Singapore in 2005.

 

Julie Bishop, Australian Minister for Foreign Affairs  outlined how much the men had changed when she addressed Federal Parliament on 12th February, 2014:

“Both men are deeply, sincerely remorseful for their actions. Both men have made extraordinary efforts to rehabilitate.

Andrew and Myuran are the model of what penal systems the world over long to achieve.

Successive Governors of Kerobokan Prison in Bali – whose prison has given Andrew and Myuran the opportunity to reflect and change – have testified to their remarkable transformation.

A decade on from their crimes, Andrew and Myuran are changed men. They are deeply committed to a new path.

Both men are paying their debt to society. With dedication and unwavering commitment, they are improving and enriching the lives of their fellow prisoners.

Andrew has completed a theology degree in prison. As a pastor, he now provides religious counselling and guidance to fellow inmates. On the day he received the President’s rejection of his clemency application, Andrew’s Australian lawyer Julian McMahon said he was nowhere to be found, for even at this moment of undeniable personal anguish, Andrew had taken time out to comfort a fellow inmate who was seriously ill.

Myuran – referred to by many as the ‘gentle giant’ – has nearly completed a fine arts degree in jail. He has had the opportunity to become an accomplished artist; his raw talent recognised and fostered by his friend and mentor, renowned artist Ben Quilty.

In prison, Andrew and Myuran sought permission from prison authorities and began an array of courses to benefit fellow inmates, and to prepare them for their return to society.

They have led extensive and varied arts, cultural and vocational courses. Some of their courses are aimed directly at drug addicts, equipping them with the skills to beat their addiction, saving their lives and giving them real prospects in the future.

Andrew and Myuran have raised money for fellow inmates’ medical procedures; for victims of Typhoon Haiyan; for Indonesia National Day festivities.

Indeed, such is the profound effect of Andrew and Myuran’s inspiring humility and service, their fellow prisoners have come forward to lend support, even offering to take their place in execution to President Widodo…

Their remarkable rehabilitation, and the circumstances of their arrest, has prompted five successive Australian Prime Ministers to make representations in their name. [2]

What Brain Plasticity Means For Chan & Sukumaran. Why Spare These Men?

If somebody completely turns their life around and becomes an entirely new and different person on the inside, should they still be judged and sentenced to death because of crimes they committed in the past? Although they have the same name and DNA, they are a different person and things become very problematic.

Would justice truly be served and can we as a global community just stand back in good conscience and do nothing to spare these men? Or, do we both as a society and as individuals need to do whatever it takes to prevent such a tragic and unjust loss of life?

The answer is a resounding “yes”!! After all, two wrongs have never made a right!!

Although I have never met these men and I certainly don’t support the use or sale of such drugs, there is such resounding evidence that these men have significantly and are now dramatically improving the lives of those around them as well, rehabilitating and educating other prisoners much more effectively than other methods.

“Power is of two kinds. One is obtained by the fear of punishment and the other by acts of love. Power based on love is a thousand times more effective and permanent then the one derived from fear of punishment.”

-Mahatma Gandhi

Deputy Opposition Leader Tanya Plibersek, whose husband was charged and convicted of a similar crime to Andrew Chan and Myuran Sukumaran, spoke out in Parliament saying: “criminals can be redeemed – my husband is proof.”

She adds that the laws which underpin the executing these men is the basic “eye for an eye, tooth for a tooth” law that has influenced the Old Testament and earlier legal codes in countries around the world. But that’s 3,700 years ago. We’ve moved on a great deal from an eye for an eye, and a tooth for a tooth”. http://www.abc.net.au/news/2015-02-12/plibersek-these-men-deserve-restorative-justice-not-execution/6088334.

I also thought it was interesting that at last night’s vigil, emotional statements were read from the pair, which acknowledged their original stupidity,  saying that  the “compassion and kindness from people forgiving our stupidity” has made them feel “truly blessed” 4″

Their Last Words

Andrew Chan: “Thoughts from the Edge

“Thank you Jesus that you give me the strength and courage that I need to stand strong and to trust in you when the waters arise.”

“I thank you Jesus that you never give up on me and that your faithfulness is what helps me striving forward. I thank you for all the family and friends you surround me with in life and how your love pours out from them.”

“The Lord is revealing to me through this scripture is about how he’ll fight the battles for us and that we won’t be defeated if he goes ahead of us… The truth is God is remind us that when all seems helpless and you feel as though the enemies army surrounds you, God is telling us to stand still, take up our battle stance but do not move.[3]

Myuran Sukumaran – Thoughts from the edge

“When you are young you think money is the only way to get happiness … after being here for eight years you realize it is not.”

“After being in prison for eight years I only realized when it comes when it comes to drugs nobody gets rich – there are a few people – most get caught and end up in places like this and that’s the lesson.”

“I want to become a better person and I want to help everybody else become a better person as well. It is like a vehicle for everybody to travel in to better themselves.”

Last Words or a New Beginning…

Time is running out and I don’t know what any of us can do at this late hour. I understand that over 30,000 Australians have written to the Indonesian Attorney General pleading for mercy and many many people have spoken publically. Last night, a vigil was being held in Sydney to pray for the men and their families and this was just one of many. I can sense a collective heartache if these efforts fail and these two young men are put to death.

Andrew Chan and Myuran Sukumaran are in my heartfelt prayers.

And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus”.

*Please reblog this post and spread the word. It now looks like the lives of these men rest on divine intervention and people power.

As the saying goes: “Never give up”!!!

Love & Blessings,

Rowena

[1] · Pascual-Leone A., Amedi A., Fregni F., Merabet L. B. (2005). “The plastic human brain cortex”. Annual Review of Neuroscience 28: 377–401. doi:10.1146/annurev.neuro.27.070203.144216.

[2] Parliamentary motion: Chan and Sukumaran, Address to House of Representatives Speech, E&OE, Parliament House, Canberra,12 February 2015.

[3] http://www.news.com.au/national/six-living-former-prime-ministers-make-united-final-plea-for-doomed-bali-nine-duo/story-fncynjr2-1227222259664

4) www.abc.net.au/news/2015-02-18/vigils-held-for-bali-nine-pair-facing-execution/6143978

Paintings: http://www.news.com.au/world/asia/bali-nine-member-myuran-sukumaran-paintings-in-melbourne/story-fnh81fz8-1227049488225

I apologise  for any breaches of copyright regarding the images used in this post. I am merely trying to support their cause.

Terminal Cyberchondria…Yes! Please!

Being a blogger, a writer, reader and someone who likes to take responsibility for their own health, I’m a prime candidate for Terminal Cyberchondria. While not necessarily terminal in the sense of being life-threatening, you catch Cyberchondria from your computer terminal and more specifically by surfing the Internet for a diagnosis when you have more than a few “vague symptoms”.

Of course, having cyberchondria assumes that you are catastrophising again and your suspicions are wrong. That you have more chance of being killed in a car accident, or while riding a bike, than contracting that dreaded disease. No chance at all!! You don’t even need to cross your fingers, pray, say your Hail Mary’s. It’s all made up. In that great Australian tradition:”you’ll be right mate”!

However, once you’ve been struck by one or two rare, life-threatening diseases, that automatically opens the flood gates for you to develop any weird and wonderful disease… even the dreaded Ebola virus. After all, it only takes one infected person to board a train and it will spread faster than wildfire.

Well, I don’t have to worry about catching Ebola.

That has nothing to do with the fact that I live in Australia. Rather, you can pronounce and even spell Ebola and people have heard about it. That gives me automatic immunity. I specialize in the weird stuff…phenomenon even the doctors have to Google.

Anyway, since I had chemo at the start of the year, I’ve been having serious short-term memory issues and virtually no concept of time. For quite awhile, I’ve written these difficulties off as chemo brain, which is quite a common experience. In a way, this has been an interesting, quirky, experiment but I’ve now decided that it’s gone on long enough. I’m seeing my neurologist tomorrow.

There is quite a list of possibilities for my memory troubles:

  1. Chemo brain.
  2. Menopause.
  3. My shunt playing up. (I have hydrocephalus)
  4. Staying up too late.

However, I also started wondering whether these memory difficulties were side-effects of the new drugs I’ve been taking since I finished chemo. I’m on a drug called cellcept, which represses your immune system.

Google: a cyberchondriac's best friend.

Google: a cyberchondriac’s best friend.

When I Googled its side-effects, that’s when cyberchondria really kicked in. These side-effects include a virus that attacks your brain. In keeping with the unpronounceable dermatomyositis, this brain infection is called progressive multifocal leukoencephalopathy (PML). PML can be fatal. Symptoms include clumsiness, weakness that keeps getting worse, not being able to move or use one side of the body, and changes in vision, speech or personality (such as not caring about things that you usually care about and confusion).

After finding out the name of this dreaded disease, I’m wondering whether the people who name these weird and wonderful diseases and conditions, go fishing in their alphabet soup to put the names together. It has been hard enough to deal with “Dermatomyositis”, which is a serious mouthful but it only had 14 letters. The last word alone in PML has 19 letters. That must mean it’s very nasty indeed.

Going fishing in their alphabet soup. Is this how scientists name rare diseases? I'm starting to wonder...

Going fishing in their alphabet soup. Is this how scientists name rare diseases? I’m starting to wonder…

When I discussed the complexity of these medical terms with Geoff, he pointed out that they are intended to be descriptions so a medical person can quickly identify what is likely to be a complex medical situation far better than simply calling it: “Fred the Super Really Bad Disease That’s Going to kill You”. I can see his point but that still doesn’t help me explain what I’ve got and get any kind of acknowledgement from anyone outside the medical fraternity.

Ironically, while I have these two exceptionally rare medical conditions, I still have my tonsils, appendex and adenoids…all those bits people commonly have out and that’s what concerns me about PML. It’s rare enough and hard enough to pronounce, that it’s just my kind of disease.

You see, despite the cyberchonriacs, there are those rare winners of life’s rare lotteries who actually have what they thought they had. Yes, they actually have contracted one of these exceptionally rare, systemic, really nasty diseases. You know the type of thing that used to show up on the hit medical series House. Instead of being free to continue their explorations in cyberspace, before they even know what’s hit them they’ve been admitted to hospital. Yes, the proverbial Mac truck of bad luck was heading their way and they’ve just taken a very direct hit.

That’s me.

Dermatomyositis is a rare, systemic auto-immune disease where your muscles and skin attack themselves. It affects about 1 in 100,000 people and I’ve only met one or two people with the disease. You can get painful skin rashes and your muscles breakdown resulting in muscle weakness and wastage. While there is no cure, there is treatment which is largely effective although my case has proved more difficult to manage than average. The way I see it, I’m fighting myself and being rather strong willed, it’s been quite a battle. Dermatomyositis can also affect your breathing, swallowing and digestion and there are also the side-effects of the drugs and treatments. I am really surprised that I don’t glow in the dark after all my treatments. I’ve even had the Big C. That’s right. They’ve even blasted it with chemo. Thank goodness it worked.

However, while the medical treatments can be annoying, the hardest thing about having dermatomyositis has to be trying to explain it to anybody. I don’t know if you recall the Decore shampoo   commercial a few years ago where they had the person singing in the shower going: “D…D…D…Decore…Decore”. Dermatomyositis should be classified as some kind of tongue twister. I gave up trying to explain it years ago and just said I had muscular dystrophy. I thought it was a form of MD but it’s officially a neuro-muscular disease. Consequently, I now say it’s related to Muscular Dystrophy. However, if our son is around, he smiles with a baffled expression and tells people point blank: “You don’t want to know.”

Anyway, when you have a very rare disease, it opens the floodgates for all sorts of other conditions. After all, no one can tell you that rare can’t happen to you. Your last name might not be Murphy but bad luck sure knows how to find you!! It has your landline, your mobile and even your email address.

There’s a famous quote from the movie Casablanca which makes me smile:

“Of all the gin joints, in all the towns, in all the world, she walks into mine…”

That might have happened with dermatomyositis but hopefully, progressive multifocal leukoencephalopathy has somewhere else to go. It will board that plane with Ilse and Victor Laslo and disappear way beyond the clouds. Poof!

Goodbye Progressive Multifocal Leukoencephalopathy  (PML). Have a nice life!!

Goodbye Progressive Multifocal Leukoencephalopathy (PML). Have a nice life!!

Wish me luck with the neurologist tomorrow.

I don’t mind being told that I’ve over-reacted. A bad case of Terminal Cyberchondria is exactly what this patient has ordered.

xx Rowena.

If you are looking for information about dermatomyositis, which is a form of myositis:

The Myositis Association of America: http://www.myositis.org/learn-about-myositis/types-of-myositis/dermatomyositis

The Myositis Association of Australia: http://myositis.org.au/