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“What you do, the way you think, makes you beautiful.” Scott Westerfeld, Uglies
#Medical Alphabet Soup

image from commons.wikimedia.org

That which God said to the rose,
and caused it to laugh in full-blown beauty,
He said to my heart,
and made it a hundred times more beautiful.
Rumi
Illness: the final frontier. These are the voyages of the Starship medical ship Disease. Its five-minute mission: to explore strange new names, to seek out new diseases and new acronyms, to boldly go where no few doctors have willingly gone before.

Some of you may have noticed that I have been “Missing in Action” for a few days.  I literally jumped onto WP and dropped in a few songs and jumped off. I haven’t been in a good place and I wasn’t sure I could get my brain cells to co-operate enough to write something which was going to come out coherently.  Well, here it is and something a little different, a rant with an edge.

I had to attend an appointment with my doctor. I’m reaching  have reached the point where I detest going and feel infuriated when I am returning home. It makes going there counterproductive. I have always had an inherent dislike for the labeling system, and not just within the medical fraternity. It is endemic in society.  Now, it isn’t enough to append labels to everyone, thereby dehumanising people by placing them in an arbitrary group for the benefit of…..who? The Government? It’s almost irrelevant if it wasn’t so invasive, but its aim is so that we are able to be “controlled” with greater ease.

Not content with being labelled and grouped we are now being reduced even further by being diagnosed as little more than a group of letters. Such as:-

ADD  and ADHD Attention deficit hyperactivity disorder (ADHD) is a disorder that appears in early childhood. You may know it by the name attention deficit disorder, or ADD. ADD/ADHD makes it difficult for people to inhibit their spontaneous responses—responses that can involve everything from movement to speech to attentiveness.

http://www.helpguide.org/mental/adhd_add_signs_symptoms.htm

The information I found basically made ADD and ADHD into one category. All the signs, symptoms and treatments appeared almost the same. They appear to simply transition adults with greater ease if they are placed in the ADHD basket.  By that I mean if a child is diagnosed as ADHD they move into adult ADHD, there appears to be a very small number of adults referred to as having ADD.

Bipolar Disorder Bipolar disorder is the name used to describe a set of ‘mood swing’ conditions, the most severe form of which used to be called ‘manic depression’.

http://www.blackdoginstitute.org.au/public/bipolardisorder/bipolardisorderexplained/ 

Bipolar is treated the same as any other ‘mental’ disorder. It appears that any depressive illness is graduated eventually towards Bipolar, a nice easy fit for the sake of treatment.

#Medical Alphabet Soup

image from theredpillnews.blogspot.com

ME/CFS – (Myalgic Encephalomyeltis/Chronic Fatigue Syndrome) suffer from post-exertional malaise (flu-like symptoms following activity). CFS is a neurological condition that can affect children and adults of any age. Other symptoms include pain, disrupted sleep, difficulty thinking, and changes in blood pressure, hormones and body temperature.

http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Chronic_fatigue_syndrome

FMS – FibromyalgiaFibromyalgia (Fibro) is a name given to a group of symptoms marked by generalised pain and muscle stiffness. These symptoms can be felt in all different areas of the body. Extreme fatigue (tiredness) and sleep problems are also common in fibromyalgia. Fibromyalgia does not cause inflammation or damage to the painful areas, but seems to be due to an over active pain system.

https://www.arthritisvic.org.au/Conditions-and-Symptoms/Fibromyalgia

These last two are cut from the same cloth. All that is being done is simple semantics being argued. Post exertional malaise is different from muscle soreness and stiffness? It wasn’t when I went to the gym. Tiredness and sleep problems are the same as disrupted sleep – within parameters. It is all another way of segregating people into nice little baskets and putting labels on them. But why?

This may seem like a gigantic waste of time, however, my point is that the medical “powers that be” are manipulating the terminology to describe various conditions for their own purposes. Purposes we are not made aware of.

Whilst one source will say that ME/CFS will occur often with Fibromyalgia, another source will declare that FMS and ME/CFS are totally separate ailments. Yet the descriptions themselves show overlaps. I’m not wishing to be contrary, however, I am trying to show that this is a veritable minefield when someone is trying to find out what is happening to them, and getting a diagnosis.

Many of those who have been visited by one of these delightful acronyms over the years, have battled for years to get a differential diagnosis from ONE doctor, let alone a consensus so we can get the best treatment possible. Most of the time we have to struggle on alone, trying to get someone to ‘admit’ there is ‘something’ wrong. Not only is it wrong, it is criminally wrong.

In my opinion, splitting each part of the symptomology into small groups and relabeling it slightly, is another way for “the powers that be’ to be able to say, a smaller percentage of the population is ‘suffering’ from this or that ailment.  Then the real fun begins as they hyperventilate over which medications can be given to which group of people to treat their specific symptoms. Is this a cost cutting exercise?

Why has this latest visit caused so much ire? As many will already know I was diagnosed with Lyme disease last year. It doesn’t exist in Australia, according to the ‘powers that be’ and that creates a bucket load of problems, not least being there are no doctors who have the authority, from the Medical Association, to treat you. Some of the symptoms for this delightful ailment are, ‘flu like’ symptoms. In its lesser aggressive state it can cause inflammation of the joints, especially the knees, (arthritis.) The heart can be affected, (heart failure), Bell’s palsy, meningitis and so on. The arthritis of Lyme disease can look like many other types of inflammatory arthritis and can become chronic. Anxiety and depression occur with an increased rate with people with Lyme disease.

But it doesn’t exist here so I don’t need to worry.  My GP does not recognise that Lyme exists in Australia and therefore I do not have it. I’m not doing terribly well and I need to understand what’s happening. After all, it is my body we are talking about.  I’m a good researcher. It’s what I do when something bugs me. I research and my results led me to Fibro. This has been going on for years. I’m listed as a ‘chronic pain’ sufferer. The ‘argument’ is that Chronic Pain is an accepted diagnosis so why do I need to find out if it is Fibro? Simple – I need to know so I can understand what I can do and where I can go to get help.

Under pressure – I was finally told, Yes, I have Fibro. Chronic Pain is Fibro. I cannot have an operation because my spine is Swiss cheese. I have had this for so long it has degenerated too much to do anything with it. Let’s have a Party!

#Medical Alphabet Soup

image from opencaremedicalcenter.com

So I now have a generalist who says I have Lyme disease: who isn’t allowed to treat me because the Australian Medical Board has restricted his license. Why – well it doesn’t exist here and he was stupid clever enough to make a ‘you tube’ video advertising his treatment of it. Smart move! I also have a Medical practitioner who says it doesn’t exist so he won’t treat me for it. I have Chronic Pain, or Fibro, or both, or ME/CFS.  And they wonder why people get depressed or anxious!

Sarcasm is the final stand for people who are being ignored or not listened to. I shouldn’t need to be as wealthy as Rockefeller to get good health care. I shouldn’t need to go to the UK or US to get medication. I shouldn’t have to wait an additional ten to fifteen years to get medication already approved and in use in those countries.

#Medical Alphabet Soup

image from http://www.label-makers.com.au –          Is this our future?

Reducing every ailment or disease to an acronym, for convenience, not only depersonalises the situation it also dehumanises those affected. We are not numbers, nor acronyms. We are not our disease or ailment, we are people and should be accorded the dignity that warrants.

I have one final theory – is this a concerted effort of ‘the powers that be’ to introduce eugenics in the population under the guise of ill-health? Now that is a scary thought.

“You can truly value life, when you have looked Death in the eyes and held its hand.”
Lionel Suggs

Blessings, Susan x

© Susan Jamieson 2014

#Medical Alphabet Soup

image from fineartamerica.com

Disclaimer: I am not a doctor and hold no medical qualification. All the descriptions used are taken from an Internet search and relevant bodies who advise on these conditions. All opinions stated are mine.

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Dictators and the horror they cause are not to be belittled, yet there is more than one way a dictatorship can be fostered.  An Oligarchy is defined by Wikipedia as: “a form of power structure in which power effectively rests with a small number of people.”

In business such a structure can breach all the rules and regulations the workplace has in place and destroy the lives of these who are not part of the “power structure”. There is a well-known business in Queensland which is run by such a tyrannical Oligarchy, ruining many of the lives of those who work there, simply because they can. To make matters even more putrid, the Union, our esteemed Labor Union, is incapable of effectively doing anything to help these people or stop the dictators. Are we Labor supporters??

How do I know? I have an inside source. Someone who is being systematically torn asunder by underhanded tactics after over a decade of loyal service. They are not protected by any fair or reasonable working regulations since the company will not employ permanent staff, and casuals have no rights. That’s correct, casual staff have no rights in this business. Despite working through a twenty-four hour shift rotation, accepting any ‘shit’ shifts the permanent admin staff don’t want to do, especially at Christmas, if the hierarchy decide they want to ‘get rid of’ a staff member they simply cut their hours or make their working life such a traumatic and unpleasant experience, that eventually they break and leave. No annual leave, or other entitlements to pay, the company can do as they like. When was the last time you went without a family Christmas for ten years?

We’ve come a long way in our working democracy haven’t we?

Here is a scenario. Young worker, employed part-time as they work through University. Slowly working through the quagmire of late shifts, abuse from drunks, rarely enough staff, and let’s not forget the floods in recent years –  management didn’t go to work during the floods, even though the building was partially under water, however, the part-time, junior staff, all on casual pay, were pressured to go to work because…… the cars were running. (That’s a hint). I heard a story of staff being ferried by tinny to the work premises because of the flood water.

If the staff show promise they are given extra work, more involved duties, but no extra pay. Oh No, couldn’t do that, and despite a relatively long and very loyal tenure, no permanent position! (Ten years in one position is relatively long these days). Stress and pressure can effect anyone, at any time. Add a couple of deaths in the family, long hours of study and increasing pressure from work…. is it so far-fetched that the strain could become too much?

So, despite doing what is in effect two people’s work, this person is still a casual and is slowly breaking after a decade without a break. (Don’t forget, no holiday pay or sick pay for casual staff). On asking for an assistant, which the Union, (God Bless their cotton socks) has said is required, their hours are cut to ease the stress. They still have to complete the same amount of work in less time. Let’s try a repeat request a few months later…. more hours lost and the same amount of work.

Is this what we’ve come down to? If a company can ignore the Union, and every other Government Department (and I’m not a Union fan) and treat our workers like third world country employees, what the hell was all the struggle for when Unionism was born?

The Oligarchy, in their ultimate bastardry, decide to put on a new staff member, someone who happens to be a friend of one of the permanent Admin staff. This is code for, “it doesn’t matter how bad they are, they have a job for life.” The existing staff have no voice and less respect from management.

Now the scene has changed. The stressed and loyal employee has to train the very person who will eventually force them out of their job, and all with the connivance and approval of the dictator at the top (Mr P.). Is this going to reduce the stress this person is enduring?  No.  They are reduced to surviving on anxiety relievers, until they can find another job… if they can in today’s market.

Is being made a nervous wreck allowed in today’s marketplace? Apparently so, because there is nothing any regulatory body can do to this company.  It’s a private company, a ‘family’ business.

Can this person sue them for discrimination because they are ultimately being replaced, due to unrelieved stress, when they have trained this usurper? NO! They have no rights, at least not until they are unemployed and in a worse position than they are at present. Even at this point there is still no real pathway for redress.

To say I am disgusted with this story is an understatement. This company should have every department related to fair working conditions, Union bloody regulations and Anti Discrimination using hob nailed boots all over their collective heads and tails! Yet at present I am proscribed from going further until the final piece of this bastardry is complete. All  I will say is this. If you have a choice of transport when in need of a relief vehicle, think of two colours and not a cowardly one.

image from australia.shopsafe.com.au

Doing my part for unfair working conditions.

Ciao, Susan

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