Monday, 20 May 2013

When the Clumsies Aren't Just Annoying

Most people get the clumsies from time to time.  Most people with lupus get them quite regularly.

Inanimate objects like walls and the floor, or plates or whatever just randomly attack us.

Most of the time it's just annoying. Sometimes it's quite upsetting when something really precious to us or someone else gets broken.

But a question to the Sometimes, it is Lupus Facebook Page this morning leads me to give this advice.

(Disclaimer: I'm not a doctor, I can't give medical advice, etc, etc.... now do as I say anyway!)

A head injury should be treated seriously.

If you have a head injury and any of these things happen:

  • you pass out
  • you are nauseous or vomit
  • you can't remember
  • you think you may have had a seizure (especially if you don't "normally" have seizures)
  • you're sleepy or dizzy
  • you see strange things or see things strangely
  • anything else out of the ordinary is happening...
Go to a doctor or a hospital emergency department immediately.  Get someone to drive you there. If there's no-one around to drive you, call an ambulance. 

If you get checked out and there's nothing wrong, that's great. You haven't "wasted" anyone's time.   

A head injury is not one of those things where you can just leave it a day or two and see what happens, because what happens could be very, very, bad. 

Saturday, 18 May 2013

Will DisabilityCare Australia Cover Lupus?

I've had a response to my request for information on whether the National Disability Insurance Scheme, now named DisabilityCare Australia, will support people with lupus.

It's a definite "maybe". DisabilityCare Australia is aimed at supporting people with severe disabilities, so whether, and how much, it will support anyone is decided on a case-by-case basis.

A spokesperson from the Department of Families, Housing, Community Services and Indigenous Affairs said: "Eligibility for support will not be defined by diagnosis of a particular disability but by an assessment of an individual’s capacity and their need for care and support and whether the person’s needs are best met by DisabilityCare Australia and not more appropriately met by other systems, such as the health care system.

"There isn’t a list of who is in and who is out because the scheme is designed to be about what an individual can do and what they need to function.

"Likewise, the support provided through DisabilityCare will be based on an individual’s needs.

"DisabilityCare Australia staff will work closely with people with disability participating in the scheme to develop a personal plan that funds reasonable and necessary supports to meet their needs, goals and aspirations taking. In deciding what supports are reasonable and necessary to fund, consideration will be given as to what supports other systems such as the health system might more appropriately provide to the person."

The scheme is being rolled out gradually throughout Australia, beginning with selected regions of New South Wales, Victoria, South Australia and Tasmania.  Next year, it will be starting in the Australian Capital Territory and the Northern Territory.

It will be rolled out across Queensland by 2019.

For more information on DisabilityCare Australia, go to the NDIS website: http://www.ndis.gov.au/.

Other government supports which may help people with lupus are listed in my earlier post: Support for Chronic Illness.


Video: Prime Minister Julia Gillard announces launch of DisabilityCare Australia



Friday, 17 May 2013

The Balancing Act

In my ongoing endeavour to finally lose my excess weight, and hopefully improve my health in the long-term, I'm in the process of weaning off my steroids.

Last fortnight I dropped to 4.5mg per day.  And today I go down to 4mg per day.

I've already noticed an increase in pain levels. But I've also actually started to lose weight - down half a kilogram last week. Losing 30kg is going to be a long, slow, painful process. But it will mean long-term, taking the excess stress off my joints. It will also hopefully help protect my organs, which I'm sure will much prefer to not be wrapped in fat.

Lupus medication is always a difficult balancing act.

The side-effects of our drugs are horrible, and can have serious long-term implications for our health.

Lupus patients find ourselves taking drugs to mitigate the side-effects of our drugs.

Trying to keep our bodies safe from the worst of the disease activity, while also keeping us safe from the worst effects of the drugs that control the disease, is always a challenge.

Thursday, 16 May 2013

Hip, Hip Hoo-ray


Well, if you look at the image, you can guess how my day went.

It started with all plans being changed by a flat tyre.  There was a screw in it.  It could have been there a long time, because for quite a while I've noticed that when I check the tyres that particular one does need a bit of air.

My spare is one of those "space saver" tyres.  It's good for emergencies, but can't just stay on the car because it doesn't quite meet regulations. That meant getting a new tyre today. Which meant waiting for a new tyre to be put on the car.

I spent about two hours at a shopping centre waiting to get my car back.

That's two hours I've spent wandering around a shopping centre, alternately walking and sitting in uncomfortable chairs.  By the end of it, my "good" hip was hurting worse than my "bad" hip. I could barely walk at all. 

My son was with me.  When I was struggling to move at all, he made a joke of having to wait for me: "Waddle.  Waddle to freedom!"

Well, home from my waddling and waiting, and I went to bed for a couple of hours.  The pain was bad enough to cause nausea. That was the point at which I realised I wasn't going to a meeting I was supposed to be at tonight.

I can remember a time when a couple of hours of walking around didn't bother me at all. It's getting to be a very distant memory.

Now, managing pain and fatigue mean that so many aspects of "normal" life are far from normal.

Queensland Government gives $1.25 Million to Research

So thrilled when the following media release was forwarded on to me.

The State Government has given $1.25 million to an arthritis researcher who is working on Rheumatoid Arthritis (RA) and tuberculosis (TB).

Hopefully advances in understanding RA will also help people with lupus and other forms of arthritis.

Following on from the recent decision to join in with the rest of the country in Disability Services Australia, this government is starting to look like it might actually care. (Of course, there have also been cut-backs in Queensland Health, but we can't have everything.)

I'm reproducing the media release in full (not the kind of thing I used to do as a journalist) because this is something I think is quite important to all of us.



Coat of Arms
Media Release

JOINT STATEMENT

Premier
The Honourable Campbell Newman

Minister for Science, Information Technology, Innovation and the Arts
The Honourable Ian Walker

Premier’s Science Fellow to help arthritis sufferers

An expert on genes that increase the risk of common human diseases was today awarded the Queensland Premier’s top science prize.

Professor Matthew Brown from the University of Queensland Diamantina Institute was awarded the prestigious $1.25 million Premier’s Science Fellowship to advance the diagnosis and treatment of rheumatoid arthritis and tuberculosis (TB).

Premier Campbell Newman congratulated Professor Brown on his award and thanked him for his remarkable work that was positioning Queensland as a global leader in genetic research and diagnostic testing.

“This Fellowship allows Professor Brown to progress his gene-mapping research in ways that will benefit not only our health but also Queensland industry,” Mr Newman said.

“He already has three patents for tests to diagnose a related condition, ankylosing spondylitis (AS)—a severe type of arthritis affecting more than 80,000 Australians—and his genetic findings have led to trials of new treatments for AS. 

“Over the next five years Professor Brown will use the fellowship to identify the genes underlying the causes of rheumatoid arthritis and tuberculosis and develop better diagnostic tests to screen for them.”

Professor Brown said it was a great honour to win the Premier’s Science Fellowship.
Professor Brown trained as a physician specialising in rheumatology but was unhappy with the limited treatments he could offer patients so he switched from clinical practice to researching the condition.

“The techniques we are developing have real commercial possibilities and healthcare benefits. We expect to roll out affordable diagnostic tests within five years, paving the way for new treatments targeting the root cause of the diseases,” Professor Brown said.

“Rheumatoid arthritis affects 2.5 per cent of Queenslanders and more than 513,000 Australians and there are no treatments to prevent the disease or induce remission. 

“The increasing incidence of tuberculosis is also a concern, particularly the cases of multidrug resistant TB arriving in Queensland from Papua New Guinea and the Torres Strait islands.”

The Queensland Government’s $1.25 million investment, which is matched by The University of Queensland, reinforces the government’s commitment to working with universities to support scientific research that delivers real benefits to the community.

[ENDS] 16 May 2013 

Wednesday, 15 May 2013

Support for Chronic Illnesses

It may be a while before we find out what (if any) services are available to people who are disabled by lupus
and other chronic illnesses under the new Disability Services Australia legislation.  So, I thought it might be good to have a wrap-up of what Government support is already available.

Income Support

For those of us who can't work because of lupus, a Disability Support Pension is available (but if you have a partner who earns too much, you can't get this.)

The amount of pension paid is reduced for people who have other sources of income. So it's possible to work part-time (up to 12 hours per week), and still receive a part-pension.

Even a part-pension has the benefit of a Pension card. A Pension card can help gain all sorts of concessions on medical and other services as well.

For those who do have incomes, but low incomes, a Health Care card can make some medical and related services, and Pharmaceutical Benefits Scheme (PBS) medications cheaper.

Medical and Allied Health Services

Many doctors will bulk bill Medicare for services for people on Pension or Health Care cards. If your doctor doesn't bulk bill, the Medicare rebate will be higher.

For those who don't have a concession card, there is a Medicare Safety Net.  After a family has spent a set amount (the amount changes from year to year), the Safety Net cuts in and a number of medical services will be cheaper for the rest of the year.

People with chronic illnesses will be able to get some Allied Health services paid for by Medicare. Discuss a GP Management plan with your General Practitioner.  Your doctor can refer you to up to two allied health professionals, with Medicare assistance, under a Team Care Agreement as part of managing your condition. (There is a limit of five allied health services/appointments per year under this program, and sometimes there will be a small out-of-pocket fee.)

Medication

Medication is always expensive for people with lupus.

In Australia, the Pharmaceutical Benefits Scheme limits the upper cost of most prescription medications. Those of us with Pension cards or Health Care cards, have an extra discount, bringing the cost of each medication to a bit over $5.00.

Like Medicare, the PBS has a Safety Net.  After a set number of prescriptions for a family, people on concession cards get their PBS medications free - and people without concession cards will have their cost of medications reduced to the concession level.

If you take more than 12 medications, you may be eligible to have a free Med Check - ie your pharmacist can do a review of your medications, how they're taken, etc.  Not all pharmacists do this.



References:

Australian Government Department of Health and Ageing Chronic Disease Management Medicare Items: http://www.health.gov.au/internet/main/publishing.nsf/Content/mbsprimarycare-factsheet-chronicdisease.htm

Australian Government Department of Human Services Chronic Disease Management Plan: http://www.humanservices.gov.au/customer/services/medicare/chronic-disease-management-plan

Australian Government Department of Human Services Concession and Health Care Cards: http://www.humanservices.gov.au/customer/subjects/concession-and-health-care-cards

Australian Government Department of Human Services Chronic Medical Condition Assistance: http://www.humanservices.gov.au/customer/subjects/chronic-medical-condition-assistance

Australian Government Department of Human Services Disability Support Pension: http://www.humanservices.gov.au/customer/services/centrelink/disability-support-pension

Australian Government Department of Human Services Medicare Safety Net: http://www.humanservices.gov.au/customer/services/medicare/medicare-safety-net

Australian Government Department of Human Services MedsCheck Program: http://www.humanservices.gov.au/customer/services/medicare/medscheck-program

Australian Government Department of Human Services Pharmaceutical Benefits Scheme: http://www.humanservices.gov.au/customer/services/medicare/pharmaceutical-benefits-scheme


Tuesday, 14 May 2013

Budget Night

Here in Australia, it's Federal Budget night.  So I've been glued to the television, watching to see how the government's financial plan will affect lupies.

I'm not an economic analyst, and I don't have a crystal ball, so upfront let me say I don't know exactly how these things are going to affect us, but a few things in the Treasurer Wayne Swan's speech presenting the budget stood out to me as having a potential impact on us.

You can get the full details of the budget here.

The two big things for us, should be the establishment of DisabilityCare Australia, and the National Health Reform Agreement.

On the downside, a lot of health funding is being targeted especially at cancer research and care and treatment, so autoimmune diseases are the poor neighbours yet again. Hundreds of million of healthcare dollars will be specifically for cancers. (Mr Swan talked about his own experience with cancer. Maybe we need a senior politician to have their life threatened by lupus or another autoimmune disease.)

A potential downside for lupies who are still in the workforce, is that this budget will phase out the net medical expense tax offset (tax reductions for spending more than $2000 in the year on medical expenses.) At the same time, the point at which the Medicare Safety Net cuts in, increases from $1221.90 to $2000.

Relevant sections of Mr Swan's speech are included below:


DisabilityCare Australia
The Australian Government will provide $19.3 billion over seven years from 2012‑13 to roll out DisabilityCare Australia across the country. This brings this Government's total new investment in DisabilityCare Australia to $14.3 billion over the period.
This investment in DisabilityCare will ensure all Australians with significant and permanent disability get the support they need. This is compared to the current approach where limited funds are rationed and people who get funding often have to accept a one‑size‑fits all approach.
Rigorous assessments will be conducted to ensure funds are targeted where they are needed most.
Core principles
DisabilityCare Australia will look beyond immediate need, and will focus on what is required across a person's lifetime. At its core will be:
A Lifetime approach — as funding is long term and sustainable, people with disability will have peace of mind that the individualised support they receive will change as their needs change;
Choice and control — people choose how they get support and have control over when, where and how they receive it, including the option of managing their supports themselves;
Social and economic participation — overall life goals for participation will be a central focus of supports; and
Focus on early intervention —# the scheme will invest in people to maximise their independence.
Sustainable funding
From 1 July 2014 the Government will raise the Medicare levy by half a percentage point to provide a strong and enduring funding stream for DisabilityCare Australia.
This will raise $20.4 billion between 2014‑15 and 2018‑19, to be spent on DisabilityCare Australia. The States and Territories will also contribute to DisabilityCare Australia, and will be allocated $9.7 billion over ten years from the increase in Medicare levy revenue.
DisabilityCare Australia will be fully funded.







































DisabilityCare Australia launch
DisabilityCare Australia will commence operations from July 2013 across four jurisdictions and from July 2014 in a further two jurisdictions.
Launch locations will be established in the Hunter region of New South Wales, the Barwon region of Victoria, in South Australia for young children and in Tasmania for young adults from July 2013, and in the Barkly region of the Northern Territory and the Australian Capital Territory from July 2014.
National roll out
The Australian Government is committed to the full national roll out of DisabilityCare Australia in 2018‑19.
The Government will provide funding of $11.7 billion to DisabilityCare Australia in 2019‑20, the first year after full national rollout.
New South Wales was the first jurisdiction to commit to full scheme, followed by South Australia, the Australian Capital Territory, Tasmania, Victoria, Queensland and the Northern Territory.
The roll out of DisabilityCare Australia in these jurisdictions will cover around 90 per cent of the total Australian population.
The Government will continue to work with Western Australia to achieve national coverage by the end of 2018‑19.






















The Government has taken action to address the challenges facing our health care system including an ageing population and rising health care costs.
Access to new medicines
We are investing a further $691 million over five years in new medicines in the PBS, including ground-breaking drugs for the treatment of chronic nerve pain, chronic hepatitis C and Parkinson's disease.
The Government has realised savings from the price disclosure reforms to the Pharmaceutical Benefits Scheme (PBS) agreed with industry in 2010. This has increased capacity to fund new and innovative drugs.
Better healthcare
The Government is investing a further $2.2 billion in the Medicare Benefits Schedule across five years with a higher than expected number of Australians visiting doctors. In addition a further $33.8 million is being invested into the General Practice Rural Incentive program in 2013‑14 to encourage medical practitioners to move to regional and remote communities.
An additional $2.2 billion over four years will go to assisting individuals and families to meet the cost of private health insurance through the private health insurance rebate. A further 120,000 people have taken up private health insurance cover from July to December last year
In 2012, the Government announced funding of $4.1 billion to improve access to dental services and boost the dental workforce, including $2.7 billion for a Child Dental Benefits SchemeGrow up Smiling.
Historic national health reform
In 2011, the Government and all States and Territories signed the historic $16.4 billionNational Health Reform Agreement. These reforms are critical to preserving Medicare and universal healthcare in Australia.


































Improving cancer care
In this Budget, the Government is investing a further $226 million to deliver world leading cancer care for Australians.
The Budget provides $18.5 million over four years to fund the new Australian Prostate Cancer Research Centre, as well as support the two existing Research Centres.
The Budget delivers $42.1 million over four years in funding for bone marrow transplants and for the Youth Cancer Network program run by CanTeen, providing access to life-saving medical procedures and necessary support services for people living with cancer.
The Government will also invest $5.9 million over four years to improve the treatment and outcomes for people affected by lung cancer.
Recognising that smoking is a major cause of cancer, the Government has taken ground-breaking steps to introduce plain packaging of tobacco products. This Budget includes funding for the enforcement of plain packaging.
Early detection
The Government has also committed $92.2 million over four years to expand the target age range for the BreastScreen Australia Program and to continue funding the processing of Pap smears for early detection of cervical cancer.
Bowel cancer screening will also be funded with an additional $16.1 million over four years, which builds on previous investments in this area.
An additional $29.6 million in 2012‑13 and 2013‑14 will be provided to support the dispensing of chemotherapy medicines to ensure the supply of these drugs to patients.
Improvements in cancer care will also flow from additional funding for national cancer data collection which started in 2009‑10. These initiatives build on the $1.1 billion invested by the National Health and Medical Research Council in cancer research since 2007.










































Reference: 2013-14 Commonwealth Budget http://www.budget.gov.au/2013-14/index.htm

2000 Likes on Facebook


Just had to share with everyone. The Sometimes, it is Lupus Facebook Page has now had 2000 likes.

Why not come on over and join us? Join in the conversation and meet lots of lovely lupies.



Pointing Out The Obvious


It always bothers me when I hear from fellow lupies who are being treated as if their symptoms were their own fault, or are just imagined or made up.

I know my ex-husband always thought I was just lazy, but in his defence, I hadn't actually been diagnosed with anything while we were married.  I just kept getting sick for no known reason, and finding I didn't have the energy to get everything done.

But the more I do this on-line lupus advocacy stuff, the more I hear from people who are just not believed when they say they are in pain, or they're too exhausted to keep going.

So let's spell what should be obvious, for the sake of anyone who really doesn't understand:

  • A "positive attitude" will not cure lupus.  It may help with symptoms of depression that can accompany lupus - but the way to encourage that is to teach actual cognitive behavioural therapy techniques, not just tell someone to "get over it".
  • When someone who has lupus says they're "tired", it usually means the kind of tired that a month of straight sleep wouldn't fix.
  • Pain for a lupus patient is normal.  So when pain reaches a point where we complain about it, it's something that someone not used to pain wouldn't handle anyway.
  • Yes, we plan things and then can't do them.  We know you're frustrated. It's maddeningly frustrating for us as well. 
  • Yes, all these drugs we take can and do have horrible side effects. We know that. Our doctors know that. We still take the drugs because not taking them would be far, far, worse.
  • No, we can't just drop it all and take "natural" alternatives.  Those "natural" alternatives are basically untested drugs, of unknown strength and quality, which have unknown effects and unknown side effects. 
  • Lupus is not just an "excuse" to get out of things we don't want to do. It's a nightmare we live with every day. 


  • If there was a safe, proven, way to get well, we'd take it. The thing we all want more than anything is a cure.
  • We did not do this to ourselves. It's not a lack of faith, or poor self-care, or anything else you might want to blame.
  • However convincing the latest "cure" you read about on the internet or in a chain email, we're waiting for something to actually be proven before we risk our lives on it.
  • When we ask you to get vaccinated for the flu, and to vaccinate your children for infectious diseases, it's not that we want you to be inconvenienced. For us, it's a matter of life and death. 
  • All those horrible symptoms you saw on "House" where they suspected lupus? Yes, lupus really can do all of those things.
  • If you've ever had the flu, not just a cold, but actual life-threatening influenza, remember what it felt like.  That's how we feel every day.
  • If I look healthy, that's fantastic.  If my body weren't at war with itself, I might feel healthy too.

Monday, 13 May 2013

Business of the Week - KenWeal

This week's Lupus Business Directory Business of the Week is:








KenWeal
Clothing designs by Kenneth Weal (Lupus)











Here are a couple of the products he has available: