Thursday, 23 May 2013
Blogiversary
I totally missed it. I blame brain fog for that. But I had a blogiversary this month. As of the 16th of May, sometimesitislupus.com is two years old.
There are times when it feels as if this site has been part of my life forever, and times when it seems like I only started out yesterday.
For all those lovely lupies, and supporters, who have been part of Sometimes, it is Lupus in any way over these two years, through reading and commenting on the blog, or being part of the community on Facebook or Google+, sharing on the Warriors' Wall, or the Business Directory, thank you. It's been a great privilege to share these last two years (or parts of the last two years) with you.
Wednesday, 22 May 2013
Other People's Germs
People with lupus have very unpredictable immune systems.
We have over-active immune systems that attack our own bodies.
To counter-act that, we have immunosuppressant drugs, which can stop our immune systems from doing their normal job of protecting our bodies from attack.
Now that the weather's suddenly got cold here in Brisbane, people are going to be indoors more, which leads to sharing germs and all the colds and flus that follow on from that.
Please, if you get sick with something that is "going around", avoid anyone you know with lupus, or any other autoimmune condition that causes them to be on immunosuppressant drugs, or have their immune system compromised in any other way.
One of the most important things you can do to support people with lupus (and similar conditions) is to avoid making us sick.
If you're sick, staying home from work isn't "giving in to it", or a sign of weakness. It's a sign you've got the common sense to not spread the bug further than necessary. (Of course, that also means staying home from other things as well as work.)
There's also an anti-vaccination going on in Australia. They're loud, but thankfully, don't really have much of an influence on vaccination statistics. It's sad that in a country where vaccines are readily available, there are people who deny their children access to them. I'm sure parents in countries where it's hard to get vaccines would consider that insane. But, in countries where it's hard to get vaccines, people are used to seeing children die from things that are preventable. I hope we don't have to see that happening here in Australia before common sense will prevail again.
Those who don't vaccinate their children, are not just risking their own children, however. There is a thing called "herd immunity". If enough people are vaccinated against a particular disease, it becomes virtually impossible for that disease to get a foothold in the population. "Herd immunity" means that vaccinating a child doesn't just protect that individual child - it also helps protect all of the people in the population who are on immunosuppressant drugs, or have AIDS, or have weakened immune systems for other reasons - because it helps prevent the disease spreading.
I say vaccinate your children, because children spread disease faster than any other part of the population, but if you're an adult and weren't vaccinated as a child, see your doctor. It's probably not too late to protect yourself, and everyone around you.
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Gluten And Lactose Free Treats - Trio of Old-Fashioned Lollies
I haven't posted a lot this week. I've been busy, and it gets busier after today (I have a wedding cake to make tomorrow.)
On Sunday, my daughter and I spent the day making some of her favourite lollies, for her wedding. (My future son-in-law was roped in to do some beating as well.)
I thought I'd share those recipes with you. They are all gluten free and lactose free, for those of you, who like me, have reactions to both of those things.
(Note: you will need a sugar thermometer, and a very large saucepan - the boiling sugar takes up far more room than the ingredients look like they'll take when you first measure them. I use caster sugar because it dissolves quickly, but you can also use regular white sugar.)
Coconut Ice
3 cups caster sugar
1 cup water
vanilla
1 1/2 cups desiccated coconut
pink food colouring
1/4 teaspoon cream of tartar
- Line a 30cm x 30cm baking tray with baking paper.
- In a large saucepan, mix 1 1/2 cups sugar, 1/2 cup water, 1/8 teaspoon cream of tartar.
- Stir over low heat until sugar dissolves.
- Brush down sides of saucepan to remove grains of sugar.
- Increase heat and boil without stirring until mixture reaches 113 deg C.
- Remove from heat. Allow to cool slightly.
- Add vanilla, and coconut, and beat with a wooden spoon until thick and creamy.
- Pour into prepared tray.
- Repeat steps 2 to 7 with remaining ingredients (adding in the pink colouring at step 7.)
- Pour pink mix over white mix.
- Allow to set.
- Cut into small squares (each square has one layer of pink and one of white.)
Lactose-Free Chocolate Fudge
2 cups caster sugar
3/4 cup lactose-free milk
1 1/2 tablespoon dairy-free margarine
2 tablespoons cocoa
1/8 teaspoon cream of tartar
vanilla
- Line a 30cm x 30cm baking tray with baking paper.
- Place sugar, milk, margarine, cocoa and cream of tartar in a large saucepan.
- Stir over low heat until margarine is melted and sugar dissolved.
- Increase heat and allow to boil until the mix reaches 115 deg C.
- Remove from heat. Allow to cool slightly.
- Add vanilla. Beat until thick and creamy.
- Pour into baking tray and allow to set. Mark into squares when almost set.
Peanut Brittle
2 cups caster sugar
3/4 cup water
1/8 teaspoon cream of tartar
1 teaspoon bi-carbonate of soda
1 cup peanuts
- Line a 30cm x 30cm baking tray with baking paper.
- Roughly chop peanuts. Sift bi-carb over peanuts and set aside.
- In a large saucepan, mix sugar, water and cream of tartar.
- Stir over low heat until sugar has dissolved.
- Increase heat and boil without stirring until toffee is a pale amber colour (brushing down sides of pan as needed.
- Remove from heat. Add peanuts and bi-carb. (The mix will fizz.)
- Stir lightly and then pour in to baking tray. Spread with a buttered knife if desired.
- Allow to set.
- Break into chunky pieces.
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.
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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.
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
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
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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.
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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.
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.
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| 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 | |||
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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
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government programs,
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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
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