Saturday, 25 June 2016

DSP Approvals Down to Fifteen Percent

Before the most recent changes to the Disability Support Pension, people with lupus already struggled to get Centrelink to understand the nature of our condition.

Many were rejected.  We can turn up for the assessment looking perfectly healthy.  It makes it look like our doctors exaggerating on our medical reports.

I have to say, I'm one of the lucky ones.  The assessor saw me on a really bad day, and I could barely stand. I didn't have much trouble.  It probably also helped that my superannuation fund had already decided to put me on its disability pension.

A number of lupies I know, didn't get off so well.  Most have been forced to try to work even though they really physically can't a lot of the time.

What's the result of the new rules been? The vast majority of people applying for a disability support pension have been rejected.  Since the current government's new changes have come in, only 15 percent of applications for DSP have been approved.

That's an absolute disaster for people with invisible illnesses/disabilities.

What can we do?


Well, we can vote on Saturday. Not that that will guarantee anything, but it can give some hope that change can happen.

Apart from that, if you've been rejected for the DSP, appeal. Get  your doctor to support you.  Go visit your federal member and insist they help you.  If your doctor backed you for a DSP application, they'll back you for an appeal.  If all else fails, go to your local newspaper and tell your story. I know fatigue's a big issue, but use every bit of energy you have to demand some attention.  Just don't ever give up. 

There's also the option to check if you are eligible for a different Centrelink Payment, such as Sickness Allowance.

And for those of us who are not currently applying for the DSP - it's a good idea to let our politicians know that we're sick of disabled people being demonised as a "burden on the economy."  We have a DSP for a reason, and it should be given to all the people who really need it.

(And if we're talking "burdens on the economy" shouldn't politicians get their super under the same conditions as everyone else gets ours? Pot-kettle anyone?)

Wednesday, 15 June 2016

Even More Adventures of Lupie in the Fog

Image: brain scan.  Text: Not crazy, just lupie!The trouble with brain fog is that sometimes I think what I'm doing is perfectly sensible.

So this morning I made coffee.  Quite a sensible thing to do.

I cleaned the coffee maker, took out the basket for the ground coffee, emptied it, washed it out and left it on the side of the sink.

I washed out the water jug, and used it to refill the machine then sat it on the hot plate.

I poured coffee beans into the grinder attachment of the Kenwood Chef, and ground the beans nicely.



Then I tipped the ground beans into the coffee maker.  They went straight through, over the jug, and spread all over the bench.

That's when I saw the basket for the coffee grounds, still sitting on the side of the sink.

I've now cleared enough of the debris to be able to start again, but I will need coffee before I can think clearly enough to clean the kitchen properly.

This is what lupus does.  I am intelligent woman.  I have a couple of degrees to prove it, and I have had a couple of careers that required a bit of brainpower, as well as having raised kids.  But now... now I can't be trusted to make coffee without supervision.

Thursday, 9 June 2016

Ask a Politician, Update

A little while ago, I asked you for questions you'd like to ask the various parties in the election.

I've sent the Liberals, Labor, Nationals and Greens the following email:

Hello, my name's Iris Carden and I write the blog sometimesitislupus.com.

I have a series of questions of interest to people with chronic illnesses, which I am providing to all the major political parties. I would like to be able to publish everyone's answers to these questions together to allow readers to compare easily.  Please tell me only what your party's position is, not what you believe is wrong with another party's position.

Would someone in your media department please get back to me with your party's responses by the 25th of June?


1. If  you were in government, what would the future of Medicare be? (Ie, would it be privatized? Would the freeze on rebates continue?)
2. Quite a number of people with lupus have been unable to gain Disability Pensions, despite their doctors being insistent that they should stop work. What would your government's position be on Disability Support Pension for people with chronic illness? (Particularly episodic illnesses, where the patient can appear fine one day, and be crippled with pain, fatigue, and mental confusion the next?)
3. Does your party support the idea of a renewed Chronic Illness Dental Scheme?
4. Do you plan any changes to the Pharmaceutical Benefits Scheme?
5. Is there any other message you would like to give to Australians living with serious chronic illnesses?

Thank you for your attention to this matter, I realize a blog will not rate as highly in your priorities as a major news outlet, but the community I write for is very interested in these matters (our lives, in fact, depend on them.)

Grace and peace
Iris Carden
iris@sometimesitislupus.com

Would you like to know what I've had back so far?  Everyone except the Nationals sent me an email acknowledging receipt of my email.  Labor has sent a further three emails asking for donations and inviting me to volunteer for them.

That's it so far.

I wonder if any of them will take the time to give me an answer to the questions?

Update 
10//6/16  That's now four emails from Labor asking me to donate or volunteer.
11/6/16 Now seven emails from Labor asking me to donate or volunteer.  No emails from any party answering my questions.
13/6/16 Now nine emails from Labor asking for money or work.  No emails from any party answering questions.
18/6/16 I can't be bothered counting any more.  Labor has continued sending me two emails a day (and an extra on one day when they asked permission to ring me about how I could volunteer.)  Still no answers to the actual questions.  



Tuesday, 7 June 2016

Be Careful with Methotrexate

Image: bottle of methotrexate.  Text: Since 2000, incorrect doses of methotrexate have been linked to eight deaths.* Be careful to take medication exactly as directed. * Source www.abc.net.au/newsYou might have seen the news today that methotrexate has been linked to eight deaths since 2000.

That's a scary piece of information.

Actually, I remember when I started on methotrexate and read the patient information sheet that came with it.  It's all scary information.

If you read the actual news reports, however, the problem wasn't just that patients were taking methotrexate, but that they were taking it incorrectly.  (For example, taking it every day instead of one day per week.)



So the lesson for the rest of this from these tragic deaths is simple.  The drugs we take for lupus can be very dangerous.  Be careful with medication, and take it exactly as directed by your doctor.

Methotrexate, for example, is usually meant to only be taken once a week, so if you took it daily you would get a much higher dose than you need, and a potentially life-saving medication could end up being a life-threatening poison.

Methotrexate, however is not the only drug that can be dangerous.  Be sure you clearly understand your doctor's instructions on all your medications, even non-prescription ones.  If you have questions or concerns, ask, don't just guess. And don't trust Dr Internet to know.

Be safe lovely lupies.  Too many of us have been dying lately.

Saturday, 4 June 2016

15 Lupus Blogs You Should be Reading in 2016

Health Listed has come up with a list of 15 Lupus blogs they think you should be reading.



You can find out who the other 14 are here.