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

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

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?

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 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.

Tuesday, 31 May 2016

Not Just Annoying

I've been struggling a lot with dry eyes and dry mouth.

I use polygel eye gel for my eyes - an optometrist put me on to it ages ago.  It doesn't fix it, but it does make it bearable, and I've never found anything any better.

For my mouth, I had been chewing my way through endless sugar-free gum, because I'd read somewhere that stimulates saliva production.  It helped a little, but not all that much.

Although my mouth was getting sore a lot of the time, I treated this just as a nuisance, rather than something serious.

Then I read a post about dry mouth by Dr Donald Thomas. (The rheumatologist who wrote The Lupus Encyclopaedia.)  Dry mouth can cause all kinds of dental problems, including loss of teeth. It's actually a serious problem.

I'm kind of attached to my teeth (well not the wisdom teeth, we parted company on unfriendly terms a while ago.) So, I've started taking my mouth a little more seriously.

I bought a moisturising toothpaste and mouth wash.  I was a bit concerned before I used them, because I've been using "sensitive" toothpaste for years because my teeth hurt. It was with great pleasure I discovered the moisturising toothpaste also helped with the pain in my teeth.

On Monday, I have my rheumatologist appointment.  On top of my list now is my dry mouth and dry eye issues.

Thursday, 26 May 2016

What would you ask a politician?

OK Lovely lupies, we have a Federal Election coming up on the second of July (oh you knew that?)

If you could ask any questions of the main political parties in the lead-up to the election, what would they be?  (I checked the AEC's list of current political parties and there's no way I'm going to try to contact all 20 or 30 of them.)

So here's the deal:

If you lovely lupies give me questions or issues you want to know what the parties plan to do if they get control, I will forward a list of questions to the major parties. (Every party would receive exactly the same questions, so that would hopefully help you compare answers.)

If they send me answers, I'll publish them ahead of the elections.

There's a couple of big "ifs" there.

So my question for you at the moment is, what questions do you have for them?

Issues I think might be of interest to people with chronic illness might include Medicare, the Pharmaceutical Benefit Scheme, the Disability Support Pension, just as a starting point to get you thinking.

You can give me your questions in the comments here or on social media.

Dr Irwin Lim - A Blogging Rheumatologist Worth Following.

I love that there are rheumatologists who blog, and share useful information with people like me who want to stay well informed about our condition. Taking time out of a busy practice to keep us all informed is a pretty awesome thing to do.

One of the rheumatologists who has a blog I find well worth following is Dr Irwin Lim.  You can find his blog here

The following article is reposted from his blog (original is here) about his appearance on the cover of a magazine for Australian doctors.

BJC Health in Best Practice magazine.

I feature in an article in Best Practice magazine, produced by BOQ Specialist, a finance company which deals with the health industry. BJC Health funded our recent expansions at our Chatswood and Parramatta clinics with BOQ Specialist's help.

They then kindly profiled our clinic and yours truly.

Given my mission this year is to keep sharing the narrative of our clinic, why we do what we do, and why we aim to keep improving, I thought I'd share with you the article:

'From the start rheumatologist Dr Irwin Lim was in no doubt as to the type of practice he wanted to lead. He didn't have to look far to find others willing to support his vision.

It began with a broad mind and a grand plan. It resulted in a unique arthritis and rheumatology centre that operates across three separate Sydney locations, with over 40 staff and servicing a 50,000-strong client base.

Father-of-three Dr Irwin Lim completed his rheumatology training at Sydney’s Westmead Hospital in early 2004, joining Parramatta’s two-year-old The Bone and Joint Clinic shortly after.  The clinic, which had been started by another rheumatologist and exercise physiologist, involved a group of individuals working towards a team approach in the treatment of musculoskeletal disease.

“My brother, Errol, who is conveniently a top physiotherapist, owned a successful practice in Chatswood called Help St Physiotherapy and Sports Injuries Clinic. Between 2002 and 2008 Errol steadily built up that clinic, introducing remedial massage and gym services, as well as employing additional physiotherapists.

 “It made sense for the two clinics to join.” But the brothers were worried about mixing business and family. However in 2008 the temptation grew too great and the two clinics merged, with Errol joining as director.

Having evolved to incorporate endocrinology, psychology, geriatric medicine and dermatology to its list of services the duo felt a change of name was in order, so the clinics relaunched as BJC Health.

The year 2010 was a big year for the group, commencing an in-house ultrasound service and pathology collection at its Parramatta site. In May the same year, BJC Health opened its third clinic at Brookvale while a third director was invited into the fold—rheumatologist Dr Rob Russo. Another rheumatology colleague, Dr Herman Lau, joined as director in July 2013.

Dr Lim says while expansion has always been on the cards, the group took its time to develop its offering so that everything fit with BJC Health’s vision.

“There is a key theme of patient convenience and communication. We recognised that the way forward in improving the treatment of acute and chronic musculoskeletal injury would involve a coordinated, comprehensive service that no one doctor or allied health professional could reasonably provide. So we’ve set out to recruit practitioners who, under the right working environment, will come together as a team.”

Technological advancements have seen the group welcome arthritis patients from all over the state, drawn to BJC Health’s unique positioning as a world-class arthritis clinic.

Dr Lim says the group has moved beyond standard consulting rooms to better assist its patients. Clients have direct access to the practitioners via email, can call between appointments and can interact with them online.  Client files are kept on remote servers that the doctors can access at any time, and a recent upgrade has seen the group set up a system for online appointment booking.

Its physiotherapy team use an online exercise portal called MedBridge. Clients are able to watch video links or have handouts printed with pictures. All of which has been done, Dr Lim says, to engage, motivate and empower patients.

“For our patients with inflammatory arthritis, our rheumatology care coordinator can email them videos detailing aspects of the condition as well as the medications to be used. There are hyperlinks to access more patient information on our website and blogs.”

“We want to enhance the conversation and empower our clients. While we are proud of what we have achieved, there is so much more we want to do.”'

Wednesday, 25 May 2016

Tell Me Your Story: Suzanne Sagester

Suzanne Sagester
First time I heard that phrase, I was sitting in my doctor's office yet again because I was sick and flaring.  I have Lupus.  Diagnosed in 2008 and this way of life was my new normal.

I've always been energetic, "go for the gusto", "fun-loving", "life of the party" get the picture.  After years of being a legal assistant and an Assistant Property Manager/Office Administrator, I finally decided to go for my dream job.  At the age of 45, I went back to college and graduated cum laude with a Bachelor's Degree in Nursing.  All through school, I was tired...bone tired.  My first job out of college was being a nurse in the Surgical/Trauma Intensive Care Unit.  I had to work 12-hour shifts (NEVER just 12 hours) and a lot of overnight shifts.  That is when I began to get sick. The first major illness I had was pleurisy and I was out of work a week.  I just never seemed to recover.  I was always exhausted and catching everything coming down the pike.  Doctors all diagnosed me with "my age" and "work" being the culprits.

I ended up having to leave my dream job because I just could not do the overnights and it was required.  I got a job as a RN for a gastrointestinal group, ending up as Charge Nurse for them.  A highly stressful job.  I was repeatedly sick.  Always upper respiratory infections, colds and viruses...saw my PCP and pulmonologists and gastro docs, etc.  After one particularly bad illness, my body was in awful pain and I felt like I was made out of lead.  My PCP took blood work again and this time he called me to tell me he thought I had Lupus and sent me to a rheumatologist.  That was the beginning of my knowing about my new normal.  I was beyond shocked and very scared because this disease can invade your brain, kidneys, lungs, skin and even the gastrointestinal system.  It can be fatal.

I ended up having to leave my job after a three month absence due to illness.  I lost many friends because they got tired of asking me places and I was either sick or too tired.  The people in my family who have not researched Lupus don't understand and, even though they mean well, they offer advice such as "don't let it rule you", "exercise", "force yourself to get out more", "you don't look sick", and on and on.  Everything has changed for me and there have been many times when I thought about suicide.  I am a Christian so it is not an option; but I did and have seriously considered it.

Lupus is a big lie.  It will allow you to feel good a day or two and you find yourself cramming everything into that one or two days, which overdoes it and then you're sick for a week or more.  The symptoms go from headaches to your body feeling like it's been punched for hours to hair falling out to nose and mouth sores, to skin lesions that leave scars, to weight gain and high blood pressure because of all the meds you have to take...or all of them together.  Making plans is almost impossible because you NEVER know when the wolf will strike.

This is my new normal.  Every.  Single.  Day.  And lots of my Lupie friends have it worse.  Their organs have been attacked.  I have had numerous CT scans of my abdomen and lungs because of problems.  The fear of this and the depression is overwhelming.  That is the New Normal and it is hard and sad.  Hopefully, new and better medicines will become available to cure Lupus.  Maybe my Lupus will go into remission and not come back.  That is my prayer for us all.  Until then, we will just continue to live our New Normal lives the best we can.

Suzanne Sagester

Image: gingerbread men with differing outfits.  Text: Every story of life with lupus is unique. For World Lupus Day 2016, we're taking the whole month of May to share our stories.

This post was part of World Lupus Day activities throughout May on Sometimes, it is Lupus.  

Tuesday, 24 May 2016

Assessing the Safety of Therapeutic Goods

Do you ever wonder who is responsible for making sure medications and other therapeutic goods are safe?

This is a brief video by the Therapeutic Goods Administration on how they assess the therapeutic products they will approve for use in Australia.

Every therapeutic product (including the "natural" ones) is meant to cause changes in the body - which means that they all have risks as well as benefits.

When the TGA approves a product, that does not mean the product is "harmless" or is safe for non-approved uses.  It means that the benefits outweigh the risks for the particular purpose the product's been approved for.

The TGA keeps a register of every product it has approved for use in Australia, you can go to their website and search medications you are taking (both prescription and non-prescription) and find information about the product, including any recalls or other press releases, and often consumer safety information.

The internet's made the world a much smaller place, but beware of where you buy any medicines. If you buy from outside Australia, you may get a product the TGA hasn't approved, or may not be made to the specifications the TGA's approved, and it may even be an illegal import. (So it's possible to buy a medication that can both make you sick and make you party to an illegal activity.)

Oh, and if you do have a problem with a regulated product, make sure you (or your doctor on your behalf) report it to the TGA - that's vital information the TGA needs to keep doing its job properly.