Saturday, 26 October 2013

Unknown Future for the National Disability Insurance Scheme

Not all that long ago, the then Prime Minister Julia Gillard, announced the start of the National Disability Insurance Scheme (also known as Disability Care Australia).

It supposedly had wholehearted support from both sides of Parliament.

So, as it began to be rolled out, lots of people who have disabilities caused by lupus, along with all the many Australians who have disabilities from other causes, were waiting to see just what this new program would provide.

Well, politics is a strange business.  What a party believed in opposition may not be exactly the same as they believe in Government.

The new Treasurer, Joe Hockey has announced an intention to scale back or abolish the agency which manages the NDIS. Mr Hockey has said the work of the NDIS could be managed by the government owned private health insurance company, Medibank Private.  He's also indicated an intention to privatise Medibank Private.

I can't read minds, so I can't tell you why the new government would do this.  I can give you some possibilities:  A. the government genuinely believes this will give the best outcome for Australians with disabilities; B. the government wants to make disability someone else's problem and so is handing it over to private enterprise; C. the government wants to save money at all costs and thinks a good way to do it is to take money away from disability services; or D. the government would like to undo anything really good the previous government did so that voters will forget about it or think it failed.

As I said, I can't tell you exactly what the government is thinking, but it is interesting to note that there is no cabinet position representing people with disabilities.

Whatever the motive, if you object to this behaviour, and would like to say so, here is how to contact Mr Hockey directly:

Hon Joe Hockey
PO Box 6022
House of Representatives
Parliament House
Canberra ACT 2600

Or email:

The opposition (former government) does still have a Shadow Spokesperson for Disability. It's Jenny Macklin, who sent out an email yesterday on the issue.

She said: "I know that for many of you, the NDIS has been a long time coming. I also know that with the implementation of the NDIS you will now receive the care and support that you have always wanted.

"This has been a hard fight for many of you, but we now have a scheme that ensures Australians with disability aren’t treated like second class citizens anymore.

"We cannot let the Government take this away."

Previous post on NDIS/DisabilityCare Australia:

Sunday, 20 October 2013

Shielo Leave in Protectant Review

Well, I must have passed some milestone in the blogging world.

For the first time ever, I received an email, from a company which asked if I would like to review their autumn (obviously they're overseas) skin and haircare range.

I replied, that I'd be interested in any products for extremely sensitive, rash-prone skin.  What arrived in the mail was this:

It's Shielo leave in hair protectant.

Now, before I attempt to review the product, perhaps I should explain something about my hair care routine.

After many years of struggling with dermatitis on my scalp and hair falls (and I know lots of lupies know both of those things only too well), I am very fussy about my hair.

I don't go to hairdressers, unless I've been without any scalp or hair problems for a very long time.  I don't trust the chemicals they use, and I'm not sure they sterilize their equipment between customers.

I cut my own hair, keeping it comparatively short so it's less distressing when a handful randomly falls out (it doesn't look as much as if it's long hair.)  I dye it maybe once or twice a year, and again, only if I've been without any scalp or hair problems for ages.  I always use the same brand of dye, rather than risk something unknown.

I only wash my hair once a week, and then I massage a tiny amount of oil into my scalp first, to act as a barrier between my skin and the shampoo and conditioner.  Styling my hair consists of giving it a bit of a scrunch after it's been towel dried, and it naturally falls into waves.

My hair dryer and curling wand still exist somewhere, but haven't been used in at least a decade.

Because of all of that, you might not be surprised to know that I have no idea what a hair protectant is supposed to protect hair from.

I had a long look at the bottle, and read the information on it.  I still didn't know what its purpose in life was.  I asked a friend, but she didn't know either.

My 19 year old son has beautiful waist-length hair.  I asked if I could spray the hair protectant on his hair and see what it did. He looked at the bottle suspiciously and said, "I thought you were writing this review."

The bottle says it's for styling.  So I squirted a little on my hair before I scrunched it after it was washed.  My hair fell into the same waves it always does, with no perceptible difference. So trying it didn't tell me what it does, but I did find out that it doesn't cause an allergic reaction, well not for me, and not at the moment.

It smells quite pleasant. That's got to be a plus.  Unless of course, you're allergic to fragrances.

The bottle says it contains organic extracts, and is paraben free.  I looked at the very long list of ingredients on the back.   Some of them have alternate names written after them which indicate that the compounds do have some relationship to plants, so yes, it does have organic extracts, and the ingredients list doesn't include paraben.  So that's accurate.

It says it has UV protection.  I use 50+ sunscreen on my skin, but have never considered UV protection for my hair.  Not that I'm likely to be in the sunlight long enough for it to have any effect on my hair - if I were, I'm sure I'd be suffering from a major lupus flare as a result. So, no, I didn't test out the UV protection claim.

It also says it has antioxidants.  I understand that antioxidants in food are useful in combating free radicals which can cause disease and degeneration.  I don't understand how that applies to hair, which is already dead.

All that said, it smells pleasant, I didn't have a reaction to it (and I react to a lot of things) and the bottle says it's cruelty free, which is always a good thing.  So if you need your hair protected, from whatever dangers there are to hair, I guess this is as good a product as any.

Wednesday, 16 October 2013

Living in Cyberspace

Image: cat looking at computer. Text: I spend a lot of time on the internet. The real world is exhausting, and painful. I only go there for very special reasons.As you've seen from recent posts, I have been out in the real world a bit lately.

The real world's hard work.  I get fatigued very easily, and most things I do can add to my pain levels.

I try to do as much as I can on the internet, to save my "real world" energy for things I really want to do. Doing my groceries on-line means I can save some energy and avoid some pain, so I can go out with friends, or cook dinner for my family, or spend time with my baby granddaughter.

Using Quickflix for my movie rentals means I don't use energy driving to a video shop. Again, that's some energy saved for something more important.

Recently, I found out just how good the internet could be. My microwave was making ominous, crackling noises whenever it was turned on.  It was a cheap one to begin with, and quite old, so I decided it probably wasn't worth the cost to repair.  I started going to shops to look at prices for microwave ovens.  I quickly realised that it would be much easier, to do the comparisons online. I was thrilled to discover that The Good Guys lived up to their name.  Their website had customer reviews on all their products, the microwave I bought came from their local shop (so the franchisee wasn't left out by going via the central internet ordering system) and the delivery fee was only $2.

I've recently discovered online games, to play when I really don't have energy or brain space for much else.  Over in Blackwood and Bell Mysteries, I'm stuck in a Romanian cave with the bad guy getting away - because the next chapter of the game isn't online yet.  In Zombie Lane, Fettuccine has asked me for help with his new circus act - it involves clown zombies and flame throwers.   If you're playing either of those games, feel free to add me as a friend. My name is Ornithirinkus, which is how you spell "Ornithorhynchus" when you have brain fog.

To top all that off being able to browse and buy books at Amazon and have them just magically appear on my Kindle, has meant a lot more saved energy and pain.

It's not all that long ago that I wouldn't have thought of using the internet for anything but research - and I'd always check that with printed sources. Lupus has changed that dramatically.  The little bit of energy I have is too precious to waste on something I could do online. Now, the internet's one of my main tools for saving energy for the things I really want to do.  I still emerge into the real world, but I have enough energy to enjoy some of the best bits of the real world, now, not just the essential stuff.

In fact, today, I'm waiting for a new bench-top dishwasher I bought on ebay to be delivered. The dishwasher will mean my sore hip doesn't have to put up with me standing at the sink for so long, and being bench-top means it's just the right height to avoid too much bending or stretching.

Do you do everything on the internet as well?  I have two Quickflix gift cards (good for six weeks subscription to give away.)  The first two people (in Australia only) to email me their name and postal address will each get one.

This was is not a sponsored/paid post. None of the companies mentioned have been involved in producing this post in anyway. The Quickflix gift cards being given away were given to me as a customer to share with friends, not as a blogger.

Saturday, 12 October 2013

Visiting the Real World

I recently emerged from the internet into the real world.

Johanna Joy, 4020g and 55cm long,
a perfect reason to visit the real world.
It was a lovely visit, and one I wouldn't have missed for the world.  You see, my gorgeous new
granddaughter Johanna Joy was born early yesterday morning.

I hadn't thought anything could match the feeling of holding my own newborn babies; but holding my newborn grand-baby was pretty close. She is, of course, absolutely perfect and beautiful. (Just like her mother and uncle.)

I'm not biased at all. This is a completely objective viewpoint. In fact, to be sure I was being objective, I asked a panel of experts: my daughter, son-in-law and son.  100% of people surveyed agreed she was the most beautiful baby in the world.

A trip to the hospital for an hour or two visit means I don't have the energy for anything else. I've slept for most of the rest of each day.

I have been planning a number of posts to share with you. But they're not happening tonight, maybe not for a little while.  Eventually I'll get into a routine that allows me time to be with Johanna, and still write. Until then, if you don't see me on-line much, I'm out visiting the real world.

Tuesday, 8 October 2013

Say Hello To My Little Friend

Say "hello" to my little friend.
My new, portable tens machine.
(And Mr Woof and Mr Bumpy.)

No, I don't mean the cat or the dog in the picture, but if you want to get to know Mr Bumpy Cat and Mr Woof, you can meet them on

I ordered my new portable tens machine a couple of weeks ago, and have been enjoying trying it out.

Unlike the  big one I've had for quite a while now, it can go anywhere.  Powered by a  9 volt battery, the controller clips on my belt or waist band. I'm not tied to a power outlet.

The electrodes attach to whatever joints are sorest, and the wires feed under my clothes to the controller.

Tens machines produce electrical impulses that interfere with pain signals from the nerves. Instead of pain, the otherwise sore spot just feels a massaging buzz.

How good is it? Well, while my friends upstairs have been on school holidays, I've joined them on a few outings. We've been to the beach, and even for a walk through Ikea. With the tens electrodes placed on my sore hips and lower back, I managed to do it without being in pain. (Yes, I slept for about 36 hours straight after Ikea, but I was only fatigued, not fatigued and in agony.) I also went to a birthday party. (Now you know why you haven't heard from me much over the past couple of weeks.)

As with anything, I can't promise it would work for anyone else.  But I'm gaining a lot of freedom by using it.

Monday, 7 October 2013

I Wish I'd Been Told

I didn't know what to expect when I was first diagnosed with lupus.  I was just given the name of
the disease and that was it. I probably would have been told more if I'd asked, but I didn't know enough to know what I needed to know.

Some of the things I would have liked to have been told are:

  • "You didn't do anything to cause this."
  • "You will get tired. It's normal with lupus. Don't try to keep pushing yourself, it only makes things worse."
  • "You can take medication to reduce the pain, but don't expect to be totally pain-free."
  • "This will affect all of your life. Try to just accept it, becoming upset about it won't help."
  • "It will affect your family, your friendships, every one who is involved with you in any way."
  • "Lots of people who know nothing about lupus will give you advice on how to handle your condition. Just try to laugh it off."
  • "Your kids will cope."
  • "This is how you find a lupus support group....."
That's a few.  

I asked some other lupies on social media what they wished they'd been told when they were diagnosed. Here are some of their answers:

  • Danielle, USA. "I wish I'd been told anything. Everything I know I researched on my own."
  • Bobbie, Australia. "My doctors have been amazing, and I wouldn't change them. My big surprise has been that people (men) would see me as damaged, broken and too complicated."
  • Mary, USA. "I would like to have known how much my life was really going to change. That way I could have started planning for the future at diagnosis."
  • Carolyn, USA. "I wish I'd been told when diagnosed. Nobody bothered to tell me for about eight years, and I missed all that medical care. Male doctors don't waste time with older women! I'm still hurt and angry. Thank God for Dr Amanda Luchsinger. She got me to the right people, as did Dr Dumont. Thank you! It really hurt my health not knowing all that time."
  • Patty, USA. "That my kids would be OK, even great, growing up with a mom with lupus! It helped shape them into the wonderful young adults they have become."
  • Tanya, Australia. "I wish I was told how much Lupus sucks ass! On a serious note, I wish I was told just how much of a life changing roller coaster it would be with all the different symptoms/medicine side effects and all that it does to your body, mind, family and self."
  • Lisa, USA. "I wish I was told how hard it would be to find the right doctors to work with to help my conditions as they come and go.
  • Frankie, USA. "The emotional and psychological impact it would have on my life."
  • Jenn, USA. "Get a great psychiatrist and support group. More emphasis on the mental toll is needed."
  • Cindy, USA. "How lonely life would be. If it wasn't for the Lord, I would go nuts."
  • Twyla, USA. "I also wish  I was told how lonely this disease can be. If I'm told one more time I'm loved and will never have to face a flare alone again ... just for them to run the minute I have a flare ... my heart breaks each time ... I'm so happy for those of you whose partners are there and supportive!! That's my dream to have someone who doesn't run scared."
  • Tosha, USA. "I wish I had been told anything as well. I was told I had SLE and that was about it. The rest I have learned along the way."
  • Rosie, USA. "I wish someone had told me that my whole life would change with this diagnosis."
  • Christie, USA. "I was under the impression that if I took my meds and rested more I would be fine. I wish I had been told upfront to prioritize everything I want to do and how to plan ahead for busy days so that I'm rested up and can crash as soon as it's over."
  • Nidia, USA. "How difficult it would be to have the same life as before."
  • Kathy, USA. " I wish I had been told more than the one page handout that I was given that said Don't Panic it's Lupus at which time the doctor said just google the Mayo Medical Site and read, don't look at the pictures!"
  • Nikki, USA. "I wish I was told how much brain fog & being tired ALL the time would be such a frequent thing that's out of my hands!! Glad, my kids & hubby usually know what I am trying to say when I jumble everything up, they just chuckle and say bad day??? Makes me smile when I really want to cry!"
  • Sheri, USA. "I wish I had been told that I wouldn't be dead in 10 years. I've outlived that estimate by 14 years already."
  • Tasha, USA. "I wish people would have told me how hard it is to find good and understanding doctors."
  • Kandy, USA. "How little everyone knows about it or how little they care to learn about it."
  • Jen, USA. "Your life will go downhill and will be debilitating. The pain will be so bad that you won't be able to get out of bed. Oh you'll also lose all your friends."
  • Holli, USA. "Get ready for everything to change!"
  • Beth, USA. "The symptoms I was experiencing were normal for a person with Lupus. I needed to know what Lupus fog and fatigue was."
  • Amy, USA. "I wish that I would have known the personal loss of freedom. I am homebound so much of the time and it is hard. Especially when I was a very active person prior to my disease."
  • Julie, Australia. "I have got to tell you the one thing I wasn't expecting was CNS damage and neurosurgery. My optimism occasionally takes a battering but thankfully the ability to laugh at myself helps pull me through  I have learnt to be more grateful for good days, and take nothing for granted. I don't think anyone or anything anyone can tell you can truly prepare you."
  • Katie, England. "Wish I had been told to make friends with people with Lupus! That's been the biggest help to me."
  • Corie, USA. "I wish that I was told how my whole life would be turned upside down and inside out."
  • Twyla, Canada. "How difficult it is living with an invisible chronic illness."
  • Joke, The Netherlands. "Wish he would have told me how much my life would change. He did tell me it is a terrible disease and he can only do so much for me and that's frustrating to him too."
  • Pam, USA. "I was not told I read it on my Chart."
  • Peg, USA. "Wish they had told me not to be out in the sun!"
  • Veta, Canada. "I wish I had been told the seriousness of Lupus and not just given the basic 'You have an autoimmune disease.' How it leads to and is connected to so many other diseases. also how Lupus would affect the rest of my life. Lastly,what changes I need to make to have the best quality of life possible."
  • Katie, USA. "The emotional burden it puts on those closest to you, also the emotional toll it take on you mentally as well as physically."
  • Nada, USA. " I wish that they would have told me how much it would change my life. How at times you could feel ostracized, lonely, how no matter how well you took care of yourself, you would still hurt, still feel like a train wreck. How this affects the whole family and that it can tear families apart. How you can't depend on anything from hour to hour because your body changes literally with the weather. Sometimes you feel like no one understands. You try to explain but others just don't get it. One by one friends will drift away because just like cancer or a terminal illness, they just don't know what to say. They get tired of you having to reschedule a lunch date or a movie because you wake up that day feeling so sick you just need to pull the covers back over your head. I am so thankful for my doctors, and truly thankful for my two sisters, Ann & Millie, my niece Jennifer, and my son and his family. They are my rocks. they keep my spirits up, they motivate me and they are there with me every step of the way."
  • Cindi, Canada. "I was so grateful that I didn't have AIDS it didn't matter at the time!"
  • Mary, USA. "That symptoms will flare it's ok to feel bad and stay in bed and when you do expect criticism and sideway glances from those who think you're faking it."
  • Debra, USA. "I also had to research everything. It would have been nice to know anything more than where to pick up the meds!"
  • Julie, USA. "How each day is so different. It is the inconsistent symptoms each day and having a difficult time making future plans. Future being the next day, week or end of the month. Also how to deal with the extreme brain fog, fatigue, and full body pain."
  • Diane, England. "That all my symptoms were typical and what to expect."
  • Wendy, USA. "I'm sending you to a rheumatologist and she will test you with major expenses and tell you its inflammation from arthritis which you already know plus lupus."
  • Sallie, Australia. "Wish I'd been given the right diagnosis seven years earlier. Other than that I was told only that I had SLE and that I'd need plaquenil for the rest of my life and given another list of meds I'd need.  I wish I'd been told how much it would affect every other aspect of my life: physical , mental, financial, social and emotional. I've learnt along the way."
  • Eva Marie, Philippines. "It took my doctors six months to discover. cbc unstable. Fever very low grade and  I fall on the 11 categories for lupus symptoms."