Friday, 31 May 2013

Cold or Flu? Stay Home and Save a Life

It's cold and flu season.  And the ads have started on television telling us that if you pop a couple of
pills, you can carry on with your normal daily activity.

In fact, some people seem to think there's some sort of virtue in "soldiering on".

Let me tell you something about soldiers, they may be trained to kill, but they don't set out to kill people indiscriminately.

When I published an earlier post about Other People's Germs, there was a huge response on the Sometimes, it is Lupus Facebook page, including a comment from someone who had ended up in Intensive Care because someone with a cold had visited them. The visitor had been feeling better and didn't know they were still contagious. I was told of other lupus patients who died from cold or flu.

An older version of the "soldier on" ad.


In Australia, industrial awards allow for people to take sick leave - you get to take a couple of days off if you're genuinely sick, and you get paid for it.  For some reason, we have this bizarre idea that going to work sick instead of taking a legitimate sickie is something good to do. But conversely there's also a culture of "chucking a sickie" when not sick just to have a day off.

I'm not saying don't take your cold and flu tablets.  I'm all for relieving symptoms, and being comfortable.  But don't be comfortable and go outside, and breathe on things and touch things, and sneeze and cough on things, leaving rhinoviruses on public transport and door handles, and hand rails and money and all sorts of other things people can't avoid touching.

Be comfortable and stay home, read a book, listen to music, watch a movie (but one you already have at home, don't go out to the video shop.) Go to bed and rest, letting your immune system do its job of fighting off the invader.

Don't go out and spread your cold or flu to other people.  Don't turn your problem into a dozen other people's problem.  Don't risk giving it to someone whose immune system may be compromised.  Don't risk being responsible for someone else becoming critically ill, or even dying.

If you want to do something virtuous and heroic, don't go to work when you're sick.  Stay home, have a sickie, save a life.

Thursday, 30 May 2013

Calculated Risk

Picture of bottle of Plaquenil.Yesterday, I went to the opthalmologist.  I go every year, because I take plaquenil.  That's an antimalarial drug, actually, but it's frequently prescribed for lupus.  Taken long-term it has risks, like blindness.

It's rare, but plaquenil can cause severe damage to eyes, so anyone taking it ought to have their eyes regularly checked by an expert.

A couple of years ago, I had a bit of a scare, when one of my tests looked a bit odd, but it was fine the next time around (much to my relief.)

So why take something that could leave me blind?  Because lupus, untreated, can do much worse things.

I also take a chemotherapy drug called methotrexate.  The patient information leaflet for this little delight includes such warnings as "wash your hands after taking this medication".  Meaning, you don't want to get residue of this stuff on anything, it's that dangerous.  And I'm swallowing it, once a week, every week, for years. (If I were taking it for cancer, I'd only be taking it for a couple of weeks at a time, and after a few months I'd be finished with it for ever.)


Then there's the ever-popular prednisone. That can reduce bone density, cause cataracts, cause either anorexia or weight gain, increased blood pressure, fluid retention, etc, etc.

How about sulfasalazine, which has the potential to damage pancreas, kidneys, lungs and it seems almost anything else?

I take lots of other toxic drugs as well, all in a carefully-balanced cocktail.

Why swallow these poisons?  Why take the risk?

If lupus is left untreated, it can cause more than the aches and pains and fatigue and brain fog I struggle with every day.  Untreated, it's a time bomb.  It can attack any organ at random, and it can be fatal.

So, for now at least, I dutifully swallow my pills. And I hope and pray for better and safer treatments, and eventually a cure.

If you're not sure about the side-effects of your medications, or any information you need about taking them, check the patient information leaflet that should have come with the first package of it you had.  If you've lost that, go to the NPS Medicine Finder, type in the name of your medication and follow the link to find the patient information leaflet.

Lupus Hands

Picture of a hand.I've been thinking about my hands....

My hands used to hit boards and break them,
Now they drop plates and break them.

My hands typed the final draft of a Masters' Thesis in a couple of days.
Now a blog post leaves them tired.

My hands used to be able to play guitar for hours,
Now they last a few minutes, and hit wrong notes when the fingers don't stretch quite far enough.

My hands used to be constantly moving, creating, doing craft, painting, drawing.
Now they do a little and get sore and need to rest, and none of the work is as fine and as detailed as it used to be.

My hands used to be able to lift and carry things.
Now I use a Kindle because so many real books get too heavy for my hands to hold after a while.

My hands, like most of my body, got old far too young.

Wednesday, 29 May 2013

Shoes Is Shoes - But The Issue Isn't Just Shoes

Picture of beautiful high heeled shoes, with text: "Lupus changes everything: everything about how you live your life, even down to the shoes you can wear."Back in 2011, I wrote a post, De Agony of De Feet, complaining about not being able to wear
beautiful high-heeled shoes, or shoes with even slightly pointed toes, or basically any even slightly attractive shoes at all.

Yes, I hate that I can't just go to a regular shoe shop and pick any shoe that I like. When I go to the chemist and shop for shoes in the Homey Ped section, and then have to buy D or D+ (when even their attractive shoes are never any wider than C), I find myself thinking that I got to be an old woman far too young.

But there's more to the shoe issue than feet and shoes.

There's a thing ministers encounter in pastoral care. People talk for a while, but just as they're leaving say "by the way..." and then the real issue that's bothering them comes out.  It's a common thing, it even has a name in pastoral care textbooks, but I can't tell you what it is because my lupus-addled brain doesn't retain that kind of information any more.

If you'd like to go and read the original post, I'm happy to wait here.....

You're back?

OK then, well, by the way...

Yes, I do miss beautiful shoes, but there's more to it than that. Lupus has messed with just about every part of my life.

I don't just miss shoes.

I miss my profession.  I miss feeling like a useful, contributing, member of society. I miss paying taxes to support other people's pensions.

I miss only visiting the doctor once in a while.

I miss being able to go out without spending a week recovering.

I miss going out without carrying a pile of tablets, just in case I'm out longer than expected.

I miss just walking instead of having a limp which reduces to a hobble after the first five minutes of walking.

I miss my sport (I did martial arts).

I miss having a body that just did things, and wasn't bloated up on steroids.

I miss my memory. I miss knowing what day of the week it is, where my keys are, the name of the person I'm talking to, and what we were talking about.

I miss being able to plan things, and then do them. (Rather than discovering at the last minute that I'm too sick.)

I miss being able to drive a manual car, that didn't have power steering.

I miss being able to use the stairs.

I miss so much that lupus has taken away from me, including the shoes.

Tuesday, 28 May 2013

How Do You Know It's A Flare?

How do you know you're having a lupus flare?

These are some of little hints you might notice....



  • You don't have the energy to shower.
  • You cancelled your doctor's appointment because you're too sick to go.
  • The dishes haven't been done since the day before yesterday, and today and tomorrow don't look promising.
  • You slept through the alarm. (Clock alarm, fire alarm, firemen breaking down the door....)
  • You've made five cups of coffee and not remembered to drink any of them.
  • You keep checking the calendar, but still don't know what day it is.
  • Inanimate objects are colluding and attack you at every possible opportunity. The plates have flown out of the cupboard at you, the floor's moved out from under you, the wall has jumped into your path as you walked down the hallway, the cup leapt out of your hand....
  • You think you used to own keys, glasses and a purse, but there's currently no evidence that they ever existed.
  • You have aches and pains in random places like the last joint of your left little finger, your right knee and half a dozen random vertebrae.
  • Someone is testing an atomic weapon inside your skull.
  • The kids and pets appear to have gone feral.
  • You can't remember if you took your lunchtime pills - or had lunch - or can tell the time.
  • You decide that if you must wear shoes, you'll go for slip-ons, because you can't manage buckles or laces and you're not even sure you can do up velcro.
  • You realise that an apple is a much easier meal than anything that requires cooking, or even a plate.
  • You search your wardrobe for something you can wear without having to do up buttons or zips.
  • The phone rings and you can't work out what to do about it.
  • You're so tired you don't have the energy to go back to bed.
  • You nap more than the cat does.
  • You forgot your pin number, all your passwords, your email address, how to spell your name...
  • You look for a lift, because there's no way you can manage stairs.
  • A friend offers to take you to your favourite restaurant, and you make an excuse and go to bed early instead.
  • Your eyes are so dry and gritty you could use them as sandpaper.
  • On a scale of 0 to 10, your pain level is sitting somewhere near a thousand.

Slow Recovery

One of the really annoying things about living with lupus is the time it takes to recover from good things.

It's one thing to have to spend time recovering from being sick, but having to spend days or even weeks recovering from having done something nice is just annoying.

My daughter's wedding was Saturday, and yes, I did do a fair bit in the week leading up to it.

For days now, I've been tired, sore, brain fogged, depressed, and clumsy.  It's just how it goes. I used up more energy than I actually had available and now I have to pay for it.  Yesterday, it wasn't until my son asked the usual late-afternoon question "what's for dinner?" that I realised I had forgotten to eat all day.

At least I remembered to eat breakfast today, and I don't feel particularly depressed, just a bit overwhelmed at the things I need to catch up on.

I'll actually start doing things today, in between naps. I need to start slowly, to "potter around", just doing little bits here and there and resting in between.

Monday, 27 May 2013

Fatigue and Depression

I don't know if it happens for other lupies the same way, but for me, fatigue and depression often go hand in hand.

Last week, getting everything ready for my daughter's wedding on Saturday, I was so hyped up, had so much to do, that although I knew what the consequences would be, I kept pushing myself.

The thing with having limited energy is that it is sometimes possible to put a little bit on the "credit card", to spend energy I really don't have.  But eventually the bill comes due. Yesterday, I had no energy at all, and today, if anything, is worse.

Today, I'm like a limp rag.  And I'm crying at the stupidest things.

I've just seen myself in the wedding pictures - and I look fat.  I know that.  That's why I'm weaning off steroids. Not only that, but the dress I'd bought for the wedding was too small when I went to put it on, and I'd had to dig through the wardrobe for a second choice, which was also too small, so I'd worn my third choice.   So in the photo, I was fat, and not in the beautiful new dress I'd bought, and was also in the same picture as my ex-husband.

On the day, none of this had mattered.  All that mattered was that my daughter looked beautiful and was happy and enjoying her day. Everything was perfect for her, and that's all I wanted.

Today I'm feeling sorry for myself.  And I know logically it's pointless to do so.  I am addressing my weight issue, that's why I'm taking the pain that comes with weaning off prednisone.

Of course my ex-husband was in the same photo as me, it was the bride's family photo.

No-one happened to take any photos of me without him, because I couldn't avoid him.  He stayed right beside me virtually all the time, joined in every conversation I had with anyone, and generally made it look like we were together.  People who didn't already know either of us, assumed we were still married. Fortunately the groom's grandmother (who did know) took pity on me and stayed with me as well, probably to stop me from killing someone.

On the day, I put up with it. It was my baby's wedding, and she was beautiful and happy and that was all that mattered to me.

Today, I'm in tears, remembering my own marriage which had no space for me to be me, but every conversation had to involve my ex-husband, every move I made was shadowed by him, every telephone call, every email, every letter all had to go through him.

When I've slept enough for my fatigue levels to go back to "normal", I will be fine.  Until then, I guess I can expect to be teary over things that were fixed years ago, and things that I'm well on the way to fixing: things that are nothing to cry over because they're already resolved.

Business of the Week: Levity Layne

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






Levity Layne
Bamboo Fabric Breastfeeding Covers
Owner/Manager Kerri Bryson (Lupus)




Kerri explains the reason for making her breast feeding covers in this excerpt from her site.....
item
LEVITY LAYNE

HI TO ALL!

I have two fantastic sons and a wonderful husband. I’m a working mum and after breastfeeding both of my boys I found there were a few obstacles feeding in public. There were no covers around at the time I was breastfeeding my boys so I used baby blankets and throws to try to cover up while I was feeding as I was not confident to feed in public with no cover up. The frustrating thing was trying to keep the blanket over me so I wasn’t exposed but trying to pull my top down at the back to cover up. Then years later I was working in a baby store and listened to a lot of frustrated mums with the same problems as I had all those years before. So with a bit of thought I came up with my breastfeeding cover. I started selling at markets and had a great response. So with a little bit more thought and research I found that the best fabric for my covers was the Eco Friendly BAMBOO fabric. Now we have just launched our covers at the 2011 Perth-PBC Expo with a great response.

Thanks for you time.
Kind Regards
Kerri Bryson

Sunday, 26 May 2013

Ask An Expert: Concealing Lupus Rashes

While my daughter was in the chair for her make-up and hairdressing for her wedding, I took the
Concealers are either yellow-based or green-based.
opportunity to ask the beautician about an issue that bothers a lot of people with lupus: how do you hide rashes on your face?

The answer wasn't to layer on more and more make-up.

She said to start with a silicon-based primer. (Yes, it sounds like painting a house.)  This puts a layer between your make-up and your skin.  It protects the skin from having any reactions to the make-up (so it means your make-up shouldn't aggravate your rash), and also helps the make-up last longer.

The next thing is to choose the concealer colour you really need.  I always thought concealers were supposed to match skin tone.  Actually they're meant to be the opposite of what they're concealing.

Concealers are either yellow-based or green-based.

Yellow-based concealers are to cover things like dark rings under your eyes.  Anything dark, and that blue-black colour gets covered with yellow.  The darker the colour, the more yellow the concealer needs to be.

Green-based concealers are to cover red, so red rashes, broken capilliaries, any red marks at all.  Again, the darker the red, the more green the concealer needs to be.

You don't need tons of concealer, just the right shade.  The cheaper brands of make-up (which I usually use) don't give a lot of choice, and usually just have lighter and darker tones. So for those of us who really have something to conceal, probably need to get high-end concealers which are categorised according to how yellow or green they are. (Even if we keep using our $5 make-up apart from that.)

Friday, 24 May 2013

Finding the Easy Way

The cake I made for my daughter's wedding.
When I was a teenager, I went to some cake decorating seminars with my mother. Yes, I was a strange teenager.

One of the lessons I learned back then, was to get royal icing to work properly that it needed to be beaten with a wooden spoon. It wasn't just any wooden spoon, either. It had to be one kept specifically for royal icing, with no chance of being contaminated with any oils or other non-royal-icing material.

I've just finished making and decorating my daughter's wedding cake.

You know how I made the royal icing? I beat it in my Kenwood Chef electric mixer. There was no way I was going to be able to beat a kilogram of icing sugar into four egg whites.

Guess what? I couldn't tell the difference between that and the royal icing I used to make "properly".

For those flowers on the cake: I used "soft icing mixture" (a gluten free one) instead of pure icing sugar, and the sugar paste I made with it was actually easier to use. It took less kneading, didn't need the board and all my tools dusted with cornflour, and it was just as easy to shape.

I also used a new cutter I bought, which does five petals at once, which are also easier to shape once they're cut, rather than the one petal at a time I'd learned. It's faster, but it's also less tiring, and less work for fingers to do.

The lesson from this?

Lupus makes life much more challenging, but sometimes there's easier ways to do things than the way we've always done it. Finding an easier way, can make it possible to still do the things we love, despite our limitations.

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.

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.)
Coconut Ice, Chocolate Fudge and
Peanut Brittle all packaged up.
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

  1. Line a 30cm x 30cm baking tray with baking paper.
  2. In a large saucepan, mix 1 1/2 cups sugar, 1/2 cup water, 1/8 teaspoon cream of tartar.
  3. Stir over low heat until sugar dissolves.
  4. Brush down sides of saucepan to remove grains of sugar.
  5. Increase heat and boil without stirring until mixture reaches 113 deg C.
  6. Remove from heat. Allow to cool slightly.
  7. Add vanilla, and coconut, and beat with a wooden spoon until thick and creamy.
  8. Pour into prepared tray.
  9. Repeat steps 2 to 7 with remaining ingredients (adding in the pink colouring at step 7.)
  10. Pour pink mix over white mix.  
  11. Allow to set.
  12. 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

  1. Line a 30cm x 30cm baking tray with baking paper.
  2. Place sugar, milk, margarine, cocoa and cream of tartar in a large saucepan.  
  3. Stir over low heat until margarine is melted and sugar dissolved.
  4. Increase heat and allow to boil until the mix reaches 115 deg C.
  5. Remove from heat. Allow to cool slightly.
  6. Add vanilla. Beat until thick and creamy.
  7. 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

  1. Line a 30cm x 30cm baking tray with baking paper.
  2. Roughly chop peanuts. Sift bi-carb over peanuts and set aside.
  3. In a large saucepan, mix sugar, water and cream of tartar. 
  4. Stir over low heat until sugar has dissolved.
  5. Increase heat and boil without stirring until toffee is a pale amber colour (brushing down sides of pan as needed.
  6. Remove from heat. Add peanuts and bi-carb. (The mix will fizz.)
  7. Stir lightly and then pour in to baking tray. Spread with a buttered knife if desired.
  8. Allow to set.
  9. 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. 

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:





Lupus Kills

Deaths from lupus are rare these days, that's what you'll read in books and on websites.

It's true, deaths are rare in comparison to times when less was known about the disease and how to manage it.

But if someone close to you were one of the people who did die from lupus, you wouldn't really care that it was "rare" would you?

Having a condition which has no cure is frightening. Many people with lupus say they'd rather they'd had cancer, because then there'd be some hope of being cured... not just living with this ticking bomb which may or may not randomly decide to take out some vital organ needed for survival.

For lupies, so far, there's no hope of being cured (please keep praying for the researchers who are working to change that), only of keeping it under control. Because lupus is completely unpredictable, that means there's no way of knowing which of us will be those "rare" deaths.

It's not something any of us want to dwell on. But it's a reality we are all aware of.

There needs to be far more awareness of lupus, and more funding for research. We need a cure: the sooner the better.

Saturday, 11 May 2013

Weighty Issues

One of the many issues that a lot of lupies seem to face is managing our weight.

Some of the literature about lupus warns that anorexia can a symptom of lupus. Some of the patient information sheets that come with lupus medications also warn that anorexia can be a side effect.

Talking on Facebook, there's a number of lupies who struggle with being underweight. They try, but lupus or medication just make them so sick they can't eat enough, or eat and can't keep down enough, to gain weight.  They're just always unhealthily underweight. It's not anorexia in terms of the poor body image, it's just a simple practical issue of it being a major effort to try to eat enough energy for their body's requirements.

Then there's the group like me.  Medication, and steroids get blamed more than most, but some others get the blame as well, make us put on weight. Prednisone (steroid) causes fluid retention and uncontrollable appetite as well as a number of other equally unpleasant effects. Some people (very heroically to my mind) have won the battle of losing weight on prednisone, but there's lots of us who have tried and tried and just haven't got anywhere.

I'm at the stage of having asked my GP to help me wean off prednisone so I can lose weight. My rheumatologist insists that I need to lose about a third of my bodyweight, and I've struggled for years but been unsuccessful while taking prednisone.

I'm sure there are a fair number of lupies who manage to stay within a healthy weight range. For others of us, both lupus and lupus drugs make it very difficult to manage something that is so basic and important to health.

Lupus Lunch

Just a quick share of pictures from Lupus Association Queensland's World Lupus Day lunch at the Mount Coot-tha Botannical Gardens restaurant here in beautiful Brisbane. (No pics outside in the gardens, because it was raining.)












Lies, Damn Lies, and Statistics


When I first did the lupus awareness image above, I had on the right an Australian figure.  The number seemed to me a bit low, but I'd got it from an authoritative site, so I figured it must have been fairly close to accurate.

(Of course, the place I'd love to get my information is the latest peer-reviewed medical research journals, but  subscriptions to those are a bit too expensive for someone living on a disability pension.)

After putting it up on Facebook, I was told in no uncertain terms that it was wrong and I wasn't helping our cause by lying about the numbers or minimising the situation.

Which highlights a very annoying thing about lupus.

It's very hard to track down any reliable figures.

There's lots of people with lupus. But exactly how many is impossible to know.  Even that 5 million figure is probably hopelessly out of date, I first read that several years ago, and with the planet's population increasing and no cure for lupus having yet been found, it stands to reason that there's probably far more than 5 million of us by now.

I've seen stats on death rates that vary from 10 per cent to 30 per cent.  Twenty-nine per cent seems to be being shared around a lot at the moment, but I can't find where the figure originated or how it was calculated.  Not all lupus deaths are listed as lupus deaths.  Some are listed as renal failure, or some other effect of lupus, without the cause being recorded.

What can I accurately tell you about the number of people who have lupus, and lupus death rates?  There's a lot of us, and quite a few of us will die from lupus. Well that's definitive, isn't it?

Friday, 10 May 2013

World Lupus Day



Lupus affects about 5 million people worldwide.

At least 10% of sufferers will die from it, although some sources estimate that at closer to 30%.

The rest of us will have times when we suffer so much from pain, fatigue, and any number of far more serious symptoms, that we just wish we were dead.

There is hope. In the last couple of years, the first drug specifically to treat lupus has been developed. (Until now, all lupus treatments were developed for other conditions.)

Researchers from the John Curtin School of Medical Research at Australian National University have recently discovered roquin, the gene behind lupus and other autoimmune conditions. This brings the possibility of a cure dramatically closer.

The tenth of May is World Lupus Day.

Today is a good time to take some time out to pray for those who have lost loved ones to lupus, to learn more about lupus and support those who are researching

And if you have the opportunity, please show a lupie some love.

To those readers who are lupies, I hope today is a special day for you. Remember you are not alone.

Thursday, 9 May 2013

World Lupus Day is Tomorrow


Well, tomorrow's World Lupus Day, and I've got my finger hovering over the "publish" button for the Warriors' Wall project to go live first thing in the morning (or maybe last thing tonight so it's already up for the beginning of the day).

It's been a great privilege for me to read so many lupie's stories, and I'm sure it will be for you too.

Lupies, whatever you're doing tomorrow, put on your orange (or purple, if you're in the part of the world where the lupus awareness colour is purple) and wear it with pride. The wolf may have attacked you, but it hasn't beaten you. You're still here to fight another day.

Those of you who aren't lupies, please show a lupie some love. World Lupus Day reminds us of our strength and how far we've come and the challenges we've faced - but it also reminds us that we have even more challenges ahead before we get a cure. We may have a lot to celebrate, but we still have plenty to fear as well as to hope for.

(Note, I'm in Australia. Those of you in the USA are a day behind me.)