Friday, 30 November 2012

Message from Queensland Health Regarding Heat Stress Danger

Dr Michael Cleary, Deputy-Director General, Queensland Health talks about heat stress symptoms.

30 November 2012 - Queensland heatwave

Parts of Queensland are currently experiencing very high temperatures so it is important we do everything possible to protect ourselves from heat related illness.

Call 13 HEALTH (13 43 25 84) at any time for practical medical advice & assistance - in an emergency call Triple zero (000)

(Reproduced from Qld Health via YouTube)

Thursday, 29 November 2012

New in the Lupus Business Directory

There are two new businesses in the Lupus Business Directory today:

Altered art jewellery by Deana Cravalho (lupus and ET)
A portion of proceeds is donated to American Lupus and Cancer societies.

Jewellery, clothing and other items by  Alyssa Miller (Chiari 1 malformation and Ehlers Danlos which is a connective tissue disorder) 
All profits go towards the cost of Alyssa's service dog.

It's well worth a look at the incredible work these two ladies have produced.

Looking Forward

What would I do if I could accomplish any one thing in 2013? It's the National Health Blog Post Month prompt for today, and has me wondering....

There's so many things I'd like to be able to do: to get well enough to go back to work; to get to a healthy weight; to simplify my life and get rid of many of my possessions; to move to a smaller (easier to manage) home, preferably with no carpets to vacuum; to finally find the love of my life; to pay off another of my debts; to write a book about living with lupus; to write two fiction books that have been running through my mind for a couple of years; get the membership of the Sometimes, it is Lupus Facebook page from the hundreds to the thousands; adapt to life with my daughter living away from home ...

So many things I'd like to do aren't realistic at all, and others I'm already working on.

But a big goal? A major achievement for the year? I'd like to see awareness of the Lupus Business Directory spread.  I'd like it to be something people use regularly - that maybe even they check if there's a business in the directory producing what they're looking for before they look anywhere else.

There are a number of problems with setting that as a major goal.  I don't know how to measure whether I've succeeded.  It's not something I can do on my own - I don't have a budget for an advertising campaign, so I'm reliant on word-of-mouth, on people telling other people and sharing on social media.

I don't know how I would measure, but I really would love to discover that my little project really did make a difference for people struggling with the financial burdens of chronic illness.

So, I'd like your help.

If you know of any businesses (or have one) owned/run by people with chronic illnesses, please email me the details.

Please share the Lupus Business Directory link with your friends, and tell them about the goal of helping people with chronic illnesses to earn their own income.


Wednesday, 28 November 2012

Heat Warning

It's the start of what is going to be a long, hot summer.

The weather bureau was talking on the radio this afternoon of temperatures up to 10 degrees higher than normal.

So it seemed like a very good time to share this information from Queensland Health about the health dangers of hot weather, and how to avoid the risks.

Gluten-free Christmas: Christmas Pudding

Fruit mix
2 cups mixed fruit
half cup brown sugar, firmly packed
90g dairy-free margarine
2 tablespoons golden syrup
quarter cup brandy
half teaspoon orange essence
one cup water

Dry mix
1 cup gluten free plain flour
half cup almond meal
teaspoon mixed spice
half teaspoon cinnamon
half teaspoon xanthan gum
half teaspoon cream of tartar
quarter teaspoon bicarbonate of soda

Egg mix
1 egg
drop Parisian essence (or a shot of espresso, cold)

  1. Put fruit mix ingredients in a saucepan, heat gently until margarine has melted, and sugar has dissolved.  Remove from heat and cool. 
  2. Sift dry mix into a large bowl. 
  3. Add cool fruit mix, and the egg mix. Mix well.
  4. Pour into a greased six cup pudding basin, and put on the lid.
  5. Place into a large saucepan, and fill add water, until the water comes to about half-way up the side of the steamer.
  6. Bring to boil, and simmer four hours, adding extra warm water if necessary.
Serves 6.
Can be frozen.
Serve hot with custard or cold with cream or ice-cream.

This is gluten and lactose-free.

Snake Oil



Here's some I've looked at so far:





Tuesday, 27 November 2012

I Bet You Didn't Know....













Monday, 26 November 2012

Gluten-free Christmas: Rum Balls

1 cup sultanas
40ml  rum
250g packet plain gluten-free biscuits (I used Leda's arrowroot biscuits, which are also lactose-free)
1 cup desiccated coconut
half cup cocoa powder
half cup caster sugar
2 tablespoons apricot jam
extra coconut for rolling

  1. Put sultanas and half the rum in a sealed container, shake, refrigerate for at least a week, shaking from time to time, so until all the rum is absorbed.
  2. Crush the biscuits (either in a food processor, or place in a plastic bag and crush with a rolling pin.) 
  3. Place crushed, biscuits, 1 cup coconut, cocoa, and sugar in a bowl, with soaked sultanas, the rest of the rum, and the jam.
  4. Mix the ingredients together, then take spoonfuls of the mixture and form into balls.  Roll each ball in extra coconut and refrigerate.
Recipe makes about 30.
Recipe is gluten-free, (lactose free, vegan friendly depend on the type of biscuits used). 
These rum balls are very rich. 

Business of the Week: Bella's Crafting

This week's Lupus Business Directory Business of the Week is Bella's Crafting. Tina and Shirley make the most awesome Christmas decorations, so now is the perfect time to look at their Facebook page.

Here's their Listing:


Issues Healthy People Don't Have

Today's health blogging month prompt is to make a meme and talk about it.

I'm guessing this means "meme" in the sense it's come to be used, as a picture with words on it - not as Dawkins originally coined it as an idea that  reproduces itself (as a gene reproduces itself.)

So, working with that definition,  I've started making a series of lupus awareness images which compares our lives to the lives of healthy people.  So it's "issues healthy people don't have". So far, I've done seven, picking out bits of things that many lupus patients have to take into account in our everyday lives, that people who don't live with a chronic illness never have to consider.



Another issue healthy people don't have is whether or not their health will allow them to earn an income. Check out the Lupus Business Directory to see the creative ways some people are trying to earn an income, while working around their health limitations.

Sunday, 25 November 2012

Where There's A Will








Saturday, 24 November 2012

If I Had Unlimited Money
If I had unlimited money.....

OK, I have to confess up front, I'd deal with my own personal financial crisis - clear my debts and make sure I had somewhere to live.

After that, I think I have four priorities for money:
  1. Lupus research. I would really want to help towards better understanding of lupus, better treatments and ultimately a cure.
  2. Improved support systems.  Here in Queensland, we have a social group for support for lupus patients, but it would be great to have counselling services, information services, referral services, etc. Maybe it could even link lupus patients with discounted or subsidised services for things like house cleaning, yard maintenance, etc - the things we don't manage so well for ourselves.
  3. Helping people with lupus help themselves.  Based on the Lupus Business Directory, I'd love to be able to provide free services to help people with lupus and other chronic illnesses to earn their own income. There's a degree of dignity to earning your own income, that we can lose when we lose our ability to have a regular job. Even to earn a small amount from something we've done makes a difference to our sense of self-worth.
  4. Lupus awareness.  There are so many health conditions that are far less prevalent than lupus that people generally know more about. That's because they get advertising and awareness campaigns.  Those kinds of campaigns take either money or someone famous backing them, or both.  More awareness would mean lupies would have to deal with less of the assumptions about how we look healthy therefore we can't really be that sick.
There's a lot of things money can't do.  But there are some areas where it really could help.  It would be wonderful to see someone who did have the money put it into some of those areas. 



While we're on the topic of money, how's your Christmas gift shopping going?  Is there anyone you still need to get something for?  While you're here, take a look at some of the businesses in the Lupus Business Directory, see if you can find that present you're looking for.

Friday, 23 November 2012

How To Help

After my What Lupus Has Taken Away post, there was a comment asking how to help.

I've been thinking about that.

I checked about adding a "donate to this blog" button, but I'm in Australia, and to ask for donations I'd have to be a registered charity. (You don't become a registered charity by not being able to pay the rent.)

So to help financially there are a couple of things possible:

If you own a business relating to health, you could sponsor a post on this blog (or a business relating to animals, you could sponsor a post on In either case, I charge $25 AUD per post.

You could buy some of my books. They're available in paperback or epub from Lulu, or in Kindle edition from Amazon.  Or you could buy some of my tee shirts from Iris' Shirt Shop. Or you could share any of those links on your own Facebook, Twitter, Google+, Pinterest, etc, to help promote them to others.

There's also paid ads back on this site. Paid ads are only paid if someone clicks on them (and of course I can't ask you to click on them - there's ways of filtering out too many clicks), and in more than a year, I have not had enough clicks to be paid anything yet.  It takes a very long time.

But that's just me.  There's lots of people with lupus and other chronic illnesses who are in the same situation.  One of the big issues with chronic illness is that it takes away a big chunk of our ability to earn an income.  And nowhere in the world is social security so good that it makes up for what we lose.

So you know what's coming next, don't you?

The Lupus Business Directory is my project to help people with chronic illnesses to help ourselves.  Any time you purchase anything from the directory, you are helping someone who has a chronic illness. At this time of year, you're buying gifts anyway, and the Directory's got plenty - jewellery, books, handcrafts, clothing, cosmetics, even perfumed candles.

So just as you can help me by buying my products, you can help many other people in a similar situation by buying from them, and by sharing the link for the Business directory.

The Best Doctor's Appointment
You know what the absolute best doctor's appointment would be?

It's a fantasy I have, it goes like this:






Thursday, 22 November 2012

Giving Thanks
Today's Health Blogging Month topic asks what I am thankful for.

This runs the risk of sounding like some awards speech, but there are so many people I am grateful to and for, and so many circumstances I am grateful for. I know I complain at times, but really, my life has been very blessed.

So let's start with the people:

I am incredibly grateful for my kids.  God has blessed me with the most absolutely amazing kids on the planet.  They have had struggles and challenges that not everyone their age has had to face, and they always come out on top.  They never question reaching things for me, lifting things for me, or even helping me with my shoes on really bad days.

I am grateful for my amazing friends, who are there to support me through pretty much anything, and put up with me changing plans at the last minute and all sorts of other inconveniences. Who support me in very practical ways, as well as emotionally.  Among my friends, I list the members of Ashgrove West Uniting Church congregation - they're more than my church, they're my family.

I am grateful for my GP, who is incredibly caring and understanding, and to my specialists who really know their stuff.

I am grateful for God, being with me through every event of my life, whether positive or negative, so that I'm never left feeling that I have to sort everything out by myself.

I am grateful for the on-line community. For all the amazing people who live in my computer. Those of you who read my blog and leave me comments, those who I meet on Facebook, Twitter, and Google+. It doesn't matter what time I log on, day or night, there's always someone wonderful waiting in my computer to share the ups and downs of life with.

I am grateful for everyone who has bought any of my books or tee shirts, for the friend who sends me gifts of money, for the business that is going to pay for my first sponsored blog post.  I don't know that you realise just how much this means to me. With finances so tight, every little bit of "breathing room" in the budget is a huge relief and a blessing.

I'm grateful to the friends who gave me their portable air conditioner when they upgraded to a wall-mounted one. (It makes a massive difference to my fatigue levels in the Queensland summer.)

I am grateful for all of those people I don't know, working in laboratories, and hospitals, and universities, trying to find new treatments, and maybe even a cure for lupus.

I'll probably think of a dozen other people as soon as I hit "publish". (That's the risk with lists like this, and my brain fog.)

On to the circumstances I am grateful for:

Despite the fact that I have lupus, I have only lost two organs (appendix and uterus), both of which I can live quite easily without.

I am grateful for all the pills I hate taking so much. I know that in many places in the world, they would be hard to come by.  Thanks to Australia's Pharmaceutical Benefits Scheme, medication is affordable. And because I have all that medication, I am much healthier than I might otherwise be.

 I am grateful that I have a roof over my head, and I have always been able to provide a home for my kids. And as I start the process of applying for public housing, I am grateful that the Queensland Housing Department exists - and that even if it's a long waiting list, there will eventually be some suitable housing available for this next stage of my life.

And I'm grateful that we've always had food to eat, and somehow (sometimes it's a miracle) the bills all eventually get paid.

I am grateful that even when my brain fog's been really bad, I've still been able to write reasonably coherently most of the time. Writing is part of who I am, and if I lost that I would be devastated.

I'm grateful for the old dog who spends most of his time right beside me, and insists on naps at the right time. And for a cat who constantly causes trouble, but is very loving and knows when I most need a warm cat curled on a sore spot like a furry heat pack.

I'm grateful for that little bit of time after my divorce when I was still working full time, and was brave enough to take the financial risk of spending a couple of thousand dollars to take the kids on our only ever overseas holiday.

As with people, there's probably lots of other things I could add to the list, and will think of them after I hit publish.  My life is full of wonderful blessings.


New In The Lupus Business Directory

New in the Business Directory today we have:

Dianne Petersen (Lupus, fibro, osteoporosis)
Facebook page management, Facebook tutoring, 
social media marketing.

For those of you overseas: "Qld" is short for Queensland - the north-easternmost state of Australia. (Where I am.)

Wednesday, 21 November 2012

The Bottom Of The Well
Today's National Health Blog Post Month prompt is to write about mental health.

For many people, myself included, depression just goes with chronic illness.  We have bodies that aren't working properly anyway, and endless drugs which can mess with mood, and we have things to legitimately be unhappy about.  It all adds up.

Upfront, let me say, I do take antidepressants. There's no shame in taking them if you need them. Mental illnesses like depression are no different from physical illnesses. If your brain chemistry is such that prescription drugs are going to help, then it's worth taking the doctor's advice and taking the pills.

But I also work on my thinking processes, trying to look at things in different ways, so that I'm not getting depressed in reaction to events in my life.

It's called cognitive therapy.  It can be done in therapy with a group or with a therapist, but mostly, it's about learning personal skills in dealing with our reactions to events.

I'm not saying I don't get upset, I do.  But then I work at looking at things from another angle.

For example, the day before yesterday, I posted about my need to move home.  When I wrote that, I was in shock, and quite overwhelmed.  Yesterday, I didn't post on this blog at all. Not because I was in a fit of depression, but because I had to get groceries, and that left me too exhausted to do anything else.

But in that time, I also started to deal with my situation.  I started to list things I could do - make my appointment with the Housing Department, contact the institution I have my car loan with to see if they can reduce the payments and increase the time to pay, list things I can sell that will make me a little money and cut down on what I will have to move, start to give away some of the things I won't be able to take with me. I've given the first couple of bags of books from my theological library to another minister - who was delighted, and is looking forward to me culling more books. I've started talking with my daughter about what things she wants to take with her when she moves out.  And I've been thinking about the little flat I lived in many years ago, when I first moved out of home, and realising how much I miss the simplicity of living like that.

That initial starting to look at the situation from another angle can be a challenge.  But if it's not done as soon as possible after the shock, it gets much harder.  Depression is like being at the bottom of a well, it's so dark down there that you can't even see the daylight at the top. It takes a lot to claw your way out of that.

When I get a big shock, I'm effectively hanging off the side of the well. I can either do the work then to pull myself out, or I can let go and fall to the bottom of the well and have a much more difficult (and much longer) challenge to climb out.

So let's talk about cognitive therapy. It's a psychological approach that tells us that feelings don't exist on their own.  What we feel is a reaction to what we think.  Often, the way we think about things is faulty, this is called "cognitive distortion."

Here's a list of the basic cognitive distortions, taken from David Burns' book Feeling Good.

  2. Over generalisation: You see a single negative event as a never-ending pattern of defeat.
  3. Mental filter: You pick out a single negative detail and dwell on it exclusively so that your vision of all reality becomes darkened, like the drop of ink that discolours the entire beaker of water.
  5. Jumping to conclusions: You make negative interpretation even though there are no definite facts that convincingly support your conclusion.  
  7. The fortune teller error: You anticipate that things will turn out badly, and you feel convinced that your prediction is an already-established fact.
  9. Emotional reasoning: You assume that your negative emotions necessarily reflect the way things really are: "I feel it, therefore it must  if be true."
  10. Should statements: You try to motivate yourself with shoulds and shouldn'ts as if you had to be whipped and punished before you could be expected to do anything. "Musts" and "oughts" are also offenders. The emotional consequence is guilt. When you direct should statements towards others, you feel anger, frustration and resentment.
  11. Labelling and mislabelling: This is an extreme form of over generalisation. Instead of describing your error, you attach a negative label to yourself: "I'm a loser." When someone else's behaviour rubs you the wrong way, you attach a negative label to him: "He's a goddam louse." Mislabelling involves describing an event with language that is highly coloured and emotionally loaded.
  12. Personalisation: You see yourself as the cause of some negative external event which in fact you were not primarily responsible for.

The idea of cognitive therapy is to be on the lookout for these cognitive distortions, and to challenge them and address them with reality when they appear.

Apart from cognitive therapy, there is another tool I personally use to deal with distressing, potentially depressing, situations.  It's faith.  If you look at the psalms of lament in the Bible - those ones where people complained about how difficult their situation is, you notice that after they pour out all their troubles, they then describe how God has been faithful to them in the past, how God has got them through tough times.  Because God has been faithful in the past, they then decide to trust God for the future as well.

I have a number of wonderful memories of times when I thought there was no solution to a problem, and then God presented one from an unexpected source.  A special one for me was when I was in theological college. My then husband was full-time carer for our children, and money was very scarce.  I had just finished writing in my journal about how hard it was to trust in God's provision when the kids needed new shoes, and there was no money for them, when there was a knock at the door. It was the husband of my son's Sunday School teacher - their daughter had been throwing out shoes her children had outgrown and the Sunday School teacher realised they would be suitable for my kids.  The bag of shoes had so many in them, I had shoes for both my kids in the sizes they needed then and the next two sizes up for each of them, and the same for the two children next door to us.

Events like that one help remind me that a crisis is not necessarily a disaster, and that God will always help me deal with anything.

Reference: David D. Burns, MD Feeling Good, the New Mood Therapy

This post is part of Wego Health's National Health Blog Post Month.


While you're here, have a look at the Lupus Business Directory.  

Monday, 19 November 2012

Fast Food: Fast Minestrone

Fast Minestrone
There are times when I'm tempted to go out for "fast food", because I'm just too tired to cook.  In fact, "fast food" is usually slow - it takes time and energy to get there, wait in line, get home.  It's faster, cheaper, and healthier to throw together a quick meal at home.

Here's one of the fastest, easiest recipes ever.

Fast Minestrone

400g can diced tomatoes
125g can tomato paste
1 litre water
1 can four bean mix or five bean mix - drained and rinsed
1 tablespoon vegetable stock powder
2 cups mixed chopped vegetables (suitable vegetables include potato, carrot, celery, green beans, onion, capsicum, sweet potato, peas.) Frozen mixed diced vegetables are OK.
Half cup basmati rice

Put all ingredients into a saucepan and bring to the boil.  Reduce heat, cover and simmer 15 minutes.
Serves 4.

Recipe is gluten free, lactose free, vegan friendly, low GI, low fat, high fibre.

Business Of The Week

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

Beauti Control  Skin Care and Beauty Products. Theresa Brown Hoffman (Lupus.)

What Lupus Has Taken Away

Lupus has taken so much away from me.
Where I live now.
It seems like every day, there is something new to lose.  And I didn't have much to begin with.

I walked away from my marriage with nothing - less than nothing, because I took debts. My ex-husband kept a couple of store cards that were charged to me and continued to use them for a while. He got the joint bank account, and I got the kids.  There was no money for lawyers. I'm not bitter over that, just sad. 

Within a year, my lupus was diagnosed, and my capacity to earn an income has been reduced over and over again in the six years since then.

The latest time I've stopped work, my income reduced just as my rent increased.  A hard look at my finances says I can't afford to live here any more.  But it's more than financial.  I talked with my doctor about it last visit.  Three people from my church had just been around to clean the house for me in preparation for a real estate agent's house inspection. 

My GP said out loud what I have been struggling to come to terms with for myself for quite a while now: "Can you manage the house?"

The answer of course, is no.

Now that I can't afford a cleaner, the house is just not being cleaned.  What happens when I can't afford the lawnmower men will be another issue. 

I need to be somewhere much smaller, far less work to maintain, with no yard to look after. And I need things like to be on the ground floor, because I have some serious issues with stairs.

"You need to apply for public housing, get that started and I'll write a letter supporting it," she said.  

I have a tertiary education - post-graduate, in fact. And I can no longer afford a home for my family, and I can't manage to look after a home for my family. It's a sad life lesson - anyone can end up in poverty, and anyone can become homeless.

So I'm filling in application forms, and realising that to move somewhere smaller, I will have to get rid of a lot of my possessions - so it's time to sort through what I can give away and what I can sell.  And I have to do all of that with no energy, tons of pain, and the occasional bout of overwhelming brain fog. 

National Health Blog Post Month -  I'm using one of my two "get out of post free" days to write off topic.

Sunday, 18 November 2012

New In The Business Directory

The latest addition to the Lupus Business Directory is:

My Rays of Light Publishing

L.M. Young (lupus & sjogrens) helps people to write, edit, and publish books.

If You Love A Lupie

Tee shirt design available at Iris' Shirt Shop.
Today's National Health Blog Post Month prompt asks for my advice for someone caring for a patient with my condition.

It's a question that spouses or caregivers sometimes ask on the Sometimes, it is Lupus Facebook Page. I'm always glad to find someone asking, because it means they really do care enough to find out. And I'm guessing that the kind of people who ask already do a great job, because they actually do care.

So what would I tell a spouse or best friend or caregiver?

Probably the thing that will make life most difficult for both you and your lupie is that lupus is so changeable.  One day your lupie may be well and able to handle anything anyone else can, and the next day be too sore and tired to get out of bed.  It means being flexible.  You have make plans on a contingency basis - we will go to the movies, but if it's a sick day, we'll watch a DVD at home rugged up in a soft blanket. Sometimes your lupie will help out with the housework, or even do most of it, and some days you'll be left with the lot. You may get frustrated, but so does your lupie.

Brain fog is another big issue.  Your lupie may be an incredibly intelligent person, who may even have a post-graduate education, but on some days he or she won't remember to take pills, turn off the stove, or how to add up. It's frustrating for both of you, but it's temporary. Like everything else with lupus, brain fog flares and goes into remission. Try not to make a big deal of the problems created - your lupie's already frustrated with not being able to think clearly, if you stress as well it will only make things worse. Help them make sure there are reminders and alarms for everything important (like time to take pills, when to go to appointments, etc.) If your lupie has 50 alarms on the phone for different things he/she has to do for the day, at least there's a good chance those things will get done.

Pain and depression go together.  If your lupie's in pain she or he will probably also be feeling miserable. Try to be sympathetic.

A lot falls on you to be the support person.  Make sure you also have some support. Trusted friends or family members, a support network either on-line or in the real world will make a difference.  Make sure you get some rest as well. That's not always easy, but caring for yourself is important. Carers need care too.

If you're a spouse or partner, remember you're not just a carer, you're also in a relationship. You need to find ways of keeping your love growing. It's harder to go out, but lighting a candle and putting on soft music at dinner time is not much extra effort. Taking time to stop and talk and keep in close contact with each other's lives is important.

If you're a best friend, doing best friend stuff is important, having coffee together, chilling out, matters. Sometimes a phone call or a hug (usually very gentle, depending on what's sore) can make a world of difference to someone struggling with pain.

And encourage your lupie to do what he or she is able to do at any given time. (It will vary.) From a lupie's point of view, feeling that we have nothing of value to contribute to society or even those closest to us is very upsetting. When we're able, we really do want to do things that will be of value to others.


Saturday, 17 November 2012

Strengths and Weaknesses

Today's National Health Blog Post Month topic is my strengths and weaknesses.

Family, friends, readers, church members, and casual acquaintances would probably all see different things in me than I will in myself. But anyway, here's the list from my perspective.


  • Creativity - (check out the books I've written at the publisher's site, or at Amazon, or the tee shirts I've designed.)
  • Christian faith - the knowledge that whatever happens, God is at work in it somewhere.
  • Life experience -  I know how to survive on next-to-nothing, how to cut my own hair, how to find solutions to problems. Each challenge I've survived has left me better equipped to know what to do the next time.
  • Empathy - the reason I have put together the Lupus Business Directory, is because I feel for the many other people who struggle with chronic illnesses and want to do something concrete to help. The Lupus Book was also an attempt to help make life easier for people with lupus. 
  • Writing - I began as a journalist, went into ministry (which still involves lots of writing) and am now blogging.  I am good with words.  (When brain fog is bad and I can't fill in forms or add up, I am so grateful that so far, I've still been able to write coherently most of the time.)
  • My Kids - OK, they're now adults and I do very little to make them who they are - but they are the most amazing young adults and I am more proud of them than it is possible to say.
  • Sense of Purpose - I am happiest when I can see that I am doing something worthwhile, something to make a positive difference in someone else's life. It goes with my call to ministry, the knowledge that there is something God wants me to be doing. 
  • Sense of Fairness/Justice - when I know about something that's unfair, I try to find ways to help (and am willing to adjust my behaviour when necessary.)


  • Fatigue - I don't have the energy to do the things I'd like.
  • Brain Fog - I may be quite intelligent, but sometimes I just can't think.
  • Independence - I have serious trouble asking for help, or special consideration, and feel guilty when I do.
  • Not Planning - I used to be incredibly organised and plan everything.  Since I've been sick, planning has gone out the window, and when people ask me what they can do to help, half the time I have no idea, because I don't know what I'm trying to do.
  • Procrastination - it goes with fatigue.  There was a time I could procrastinate, leave everything to the last minute and still never miss a deadline. Now, I put things off, and they don't get done because the deadline is looming and I'm too sick, too sore, or too tired to do anything about it.
  • Depression - I do get clinical depression from time to time. It is incapacitating.

Well, those are the lists as I can think of them.  As I said, people who know me in different capacities would probably have lots of different things to add to either list; because who I ma from their perspective is not the same as who I am from my perspective.


Friday, 16 November 2012

Fighting The Wolf

Spoiler Alert: If you have not already seen the movie The Grey, and plan to, please don't read this post.

Today's National Health Blog Post Month  prompt is to use an image or video to inspire a post.

The Grey - Trailer

In the movie, The Grey Liam Neeson plays John Ottway, a security officer for an Alaskan oil crew.  His job is to kill the wolves that threaten the oil workers.  The crew have to evacuate because of bad weather, but their plane crashes, and they are stuck in the frozen wilderness. Ottway is the person most skilled in survival and takes charge of the group. Quickly the men discover they are being stalked by a pack of wolves.  One by one, the men are killed by the wolves, until only Ottway is left. In the final scene, Ottway is alone, armed with a knife and some small broken bottles, to fight the whole pack. He knows that he will die, but he fights anyway.

Shirt design from
How does this relate to lupus? I think it's a pretty good picture of lupus patients' lives.

"Lupus" is from the Latin for "wolf".  The name comes from the similarity in appearance between the rashes some lupus patients get and wolf bites. (I've never actually seen a wolf bite, so I can't tell you how similar they actually are.)

Living with lupus is rather like being stalked by a relentless predator. Even during times of remission, when lupus isn't active, it never actually goes away. There's no cure. Remission is a great relief, but lupus is never far away. It's always going to come back. When it's not actively attacking, it's stalking, looking for an opportunity, planning the next onslaught.

Our weapons to fight off this attacker aren't guns, knives, spears, fire, sticks, or whatever. Ours are drugs, some of which are in themselves incredibly dangerous; doctors; diet; exercise; rest; and planning our lives around being able to only do a limited range of activities.

Lupus patients are constantly on the alert for the wolf. We learn what makes it angry and try to avoid those things. We stay out of the sun, we avoid pushing ourselves to do to much. We avoid foods that upset our stomachs.

We learn the warning signs that a flare is coming: is the wolf quiet? Is he howling, or growling? Are the usual aches and pains suddenly worse? Are we needing to sleep far more just to cope with the little bit of the day we're awake for? Is the dull headache suddenly worse.

We learn strategies to cope, survive. We endure things healthy people would be very distressed by - pain, fatigue, headaches, brain fog, endless blood tests.

And regularly, far too regularly, we find that the wolf taken down another of our number. A post on social media, a conversation with another lupus patient, and we find out that the wolf has killed again.

Until a cure is found, we will all spend our lives running from the wolf, hiding from the wolf, in shock or grief over the wolf's kills, or actively fighting the wolf. Like the men in the movie, we have no other choice. Unlike them, our lives aren't fiction. There's no leaving the theatre at the end and coming back to a safe world.



While you're here, take a look at the Lupus Business Directory

One of the problems with lupus and other chronic illnesses is that it limits our ability to earn an income.

This directory is a listing of businesses (often selling items we make as part of our therapy) owned/run by people with chronic illnesses.

When you buy from a business listed in the directory, you make a huge difference for someone living with a chronic illness.

Thursday, 15 November 2012

The World According To Lupus

Today's National Health Blog Post Month topic is to nominate someone for the Wego Health Health Activist Awards.

Last year, I nominated heaps of people. This year, so far, I've nominated one.

I've nominated Atlanta from The World According To Lupus on Facebook, for the Best in Show - Facebook Award.

Atlanta has almost 7000 followers for her page, raising awareness about lupus, supporting people with lupus, generally brightening our day with humour and quotes, and supporting other people who are advocating about lupus on Facebook.

I have about 700 followers on the Sometimes, it is Lupus Facebook page (about 10% of the number Atlanta has on her page). Many of those I have because of Atlanta's recommendation. Her support for me and for many of the other people promoting lupus awareness on Facebook is just amazing.

You can find Atlanta at work in other places as well. The World According To Lupus is her blog, and she's just recently begun on Twitter @mylupieworld as well.


Seeking Justice
Someone suggested to me that one of my Medical Horror Stories last month might be the basis for a medical negligence claim. It's not. It was just some scary stuff that happened.

If you've got a condition like lupus (even though it wasn't diagnosed at that time) you're going to encounter some scary stuff from time to time. That's not anyone's fault, it's just how it is.

There are cases where it is legitimate, possibly even important to make a medical negligence claim. In fact, I know a couple of people who have made them. (I won't tell you their stories, because that's their personal stuff, not mine.) But in both cases, I believe they did the right thing in going for the claim.

So when is it time to call in the lawyers?  Well, like I said, not just because some bad stuff happened, and not just because you got scared. Bad stuff happens all the time, and people get scared all the time. The time to consider going to court is when: the bad stuff happened because of something someone did; and some actual harm resulted from the bad stuff.

As patients, we put a lot of trust in our doctors. Usually, that trust is very well-founded. Most doctors work very hard to keep their skills up-to-date, and to take into consideration all of the risk factors in any treatment they recommend. Nowadays, doctors will often actually discuss the risks of any treatment with the patient, so the patient can make an informed decision about their own body.

But, in all professions, sometimes someone does something really inappropriate, really stupid, or just really incompetent and people suffer as a result.

So, for example, the junior doctor who attempts something beyond his/her level of competence instead of calling in someone more senior, is doing the wrong thing.  The doctor who prescribes medication that is contra-indicated for a particular patient, is doing the wrong thing. The pharmaceutical company which releases a drug and doesn't warn of serious side-effects is doing the wrong thing. The pharmacist who dispenses the wrong drug is doing the wrong thing. Any of these cases is cause for a complaint to the hospital or relevant authority.

When it goes further than doing the wrong thing, when doing the wrong thing leads to negative consequences for the patient, that, in my opinion, is when it's appropriate for legal action. Compensation claims are about trying to get justice for a wrong. So the person who, because of someone else's action, is unable to earn an income should be compensated for the income they would otherwise have been able to earn.  The person who, because of someone else's action, needs further medical treatment to undo damage, should be compensated for the cost of that treatment and the time it takes out of his/her normal life to recover. Anyone who has been harmed by another's actions deserves some kind of justice.

Compensation, in the legal system, usually means a financial payment. Money doesn't replace what is lost when you are physically or psychologically or socially harmed, but it can go some way towards remedying the situation in some cases. In our society, money is the way most serious exchanges are made, so that is how compensation is paid.

At some level, I think many of us would like to see the person responsible have to personally fix the problem - if someone's direct action means you can't do your housework, they should have to come and do your cleaning for you, personally. In the real world, it doesn't happen like that, but it really ought to. In the real world, medical compensation payments are made by insurance companies, who charge doctors, who charge patients. (So we're really paying for it ourselves.)

That, in itself, has some problems. When I needed a hysterectomy, it was hard to find a surgeon to do the procedure - because the insurance cost was so high that many of the gynaecologists in Brisbane, who were competent to do the surgery, simply wouldn't do it.

On the other hand, when something really bad happens, I don't think any patients will begrudge the extra cost and inconvenience for the sake of helping to make things right, or as close to right as they can be, for someone who's been a victim of medical malpractice or negligence.

This post was sponsored by Alexander Harris Injury and Accident Solicitors.

Wednesday, 14 November 2012

Critics And Trolls

Today's National Health Blog Post Month prompt is: Advice for dealing with negative feedback in your community.

The kinds of criticism I've found tend to be along the lines of "You're complaining about nothing, there's people with really bad things out there like cancer."

How to deal with them?

For me, there's two options.

The first is to use it as an opportunity for awareness-raising.  Actually take on the issue, publicly.  The person who made the negative comment may not be particularly interested in learning that they are wrong, but other people may actually become more aware of the reality. And for people who have lupus, these kinds of criticisms are so common that the response allows an opportunity talk about how they feel about having their suffering discounted so much.

Here's two posts I've done specifically in response to criticisms: Just Seeking Attention and "At Least You Don't Have Cancer". I did the posts, not so much to engage the particular people who had made the criticisms, but to explore the attitude many people who don't know the reality of lupus have towards lupus patients.

The second option, is the one I actually use most often. On-line trolls are like school yard bullies. Bullies get what they're looking for if they upset us or make us angry.  Usually, I simply block them, or don't publish their comments on the blog. (That's why all comments you post go to me to be moderated before publication - so that I can weed out the trolls. When I did allow a critical comment through, I found from the responses it received that it was readers with lupus, rather than me, who were most hurt by the criticism.) Letting them through occasionally allows readers the chance to vent about all the times they've had that kind of inconsiderate thing said to them, but letting it through too often would be too hurtful.

This post written as part of Wego Health's National Health Blog Post Month challenge.


Are you aware of any links that should go on the Lupus Links page or businesses which ought to be listed in the Lupus Business Directory? If so, please email me the details. I don't charge for listing in either.  My hope is that both will grow into useful resources.

Tuesday, 13 November 2012

Book Report
Today's National Health Blog Post Month topic is to do a report on a book and tie it to my health or life.

If I were relating living with lupus to a book, it would have to be something surreal with a non-linear narrative, like Lewis Carrol's Alice's Adventures in Wonderland or Douglas Adams' The Hitchhiker's Guide to the Galaxy.

Lupus is like a world where the normal rules don't apply. There's always some unexpected surprise, something that makes no sense at all.

There's the day that begins like a normal day, and then brain fog means that everything goes wrong.  I can make my lunch happily and go on with my day, and not know until I come to make dinner that the stove has been on all afternoon, and there's a frypan with my lunch (that I must have forgotten to eat) burned on to it.

And another thing in common with Alice is the bottles with "eat me" on them.  Well, maybe not quite.  But I am constantly taking drugs that have been prescribed for me, and I don't always know what interesting side effects I may discover.

Of course, Alice woke up, and everything was the same as it had always been.  Unless there's a cure for lupus found, this strange dream/nightmare will go on and on for the rest of my life.



While you're here, remember to check out the businesses in the Lupus Business Directory.  There's all sorts of exciting gift ideas there for your Christmas shopping.

Monday, 12 November 2012

Lupus Business Directory: Business Of The Week

Adorable Bat Foetus Teeshirt




Check this out.

So It's Lupus, Now What?

The National Health Blog Post Month topic I'm using today is:  advice for a newly-diagnosed patient.

So here's some of the things I wish someone had told me when I was first diagnosed:

  • In the words of the Hitchhiker's Guide to the Galaxy: Don't Panic. Yes, it it all seems scary, but there are ways to handle just about anything.
  • Lupus can go in any number of directions - you can't predict what yours will do, so don't worry about the future, focus on what you can do now to care for yourself.
  • Anything you can do for your overall health is a good idea - eat healthy food, get some exercise (gentle, don't push beyond your limits); get plenty of rest; keep track of your medication and take it at the right time.
  • Learn to pace yourself.  When you were well you might have been able to just push yourself to do those one or two extra things when you were tired.  Now your energy is a limited commodity, and you need to budget carefully. 
  • Learn the difference between reliable information, and the disinformation that you will find available. As a general rule, any internet site with .gov in the address, or sites from recognised lupus organisations, will be reliable. Blogs (like this one) are about support and general awareness, and can help you feel less alone and less like you're the only one who has ever been through this, but don't use them as a basis for your medical decisions. Any site that recommends you disregard your doctor's advice, or suggests some strange alternative treatment, should be treated with suspicion.
  • Remember that lupus is a disease that behaves in a huge variety of different ways. What happens to someone else will not necessarily happen to you. For some people, lupus is a mild inconvenience, and for others it is a struggle to survive. Instead of anticipating the worst, just make the best of the life you have today.
  • If you need a nap, have a nap.
  • If you have to stop work, or reduce your working hours, that does not make you "weak" or a "failure". 
  • If you have to ask for help, you're still not a failure.
  • Some people will make judgements based on your appearance. You don't look sick so you mustn't be sick.  You can try to educate them, but don't try to do more than your limits to please or appease them.
  • You will have good days and bad days. Make the most of the good ones. 
  • Just as your body gets tired, your mind does too. Write things down.  Especially if you have new symptoms/questions for your doctor (it's easy to forget when you get into the doctor's office.) 
  • You are not alone. There are about 17000 people in Australia with lupus. World-wide there are about 5 million of us. There are communities where people meet face-to-face and communities where people meet on-line. If you can't find an active group in your community, join an on-line one.  (On the Lupus Links page, you'll find a number of lupus support pages on social media.)
  • Your life has not ended. It might have changed a bit, but it is not over. 



My newest book is Beside Still Waters. It's a book of some of my sermons and reflections on Christian Scripture. (When I'm not blogging about lupus, I'm a Christian minister. I have a theology degree and everything.)

It (and all my other books) is available from the publisher, Lulu. It's also available in Kindle Edition from Amazon.

Looking for any other items produced by people with lupus or other chronic illnesses?  Take a look at the Lupus Business Directory. You will find some great Christmas gift ideas there.


If you want to tell me about links that should go in the Lupus Links page, or if you have a business you'd like added to the Lupus Business Directory, please email me the details.