Wednesday, 26 April 2017

Flu Season's Coming

Yesterday was ANZAC Day, which means a few things. (No, I'm not talking about the ANZACs or the families who would have preferred their sons and husbands to be coming home, rather than becoming legends.)

It means we're about midway through autumn, so the weather is about to get colder.

It also means it's time to get a flu shot.

The flu shot won't give you protection against every sniff and sniffle going around, but it will give you some resistance to the most kill-ey versions of the flu that are expected to come around this flu season.

For lupus patients (and patients with other immune-compromising diseases) can go to our doctors to get the flu vaccine for free, under the National Immunisation Program.

It's worth asking family to consider getting a flu shot as well.  Them being protected also helps us to be protected.  For family members who aren't covered by the Program, it's possible to get a flu shot fairly inexpensively from a pharmacy or a doctor's surgery.

Want to be part of the World Lupus Day activity on Sometimes, it is Lupus? Email your first name, your country and the advice you would give someone newly diagnosed with lupus.

I'll put all of the advice together in a resource to be published on this blog on World Lupus Day, 10 May 2017.

Would you give $1 a month to support this blog?  You can become a patron for as little as $1 a month (up to any amount you choose.)  As a thank-you gift, I'll send you a free electronic copy of each new book I release.

Saturday, 22 April 2017

When Lupus is Unbearable

Trigger warning: discussion of suicide.

Lupus is a horrible disease, which makes life thoroughly miserable at times.

So when I found out that a lovely lupie I've had a fair bit of online contact with  chose to end her life recently, I fully understood that choice. Lupus caused her death, even though that's not what will be listed on the death certificate.

There have been times I have considered a half-formed plan in case lupus became unbearable. I've talked to other people with chronic illnesses who have had similar ideas. Strangely, having the reassurance that there's a way to stop things being unbearable, makes things easier to bear.

Lupus takes so much away from us: health, the ability to work, the ability to rely on our own bodies and minds, and replaces those things with fatigue, physical pain, and a sense of guilt about all the things we can't do.  That's aside from the risk of organ failure, the constant blood tests, visits to multiple types of doctor, a whole life that at times seems to be built around a disease.

When lupus is really bad, and organs do fail, and pain is worse than usual, just opting out of everything can seem to be a solution.

The discussion of voluntary euthanasia has been going on in Australia for years. Years ago, I was totally against it.  Now, after a few years of living with lupus, I get it.  Now, I think with some proper safeguards, it could be a good option. There would need to be a way to ensure that people weren't pressured by others into making the choice, and to ensure that it wasn't a result of depression.  (Depression is bad, I know from experience, and when you're at the bottom of the pit, it can seem like the pit is all that there is; but with support, medication, counselling and plain old determination, people can and do climb out of the pit and back into the light.)

What keeps us from all taking the option of ending our lupus and everything else? There's a few things:

  • Hope.  One day some scientist is going to work out that this tiny change to that tiny gene or whatever is the solution. Lupus is going to be cured and we're all going to go back to normal lives. We want to be around to see that happen.
  • Love.  Each of us, no matter what lupus has done to us, have people we love and who love us.  Those people would be devastated if we died. When we have a choice, we live for them.
  • Faith. Viktor Frankl observed as an inmate of Auschwitz, that those who found meaning despite their suffering coped far better than those who did not find meaning. Whatever or whoever we have faith in, wherever we find our meaning, helps us get through things that would otherwise be unbearable.
  • Future. Sure, things could get worse.  But they could also get better.  I can hold out a bit longer and find out which.
  • Present.  Is this a "right now" thing, that will improve tomorrow or next week?
  • Past.  I've been through bad things before.  If I could get through those, I can get through this bad thing that's happening now.
  • Community. None of us is alone in this.  We belong to a community of people with lupus. Whatever we are going through, there's someone else who has been there and done that.  
  • Stubbornness.  The simple determination to not let this dumb disease win.
  • Support. Sometimes talking things out with someone, or having a friend or family member come in and catch up the washing we've been too sick to do, is all it takes to make the situation bearable after all.
Suicide is an understandable, and even in some cases reasonable, response to an incurable illness, but if you're considering it, I'd ask you not to take the decision lightly.  First step back, and look at the whole picture of your life and the network of the people your life impacts on.  Talk about it, with fellow lupies, with your doctor, with your family, with a counsellor. Don't make this decision hastily, or alone, or in the pit of depression.

If this post has raised issues for you, and you need to talk about it, you can call Lifeline on 131114 from anywhere in Australia.

Would you give $1 a month to support this blog?  You can become a patron for as little as $1 a month (up to any amount you choose.)  As a thank-you gift, I'll send you a free electronic copy of each new book I release.

Friday, 21 April 2017

World Lupus Day Event - Please Be a Part of It

World Lupus Day is coming up.

Here's what I'd like to do as our WLD event on

I'd like all you lovely lupies to send me your best advice to someone newly diagnosed with lupus.  So email me with your first name, the country you are from, and the thing you would most want to tell someone who's just been diagnosed.  (Oh, and write in the email that you give me permission to publish that information.)

Think of the things you wish someone had told you when you were diagnosed.  Let's see if we can put those things in a resource that will help someone else.

Please try to get your email to me by 9 May (Australian time - so that would be 8 May US time) so that I can have it collated and ready to go on World Lupus Day - 10 May.

(Oh, and it's yet to be confirmed, but I may have something nice to give to the person who gives the piece of advice I like the best.)

The novel I'm writing at the moment has everything: zombies, romance, a mad scientist and a sinister mystery.  Patrons of my writing will get an electronic version of the book, before it is released to market. You can become a patron of my writing; my books and blogs, for as little as $1 a month.  Just follow the link below.

Thursday, 20 April 2017

Out Of Order

I've been utterly useless for almost any purpose for at least a week now.

I've been sleeping at least 18 hours a day, and been exhausted for the time I've been awake.

I've missed things I wanted to do - I didn't get to church for Good Friday, or Easter Sunday.  Last night I was woken by a phone call - because I just hadn't turned up at a trivia night I had been going to with friends from my Toastmasters' Club.  (I completely forgot - and couldn't gather the energy to go if I'd remembered.)

I've moved from the bed to the couch and back, and done very little else.

Right now, I think it's time to stick an "Out of Order" sign on my head until further notice.

My brain's not functioning.  I've sent text messages to the wrong person, and been totally confused about basic things.

I regularly warn people how unreliable I am.  However, when they know functioning Iris, they don't really understand just how bad zombie lupie Iris can be, not until they meet me in this state.
My dog understands.

My dog, however, always understands. Whether I'm functioning properly or not, she's always happy to just be with me whether I'm doing things or just lying around.

Hopefully, in a few days, I'll start to get some energy back, because there's lots of things I'd rather do than just sleep all day.

Until then, I'm putting the tv on and lying on the couch.

Have you ever envisioned yourself as a patron of the arts, but don't have the money of a Medici? Patreon is the 21st century way of sponsoring artists of all types. You can be a patron of my writing for as little as $1 a month.  Patrons will receive electronic copies of each new book I write. 

Tuesday, 18 April 2017

Give Aways - Lupus Care Packs

The contents of the lupus care packs.
A couple of weeks ago, I told you about lovely Corry Ang who brought lovely Lupus Care Packs to Lupus 2017.

It was an absolutely lovely gift for all of us.

I've received a message from Corry, who tells me you could have one if you like, too.

She has about fifty packs left over.

If you would like one, email your address to: or visit the her website for more information:

(Remember, Corry is in Australia.  I don't know if she is able to send overseas.)

Of course, if you know a lupie who really needs a lift, you could email their address to Corry as well.

Corry has put a lot work, time, money, and organisation into these beautiful packs, to show some love and support to the lupus community.

Have you ever envisioned yourself as a patron of the arts, but don't have the money of a Medici? Patreon is the 21st century way of sponsoring artists of all types. You can be a patron of my writing for as little as $1 a month.  Patrons will receive electronic copies of each new book I write. 

Thursday, 13 April 2017

Dry Mouth is Not Just An Inconvenience

How's your mouth? Any ulcers, teeth hurting, dry feeling, always thirsty, just plain uncomfortable?

Dry mouth is annoying, and distracting, making it hard to concentrate on pretty much anything else, but it can cause serious issues too.

If you like having teeth, don't want infections,  of just don't like pain, you really need to do something about it. I treated it as just a nuisance, until I read a post about it by Dr Donald Thomas (the Rheumatologist who wrote The Lupus Encyclopaedia.) He made it more than clear that dry mouth is something we really need to treat seriously.

Now, I'm getting serious.  I talked to my dentist, and have gone from annual to twice-yearly dental check-ups.  I use a dry mouth toothpaste and mouthwash.  I also carry a dry mouth spray in my handbag, and keep a tube of dry mouth gel by my bed.  (The gel is squeezed on the tongue, and the tongue used to coat the mouth with goo.)

Specialist dry mouth toothpastes and mouthwashes are more expensive than the standard ones, of course. But on the other hand, I haven't had mouth ulcers since I started using them. I'm still bothered by the dry feeling in my mouth, but the pain isn't such a nuisance.

I tried using sugar-free gum for a while.  That does help with dry mouth, but there's a limit to how much I can use.  Sugar-free gum is sweetened with a product that acts as a laxative, and I already have gut issues.  So it's good, but needs to be used sparingly.

Have you ever envisioned yourself as a patron of the arts, but don't have the money of a Medici? I'm told Patreon is the 21st century way of sponsoring artists of all types. You can be a patron of my writing for as little as $1 a month.  Patrons will receive electronic copies of each new book I write. 

Wednesday, 12 April 2017

Good News/Bad News

Last week I posted about the weight and health check station at the pharmacy, and how, after the initial weight loss when I stopped taking steroids, it's going to start being work to get my weight under control.

I did another check in today, and it was one of those good news/bad news stories.  The good news is I lost about 5kg last week. The bad news is my overall health score dropped from 3.6 to 2.5.

That happened because my blood pressure and pulse rate had gone up. I can explain that.  Last week I was using my scooter at the shopping centre.  This week, I tried walking.  That's what increased my blood pressure and pulse rate: exercise. With the pain and exhaustion that followed from being on my feet for about two hours doing the weekly shopping and odd jobs, I think next week I'll go back to the scooter. So next week my blood pressure and heart rate will be my resting rate again.

I will keep my exercise to the Lupus Exercise workout a couple of times a week, and a bit of pottering in my garden.

Really, the balancing act between doing enough to care for my health, and over-doing things and making myself sick, is a challenge I struggle with every day. I know other lupies struggle with this too.  It's a tightrope we all have to walk, and the consequences of doing too much or too little can be greater for us than they are for healthy people.

Would you give $1 a month to support this blog?  You can become a patron for as little as $1 a month (up to any amount you choose.)  As a thank-you gift, I'll send you a free electronic copy of each new book I release.

Tuesday, 11 April 2017


You've probably noticed the Patreon link appearing on the end of each post.  If you haven't
encountered it before, Patreon is a system for people to support writers and other artists.  It's kind of like a continuing kickstarter or gofundme.

Patrons pay creators of blogs, art, music, etc, a set amount per post or per month.

So why would you become a patron of my writing? Here's a few reasons:
  • You love to read one or more of my blogs, and you think $1 or even more per month is good value for the information or entertainment you get out of them.
  • You want the rewards: for $1 per month, you will receive a copy of the electronic version of each new novel I write.  
  • More rewards: for $10 per month, you can be a Beta reader - you can read early drafts, and have the opportunity to give feedback and comments, as well as the $1 reward.  
  • Even more rewards: For $100 per month, you get to be a Gold Star Patron, and will be acknowledged on my blogs, and in future novels (as well as the $1 and $10 rewards).
  • You just think it would be cool to be able to call yourself a patron of the arts.
  • You can spare $1 or so a month, and think my writing is as good as anything to spend it on.
  • You adore the animals, and would like to help fund their adventures.
  • You have lupus and helps you feel less isolated.
  • You enjoy short fiction, and like to read
  • You find is of value to you.
  • You really want to be the first to read my next novel.

For whatever reason.  If you want to sign up as a patron of my work, you can do so here:

Don't Say It!

There are some things you should just never say to someone with lupus.

  1. Everyone gets tired. Lupus fatigue is far more than just being tired. Imagine having heavy weights hanging off your legs, feet, hands, arms and head - all day every day.  That's what dragging our bodies through life feels like.
  2. At least it's not cancer. I have a horrible illness that may kill me, and means I will take toxic drugs (some of which are the same ones given to cancer patients) probably for the rest of my life, can attack any organ without warning, and makes me sick each and every day.  No, it's not cancer.  People with cancer have a rotten time, but so do people with chronic illnesses.  
  3. You should put more effort in. Some days, just getting out of bed takes all the strength I can manage. I do my best, and I already feel guilty for all the things I can't do.  I don't need your judgement as well.
  4. You need to take something to boost your immune system.  My immune system is what's killing me. It doesn't need any help.
  5. I know someone who can cure it. No, you don't. You know someone who wants to sell me snake oil - who wants to take advantage of me, because they think I might be desperate enough to be vulnerable.
  6. A friend of mine had that but they were cured. So far there is no cure. Your friend is either in remission, or was misdiagnosed.
  7. Why don't you try... My life is in danger here.  I don't have to justify to you why I choose to do as my doctors say.
  8. You need to get out in the sun more. Sunlight makes lupus worse.  Think of me as the vampire you know.  I'll stay out of the ultraviolet light as much as possible, thanks.
  9. All those drugs you take are dangerous. I know. They're horrible. The only thing worse than taking them, is not taking them.
  10. You should get more exercise. I have a limited amount of energy for the day, once I've used it it's gone.  I will use my precious little bit of energy on whatever seems most important to me.
  11. You don't look disabled, you don't need a disabled parking space. You don't look like an idiot either. I guess there's some things you just can't see.
  12. You don't look sick. I'm so awesome, I can look well, while my whole body is falling apart.  That's my superpower. What's yours?

Monday, 10 April 2017

Lupus Fatigue

You know what it's like, a healthy person complains of being tired, and you wish that "tired" could be a temporary thing for you, the way it is for them.

Chronic illness fatigue just isn't like any other kind of being tired.

It's more like Sisyphus would feel after an eternity of pushing a boulder up a mountain.  (Of course, according to the myth, he earned his punishment.  We didn't do anything to deserve this.)

We wake up tired and go to bed exhausted, and in between we fumble through life as best we can.

Sometimes, we manage to fight the fatigue and get things done.  But that usually catches up with us in the end.

Have you ever envisioned yourself as a patron of the arts, but don't have the money of a Medici? I'm told Patreon is the 21st century way of sponsoring artists of all types. You can be a patron of my writing for as little as $1 a month.  (Only if you can afford $1 a month.)  Patrons will receive electronic copies of each new book I write. 

Friday, 7 April 2017

It's Going to Take Some Work

Health Check Station at my local
For the last few months, I've had a problem with my bathroom scale.  I will gain and lose more than six or seven kilograms per day.  Clearly my scale was faulty.

Rather than go to the expense of buying another one, I thought I'd check in at the free health check station at my local pharmacy.

It checks weight, BMI, body fat percentage, blood pressure, pulse, all kinds of things, and emails the results.

My results were very sad.  My weight came up worse than the scale at home said at any time. My overall health score was 3.6 out of ten or bottom six per cent of the population.

Now, don't get me wrong,  I wasn't under any delusion I was healthy, but I hoped that despite lupus, I wasn't that bad.

I guess I have a lot of work ahead of me.

Key to that will be slowly building up to daily exercise, and using my Calorie King app to get back in control of my eating.

When my steroids were reduced, I dropped a dress size, without trying, which was great. It's becoming clear, however, that to get any further will take some actual work.

Would you give $1 a month to support this blog?  You can become a patron for as little as $1 a month (up to any amount you choose.)  As a thank-you gift, I'll send you a free electronic copy of each new book I release.

Thursday, 6 April 2017

Plans for World Lupus Day

Lupus support group leaders from around the world
met in Melbourne the day before Lupus 2017 Patient
Information Day.
One of the things we talked about in Melbourne, when representatives of lupus support groups from around the world met, was the plans the World Lupus Federation has for World Lupus Day.

World Lupus Day on 10 May this year, will have the theme "Lupus Knows No Boundaries."

I'm sure we can relate to that - it doesn't follow the boundaries of geography or race. There's no boundaries on the "surprises" we can get from it either.

But you know what, lovely lupies? There's no limits or boundaries on the number of times we can get up and fight on when this stupid disease knocks us down, either.

Look out for a global study on the impact of lupus that's coming up. The report will be posted on the World Lupus Day Website.

And keep an eye on Twitter.  If you don't already follow @TiffanyAndLupus  and #LupusChat yet, now is the time to do so.  Tiffany and the team are hosting a discussion every Sunday in May, at 3pm American Eastern Standard time. (I think that's GMT -5.) This year will be the fifth anniversary for #LupusChat - so wish Tiffany and the team a happy birthday when you join them.

That's the big, world-wide stuff.

If your local organisation has something planned you'd like to tell the world about, please let me know.  In the lead-up to World Lupus Day, I'll publish whatever events I hear about.

I don't yet know what we're doing here on Sometimes, it is Lupus.  I'm open to suggestions.  Last year, we had our own survey, before that we established the Warriors Wall, and before that the Lupus Business Directory.  If any lovely lupies out there have any ideas, on what to do next, you know what to do: comment on the blog here, or on social media.  Oh, and now that I'm on Patreon, I've decided that if I can get $500 per month from patrons, I'm going to sponsor the local World Lupus Day lunch.  Otherwise, I'll just organise one and everyone can pay their own way, as usual.

Would you give $1 a month to support this blog?  You can become a patron for as little as $1 a month (up to any amount you choose.)  As a thank-you gift, I'll send you a free electronic copy of each new book I release.

Wednesday, 5 April 2017

Real Food

I'm always going to have the times I don't have the energy to
make "real food", so I have to get back in the habit of
preparing multiple meals at once.
Yesterday, we ducked out for a couple of things, and My son suggested we stop for fast food on the way home.

I thought about the options available, and realised something.  For days I'd just been grabbing whatever was quick and easy to eat, not worrying about what it was, and I felt awful for it.

My son, it must be said, could live for ever on two food groups, chips and tomato sauce.  I can only handle junk for so long before my body rebels.  "I just want to eat real food," I said.

I bought sliced meat and a bag of mixed salad vegetables - still pretty fast food, but something much better for me.

So, I've decided to get back into the habit of preparing extra serves whenever I make a meal. I need to make sure that what is quick and easy is actually food, not just junk.

I'm feeling a bit better today, although still a little "off".  I hope I've learned my lesson this time.  (But if you've been reading this blog a while, you know I keep re-learning it over again.)

So lovely lupies, give me some ideas: nutritious meals that don't take any effort to prepare; and nutritious meals that I can make up multiple serves of that will keep a couple of days in the fridge.  You know the deal: give me your comments on this post or on any of the social media choices.

PS, yes, I still do have things to tell you about that I found out on the Melbourne trip. Tomorrow, I'll get back to it and tell you about what's happening for World Lupus Day.

The novel I'm writing at the moment has everything: zombies, romance, a mad scientist and a sinister mystery.  Patrons of my writing will get an electronic version of the book, before it is released to market. You can become a patron of my writing; my books and blogs, for as little as $1 a month.  Just follow the link below.

Tuesday, 4 April 2017

Want to be paid for talking about your experience of lupus?

Hey lovely lupies,

Would you like to make some money for talking about lupus?

I've just received the following email from Bright Bod:


We at are building our Patient Question and Answer Library. We have already interviewed a number of people with Fibromyalgia and many forms of Cancer and are now trying to build our Lupus community.

If you have Lupus (or a form of Cancer) and would like to earn $60 by participating in a Question and Answer session (without leaving your home, which can be conducted on computer or smart phone), please reply. The Q & A session should be about 15 to 20 minutes. We pay with PayPal, Venmo or check; the method of payment is up to you.

If you know someone who might be interested, please forward this email to them. Thank you.

Kind regards,

If you are interested in taking part, you can email Joe at Bright Bod on:

Would you give $1 a month to support this blog?  You can become a patron for as little as $1 a month (up to any amount you choose.)  As a thank-you gift, I'll send you a free electronic copy of each new book I release.

Maybe I Should Ease Into This

Have you tried the Lupus Exercise program from Syasmi Dhuha I told you about the other day?

I did it two days in a row.

The first day I felt really good.  The exercises did seem to help with my pain, and I had more energy for the rest of the day.  I got so much done that day, without too much pain, and with lots of energy.

The second day, I felt quite good.  I was a little better at the exercises, and paid more attention, realising that I was working even those bothersome small joints - fingers, wrists, ankles.  I got a fair bit done that day.

Today I crawled out of bed and realised something: it might be better if I ease into anything new, even something that is lupus-specific.  I'm taking a break today and tomorrow.

Then I'm going to start again.  Initially, I'll do the exercises every third day.  When I can handle that consistently, I'll bring it down to alternate days.  The aim is still to get to the point of exercising every day, but I'm going to get there slowly, over time. Oh, and I still have to remember to not overdo things on the days I feel good.

This really is a great exercise routine.  As I said earlier, it was designed by doctors specifically for people with lupus.  It's a low-impact exercise routine that gently works all of the joints and muscles.  It's really, really, good.  And, eventually, I'll get to do it every day.  Maybe you'll join me.

Have you ever envisioned yourself as a patron of the arts, but don't have the money of a Medici? I'm told Patreon is the 21st century way of sponsoring artists of all types. You can be a patron of my writing for as little as $1 a month.  (Only if you can afford $1 a month.)  Patrons will receive electronic copies of each new book I write. 

Monday, 3 April 2017

One-stop Lupus Information Source

The Lupus Foundation of America
has launched a new Resource Centre
for information on lupus.
What would you do if you'd run a magazine specialising in lupus for a number of years, and gathered tons of information that could be useful to people all over the world?

Well what the Lupus Foundation of America did, was create a massive collection in one space of articles relating to all kinds of things related to lupus.

The Resource Centre on Lupus has a menu to give you a number of overall categories to choose from.  Once you select that, you can will be taken to a list of what's available in that area. You can sort by a more specific topic, or by a type of resource.  Or you can just look all through the list to find something that might be what you're looking for.

The Resource Centre has about 600 medically-reviewed articles on lupus to help keep you informed of just about anything you might want to know.

Patrons of my writing receive a free electronic copy of each new book I release. You can become a patron for as little as $1 a month (up to any amount you choose.)

Sunday, 2 April 2017

More Resources Going on the Links Page

Interstate encounter:
Iris Carden (left) from Lupus Association Queensland,
Mary Erceg (centre) from Luupus Western Australia,
Barbara Ward (right) from Lupus New South Wales.
There's still so much to tell you about Lupus 2017.  My big project today is to go through my
notebook, and the mountain of business cards and other items I've collected, and update the  links page,
with links to all the amazing groups I've encountered.

By tomorrow, it should be up-to-date, and hopefully you will be able to go there and find all kinds of resources and support systems near you.

Oh and if you really, really wanted to go to the Lupus 2017 Patient Information Day, and couldn't get there, I have some good news for you.

All of the sessions were recorded, and sometime in the relatively near future, they should appear on the World Lupus Federation website.  I'll keep an eye on it an let you know when the videos are up.

Patrons of my writing receive a free electronic copy of each new book I release.
You can become a patron for as little as $1 a month (up to any amount you choose.)

Saturday, 1 April 2017

Lupus Care Packs

Corry Ang (right) and Iris Carden,.
There were so many amazing people at Lupus 2017 Patient Information Day,  I'd like you to "meet" lovely lupie
Corry Ang who arrived with gifts for everyone.

Corry has put together Lupus Care Packs, which contain some of the things she has found most useful.

They include a heat pack, peppermint tea, epsom salts for soaking sore joints, and a stimulating shower gel.

She's been organised, raised funds and negotiated discounted prices on the products, to be able to give them away.

If you want to know more, check out her website Lupus Care Community.

Lupus affects us all differently, but we're all in it together.  It's wonderful that there are so many people like Corry who are inspired to reach out and care for others who are finding our own ways to live with the wolf.

You can become a patron of this blog, and all my writing at (All patrons will receive a free electronic copy of the novel I'm currently writing.)

The Autoimmune Research and Resource Centre

Autoimmune Research and Resource Centre brochures.
The Autoimmune Resource and Research Centre does the most adorable brochures about autoimmune diseases.

They're meant to appeal to children, but I have to admit as a 50 year old, I love them.

The lupus one features an emu with a malar rash.  No-one is emu-ne to lupus, after all.

These adorable brochures are available to download from their website, so you can use them if you're raising awareness of lupus or other autoimmune diseases in your area.

They have some other great resources available as well.

You might be interested in their information DVDs, or getting together with them in one of their cafe conversations in NSW, ACT and now QLD as well. If you have Raynaud's you might be interested in the gloves and socks they sell.  The research they undertake, and sponsor, also provides some interesting reading.

For people have lupus, or any other autoimmune disease, it's a great idea to explore their site, and see what other treasures you can find.  Oh, and you can become a member for free.

Sadly, although I heard at Lupus 2017 Patient Information day that the Emu from the lupus brochure is available for sale as a soft toy - I couldn't find a way to order her from the website.  I've now made it my life's goal to acquire that adorable emu.

To become a patron of this blog, and the rest of my writing, go to

Friday, 31 March 2017

From Indonesia with Love: Lupus Exercise, Book, and App

Syamsi Dhuha (it means Morning Light) in Indonesia has won international awards for its work to make life better for people with lupus.

Here's some of the things they've done that we heard about at Lupus 2017.

There's a book, available in multiple languages, to explain lupus to children:

There's an app, again available in multiple languages, to track medications, test results, pills, and all of the other information we carry from doctor to doctor, and the reminders for when we have to take pills, go to a doctor's appointment, go for a test, etc.

And there's an exercise video, produced in conjunction with two doctors who specialise in sports medicine.

To find out more about this fantastic group, and the wonderful resources they have produced, go to their website:

I'm home

Here's the photo I wasn't able to put on the
United Nations of Lupus post while I was away.
This was the meeting of representatives of
lupus groups from around the world, the day before
the Patient Information Day at Lupus 2017.
I'm home.  For a little while I wondered if I'd make it.

If you're in Australia, you've definitely heard of Tropical Cyclone Debbie. That didn't come anywhere near my area.

But what happens after a cyclone has crossed the coast and burned out most of its energy, is that it turns into a rain depression.

Lots of rain, with flash flooding, and often further flooding once the water all moves its way down the rivers, starts to move generally southward.

So after the eastern side of North Queensland suffered the effects of a severe cyclone (Debbie was Category 4, the second-highest category there is),  North Queensland, and very quickly Central Queensland received a great deal of rain.

By yesterday, when I was travelling home, the rain depression was reaching South East Queensland.

View from the train.  This is usually a tiny creek,
not a river.
So while I was waiting at the airport - my plane was delayed, the a flight to the Gold Coast (further south than Brisbane) was cancelled, the flight after mine to Brisbane was cancelled, and other travellers and I were starting to speculate on what we would do if ours was cancelled.

About that time I told my family members not to drive into Brisbane to get me, I would catch the train to Ipswich, rather than have them drive on potentially flooded roads.

Other friends offered me places to stay in Brisbane in case I couldn't get to Ipswich.

As it turned out, my flight did eventually take off.  We got into Brisbane just before the worst of the rain. By the time I got back to Ipswich the rain was coming down hard.  I was absolutely saturated walking from the train to the car. But I was still home before the worst of it.

Percy, recovering from his bath.
As it turns out, I wasn't the only one to get a bit wet.

My ragdoll cat, Percy, had an adventure of his own.

Percy has a routine.  He gets up in the morning, and goes to sleep out in the back yard in the sun, or in the gazebo if it's too hot in the sun.  Then he comes inside to eat, and moves to the couch to sleep, eats some more and goes to bed.

With the rain, going out to the back yard was a much messier affair than usual - so much so that when he came inside, my son found it necessary to give him a bath. (Percy does not like baths.)

So now I'm home, and just about recovered from the journey.  My brain and my notebook are both over-full with news from the conference.

I've got so much to tell you.  Over the next couple of days you're going to see a heap of posts about the conference, but you'll also notice the links to support and information on the Links page getting bigger, as I add in some of the amazing resources that I've found out about.


This is what the creek near my place looks like normally.

This is what it looks like now.

The water was just below the bridge when I got home last night.  (Crossing the bridge was a part of getting home.)

This sign that says "Use Other"  said "Use Other Footpath" before I got out my phone to take the photo.

Tuesday, 28 March 2017

The United Nations of Lupus

Just a quick check in because it's been a very long day.

This afternoon at Lupus 2017, I got to represent Lupus Association Queensland at a meeting of representative of lupus groups from around the world. We had people from Denmark (representing the peak body of European lupus groups), the Philippines, Indonesia, Trinidad and Tobago, Ghana, the USA, Canada, and of course here in Australia.

I have a photo to show you - but I'm having technical difficulties here in the hotel room.  I'll share it when I get back.

We heard about a goldmine of lupus resources, and some of the plans for World Lupus Day.  I'll update you on everything when I get back to Ipswich.

Tomorrow is the Patient Information Day, and you'll be hearing about that over the next days and weeks as well.

I hope all our lovely lupies in the north of Queensland are safe today.

Monday, 27 March 2017

I have to get up tomorrow
I have to get up early tomorrow.

I have to get up early enough to get to the railway station by 6am, so I can get to the airport by 8am to catch a plane to Melbourne for the Patient Education Conference at Lupus 2017.

Knowing my difficulty with waking up in the morning, I have created a foolproof plan.  (Well, hopefully a foolproof plan.)

I've set an alarm for 4.45am.  I made it "Hot Potatoes" by the Wiggles.  That should be something that will force me to get out of bed and shut it off.

As my daughter has to catch a train to work at the same time as I'm going, I've asked her to check that I'm awake as soon as she gets up as well.

Then, I'm going to drink copious amounts of coffee.

Tomorrow afternoon, there's a meeting of representatives of lupus support groups - so hopefully,  I'll have something interesting to report tomorrow night.  And on Wednesday is the Patient Education Conference, and I'll definitely have something worth while to tell you about then.

Thursday, it's back to the plane and trains to get home.

Sunday, 19 March 2017

Doing up a Zip at the Back of a Dress

One issue bothered me about my planned trip to Melbourne.

I'm going alone, so how am I going to dress myself? Specifically, since all my favourite dresses have zips up the back, how am I going to do up my own zip?

My first idea was to wear clothes that do up at the front, and I've started to make a new dress which buttons up the front.  However, I really don't have enough time, or energy, to make an entirely new wardrobe.

So I searched the internet, and found a number of gadgets it's possible to buy to do the job.  However, I also found, on a number of sites, a gadget so simple I could make it with materials in my arts and crafts studio. It's a safety pin on a long ribbon.

A safety pin with a ribbon helps do up a zip at the back
of a dress.

Tie the ribbon on the safety pin, then put the pin through the zip before putting the dress on.  Once the dress is on, throw the ribbon over your shoulder (if you're like me, throw it over your good shoulder) and pull the zip up.  Reach back and undo the safety pin.  (That's the hardest part - so use the biggest safety pin you can find  because it's quickest and easiest to undo.)

To undo the zip, reach behind your neck, put the safety pin through the zip, and then pull the ribbon down.

On a related note,  I've been having issues with the hook and eye at the top of zips lately.  They're too small and fiddly for me to do up, and they get caught in my hair. Fortunately for me, I have time to make my own clothes.  My solution to the problem, is to put a button and loop at the top of the zip instead of a hook and eye.  It's bigger, and easier for me to manage, and I use self-covered buttons so they don't stand out particularly.

A button with a loop is easier to manage
than a hook and eye at the top of a zip.