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.

Thursday, 16 March 2017

Brain Fog in Action

This is what living with brain fog is like:

I cleaned my glasses. 

I didn't immediately put them on my face.

I don't know where I did put them.

I can't find my glasses.

I have to wear my spare glasses.

Why do I have spare glasses?

I bought glasses.

I lost them and couldn't find them.

I went back to the optometrist and bought another pair exactly the  same.

I got home and found the original pair.

Update: Found my missing glasses when I went to bed.  They were on the pillow.

A Busy Couple of Weeks

I just looked over my schedule for the next two weeks:

Tonight - I'm helping out my Toastmasters' club at the Mayor's speech contest. It's a public speaking contest for kids in grade 11.

Sunday - I'm preaching at church.

Monday - Toastmasters' Club meeting - I'm giving a speech on the Anthropocene.

Thursday - Mayor's speech contest.

Saturday - Toastmasters convention in Toowoomba - I'm in the humorous speech contest, with a description of life in an English village, based on what I've learned from watching Midsomer Murders.

Tuesday I fly to Melbourne.  After checking into the hotel, I'll rush to represent Lupus Association Queensland, at a meeting of leaders of lupus groups. I'll be late, because I didn't know about the meeting when I booked the flights.

Wednesday all day is the Lupus 2017 Patient Education Conference. If you're there say "hello", I like to meet my readers.  If you can't be there, I'll write about it over the next few weeks.

Thursday, fly back home.

Friday, I start writing stories from my Melbourne adventure.  There should be lots of interesting and hopefully useful information for all of you lovely lupies out there. I hope what I write will make sense, because I'm going to be one sore,  exhausted, and probably brain-fogged, lupie.

How did I manage to organise all of these things in such a short space of time?  Did I forget that I need to take things slowly and not over-do anything?  I think the answer is that I haven't been organising anything.  I haven't been thinking well enough to be organised. Stuff just happens to me lately.

So, if you don't hear from me much until I get back from Melbourne, you'll know why.

Note registrations for Lupus 2017 Patient Education Conference are closing soon.  If you're planning to go, it's time to book yourself in.

Tuesday, 7 March 2017

Yet Another "Cure"

Nothing, not pain, not fatigue, not anything lupus can throw at me, will ruin an otherwise good day for me faster than someone (not one of my doctors) offering me yet another "cure" for lupus.

As if I hadn't already been offered a hundred thousand other (insert your favourite expletive here) "cures" already!  Lupus has got to be one of the world's most "cured" incurable diseases!

I've heard them all; from the person who cured lupus by giving up coffee; to marijuana cures lupus and absolutely everything else; to lupus is my own fault and I either need to pray harder or have a better mental attitude; to any number of supplements that contain ingredients which are actually toxic in combination with lupus drugs; to all kinds of new age crystals and chants and tapping and touching; to lupus and other autoimmune diseases don't really exist; to eating special diets.  You name it, I've heard it.  If you have lupus, I'd be willing to bet you've heard more than your fair share of them, too. You might even have tried some of them (hopefully not any of the actually dangerous ones.)

I was offered another cure today, and almost hit someone I quite like.  I know this person was only trying to be helpful, but I just can't cope with this same (again, insert favourite expletive here) all over again.

So why do people do this?

Well, there are lots of reasons.

The first reason is just plain evil.  It's to exploit us.  There are people who look around, see a group of people fighting for our lives and see a great way to make money.  These are the people (often massive multinational companies, but also small solo operators) who sell things that you'll find listed, but not registered with the Therapeutic Goods Administration - or the equivalent in your country.

Things that are listed don't have to be proven to do anything, they just have to be proven to be basically harmless.  (But that doesn't take into account whether they are harmless in conjunction with whatever actual medication you are taking.)  Things registered with the TGA are the ones that have to have scientific evidence that the good they will do outweighs the potential harm of side effects. (See the related post listed below.)

The others are at least well-meaning.

There are the people who misunderstand science. Some people see early results of research, and think that's the whole story.  Research has begun on X-Y-Z and early results are positive.  People read this and think that's the solution, they have to tell everyone to do that and everything will be OK.   But one early study is not the whole of the story.  Science is done with trials and tests and experiments being repeated over and over again.  One study doesn't tell you whether the results will be consistent over time, or what problems might arise with further studies.  An experiment with rats might eventually lead to trials on humans - but an experiment just on rats doesn't guarantee exactly the same results in humans. Science takes time to test and retest, to be sure to get things right.  Jumping the gun and acting as if early indicators are the final result can lead to disaster. Oh, and when the early tests are on a component of (something easily accessible), that doesn't mean that that easily accessible thing can cure it.  There's a matter of dosage, and of whether that component works when it's in combination with all the other components of the same thing.

There are the people who want to believe every problem has a solution.  Human beings have trouble with the idea that some problems don't have easy solutions, or don't have solutions at all.  Some people will have such a great problem with it they will endeavour to come up with a very simple solution and then put their faith in it.  (It's not just with chronic illness - look at the over-simplified political solutions people try to come up with for extremely complex social and political problems.)

There are the people who "got better". Some people who have lupus, or appear to have lupus get better.  They assume that whatever they were doing when they got better has cured their lupus, and they are excited and want everyone else to get better too, and so try to encourage everyone to do the same thing.  Sometimes those people were misdiagnosed and didn't have lupus at all.  Sometimes they went into remission.  Lupus flares and goes into remission at random times, for unknown reasons.  Remission isn't a cure, it just means lupus is not active for now, and if we're lucky for a long time. (Some really lucky people have had lupus go into remission for 20 or more years.) Many of us work out over time some of the things we do that are guaranteed to cause a flare, but those are not the same for all of us. It stands to reason, then, that even if someone did find a way to force their lupus into remission, it wouldn't work for everyone.

So what do we do when we're told about a "cure"?  Today, I lost my temper.  I couldn't cope with this all over again. I've heard too many "cures" and been worn down too much by the snake oil merchants and well-meaning people who didn't even actually know what lupus was.

But you might be more patient when someone tells you about the cure they heard about or that worked for them.  You might even be interested in trying it.  I'd recommend discussing it with your doctor first, to check that whatever this is won't actually be dangerous.  If you really want to try it, and your doctor can assure you it won't make your lupus worse, or do some other terrible thing to you, go with it and good luck to you.

If you do try some "cure" and it doesn't work for you, don't blame yourself or think you did something wrong.  Lupus is an incredibly complex disease, which affects people differently.  In life, very complex problems very rarely have simple solutions.

Related Post: What AUST R and AUST L on your medications mean.
Related Post: I'm not going back