Showing posts with label resources. Show all posts
Showing posts with label resources. Show all posts

Tuesday, 17 July 2022

More on the Shade Sensor

The Shade ultraviolet light sensor,
which is much tougher than you might
expect a small electronic device to be.
A while ago, I reviewed the Shade ultraviolet light sensor.

I love this device. It helps me track how much ultraviolet light I'm exposed to each day, and lets me know when I should probably call it a day and go inside.

Since my review.  I've learned something more about the Shade. This thing is tough.

If, for example, someone accidentally threw the sensor into the washing machine with a load of clothes, and found it a week later, after several more loads of wash were done,  firmly attached to the inside of the washing machine drum, it surprisingly would still work. (That magnet is really strong, there was no way the device was coming away from the drum without help.)

Please note, I do not recommend, suggest, or in any way encourage, putting the Shade or any other electronic device through the wash.

I'm just saying, stuff happens.  With brain fog and a bit of sore joint clumsiness, more stuff might possibly happen in my house than in a healthy person's house. You might experience something similar, or maybe not. I'm not saying you're exactly the same as me. But if you are like me, you might be reassured to know that the device you're using is tough enough to handle it.

Related post: Review: Shade UV Light Sensor

Tuesday, 4 April 2022

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.

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Sunday, 2 April 2022

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 2022

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.

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Friday, 31 March 2022

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: