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

Review: League of Mortals, by Duncan Cross

Wesley Peary is a normal high-schooler, with the normal high school issues: school, part-time job,
friends, girlfriends, one teacher with an irrational hatred for him.

And one day, at his birthday pool party, he suffers from diarrhoea, and suddenly, he's thrown into a world that is definitely not normal for a teenager.

Suddenly, in addition to the normal teenager things, he has to face chronic illness, doctors (good, bad, and downright abusive), a girl with Munchausen's, changing diagnoses, fatigue, life and death.

Duncan Cross draws on his own experience of life with chronic illness in this semi-biographical work of fiction (or is it a semi-fictional autobiography?) He opens up the world of Wesley Peary, a normal teenager, thrust into an abnormal world.

Through Wesley's story, Duncan Cross highlights major issues facing people with chronic illness: the varying competencies of doctors, the desire to do "normal" things, the cost of medical treatment and the situation of people who can't pay, the choice to end a life prematurely.

It's a highly believable, highly readable story, with some pain, some humour, and a lot of poo.

People with chronic illnesses will recognise parts of ourselves in Wesley.  People who don't have chronic illnesses may get a window to our world through him.

I loved this book. I had trouble putting it down - in the end I read it in two sessions.  It would have been one, but I needed to sleep.  I saw a lot of myself in Wesley, someone just trying to live their life, and being constantly interrupted by a body that just won't do what it's supposed to do.






For more about Duncan Cross, visit his blog: Duncan Cross.

Have you read this book?  Tell us what you think of it in the comments below.

Review: The Lupus Encyclopaedia

Everyone who has lupus should have at least one good basic information book about lupus.

The Lupus Encyclopaedia
by Dr Donald E Thomas, Jr.

The one I bought when I was first diagnosed was read cover to cover, front to back, back to front, topic by topic, until the print was almost worn off the pages. That book's a bit dated now, but I still wouldn't ever throw it out.  It's what told me that what was happening to me had an explanation, that I wasn't the only person in the world to go through this, and there was hope of getting things under control.

Earlier this year, I was sent a review copy of a book that I think is going to fulfill that same role for lots of newly-diagnosed lupies for a number of years to come.  It's a good reference for those of us who've been diagnosed for a while as well. It's The Lupus Encyclopaedia, by Dr Donald E Thomas, Jr.

I've been a bit slow to get around to reviewing it for a number of reasons, not the least of which is that I've been struggling with brain fog, and was afraid it was too complex to handle.

It's a huge book.  If you're brain fogged, like me, you may think it's going to be overwhelming.

Good news.  You don't have to have the concentration to read it cover to cover. You don't have to be an expert on the terminology rheumatologists will use, even though it's written by a rheumatologist.

Once I had the courage to open the cover, I found it was not only nowhere near as intimidating as I thought, but actually incredibly accessible and useable.

The book is helpfully broken into chapters, which you can read as you have a particular need or interest (ie, when a crisis comes, and you want to know what this latest test result means, or what this latest term the doctor is using actually means in the real world.) Each chapter can be read on its own - without needing to have read the chapters that precede it.

It also has an incredibly useable index at the back. (And you know not all books, even the ones that might otherwise be useful, do.)

Dr Thomas does use the medical terminology - but he explains it in everyday language. He manages to do that without "talking down" to his reader, which is a plus. I, for one, struggle enough in brain foggy times without feeling that authors might think I'm dumb.

If a doctor uses a term I don't know, I can make a note of it, and then find it in the index of the book, which will take me to a simple, understandable, explanation.

The information is reliable, and up-to-date.  It relies on current research, and Dr Thomas' own and his colleagues' experiences dealing with real-life lupus patients.

I know I'm going to get a lot of use out of my copy.  I suspect other lupies will get lots of use out of theirs'.


THOMAS, Donald E, Jr. The Lupus Encyclopaedia: A Comprehensive Guide for Patients and Families. Baltimore: Johns Hopkins University Press, 2014.

Shielo Leave in Protectant Review

Well, I must have passed some milestone in the blogging world.

For the first time ever, I received an email, from a company which asked if I would like to review their autumn (obviously they're overseas) skin and haircare range.

I replied, that I'd be interested in any products for extremely sensitive, rash-prone skin.  What arrived in the mail was this:

It's Shielo leave in hair protectant.

Now, before I attempt to review the product, perhaps I should explain something about my hair care routine.

After many years of struggling with dermatitis on my scalp and hair falls (and I know lots of lupies know both of those things only too well), I am very fussy about my hair.

I don't go to hairdressers, unless I've been without any scalp or hair problems for a very long time.  I don't trust the chemicals they use, and I'm not sure they sterilize their equipment between customers.

I cut my own hair, keeping it comparatively short so it's less distressing when a handful randomly falls out (it doesn't look as much as if it's long hair.)  I dye it maybe once or twice a year, and again, only if I've been without any scalp or hair problems for ages.  I always use the same brand of dye, rather than risk something unknown.

I only wash my hair once a week, and then I massage a tiny amount of oil into my scalp first, to act as a barrier between my skin and the shampoo and conditioner.  Styling my hair consists of giving it a bit of a scrunch after it's been towel dried, and it naturally falls into waves.

My hair dryer and curling wand still exist somewhere, but haven't been used in at least a decade.

Because of all of that, you might not be surprised to know that I have no idea what a hair protectant is supposed to protect hair from.

I had a long look at the bottle, and read the information on it.  I still didn't know what its purpose in life was.  I asked a friend, but she didn't know either.

My 19 year old son has beautiful waist-length hair.  I asked if I could spray the hair protectant on his hair and see what it did. He looked at the bottle suspiciously and said, "I thought you were writing this review."

The bottle says it's for styling.  So I squirted a little on my hair before I scrunched it after it was washed.  My hair fell into the same waves it always does, with no perceptible difference. So trying it didn't tell me what it does, but I did find out that it doesn't cause an allergic reaction, well not for me, and not at the moment.

It smells quite pleasant. That's got to be a plus.  Unless of course, you're allergic to fragrances.

The bottle says it contains organic extracts, and is paraben free.  I looked at the very long list of ingredients on the back.   Some of them have alternate names written after them which indicate that the compounds do have some relationship to plants, so yes, it does have organic extracts, and the ingredients list doesn't include paraben.  So that's accurate.

It says it has UV protection.  I use 50+ sunscreen on my skin, but have never considered UV protection for my hair.  Not that I'm likely to be in the sunlight long enough for it to have any effect on my hair - if I were, I'm sure I'd be suffering from a major lupus flare as a result. So, no, I didn't test out the UV protection claim.

It also says it has antioxidants.  I understand that antioxidants in food are useful in combating free radicals which can cause disease and degeneration.  I don't understand how that applies to hair, which is already dead.

All that said, it smells pleasant, I didn't have a reaction to it (and I react to a lot of things) and the bottle says it's cruelty free, which is always a good thing.  So if you need your hair protected, from whatever dangers there are to hair, I guess this is as good a product as any.

Keeping Track

One of the big issues with lupus is trying to keep track of everything: symptoms, medications, doctor's appointments, etc.  It gets especially complicated when we're suffering the dreaded brain fog, and would be lucky to remember how to put our shoes on.

So here's two alternative tools you could try to help you manage the barrage of information you need to keep track of to manage your lupus:

 The Lupus App

You can find this on Android and iPhone.

It's developed by super-awesome rheumatologist Dr Shashank Akerkar.  (What makes him so super-awesome, you ask?  Unlike the rheumatologist who charges me $160 per visit, Dr Akerkar actually believes in giving patients information.  And he doesn't just give information to his own patients, but puts it out there on the internet for the rest of us as well - for free.)

Main menu of the Lupus App.

What you'll find on this app is:

• General information about managing lupus.
• A glossary of the terms your rheumatologist and other doctors are likely to use.
• A place to track all your medications
• A place to track all your doctors' appointments
• A place to keep a summary of your medical history.
• Useful links (including Arthritis Support Board - Dr Akerkar's own site.)
• A place to note symptoms and health concerns to discuss with your rheumatologist.
• An option to email your rheumatologist (if your rheumatologist is the kind that would accept patient emails.)

The "Doctor" page on the menu is about Dr Akerkar, and how to make appointments with him.  This bit I'm not likely to use, because he's in Mumbai, which is a fairly long way to travel from Brisbane for a rheumatology appointment. It does give the

Dr Akerkar

option to contact Dr Akerkar on Facebook, Twitter or email, and I know a number of lupies from all around the world do contact him for information from time to time. (Let's not overwhelm him, though, he does have his own patients to take care of as well.)


Oh, did I mention you can get the app for free? That's another big plus.

Lupus Book

If you prefer to keep track of things on paper, the Lupus Book may be more your style.

I wrote this to track things for myself. The disadvantage with the book, as opposed to the app, is that it's bigger and bulkier and you need to remember to carry it.  The advantage is that you can tuck referral letters, prescription repeats, etc in between the pages, so everything stays together.

Medication section of the book.

There are pages for medical history, contact details of doctors, next of kin.

There is plenty of space for tracking medication, so that as it changes, one line can be crossed out and a new one written in at the end.  It's not as neat as changing a line in an app, but you see what changes have happened over time.

The largest section of the book is for appointments.

Each appointment fits on a double page, allowing space for details of which doctor/therapist you are seeing, time and place, as well as things you need to do before the

Appointments page.

appointment, questions you have and things that have changed since your last appointment. It also has the all-important section for prescriptions you need.

The idea is to fill in things as the occur to you between appointments.  If you notice you're running low on repeats for a medication, write it in the book when you notice, so it's there when you go to your appointment.  If you notice a new symptom, write it in the book when it happens, so you don't forget to mention it next visit.

Because it's a book on paper, the publisher would have some problems with it being free, but I can tell you the cheapest place to get it.

You can buy direct from the publisher here: http://www.lulu.com/spotlight/IrisCarden. It costs $12.60 (Australian) plus postage.  Because Lulu is a print-on-demand publisher, they usually get the book printed for you in your own country to minimise postage costs and to save the environment the effort of shipping things huge distances.

Lupus Book

front cover

My copy of Lupus Book has arrived.

Yes, even though I wrote it, I still have to order a copy from the publisher the same as everyone else. That's the nature of print-on-demand publishing.

I've started putting information into it.  It might take a little while, but once it's up to date, it should be a simple matter of just making notes in the appropriate places when things change, or when I make new appointments, or go to the doctor, etc.


So what will you find in it?

First there is a personal information section, to record basics of name and address, medicare and health insurance details, allergies, etc.

The next section is an address book. The first page is for emergency contacts, then a page for General Practitioner, Rheumatologist and Pharmacy.  Then there are pages for other medical/ therapeutic contacts.

Next is a section for listing medications.

Medications pages

As medications change, there is space to simply cross out the line that is no longer accurate, and to write another line.  (There's a number of pages for listing medications.)


The biggest section is the appointment section.

Each double-page is for a single appointment.  There is space for the details of time, place and who the appointment is with.  There's a space for "homework" from your last appointment (eg do your blood tests at set times, see a physiotherapist, etc, or get a new referral from your GP).That can be filled in straight after your previous appointment, so you don't forget any things you have to do.

Next is a section for symptoms that are new, changed, etc.  As things change, they can be noted, so that when you get to the appointment, you don't forget.

Appointments section

There's a place for questions you want to ask at your appointment, and one for any prescriptions you need, and a space for any other notes.

(Referral letters, blood test orders, etc, can be paper-clipped to the appropriate pages.)

I put this together because I desperately needed it. Brain fog has meant I'm losing track of everything.  I've published it because I suspect if I need it others may also need it.

If you try it and think of things that you believe would be useful in future editions, I'd love to hear from you.

Available from www.lulu.com/spotlight/IrisCarden

For October (Lupus awareness month), there is a 10% discount on Lupus Book. It's available from the publisher www.lulu.com/spotlight/IrisCarden.

Review: SlimKicker.com

slimkicker.com

Last week, I set out to try the SlimKicker website. This is my review of  the site.  I do have an initial confession to make - I didn't do the whole week. My lupus was flaring and I was just too sick to care about anything.

That said, I asked a few other people to look at it with me.

The site is meant to turn weight loss into a role playing game.  My experience of RPGs is limited. (I once attempted to play Animal Crossing, but had trouble understanding the map.)  So I asked Mr 18, who has been playing RPGs most of his life, and who is studying IT what he thought. He had a good look at the site, and said it was well-laid out, easy to use, and the concept was good.  Since he's Generation Y (the target audience), I'd say that means the site gets a big tick for usability.

Actually, even I managed to work out how to use the site, unaided, so it is definitely very usable. 

I took the computer to the Thursday Night Weight Loss Group at church. We had a play with it there. Everyone liked the idea.  We wouldn't necessarily swap from our Calorie King website over to using it, but we could all appreciate that the site has appeal, usability, and catches the participant's interest.

The game gives out points for entering the food you eat, with extra points for what is seen as particularly healthy choices.  It also gives points for exercise.  (I couldn't enter my exercise, because it doesn't allow for things like hydrotherapy - and there's no way I could find to enter a custom exercise that's not in the database.)

Along the way, you can take up extra challenges (for people familiar with RPGs this is like the quests you can do in some games as extras to the storyline.) An extra challenge, like eating salad once a day for a week, can give you a couple of hundred extra points.

Gain enough points, and as with other RPGs, you "level up", or go to the next level. Each time you level up, you gain a reward - something you've chosen in advance to give yourself.  This is a fairly useful tool in weight loss or any other behaviour change - to reward yourself when you have achieved mini-goals along the way.

In terms of the diet itself - there is no diet set, but there is a recommended calorie intake for the day, and a recommended target for the amount of several nutrients. Most of this looked fairly standard.  I was a bit surprised initially about the recommended amount of sodium - but on checking the Australian National Dietary Guidelines found it was at the high end of the healthy range of sodium intake.  (My own regular sodium intake is at the low end, so I was way below the target point.) The fat intake target was another matter completely.  The site set a target for me of in excess of 90g of fat per day.  Checking the Guidelines, a healthy fat intake for me would be 20 to 25 per cent of my energy intake - working out to a maximum of about 35g of fat per day. 

It also has benefits in terms of portability, as it comes as an iPhone app, as well as a website.

So, all in all, would I use this long-term? Probably not. I'm not the target audience, being a generation too old and not so interested in RPGs. I also use a Blackberry, rather than an iPhone, so wouldn't be able to use the phone app. And, of course, because of my health condition, I can't do the kinds of exercises SlimKicker recommends.

On the other hand, if I were 25 years younger, did not have a chronic illness limiting the type of exercise I'm able to do, and had an iPhone - I'd probably find SlimKicker very attractive indeed.

Note: this is not a paid review. But it was done at the invitation of the app developer.