Friday, 22 July 2016

Adventures in Brain Fog Get Serious

Some recent brain fog adventures of mine:

  • Going to post the mail, but forgetting to take the mail with me.
  • Attributing the quilt on the cover of my new book to quilter Rhobbie McAuliffe, when I know her name's Rhonnie.  (Many, many deep apologies. Yes, I've fixed it, but not before I ordered a stock of them.)
  • Putting wash in the machine, and forgetting to take it out.
  • Getting to dinner time, and checking my pill box to find breakfast and lunch time pills still there.
  • Deleting emails, because reading them didn't make sense.
  • Forgetting passwords on everything, so constantly having to create new passwords.

Tuesday, 19 July 2016

The Business Directory

I've just been making some changes to the Business Directory.  It's now arranged in categories.

While I've been updating it, I also deleted the links that no longer work, or took me to shopfronts with no stock.

If I left your business out, please let me know when you're back in business, and I'll add you back in.

If you have a chronic illness and run a small or micro business on-line please contact me with the name of your business, your link, your name, your chronic condition and what your business does.  I'll add you to the directory for free.


I've often wondered this.

Why do we need a bottle this size ....

...for this volume of pills?

Monday, 18 July 2016

Stem Cell Treatments

Image: dog with stethoscope.  Text: Trust me, I'm qualified to perform this procedure
In the news today, a coroner has blamed some dodgy stem cell treatment for a woman's death.

Her treatment, and the treatment being offered for many other conditions currently, was done by a plastic surgeon, removing fat stem cells and re-injecting them.

There can be some confusion caused here.  There is actually legitimate research into stem cell treatments for all kinds of conditions (including lupus) happening now.  This research is at very early stages, and there's no way yet to know if it will prove a viable treatment in the long term.

The research for lupus is looking at stem cell transplants. This would effectively require killing and replacing part of the immune system.

It would not be done by a plastic surgeon.

Once killing the immune system is involved, it becomes a very specialist, and very dangerous medical procedure.

From my years as a hospital chaplain, I can tell you a little about what happens to bone marrow transplant patients (who also need to have a major part of their immune system killed.)  They spend a minimum of a fortnight in an isolation room of a specialist hospital ward, waiting for their immune systems to rebuild following the transplant.  In this time their lives are at serious risk - either from infection (if someone doesn't follow proper handwashing/gown/glove/mask protocol in entering the room, or enters the room if they have a cold or other infection), and from the risk of their bodies rejecting the donor bone marrow (graft verses host) which can be fatal.

That's the kind of thing most likely to happen if stem cell transplants become an actual treatment for lupus.  It would not be something anyone would take lightly, and not something that could be done at a day clinic, or by a surgeon who wasn't a specialist in the field.


ABC Background Briefing: Hallmarks of 'quack medicine' in fatal stem cell treatment, coroner finds

Lupus Foundation of America: Stem cells and lupus research

WebMD: Stem cell transplant for lupus topic overview

Saturday, 16 July 2016

Please Write to your Local MP

Take a deep breath.  The election's over.  Now I want to start a letter-writing campaign, to try to make the government aware of issues that affect those of us with lupus and other chronic illnesses.  Let's do this with actual posted letters on paper, because they're a bit harder to ignore than emails and internet surveys.

Find your electorate in this list: Click on your electorate to find your local member.  Then click on your local member to find their address.

What are you writing in your letter?  Well feel free to put it in your own words, and add in any more information you feel is relevant, but this is a basic draft:

Dear .......,
Congratulations on your election (or re-election) to the seat of .......
As a member of the Australian Parliament, you may want to know about issues faced by Australians with serious chronic illnesses, such as lupus, fibromyalgia, and related conditions.
You may be aware that women are the fastest growing group of people becoming homeless, and one of the factors leading to homelessness in women is frequently chronic illness. 
Lupus causes pain, fatigue, cognitive dysfunction, arthritis, and organ failure. It does not discriminate about which organs to attack.  It is incurable, and eighty percent of the people who have it are women.
Many people who have lupus struggle on for years, trying to live a "normal" life, working full-time, providing for their families. There comes a time for many of us however, when that is no longer possible.
Chronic illness can place an inordinate pressure on relationships, and some marriages break up, leaving the patients being the only one supporting themselves, and sometimes children as well.
So what happens when the doctor says it's time to stop work? We apply for the Disability Support Pension.  Very few people with lupus actually get it. Many keep working full time and end up with organs failing, multiple hospitalisations, etc.
In the lead up to the election, disabled pensioners were demonised as a "burden on the economy", and the pension was tightened up so that about eighty-five percent of applicants for the DSP were refused.  That clearly means that even fewer people with serious chronic illnesses are being accepted.
What do you suppose happens to the lupus patients who are denied the DSP? Some struggle to continue to work full time - at great cost to their health.  Some drop to part-time work and struggle to survive on insufficient income. Some will end up on Newstart Allowance, and will have to keep applying for jobs they are not physically able to do, while struggling to pay rent and survive on the income they receive. Some try to support themselves with whatever arts or crafts work they do as therapy at home. Whatever happens, their rent or house payments aren't reduced. 
How can you help? You are one voice in the parliament that controls much of our lives.  You can promote easing up on the DSP for people with severe chronic illness.  Our doctors tell us to stop working for a reason. A test to see what we can do doesn't show the true picture.  Any of us can do most things a healthy person can do.  We can't do as many things in a day as a healthy person can do. Someone with lupus may be able to work or care for herself or himself and a home; but not be able to do both. Most of us prefer to work, and will work as long as possible, so when we apply for a DSP, it's necessary.
You can work towards reinstating the Chronic Illness Dental Scheme.  
You can object when people on the DSP are called things like a "burden on the economy." We didn't choose to get sick, and we don't try to be a burden on anyone.  (And remember parliamentarians don't have to be sick or at retirement age to get their pensions, so calling us a burden, when there are people quite able to work being paid much more is more than a little offensive.)
You can protect Medicare and the Pharmaceutical Benefits Scheme if they ever are under threat.
Thank you for your attention to this matter.
If you should want to know more about my condition, or how I manage to live with it, please contact me on .........
Yours faithfully,

That's my version. Yours may be different.

The important thing is that our parliamentarians understand that living with a chronic illness is a major challenge, and those who can't work need to be supported.

Please write to your member of parliament, and please ask everyone you know to write as well.  (Healthy people might need to change some of the wording.)The more people who do,  the more likely politicians are to realise that this is important.

I'm sending to my local member, the Prime Minister, and all senators from my state. Please note in the comments who you've written to. (It doesn't matter if anyone gets several letters.)

Update: Important.
I've just discovered the list of senators on the Parliament House site was last updated before the election.  Please leave it a week or two before writing to Senators, so that you get the right people.  The Members of the House were updated since the election, so go ahead and contact them right now.

Wednesday, 13 July 2016

Patchwork Available Now

My new book, an anthology of short stories and poetry is available now, direct from the publisher here:  Over the next couple of weeks it will appear in all your favourite on-line bookshops as well. (The paperback has one bonus story you won't find in the eBook version.)

Saturday, 9 July 2016

New Book Coming Soon

I've been busily working on my new book Patchwork.

The first proof copy is coming soon for me to do final edits on, and then it should start appearing in all the online bookshops soon.

It's a book of short stories and poetry, and I've had some fun compiling some things I'd already written and writing some completely new stories as well.

Given the difference in price between eBooks and print books, I've decided to add an extra story to the print version that's not in the electronic version.

The extra story's a humorous look at an aspect of life with lupus. I'm not telling you any more - you have to buy the book.

Keep an eye out for it, the cover design might change in the final version, but the name won't. The artwork will still feature the great quilt made by my friend Rhonnie. (It might just be placed differently to make the title easier to read.)