Showing posts with label support. Show all posts
Showing posts with label support. Show all posts

Wednesday, 2 August 2022

Methotrexate for Lupus vs Methotrexate for Cancer

I had an unexpected phone call the other day.

Here's the background.  If you go back to this post from 2015, you will know that through the Queensland Government's community care program, I have someone come for an hour and a half each fortnight to help with the major cleaning stuff around the home.

The lovely lady who comes to help out is Karen.  She does the heavy stuff - vacuuming, bathroom cleaning, changing sheets, etc.  She also brings treats for my dog (not in her job description), and is just  a delight to have around. We all look forward to her visit.

My strange phone call was from a nurse who works for the agency that employs Karen.  The nurse had looked over my file and realised I was taking methotrexate.

The nurse was concerned for Karen's safety - whether she should have been taking care with any potential exposure to cytotoxic material.  (Methotrexate is a chemotherapy drug - in hospitals, the drug, and any body fluids of patients treated with it have to be handled with special gloves.)

So I had to explain to a nurse the difference between methotrexate used for cancer treatment in a hospital, and used for lupus treatment at home.

Cancer patients take methotrexate in high doses over short periods of time. Those high doses mean that while they are taking it, their body fluids still carry lots of poison from the drug.

Lupus patients have methotrexate in much lower doses, and we have it only once per week, and take it for years and years.  I take my methotrexate on Sunday night, by Friday when Karen comes to clean, it is well and truly out of my system.  Even on Sunday night, and through Monday, while it is still in my system, the dose is so low, there's really no risk to someone whose only exposure is cleaning my bathroom.

Methotrexate can be dangerous, and I am careful with it.  I'm careful to take exactly the dose prescribed and always on the same night of the week. (People have died from taking methotrexate incorrectly, always take it exactly as your rheumatologist says to.) If I'm having a bad day and my son is sorting out my pills, I still deal with the methotrexate bottle, and don't have him handle the tablets.

The way we take it for lupus, however, is much safer than the way it is used for cancer treatment.

Monday, 3 April 2022

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 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

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.)

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:

Sunday, 19 February 2022

I'll Be There. Will You?

Well, I've sorted out how I get to the Lupus 2017 Patient Education Conference, which is being run in
conjunction with the World Lupus Federation's International Conference on SLE.

It's happening in Melbourne on the 29th of March, this year.

I squeezed my financial budget to its last breath and managed to book flights and accommodation.  Next, I have to watch the other budget - the energy budget, to make sure I can handle the flights to Melbourne and back.  I've got another conference (not lupus-related) a couple of days earlier, so I am going to have to be very careful to not overdo things.

If you're wondering why I'm excited to go to this event, here is a copy of the agenda:

Preliminary Agenda

08:30-10:30 - Outcome measures and treatment targets in SLE
 (in Hall Melbourne 1)

(This session is part of the International Congress on SLE & Asian Congress on Autoimmunity. Individuals registered for the Lupus Patient Conference may attend this session, if desired.)

1.             Dafna Gladman - Measuring disease activity and damage in SLE

2.             Andrea Doria - Remission as a treatment target in SLE

3.             Mandana Nikpour - Low disease activity as a treatment target in SLE

10:30 - 11:00 - Coffee Break

11:00-12:30 - Patient Program Module 1: What we have learned about the lupus?

Chair: Barbara Ward

1.            Eric Morand - Causes, Pathways and Progression of Lupus 

2.            Brad Rovin - Challenge and triumph of kidney disease in SLE 

3.            Ian Bruce - Cardiovascular risk in SLE 

4.            Susan Walker - Pregnancy journey

12:30 - 13:30 Patient Program Module 2: The changing outlook for treatment of lupus

Chair: Sandra Navarra

(A light boxed lunch will be provided to all registered participants.)

1.             Joan Merrill - Current therapies and changing perspective on managing lupus 

2.             Richard Furie - Overview of new therapies in development for lupus 

13:30-15:00 Patient Program Module 3: Living and coping with lupus

Chair: Michelle Leech

This session features a discussion forum among a panel of lupus medical experts and people living with lupus.  The panel members will share stories and successful strategies for living and coping with lupus.  Bring your questions, and let our experts help you answer them.

A/Prof Davinder Singh-Grewal - Pediatric rheumatologist, Westmead Children's Hospital

Dr. Peter Gowdie - Pediatric rheumatologist and general pediatrician, Monash Children's Hospital

Dr. Kathy Nicholls - Nephrologist, Royal Melbourne Hospital

15:00-15:30 - Break

15:30 - 17:00 - Patient Program Module 4: Resources for patients with lupus and their families

Co-Chairs: Barbara Ward and Duane Peters

1.             Local resources for people with lupus featuring representatives of Australian groups

2.             Self-help resources - Dian Syarief, Syamsi Dhuha Foundation presenting on Exercise DVD and App

3.             Australian Lupus Group Collaboration - Discussion among representatives of Australian lupus about collaborative efforts to raise awareness of lupus and provide support services and advocacy to help individuals and families affected by lupus. 

4.             World Lupus Federation - Information about global efforts to address lupus around the world.

5.             Closing remarks - Duane Peters & Barbara Ward

It looks interesting, doesn't it?  I think it's going to be really informative. And it's going to be an adventure, because I'm going on an interstate trip totally unsupervised. There will be no-one making sure I take my pills, or checking that what I'm saying and doing makes sense.

So after the conference, I should have some great stories to tell you  on this blog:  either something really informative that I've learned at the conference, or some great adventure that brain fog has lead me on when no-one was checking up on me...

Unless I get lost in an airport or something, I will definitely be there.  Will you?

Conference details and registration:

Monday, 16 May 2022

Five Years of Sometimes, it is Lupus

Image three toy polar bears. Text: It's easier to bear, because we're facing it together.

Sometimes, it is Lupus is five years old today.

Yes, five years ago today, I wrote my first, hesitant, post, not knowing if anyone would read it.

I don't know that I expected it to last this long. I don't even know that I expected to last this long myself.

One of the initial reasons I started blogging was to make money, in five years, I've made less than $200.  So that's not funding a big party to celebrate five years in business.

Another reason was to tell people who didn't know about lupus about this disease.  It turns out that almost all my readers actually have lupus or are personally touched by it in some way (a family member or close friend has it.) So actually I'm not telling anyone anything new.

Looking at its original goals, this blog's been an abject failure.

I keep writing, because I've discovered those goals were second best.

I've gained something much better than money, however.  I've gained a community.  The people who read this blog, who make comments, who speak with me on social media, remind me constantly that I'm not facing this rotten disease alone.  Whatever happens to me has happened to someone else, and will happen to yet another person.  We're all in it together. And for me, that's important, because one thing chronic illness is really good at is making me feel alone.

So dear readers, thank you for the five years of ups and downs that we've shared.  Hopefully, we'll have many more years to share as well.

And if you were thinking of a birthday gift?  Can you spare a fiver?  On the right-hand column of this blog, you'll find a couple of organisations that are busy doing lupus research.  Choose one and send them five dollars in honour of five years of this blog. If each of the  4000+ people on the Sometimes, it is Lupus Facebook page sent five dollars to lupus research that would be .... not nearly enough .... better all send ten.

Monday, 25 January 2022

It Could Have Been Me

Image: pink rose. Text: Every now and then, the wolf takes one of us. And the rest of us can't avoid thinking, "That could have been me."Every now and then I hear about another person who has died in the fight against lupus. Sometimes, it's someone I've come to know through my online networks, sometimes it's a name and a face that sparks a vague recollection, sometimes it's someone I don't think I've encountered at all.

While I only really grieve over those I've had some interaction with, reading about a lupie's death always pulls me up short, and leaves me in shock for a few hours.

Today, as news was shared and reshared about another death, someone gave words to that shock I always feel.  She posted: "That could have been me."

"Lupus" means "wolf", the disease got its name from rashes that looked, to someone anyway, like wolf bites.

This wolf is no tame little lap dog.  No-one gets to control it.  It's a creature of pure malevolent evil. It stalks us constantly. If it's not actively attacking us, it's planning the next attack.

We fight back with drugs with trying to keep to a basically healthy lifestyle, by trying to avoid things we know are triggers.

But the wolf is unpredictable, and we never know where the next attack is coming from.  As hard as we fight, it's determined to fight harder.

So when one of us falls, we all pause for a bit, and recognise, that could have been us. And we look around at family, friends, things we want to achieve, all the reasons we have to live, and we determine to fight even harder.

Then we complete the thought: "That could have been me, but today it wasn't.  I'm still in the fight, and I'm going to give it everything I've got, because I plan to win."

Thursday, 7 January 2022

A Bit of Understanding

Sometimes, I find people are incredibly understanding.

Take the friend whose birthday party I'm going to tonight.

The invitation came with the offer of a bed for the night, so I wouldn't have to try to get home tired.  Then, since the party's in Brisbane and I live in Ipswich, my friend asked someone who's coming from further away to provide transport for me.

We're going very early, so the lady who is driving can help set up and I can have a rest before the other guests arrive.

So my friend not only invited me to her party, but organised transport and accommodation and took into account rest times.

I'm very blessed to have people who are this understanding in my life.  My hope, and prayer for other lupies is that you also have such wonderful friends who understand what lupus is like, and make it easier for you to join in celebrations and other "normal" activities.

Thursday, 17 December 2021

Ask And You May Receive

Image: red rose on black background. Text: Asking for help is never easy, but sometimes it is necessary.It's hard to ask for help.

I like to think I will eventually get to that whatever it is I hope to do. Unfortunately, incomplete projects are building up and building up all over the house and yard, and in my computer memory.

When we first moved here, my son had been taking time out from study, reassessing what he wanted to do.  He went with me to buy my mobility scooter, and he is the person who assembles it, and pulls it apart, to put it in and out of the car.  He brings the scooter battery in from the car to charge it up for me. He goes with me to doctors' appointments and remembers what things I have to do to follow-up when my brain fog's at its worst.  He makes sure I take my tablets on time.

But of course, he couldn't just stay home all the time, unless there was a way for him to have an income to do it.  As it turned out, there was.  With help from my GP, we applied for him to have a carer's payment. (There's a link below to help you find information on carer's payments at the Centrelink site.)

Sometimes I worry that it would be better for him to be studying or working, doing "normal" things for a young man, instead of spending all his time with his Mum.  But, at least for now, he's happy for helping me to be his "job".

Strangers in the shopping centre have told him how much they respect the work he does when he helps me out in the shops.  It may not been a career he would have chosen, but for now it's what he does, and he does it well.

I still potter around and do what I can, but anything that requires lifting or stretching, or anything I'm just too fatigued for, he takes over.

To top that off, we also applied for help from the state government's community care services.  I've been approved for one and a half hours per fortnight for help around the house.  That means we have someone come in and do the vacuuming and cleaning the bathroom and kitchen.  After the state government subsidy, I pay $5 per hour for that extra help.

(There's a link below to information for Queensland, but a quick web search should help you find your own state's equivalent.)

Because my daughter and her partner live upstairs, I was assessed as not needing help with the yard, because there are other able-bodied adults who could do the work.  If they weren't there, more help could have been provided for yard work as well.

There's a basic lesson here.

Managing with lupus can be hard.  It can be challenging, and just trying to do everyday things can be overwhelming. But you don't have to assume you have to do everything alone.

It's worth investigating what help is available in your area.  If you don't know where else to start looking, ask your GP what she (or he) can suggest.

Remember, you may not get approved for everything, but you won't get approved for anything if you never apply.  Ask, and you might just get the help you need.  

Further information:

Centrelink Carer Payment:

Queensland Government Community Care Services:

Tuesday, 17 November 2022

ARRC Holding Its First Queensland Event

The Autoimmune Resource & Research Centre is holding its first Queensland event on the 6th of December.

It's a "Summer Soiree for Lupus", and here are the details:

6th December 11:30am - 2:30pm The Terrace Cafe The Gardens Club 75 Gardens Pt Rd Botanical Gardens Brisbane CBD QLD.

RSVP essential 25/11 ph. 0249 214095 or  
Enjoy lunch and discussion with Dr Marline Squance.
More information: .

I'm going, but am not yet sure how I will get there.  It might be a train trip.  I find the drive to Brisbane exhausting, and driving in the Brisbane CBD incredibly stressful. (And I have to be in the Brisbane CBD again the next day to see my rheumatologist.)

Any other lupies from the Ipswich area who are planning to go, please contact me, maybe we can travel together.

I hope I see lots of you lovely lupies there.

Monday, 9 November 2022

Please Help A Fellow Lupie Update

If you wish to help lovely lupie Ruby from the previous post, here is her gofundme link

Here's Ruby's story in her own words:

Never in my lifetime have I been this destitute or in this much dire need. After moving out here in the middle of the southern California high desert my health began to decline, I have systemic lupus and it is trying to overfix existing back issues so that I ended up in a wheelchair from disc deterioration and herniation. I can't work and am fighting to get disability. My landlord has carried me as long as he can and now needs the rent I am down to the only utility left, the electric. Water has been off almost four months and I no longer can fill gallon jugs from the neighbours as they are gone now. I have made due but now I need help. Asking is out of character for me and not because of pride, but shame. A dear friend who is a fellow lupus sufferer encouraged me to set up an avenue for help, so here I am. I look to God as my source and am extremely grateful and humbled by whatever assistance I receive. Thank you

Saturday, 7 November 2022

Please Help A Fellow Lupie

Image: coins and pills.  Text: The economics of illness: increased expense, decreased capacity to earn.Most lupies find the economics of illness kicks in at some time.  We have decreased capacity to work and earn income, and increased expenses with doctors, medications, etc.

A few years ago, just as I went from employment to a disability pension, my rent was increased to an amount more than my income. I didn't know how I was going to survive or how I could provide a home for my children.  Some wonderful friends helped me out. I still don't know what I would have done without them.

Now, I'd like to ask you to help me help someone else who is in a dire situation.

Lovely lupie Ruby is in the USA (where doctors and medications are not subsidised by the government in the way they are here.)

I've been talking with Ruby on line for a while now, and I really don't know how this amazing lady keeps going.

As I write this, she has not had running water for four months. She's been collecting water from a neighbour's place, and the taking it home.  The neighbour has now moved, and she just has the water she's already got stored.

She needs a water pipe fixed, and to pay for reconnection. She has a number of other needs to care for herself and her children, but this one is both very important, and urgent.

I think if everyone who reads this blog could give five dollars, we could get Ruby running water again. (If you're also in a terrible financial position, don't make it worse by contributing - only give money if you can.)

Because it's urgent, let's make the cut-off for this really soon.

So send me a fiver if you can, and whatever money I've collected by the 10th of November, I will pass on to Ruby. Let's see what we can achieve in three days.


It's just been pointed out to me that this counts as a fundraising appeal under Queensland law, which means I can't ask you for money for me to give Ruby.  I will give her the $30(Aus)  I've already received, and a gift from myself, and suggest she set up a page on gofundme or something similar.  If she does, I will share the link with you.

I had been thinking in terms of a group of people just getting together to give someone a gift they really needed - but it's clearly not that simple.

To the two people who have already given money thank you so much and I have passed that on to Ruby now.

New update:   Ruby's gofundme campaign.

Wednesday, 7 October 2022

Facebook Lupus Chat

Want to be part of a Facebook discussion of lupus, with some of the leaders in lupus research and treatment in the USA?

Hospital for special surgery: Lupus Chat. In partnership with the Alliance for Lupus Research, SLE Lupus Foundation & the Lupus Institute, get answers to your questions! Wednesday, October 14 5.30-6.30 ET Like HSS and join the conversation on Facebook.

For Australian Eastern Standard Time (Brisbane Time), this is at 7.30am Thursday, 15 October.

(Now that has me thinking, what would it take to organise something similar with Australian researchers and rheumatologists?  Watch this space, when I recover from the adventure of the fleeing feline and have some energy, I'll see if I can manage it.)

Wednesday, 26 August 2022

If I Only Had A Brain

Image: Information brochures and stressball "brain" from Fresh Futures Market.
I picked up information about the NDIS rollout in Queensland.
Today, I went to the Fresh Futures Market at the Ipswich Showgrounds.

It was designed to showcase services in the local area for people with disabilities or mental illnesses.

Much of it was targeted for families with children who had disabilities, and for mental illnesses.

There wasn't a stand that promoted itself specifically for adults with a chronic illness who cope fairly well with most things but could do with a little help around the house and garden at times.

Maybe I was hoping for something too specific. Or maybe, it's available on a state government's internet site here, with extra things like home modifications here.

Perhaps there wasn't any need for the information to be there at all, as I know how to use the internet.

What there was a lot of, was information about preparing for the roll-out of the National Disability Insurance Scheme, which finally comes to Queensland in the middle of next year.

A quick look through tells me I know most of this information from the email newsletter the NDIS sends out, that I signed up for right at the beginning.  If you need information about the NDIS, and how it may or may not apply to you, try, sign up for the newsletter, and see what organisations in your area are helping people prepare for the roll-out.

Keeping a brain on my desk, just in case I need one.
The final thing, I wanted to mention, for those of you who've followed my adventures in brain fog, is that a nice lady at the Anglicare stand gave me a brain.  It's a stressball type thing. My son and I both found it very funny, a brain frequently being the thing I most wish I had. (And to tell the truth, most of the stress in my life comes from my brain not functioning at times when I most need it.)

So now, there's a brain sitting on my desk.  Just in case I ever need one.

Wednesday, 22 July 2022

Howling At The Moon

Painting of tree silhouetted against the full moon.
"Moon" by Iris Carden 2015.
For the past couple of weeks, I've been sleeping about 14 hours a night.  I've still been so tired, I've still napped through the day.

I've had no energy while I've been awake, and have managed to watch (read 'snooze in front of') nine seasons of Supernatural.  That's how many are available on Netflix here in Australia.

In my brief waking moments, it's occurred to me that life with lupus is a bit like an episode of Supernatural.

There's definitely something sinister going on.  There's a big, bad wolf loose, and it's not satisfied with just howling at the moon.

The wolf might be just injuring most of us, but it's also killing lupies. It's vicious, unpredictable, and not a part of most people's normal experience.

Image: Sam and Dean from Supernatural. Text "Not silver, you need methotrexate bullets for this big bad wolf."

There's no miracle cure.  In fact, no non-miraculous cure.

Image: Castiel and Dean from Supernatural.  Text: "Can you cure lupus or not?"

We use medication to ease the effects, but there's no guaranteed way to prevent the wolf attacking at will.

Image: Dean from Supernatural talking on phone. Text: "Lupus? Try a protective circle of prednisone."

We have some symptoms that just don't make sense to anyone.

Image: Sam and Dean from Superatural.  Text: "You're saying they're allergic to sunlight, but they're not vampires?"

And sometimes the symptoms can affect how we feel about ourselves and how we present ourselves to others, as well as our physical health.

Image: Sam and Dean from Supernatural looking horrified.  Text: Oh! That rash is awful!
Unlike Supernatural,  a couple of guys armed with silver bullets, rock salt and holy water won't come to rescue us.  We count on people like our doctors.

Image: Sam? from Supernatural summoning crossroads demon.  Text: I'd sell my soul for a good rheumatologist.

And we rely for support on other lupies, people we know have been to hell and back, and are still working on being their own heroes, and ours.

Image. Sam and Lucifer from Supernatural.  Text: Lupus? Welcome to Hell.
Many of us find our best source of strength in our families and our friends.

image: Sam, Dean, Ellen and Jo from Supernatural.  Text: I'm glad we're not doing this alone.

But when it comes down to it, we frequently have to stand up to the wolf ourselves, and be our own heroes.

I guess this post is what happens when I spend the best part of a fortnight sleeping in front of the same television show. It probably could have been worse (though I'm not sure how.)  Anyway, it's 7.30pm and I'm exhausted.  Good night world.

Saturday, 18 April 2022

What Would You Do?

Ipswich lupies Robyn, Katrina, Kathy, and me,
with Mayor Paul Pisasale.
We had a lovely lupus catch-up in Ipswich today.

I enjoyed having coffee with three other lovely lupies from the Ipswich area, and as a special treat, our local Mayor Paul Pisasale dropped by for a while.

We're very fortunate in Ipswich, our local mayor is interested in pretty much everything that happens here.  He also has family links to lupus, and so understands our situation more than many other people might.

Paul's visit left us with some interesting questions to think about.  He raised the topic of projects we might want to do and whether he could help us get funding.

That threw me for a moment. The Lupus Association Queensland isn't a formal body, we don't have a bank account, and we don't really do anything except get together for coffee.

That's how the parent group in Brisbane still functions, and we've only got together twice here, and so far it's what we've done.

Don't get me wrong.  That's a lot.  Just being with other people who understand the challenges of everyday life, of having a group that makes me feel "normal" is wonderful.

But here we were today, enjoying the feeling of a group that we could be the "normal" members of, when the Mayor himself suggested there could be money available for a worthwhile project.

It got us thinking and talking.

After a few jokes about asking the mayor to pay for our lunch, a very good idea started to take shape.

There's a natural spa not far from Ipswich.  What if we organised a weekend? Lupies could take our sore joints there, and we could get a specialist pain doctor to come and talk to us about pain management.  I thought about it later and thought maybe a physiotherapist could come and help us with exercise.

It's an exciting idea.  I'm sure many other exciting ideas will come up over our next couple of get-togethers.  And then at least one of us will need to find the brain power and energy to act on some of those ideas.

I've often wondered what I would do if I had money for lupus projects, never imagining that I would actually have any because, really, I don't have the energy or cognitive function for fundraising.

Today we were brainstorming, daydreaming, thinking of all the possible or nearly possible things we could do.  It was exciting. Some of it may actually happen.  Our mayor's the kind of person who knows all about how to make things happen, so there's real possibilities here.

So what would you do, if you had a chance of funding something constructive for lupies in your area? What do you think would make a lasting, positive, difference?

Saturday, 28 February 2022

Finding Support

When I was first diagnosed with lupus, I didn't know where to turn for support.
Our get-together today.

That's not unusual.  In some places there are great, well-established support groups, in other places, there isn't.  Support groups have to be started by someone.

I eventually found the Lupus Association of Queensland, not because there was some big, organised entity with that name.  No. It exists because a lovely lupie named Gail couldn't find any support when she was diagnosed, and took the initiative to find some other people in the same situation.  She found Annie, and between them, they have organised informal get-togethers on a fairly regular basis for quite a long time now.

There are a lot of lupies who owe a great debt of gratitude to these two ladies who, despite their own health problems, went out of their way to create a community. Although ALQ has a name that sounds like some big official organisation, it really is a community, a network of lupies who are there for each other on-line, with an occasional get-together.  

As people living further away from Brisbane have joined the group online, it's been spreading.  There have been get-togethers over a bigger area, as other lupies have realised we can continue what Gail and Annie have started. 

I had hoped to be able to keep going to Brisbane for get-togethers after I moved, but have found that the drive is getting far too much for me.  So I offered to organise a get-together locally.  It was a great success, with about eight people there today.  

Now I have to say I have great support from family and friends, but there is something special about being able to spend time with other people who are going through the same things.  It makes a difference to be able to feel like a "normal" member of the group (even if this group's "normal" is a little different to everyone else's.)

We had a great morning, and before we left, we booked the cafe again for six weeks' time. (We weren't going to risk that I would forget to do it.) 

A special thank-you to Wray Organic Cafe and Market in Ipswich, for wonderful food, and great service, and for little extra touches (like putting apples for us in each of the place settings) that made us feel very welcome.

Thank you to Ipswich Mayor Paul Pisasale, who shared the event on his Facebook page, to help us connect with other lupies in the are who might not have already found us online. 

Monday, 16 December 2021


I'm blessed to be surrounded by friends and family who are all incredibly supportive and understanding. From talking with other lupies, I know just how incredibly rare and special it is to have such wonderful people around me.

Little Miss, who lives upstairs from me, made me this lovely orange and purple lupus butterfly for my Christmas tree. (Orange is the lupus awareness colour here in Australia, but in some other countries, they use purple.)

Thursday, 6 June 2022

Lupus Support and Awareness on Social Media

Image of roses with text: Five million people worldwide have lupus. Lupus affects them, their family, their friends, their community, everyone who counts on them for anything. Lupus has a huge impact.
The Lupus Links Page includes links for social media.  It's out-of-date.  It's always going to be out-of-date, because there seems to always be something new, and I just can't keep up.

So here's a chance, if you have a lupus support/awareness page on any social media, please add your link here, so we can share them further.  (When it asks for "name" give the name of your page as you want it to appear.)

This link list will also replace the social media link list on links page.

I'll try to do this on a semi-regular basis, so everyone can discover whatever exciting things are out there that they don't already know about. If you have a lupus-related blog and would like to share this list, click get the html code here .