Wednesday, 7 October 2015

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.)

Tuesday, 6 October 2015

Fleeing Feline Causes Flare

Photo of Percy, white long-haired cat.
Percy, feline escape artist.
I'm not sleeping very well at night time at the moment.

It's not caused by lupus, it's caused by a cat.  But it has results that affect my lupus.

You see, a couple of weeks ago, I bought another cat. He was a rescue cat, and looked lovely, and I felt I just had to give him a home.

That surely couldn't make me sick, right?  After all, I already had a cat and a dog.

Well, Percy turned out to be a challenge.

He's an escape artist, and has no intention of being recaptured.

The first time he escaped, I managed to get him back late that same night.

The second time he escaped - well - it's been over a week and he's still not home.

I leave out food for him, and the food goes.  I bought a cat trap, and the bait out of the trap goes, but the trap is never sprung.

I've been for walks in the evening and caught sight of him.  Family members and neighbours have chased him and been unable to catch him.

A neighbour tells me he spends his day in the stormwater drain, darting down through a grate on the other side of the road.

So I stay awake all night, listening for the sound of his bell, that tells me he's come to the front yard at least to have a meal, even if he won't come home, and if he's too smart for me to catch him.

(I keep experimenting with loading the bait in the trap in different ways, in hopes that I will trick him into tripping the trap, but he's clearly smarter than I am at the moment.)

Then, because I'm exhausted, I'm both in severe pain, and fatigued. My gut symptoms are flaring up and my rashes are worse than usual.  So I guess I could say an innocent little kitty cat is causing a flare.

Pain means it's harder to get to sleep, but when I do get to sleep during the day,  I sleep really soundly and wake up feeling groggy and disoriented.

Theoretically, when I finally get Percy home, I will be able to go to sleep at a reasonable time and eventually get back to "normal". (Or "normal for me".)  I may need some sleeping pills and some heavy-duty pain relief for a couple of nights to reset the pattern, but hopefully all will be good.

Oh, and I'm getting the fence in the back yard cat-proofed.

Thursday, 10 September 2015

Brain Fog Alert

For a while now, my family's been working on assembling a gazebo in our yard.

Everyone's had a go at it at different times, whenever they've had a the time and energy.

Once we put our outdoor furniture in it, it's going to be a great place to go out and read, and enjoy the herb garden I keep trying to win back from the weeds. (Sadly, the weeds put a lot more energy into the battle than I do.)

It's also right next to an existing shade cover over my grand-daughter's play equipment and sand pit.  So it will be a nice place to sit and keep an eye on her as well.

You may notice that as well as insect screens on all sides, it's got a curtain on one corner, that can be moved back or forward to manage sun and shade.

Actually, it came with curtains for all four corners.

When I finally got around to putting up the curtains, there was only one.

Where are the other three?  I've looked in all the logical places, garden sheds, etc.

No-one else has any idea, none have moved them.

The working theory here is that, in a brain fogged state, I put them somewhere that seemed perfectly sensible in the fog, but which no reasonable person would ever consider.

Perhaps, on another "foggy day", I might stumble across them again.  It seems that there's no hope of finding them while clear-headed.

I found them, in the packaging.  I thought I'd already checked there, so maybe I wasn't as clear-headed as I thought when I was searching.

Wednesday, 9 September 2015

Temazapam Dreams

Lately, I've been struggling with fatigue all day.  I've been drinking excess coffee to combat it, so at
Super Grover
night, I'm stuck with being awake feeling every little ache or pain and being aware that I'm going to be super-fatigued again in during the day.

To try to get everything back under control, I've taken temazapam (sleeping pills) for the last two nights.

That means I've slept really soundly during the night, but it also means I've been having really weird dreams.

Last night, I was in the world of one of those really gritty modern super-hero movies.  It should have been a Batman film.  But the superhero was Super Grover from Sesame Street. (The guy who couldn't fly because a kitten was on the end of his cape.)

Did it work?

As I said, I've slept really soundly of a night-time.

During the day?  I'm still exhausted.

Friday, 28 August 2015

Anti-Arthritis Packaging.

Image, packaging of product designed to make it easy to pull weeds, with arrow pointing to a screw holding the packaging to the product..  Text New level of hell in anti-arthritis packaging.I'm having a little rant about an everyday problem suffered not only by lupies, but by everyone with
weak or sore joints in their hands - anti-arthritis packaging.

You know what I mean.

Even people who don't have weak or sore hands struggle with it.

It's the pill bottle for your sore joints, that you can't get the lid off because of your sore joints.

It's the five thousand cable ties  pulled so tight you can't get a pair of scissors into them to cut them.

It's the completely sealed ultra plastic that you need a knife, scissors, scalpel, chainsaw, lightsabre and atomic bomb to open.

Today, I discovered a new level of hell in packaging.

I ordered a gizmo to help me pull weeds out of the garden.  If it works, I hope to be able to, over time, get the mass of weeds out of my herb and rose gardens. It doesn't require bending or much strength to get the weeds out roots and all.

You might think that the manufacturers of such a product would stop to think that the type of people who might want to buy it could be people who can't bend much and maybe don't have a lot of strength - maybe people with arthritis.

If you were selling this and wanted to be kind to your customers, you might want to consider that in your packaging.

You might.  Or then again, you might make the packaging of a plastic and cardboard combination that you can't cut or tear and then screw it, very securely, to the product itself.

Now I have a product I bought to make me a little more independent, and before I can use it, I have to ask my son to open it for me.

Wednesday, 26 August 2015

Anatomy of a Lupie

Image:  Picture of painting model.  Text Anatomy of a Lupie.  With arrows, and handwritten notes (copied in text below)

Time for an anatomy lesson.  This is a Lupie's body, and what each part does.

Let's start from the top of the illustration.

Face - for butterfly rash.

Head - for headaches, brain fog, forgetfulness.

Back and neck - for mystery pains.

Joints - for pain.

Gut - for IBS, intolerances, general discomfort.

Skin - for random rashes.

Hands - for dropping things.

Feet - for tripping over on flat surfaces.

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.

Image: My desk, including brain.
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.

Monday, 24 August 2015

Lupus Fatigue is Cumulative

Image: Dog hiding under a blanket.  Text: I know I could do it last week, but I can't do it again today, because I did something else yesterday.  That's how lupus fatigue works.I've had a hectic week.

There was nothing wrong.  In fact it was really good.  The British section of the family was visiting.

That meant a dinner out in Brisbane one night, a visit to a Gold Coast theme park, a trip to the little local zoo, an evening of playing a card game, Friday night jazz, and a trip to the airport, apart from normal life.

People with lupus will know what all that adds up to:  fatigue getting worse and worse throughout the week.

Some people can get tired after a busy day, have a good night's sleep, and then be back to normal the next morning.

For those of us with chronic illnesses like lupus,  a good night's sleep, even 12 hours or more, is not enough to recover from one tiring day.  So another tiring day on top of not fully recovering from the day before adds up.

A week with lots of "extra" things, no matter how wonderful those things are, can really add up.

Once I'm already fatigued, I can't just do things I normally could do.

So, for example, I had to drive to the Gold Coast for one of our outings.  It's about an hour and a half drive.  On a really good day I could do it, as long as I had a good rest before coming back.

On a day when I started out tired, I had to stop for a break part way.

I'm told that when I texted to tell everyone else I would be a little late because I needed a rest, someone said I was being "overly dramatic."  I must say I was very proud of my sister who heard this and managed to restrain herself from doing anything that could get her charged with assault.

Did it seem dramatic?  Maybe.  After all, on a really good day, I could probably drive that trip.

On the other hand, the place my son and I stopped was a very, very familiar rest stop.  I definitely go there most times I do the trip to the Gold Coast for any reason.  In fact, I can't actually remember going past that point without stopping.

At the end of the week, driving back from dropping my sister at the airport in Brisbane, I took advantage of the emergency stopping bays on the motorway for a brief recovery time. It's the first time I've really paid attention to them, but now I realise they're hardly ever more than half a kilometre apart.  At the end of a long, exhausting week, just knowing that somewhere I can stop and rest is never more than 500m away, is the most reassuring thing.

Yesterday, I slept. Today I woke with a massive lupus headache that just hasn't gone away.  It might take a few more days before I get back to "normal".  (My "normal" may not be the same as someone else's "normal".)

Some time this week, I'm going to try to gather enough energy to go for a massage.

All in all, it was a great week.  The week or so to recover might not be so great, but some things are just worth the cost.

Wednesday, 12 August 2015

Want to Help Medical Research?

I've heard about a couple of studies that lupies may possibly be interested in helping with.

Firstly a local one (well, Brisbane, which is close to local).

Medical Photographer Kara Burns at the Queensland University of Technology is doing a study on medical selfies, and how taking photos of rashes, moles and other oddities could help with patients medical treatment.

If you have an interesting rash to share, Kara would love to hear from you.

You can find out more about her research here: 

If you  are interested in being part of her study, her email is

The other is a study taking place in the USA to test a new lupus nephritis drug.

Chris Lovelace from The Patient Recruiting Agency said:

Aurinia Pharmaceuticals Inc. is developing Voclosporin, an immunosuppressant, for the treatment of lupus nephritis, and is conducting this study to demonstrate its efficacy and safety when taken orally twice daily when compared to placebo.  The study will last about twelve months and consist of about 13 visits to the study clinic during that time.

Volunteers who participate may or may not benefit from taking the study drug, but will be contributing to research that may well help those suffering from lupus nephritis in the future. Also, they will have more tests and clinic assessments through the study than they would normally have in the course of their treatment, which may allow their own doctors to more thoroughly assess their condition.  As I’ve seen you note in your blog, the costs associated with chronic disease management can be dangerously burdensome, so this may be a way for some patients to receive more attention than they would otherwise have.

If you are interested in taking part, you can find further information at:

Lupie Goes to Sleep

Brain: I'm so exhausted I can't fire another synapse.  Righto team.  This is it.  Lungs, a few deep relaxing breaths if you will, muscles, just relax and release everything.  It's all good.

Left Shoulder:  Sorry to interrupt, but I'm hurting.

Brain: Muscles around left shoulder, try tensing and then relaxing.  Better?

Left Shoulder: No.  Hurting. Pain pain pain pain pain.

Brain: Sorry, team, let's try moving to position B.

Lupie rolls over.

Brain: OK lungs a couple of more deep relaxing breaths and...

Left Shoulder: Pain pain pain pain pain.  Did I mention I'm in pain!

Brain: Sorry team, it looks like a trip to the medicine cabinet.

Right Eye: While we're there can we get some eye gel?  My lid feels like it's glued on.

Left Eye: Same here, and I'm all gritty and sore.

Nose: If we're doing all that, can I have a bit of nasal spray?  I'm all blocky, and if I don't get some help I'll be dripping down Throat soon and causing all kinds of trouble.

Brain: OK. Anyone else need anything from the medicine cupboard?  Right, lets go get pain pills, eye gel and nasal spray. Everyone up.

Right Ankle: Ouch

Left Ankle: Ouch

Right Ankle: Ouch

Left Ankle: Ouch

Brain: Are you guys going to do that the whole way to the medicine cupboard!

Right Ankle: Sorry. Ouch!

Left Ankle: Didn't mean to cause a bother. Ouch!

Brain:  You'll get some of the pain pill.

Right Ankle: Didn't want to complain, but Ouch!

Fully medicated, Lupie returns to bed.

Gut: Grumble, rumble, roll! Grrrrrrrrowwwwwwllllllllll! Hey Brain, did you authorise this chicken sandwich from lunchtime?

Brain: Yes but, they didn't have any gluten free options.

Gut:  Gurgle.  Sclurgle. Groan.  If there's nothing gluten free, we don't eat.

Brain: I know you don't like it, but it was time for pills, and we have to have food with pills.

Gut: Rrrrruruuuummmmmbbbbbbbbllllllleeeeee.  Weren't you going to keep an apple in the handbag for times like that?

Brain: Yes, that was the plan.  But I keep forgetting to do it.  I forget lots of things.

Gut: Glurge, gurgle.  Well, I can't process this.  I'm ejecting the lot, now.

Brain:  Brown alert! Brown alert!  Toilet now.  Move team, move!

Right Ankle: Ouch

Left Ankle: Ouch

Right Ankle: Ouch

Left Ankle: Ouch

Right Ankle: Ouch

Left Ankle: Ouch

Right Ankle: Ouch

Left Ankle: Ouch

Lupie makes it to the toilet in time, and half an hour later, much paler and shaking, returns to bed.

Brain:  OK Team, that was close, but we made it.  Gut, are you sure you're OK?

Gut:  A bit wobbly, but OK.  Just be careful at breakfast time.

Brain: Left Shoulder?

Left Shoulder:  It's kind of bearable. Pain scale maybe five out of ten.  Pretty good really.

Brain:  OK anyone else got anything to say?

Left Hip:  Well, I didn't want to mention it, and I know I didn't say anything earlier, but that painkiller hasn't helped me much at all.

Left Thumb: Yeah, I've got a bit of pain going on here as well.

Left Wrist:  Same here.

Right Big Toe:  Yeah, I'm   ....  crunch!  .... Oh no, I'm OK now.  Go ahead.

Brain: So we've got a bit of breakthrough pain.  We've slept through that before, we can do it tonight.  Lungs, deep relaxing breaths, if you will....