Monday, 26 December 2016

Boxing Day Blues
Lupie wakes to find gut is alternately adding logs to a fire in her oesophagus, and inflating her abdomen with bike tyre pump.

Lupie: Why the heartburn? And why does it feel like there's a pile of rocks in my stomach?

Gut: Someone forgot to take domperidone yesterday before eating.  Stomach didn't empty properly, and everything built up to cause a great case of heartburn.

Lupie: So why's my abdomen full of air?

Gut: Don't play dumb.  You know what you drank yesterday.

Lupie: I had two glasses of wine.  It was low alcohol wine.

Gut: It was sparkling wine.  Full of fizzy gas.  Just like all the soft drink you put away.  Where do you think the gas is going to go?

Lupie: Maybe I expected to burp, or pass gas in the other way normal people do.

Gut laughs maniacally.

Lupie: Maybe "expect" is too strong a word.  I hoped.

Gut: And you ate things you shouldn't.

Lupie:  I avoided anything with lactose and gluten.  I was very careful.

Gut: What did you notice about nuts.

Lupie: I'm not allergic to nuts.

Gut: Go on...

Lupie: But I did notice a strange feeling in my mouth when I ate walnuts, that I've never noticed before.

Gut:  Aha! Do you know what that means?

Lupie:  No.

Gut: You'll find out later today, you'll probably manage to get rid of all the gas then, too.

Lupie: Brain, where were you while this was happening?

Brain: Well, I always thought Sarah was Mr Percolate's bodyguard.

Lupie: Brain, you're still dreaming. Wake up.

Brain: Huh?

Lupie: What were you up to yesterday?

Brain: Yesterday? What did we do yesterday? I'm a bit foggy. Let me think. Umm.

Lupie: Well that explains that. I'd better at least take some domperidone now so I can have breakfast.

Feet: Don't you even think about standing.. ouch! ouch! ouch! Owwwwww for the love of God, we're too swollen to walk on!  Sit down, sit, sit sit!!!

Hips: Do not sit down. Do not under any circumstances do anything.

Knees: Don't make us bend, just don't, we can't. Stop it.

Brain: Who's in favour of going back to sleep.

Gut: Not me, I've got plans for today, big plans.

Eyes: We'd be crying now, but we're so dry the tears would burn.

Lupie: So I didn't really do too badly yesterday.  It feel like just another ordinary day today. Coffee to wake up brain, some medication to calm everyone else down, and there's nothing I can't deal with.

Sunday, 25 December 2016

Merry Christmas
Merry Christmas lovely lupies.

Or Happy Hannukah, if that's what you celebrate.

Or have a wonderful day whatever you are or are not celebrating.

I hope you all have a low-pain, low-fatigue day whatever and however you are celebrating.

Let's all try not to over-do things.

Saturday, 17 December 2016

Lupie's Morning Routine

Wake up.  I'm feeling terrible. What to do now?

Analysis. Why do I feel bad?

  1. My eyes are sore dry, and feel like they've been rubbed down with sandpaper.
  2. My mouth's also dry.
  3. My feet and legs are sore and swollen, and it hurts to stand.
  4. Random joints hurt.
  5. Exhaustion.  I feel like I haven't slept in a month.
  6. Overheated.  
  7. Gut feels uncomfortable.
Plan.  What can I do about each of these things?
  1. Dry eyes: Use my eye gel.
  2. Dry mouth:  Rinse with dry mouth mouthwash.
  3. Feet and legs:  Try the tens machine.  If that fails take a fluid tablet.
  4. Joint pain: Tens machine again, if that fails, anti-inflammatory gel on the problem joints, failing that, pain pill.
  5. Exhaustion: Coffee.  Lots of strong coffee, and my vitamin B12 supplement.
  6. Overheated: Turn on air conditioner, and put hair up in ponytail to get it off the back of my neck.
  7. Gut: Take my fibre supplement.
Action. What I do.
  1. Put in eye gel.
  2. Wash mouth with dry mouth mouthwash.
  3. Have coffee and try to remember what else I planned to do.
  4. Go back to bed for another hour because I feel horrible.

Thursday, 15 December 2016

The Social Side of Lupus Life

I bake nice things, and have good coffee.
Hello Lovely Lupies,

I'm back from my little break in time for Christmas.  I really did just need some blog-free space to clear my head.

A friend here for morning tea, said something about his social life being coming here for morning tea.

I said, "Well my social life consists of baking nice things to lure people to come here and talk to me."

I was only half-joking.

I bake when I have energy, mostly because baking is one of the things I enjoy doing, and because it's one way to get gluten free food that tastes nice.  But that does mean I usually have something nice on hand when someone has time to drop by for a coffee.

I find having people come to visit me is much easier than going out, especially in the summer heat. When they leave, I can clean up straight away, or have a rest first.  I don't have to immediately drive home from wherever.

So lovely lupies, with Christmas coming up, and it being the season for socialising, how do you handle it?  Do you just miss out on catching up with friends? Do you invite them to come to you?  Do you find the energy to go out?

Wednesday, 23 November 2016

Vote for your favourite health blogger

Healthline's running a competition for the best health blogs this year.

You can vote for your favourite health blogs here:

If you want to vote for Sometimes, it is Lupus,  you'll find it listed as "Sometimes It's Lupus".

You might find some other blogs in the list that you'd like to read.

Saturday, 29 October 2016

Taking a break

I'm taking a break from blogging for a while; but there's five years of posts here, so hopefully, you can still find something interesting to read.

Friday, 21 October 2016

Food as Medicine Short Course

Do you want help to sort out fact from fiction when it comes to nutrition and health?

Dieticians at Monash University are running a free on-line nutrition course, called "Food as Medicine."

It's a course designed for anyone with an interest in food, nutrition and health, and run by actual, qualified dieticians, not someone who is trying to market the latest "superfood" or supplement.

It starts this coming Monday, so if you're going to sign up, be quick.

Further information:

Wednesday, 19 October 2016

My Memory's Getting ... What Was I Saying?
I had to go to the GP for a new referral to my gerontologist (not for my age, for my memory.)

I made the appointment, thinking, "I don't really need this, my memory's been getting much better lately."

In fact, I'd been telling myself I had been feeling really good, generally, and that everything was getting better.

I walked the dog every day for a week. I convinced myself that the exercise was good for me, and I was actually feeling better in all ways.

Then I got the phone call from the doctor's office asking why I'd missed my appointment.  I'd forgotten to go.

Suddenly, I realised just how exhausted I actually was.  I looked at my pill sorter, and noticed the number of times during the week I'd forgotten to take my meds.

I went to bed.  I stayed there for most of the week, and and probably not yet quite back to where I was before I decided to exercise every day.

My son's been walking the dog. This has made the dog much happier because he walks further and faster than I do.

The lesson from all this is that yes, I do have limits, and constantly pushing past them isn't going to make them go away, it's just going to make the crash worse when it comes. It seems I had learned that lesson a few times before, but I've kept forgetting it.

The other lesson is that, yes, I do need that appointment for my memory.

Saturday, 8 October 2016

It's All In The Jeans
I've gone down a jeans size!

How did this amazing thing happen, when I've been unsuccessfully battling weight for years?

A while ago, I talked my rheumatologist into letting me try a lower dose of prednisone.

He told me that the 5mg dose I was on shouldn't be enough to make me gain weight. However, he was finally persuaded to let me gradually reduce to 3mg per day.

It doesn't seem like a lot, does it?

I knew it would mean extra pain, and I was prepared for that.  I find I'm using more meloxicam (anti-inflammatory tablets) and anti-inflammatory gels and rubs. With that help, I'm managing the pain.

But I stuck to Calorie King, which regular readers know I've been doing for years, and slowly, something is starting to change.

My weight still fluctuates wildly from day to day because of my problem with retaining fluid, so I really can't reliably tell how much I've lost, but my jeans had been getting looser and looser.

About a week ago, I found I could pull them on without undoing them.

Today, I found an older, smaller pair.  They're loose.

So poo to you, prednisone.  For once, I win.

Saturday, 10 September 2016

Not Going Back
I was walking around the Ipswich Mall today, and discovered a lovely little shop I'd never seen before.

It sold craft items, which looked lovely.

I asked, and was told that yes, they were all locally made.

The shop assistant said local craftspeople left items with them on consignment.

Seeing an opportunity, I asked if they could take my books on consignment.  She wasn't sure and said to come and see the boss during the week.

She asked my name, and was sure she recognised it from somewhere.  I said if she followed the mayor on Facebook, she might have seen him sharing lupus catch-ups I'd organised.

That was a mistake.

She launched into a long story of how she'd cured someone's lupus.  The woman had a terrible rash, and these products a Malaysian nurse had told her about fixed it right up. The shop assistant herself had been taking these treatments and she hadn't seen a doctor for 20 years, even though she used to sometimes get headaches.  I really should think about trying it.

Regular readers know what I think of unsolicited and unqualified medical advice.  (In short, if I didn't ask you and you're not my doctor, I don't want medical advice from you.)

I could have explained the rash isn't the bit of lupus that can kill us.  I could have pointed out that there is no known cure.  I could have done any number of things.

What I did was smile nicely, leave, and decide to never go back there. (Not even if they could sell books for me.)

Wednesday, 31 August 2016

Trying Not To Be a Wonky Donkey

Hee-haw! I'm a donkey.
Lately, my "normal" bed time is 7pm.  Add to that, the issues with nausea I've been having, going out at night is not something I really do much of.

But last night, I did go out.  I even drove.

I went to an function for all the Toastmasters' clubs in the area.  There was a nursery rhyme theme, and my club went as Old McDonald's Farm.

I made animal ears for team members as our costumes.  Because I had a couple of week's notice, the sewing and craft work was easy to do in time.  

It was actually going out at night time that I was afraid might go all wrong.

I went as a donkey.  I was very drugged up on anti-nausea medications because I was very afraid of being a seriously wonky donkey.

I also slept for several hours through the day, and had a similar nap today as well for recovery.

Despite my fear that I'd end up having to rush out and throw up through the evening, or be unable to handle driving, it all worked out well, and I had a good night.

The days of just going and doing things on impulse are long gone.  But with a bit of care and preparation, I can still make the most of an opportunity to go out.

Thursday, 25 August 2016

I'm Adapting
Earlier in the month, I posted about an issue I was having with constant vomiting.  My GP added a number of anti-nausea drugs into my cocktail.

Then I started having abdominal pains, and she added a laxative.  It helped.

So now, I've got lots of drugs to keep everything moving in the right direction.

But I still have an issue with nausea.

Yep,  the medication's helped, but the problem hasn't gone away.

It's like morning sickness (and I am definitely not pregnant.)

With my first child, I lost weight in the first few months of pregnancy because of morning sickness, so when I say it feels like morning sickness, I mean it's pretty awful.

For the first few days of this, I lived on Ensure (it's the only meal replacement I could find that appeared from the ingredients list to be free from lactose and gluten.)

After a while, I added some solid food back, in the middle of the day.  A couple of times I tried eating in the evening as well, but found I was really sick while I was trying to sleep.

Today, I tried eating breakfast for the first time since this all started.  It was a big mistake, and I won't do that again.

What's causing the problem?  I have no idea, and my GP doesn't seem to have any idea, except that I have always had gut problems.  This just seems to be my normal reflux and irritable bowel just asserting themselves quite a bit more than usual.

Right now, I'm just trying to be very kind to my gut, being very careful about lactose and gluten, trying not to eat too much when I eat, and being careful to eat plenty of fibre.

One thing that lupies learn to do very well is to adapt to whatever lupus throws at us.

I'm adapting.

Related post: Keeping the Bucket Close

Tuesday, 23 August 2016

What AUST R and AUST L on your Medicines Mean.

Image: section of two labels one with an AUST R number and one with and AUST L number.  Text: Pharmaceuticals in Australia will be labelled either AUST R or AUST L.A while ago, I did a post about the Therapeutic Goods Administration, and how it assesses the safety of therapeutic Goods.

Today, I want to talk a little more about the work of the TGA.

Any legally-available medications in Australia, will have somewhere on their packages either AUST R with a number or AUST L with a number.

You can take the number and search the TGA website to get details of the medication, and its makers and suppliers.

So what do these mean?

AUST R means the product is registered with the TGA.  This category includes all prescription medications and a lot of over-the-counter medications, and therapeutic devices.  These are drugs that can be dangerous if used incorrectly, and the manufacturers have had to prove to the TGA that the drugs work for the purpose they're intended for, and that the benefit of using them outweighs the risks involved. Extensive independent studies have to be produced to support the case for having a product registered.

AUST L means the product is listed with the TGA.  Listed products have to be made up of ingredients that have been proven to be basically harmless.  The TGA doesn't require manufacturers to provide evidence of what the drugs do in the particular combination of ingredients.  There is a caveats with AUST L being completely harmless - some things that on their own are safe, can react in bad ways with other things (eg your other medications). It's important to make sure you talk with your doctor or pharmacist about everything you're taking, in case two things really are dangerous together.  AUST L medications are not allowed to claim to be appropriate to treat major health issues (eg lupus, migraine, or anything else you would see a doctor for, unless it's an obvious thing, like a vitamin to treat a vitamin deficiency.)

When your doctor prescribes medication to treat lupus, they will be AUST R medications.

When you get a pain reliever or an antihistamine over the counter from your pharmacist, that will be an AUST R medication.

If your blood tests show you're deficient in a vitamin or mineral, eg B12 or calcium, your doctor might advise you to take those.  They will be AUST L medications.  Vitamins and minerals can be great for treating vitamin and mineral deficiencies.

You will probably find a mix of both AUST R and AUST L medications in your medicine drawer or cupboard.

If you find an AUST L medication that's listed as curing or treating lupus, or cancer, etc, contact the TGA - because that's going way beyond what they're allowed to say and way beyond what they are proven to do.

If you find a "medication" that doesn't have either AUST R or AUST L on it, inform the TGA, and do not under any circumstances use the product. It will be illegal, unproven, and possibly unsafe.

Reference: Therapeutic Goods Administration - Registered and Listed Medicines
Related Post: Assessing the Safety of Therapeutic Goods

Sunday, 21 August 2016

No Fuss Nutrition: Salsa Plus

Salsa plus with rice.
I love to cook, really I do.  But I don't always have the energy to cook a proper meal. So I keep looking for ways to get healthy and tasty food, with minimal effort.

One of the ingredients I really love is canned beans.  They have all the nutrition of dried beans, but without the preparation work involved in pre-soaking.

That brings me to my Salsa Plus.  What's that you say?  Well it's a simple mix of a drained and washed can of four bean mix or five bean mix, a drained can of corn kernels, and a jar of tomato salsa (I use mild - but go as spicy as you like.) Just put them all in a dish and stir them together. It will last in a sealed container in the fridge for a few days.

I started making this to go with corn chips (obvious choice), but I discovered that it's also great mixed through rice, or served with a garden salad. It's quick, cheap, tasty, healthy, and requires very little effort or planning - pretty much all the boxes ticked for me.

Saturday, 20 August 2016

Murder, Mayhem and Brain Fog.

I wrote the following speech for Toastmasters. It was so well accepted on the first attempt that people suggested I practice it to enter in the Club Competition.

I think I did a fairly good job of writing it.  My problem is, trying to remember it.  For competition, I'm really going to need to be able to present my speech without notes.

This is my big problem.  No matter how many times I read this, no matter how many times I say it all, I just don't seem to be able to get it to stay inside my brain.   

Brain fog strikes again.

Anyone who has tips on learning a speech despite brain fog, please let me know.

Midsomer Mayhem

Madam/Mr Toastmaster, ladies and gentlemen
"It will always be investigated by a detective named 'Barnaby' "

Murder, blackmail, dark secrets and sinister intents, with a charming backdrop of verdant forests, quality china tea sets and perfect gardens is the basis of English village life.

I know this, because I watch Midsomer Murders.

Using this television program as source material, I can tell you everything anyone could ever want to know about life in quaint English villages with names like Badger’s Drift.

Ah Badger’s Drift.  It sounds like badgers build little rafts to lie on and just drift lazily down the river. Actually, they drift because they’re dead.

But I’m not here to talk about badgers.  I want to talk about the lives of humans in these villages, and to tell you how you could survive visiting one.

In a typical English village, everyone, from the lord of the manor to the pig farmer knows each other. Often they’re related (frequently secretly as the result of illegitimate affairs.) If you live in one of these villages, you will never know if your boyfriend or girlfriend is also your brother or sister. (Or, perhaps, you will know, and simply choose to have an incestuous relationship, but then you will have to kill everyone who finds out about it.)

On visiting, you will find that most villages have no public housing, or if they do, the public housing estate will be adjacent an exclusive private girls’ school, which has a body in the hay shed. It’s one of the ancient traditions of English villages that private schools must have hay sheds complete with bodies.

The most common cause of death in the English village is murder.  In fact, there are at least three murders per week. These will always be investigated by a police officer named Barnaby. This is because the British police force is a dynastic organisation.  When a senior officer retires a relative with the same surname will always be appointed in his place.

People in villages often look familiar.  So for example, you might be certain that the man living in the gypsy caravan in one village looks exactly the same as the lord of the manor in another village. Someone being interviewed by the police this week, might look identical to someone who was murdered in a different village last year.  Let me remind you of my earlier point, that most of these people are related, and many of them do not even know that they are related. You will find strong familial resemblances everywhere.

The most common pastime enjoyed by village residents is killing each other. Other favoured activities include incest, affairs, blackmail, extortion and disputes over land ownership or right-of-access.

There are lots of community activities; fetes and festivals, garden shows, boat races  and community theatre.  All of these are superficially charming, but they exist to provide opportunities to kill someone.

So how can you survive your visit to these picturesque villages?  I would recommend wearing Kevlar at all times. Kevlar will help protect you  from being bullets, knives and arrows.

 It’s also important to never eat or drink anything.  Remember, you will be surrounded by people who are expert at poisoning, whether with wild grown herbs and mushrooms, or common household items.

Never go anywhere alone, or with just one other person, even if that one person is someone you trust.  Any time there aren’t at least three people watching you closely, you are likely to die.  Of course, you could still die in front of any number of witnesses.

Do not go to a community event. I know they sound lovely and potentially fun, but a village never holds any event without someone being killed.  You do not want to be that someone.

Beware of people with hypodermic needles.  Horse tranquillisers are commonly used to subdue people prior to murdering them.

Never say or do anything to offend anyone, or act in a way that might hint that you know their dark secret.  Everyone in the village will have a dark secret and will be willing to kill to keep it secret.

In case all of this fails, take out travel insurance and funeral insurance before you go, and have your name, and your next-of-kin’s contact details tattooed on your body.  (Have the tattoo somewhere central – arms and legs can go astray.)

All in all, English villages like those portrayed in Midsomer Murders have a beautiful environment, a fascinating history and social structure, and an intriguing air of something not-quite-right.

If you go there, and survive, you could have the most exciting time of your life.

Friday, 19 August 2016

Participation Award

Image: flowers.  Text: To all the lovely lupies who coaxed sore, tire,d complaining bodies out  of bed and took part in today; you're awesome!Have you ever heard people complain about little kids getting "participation awards" when they don't win competitions?

They'll say things like: "I never got an award for just turning up."

Well, I never got an award for just turning up either, and I really think some days I deserve one!

I think all lupies have those days, when just getting out of bed is an award-winning performance.

We all have times when if we manage to smile and say, "I'm fine," through all the physical pain we're in, we should get a Logie.

Some days, we deserve Olympic Gold, for walking down our own hallway.

Some days, we should get an ARIA award for opening our mouths and not screaming in pain.

Some days, the artwork involved in make-up to change a rash-covered death-mask into a "normal" face is deserving of an Archibald.

If you coaxed a sore, tired, complaining body out of bed this morning, you deserve an award.

If you took part in today in any way despite pain, fatigue, brain fog, depression and rashes, you should get a round of applause.

If you did something to care for someone else today, despite being barely able to care for yourself, you should be Australian of the Year.

Pat yourself on the back (or get someone else to do it - arthritic shoulders don't like to reach like that.) You deserve all the awards.

Hip! Hip! (The good hip, not the bad one.) Hooray for you!

You are amazing.  Don't ever forget it.

(Note: for overseas readers - a Logie is an acting award, an ARIA award is a music award, and the Archibald is a portrait-painting prize.)

Thursday, 18 August 2016

No-fuss Nutrition: Minestrone in Minutes

Minestrone, made with minimal
If you're like me, you really want healthy home-cooked meals. You just don't have enough energy to cook them.

This minestrone is one of my favourite quick-fix-meals.  It takes very little effort, but is still healthy and tasty.

The first thing to remember is you need a big saucepan.  The second thing to remember is there's no set amounts of things.  You can put in as much or as little of each ingredient as you like.

Canned four-bean mix or five bean mix, drained and rinsed. (It's important to rinse.  The liquid they're canned in tastes bad and can give you a tummy pain.)
A peeled and chopped up onion (this is the most work in the whole recipe, so leave it our if you're really short on energy.)
A can of crushed tomatoes.
Some tomato paste.
Vegetable stock powder or cubes or the more expensive liquid stuff if you think it's any better.
Frozen mixed vegetables - the ones cut into small pieces.
Pasta (I use gluten free) or rice.
Herbs: I used garlic, black pepper, basil, oregano, chives and parsley.
Some dried red lentils, washed.

Put it all in the pot, bring to the boil and simmer for 10 to 15 minutes until the pasta or rice is tender. (If you use whole grain rice, it might take 20 minutes.)

Leftovers can be refrigerated and reheated.

Wednesday, 17 August 2016

Oh Poo!

Image National Bowel Cancer Screening Program KitI turned 50 this year.

In Australia, that's a significant milestone.

It means I can now send the government my poo, and not get in trouble for it.

I don't know how you feel about politics, but I often think having a pile of poo in Parliament House would not be much different to what we have. So I'm eager to contribute my fair share to the pile.

But apart from the delight in knowing that one can give the government poo, there's a serious side to this rite of passage.

Australians 50 and over get a request from the government to provide a sample of our poo, to test for bowel cancer.  I know lupus is quite enough and I don't need any cancers as well, but bowel cancer is very common among Australians.  (That probably says we eat too much junk food and too little fibre.)

My test pack arrived today.

Tubes and collection equipment for samples
It seems a fairly simple process.  Use the special paper to catch poo, a sample pick thing to pick it up and put it in a dated sealed test tube.  Refrigerate it, and repeat with another set of collection equipment a day or so later. Then put both samples, with a form giving my personal details, in the addressed envelope and send it away.

Clearly, it's not the most dignified of things to do.  On the other hand, if it catches bowel cancer early, it might saves some of the very many indignities of bowel cancer treatment. And all it will cost me is a bit of time, and a bit of politics, er, I mean, poo.

Tuesday, 16 August 2016

Energy Level Critical

Image: sleeping kangaroo.  Text: It's all fun and games, until you get to 3pm and don't have energy for the rest of the day.I've been doing things lately.

When I say "doing things", I don't mean things like running marathons. (That's what my sister does for fun.)

I mean things like going to the shops, or sewing, or giving a speech at Toastmasters, or spending 15 minutes gardening.

The trouble with doing things, is that it takes energy.

My brain says, "What a great day to get something done."

My body says, "Fine, but when do we sleep?"

When we sleep has been about 4.30pm quite often lately.  My son wakes me up about 7pm for pills, and I go back to sleep until morning.

Today, I've reached 2.30pm and I'm wondering if I'll make it to 4.30.  But hey, I've got some things done.  If you visited me you might not notice what those things were, but let me assure you some things have definitely been done.

Low Energy Gardening

I like the idea of growing my own food.
My little "lotsa lemons" miniature
lemon tree, happily growing with
lots of mulch.

What doesn't sit very well with that idea is that I have a bad habit of killing plants, and that gardening often takes more effort than I can manage.

So here's some things I'm trying that seem to be succeeding, with minimal effort.

  • I have some baby fruit trees in the back yard that I haven't managed to kill yet.  The main thing I can do to help them is give them lots of mulch.  Mulch helps stop water evaporating, so the trees get water for longer if it rains or if I actually get the energy together to water them. It keeps the weeds down around the baby trees, and as it decomposes it provides food for the young trees. Miniature fruit trees take less space, so eventually I'll have a lot of varieties of fruit growing in my planned orchard space of the back yard.
  • Herbs and strawberries theoretically grow in the ground.  I tend to kill them when I put them in the ground.  Far better, I've found is to put them in water-saving pots (the ones with a reservoir in the bottom to slow water plants continuously.) Rain refills the pots, or if it hasn't rained for a while, watering refills them. The plants only need to be watered every week or so. Then I only need to give them a small amount of slow-release fertiliser every couple of months. Even I can manage that.
  • Passionfruit vines seem to be able to grow anywhere and survive anything.  They just need a fence or something else to climb on.  Mine has climbed a tree and is fruiting three metres off the ground, but it's growing.
  • I'm trying something new (well new for me, but a very old idea) with potatoes.  Those potatoes that have sprouted and started to grow in the kitchen, I've thrown out on the ground, and got my son to put a bale of hay (straw is recommended) on top of them.  Once they grow through that, a second bale should go on top.  They should grow through that as well. When the plant dies off, it's time to break open the hay bales and just pick the potatoes out - no digging.  I've been told that the twine on the bales can break, so it's best to put some wire around the bales until it's time to break them up.
  • One day I'm going to work out how to grow a vegetable garden without digging and constant attention.  (If you know the secret, let me know. I'd love fresh home-grown veggies.)

Sunday, 14 August 2016

Shameless Self-Promotion

Here I am reading "Spring Cleaning" one of the short stories in my new book Patchwork.

Friday, 12 August 2016

Wego Health Activist Awards
It's on again.

Time to nominate your favourite on-line health activists for the Wego Health Activist Awards.

Now's the chance lovely lupies: let's try to get recognition for all the amazing lupus advocates out there.  Think of people who have Facebook pages, blogs, Pinterest pages, etc.  Everyone who tries to get information and understanding about our condition out there.

Please nominate now, all your favourite lupus advocates.  And please let me know who you nominated - there might be some great resources out there I haven't caught up with yet.

Nominations are here:

Sunday, 7 August 2016

Lupus Headache

Image: sleeping kangaroo Text: Can't function. Lupus headache.Now that I've stopped throwing up, what comes next?

A lupus headache of course!

Going back to bed now, to let my head explode in peace.

I hope all you lovely lupies out there are feeling better than me today.

Saturday, 6 August 2016

My Dream

Image: Orange flowers.  Text: I have a dream that one day ... uh oh. Brain fog.You might have noticed I've added a "buy me a coffee" link on the right hand side of the blog. That's not to make you feel guilty if you read the blog all the time and don't have money to spare.  It's also not meant to be a limiter if you read this blog and would love to give me heaps of money you do have spare.  It's just another way to try to make a little bit out of the blog.

You see I have a dream.  It's not as grand or exciting as the dream of the person who first said that.  In fact it probably doesn't come close. But it's my dream and it's special to me.

My dream is that one day my writing will earn me enough money to be able to support myself, and not need a government pension.  Further, I dream of being able to help other people with lupus who are in need, and to help support lupus researchers.

I'm a long way from reaching my dream.  But I'm also only 50.  I've probably got a few years yet to get there (depending on what lupus has planned). Maybe one day I will feel that I'm doing something worthwhile to support myself and help others.

(I also dream that one day the baby fruit trees in the back yard will help feed my family and me.  So far, that's looking like a distant dream as well.)

Wednesday, 3 August 2016

Keeping the Bucket Close
After a week of vomiting constantly, I am now taking an extra three anti-nausea drugs, and the doctor has said I can drop by up to twice a day for an injection of another anti-nausea drug.

I've spent the past week on lying on the couch, bucket beside me, marathoning Pretty Little Liars.  If you haven't seen it imagine a soap opera with a body count, or a teen slasher film extended into a very long and endlessly complicated television series.

It was mindless stuff, which is usually exactly what I need when I'm too sick to care about anything in real life.

When I started to come out of the worst of this, I took a look online to see if there were any more series after the six I'd seen on Netflix.

That's when I discovered that one of the actors, Ian Harding, (Ezra Fitz the teacher who has an inappropriate relationship with a student through most of high school),  is involved with the Lupus Foundation of America (but not in any inappropriate way).

Apparently his mum's a lupie, too. Hopefully, she didn't throw up the whole time she watched the show.

Lupies: we're everywhere.

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.)

Saturday, 25 June 2016

DSP Approvals Down to Fifteen Percent

Before the most recent changes to the Disability Support Pension, people with lupus already struggled to get Centrelink to understand the nature of our condition.

Many were rejected.  We can turn up for the assessment looking perfectly healthy.  It makes it look like our doctors exaggerating on our medical reports.

I have to say, I'm one of the lucky ones.  The assessor saw me on a really bad day, and I could barely stand. I didn't have much trouble.  It probably also helped that my superannuation fund had already decided to put me on its disability pension.

A number of lupies I know, didn't get off so well.  Most have been forced to try to work even though they really physically can't a lot of the time.

What's the result of the new rules been? The vast majority of people applying for a disability support pension have been rejected.  Since the current government's new changes have come in, only 15 percent of applications for DSP have been approved.

That's an absolute disaster for people with invisible illnesses/disabilities.

What can we do?

Well, we can vote on Saturday. Not that that will guarantee anything, but it can give some hope that change can happen.

Apart from that, if you've been rejected for the DSP, appeal. Get  your doctor to support you.  Go visit your federal member and insist they help you.  If your doctor backed you for a DSP application, they'll back you for an appeal.  If all else fails, go to your local newspaper and tell your story. I know fatigue's a big issue, but use every bit of energy you have to demand some attention.  Just don't ever give up. 

There's also the option to check if you are eligible for a different Centrelink Payment, such as Sickness Allowance.

And for those of us who are not currently applying for the DSP - it's a good idea to let our politicians know that we're sick of disabled people being demonised as a "burden on the economy."  We have a DSP for a reason, and it should be given to all the people who really need it.

(And if we're talking "burdens on the economy" shouldn't politicians get their super under the same conditions as everyone else gets ours? Pot-kettle anyone?)

Wednesday, 15 June 2016

Even More Adventures of Lupie in the Fog

Image: brain scan.  Text: Not crazy, just lupie!The trouble with brain fog is that sometimes I think what I'm doing is perfectly sensible.

So this morning I made coffee.  Quite a sensible thing to do.

I cleaned the coffee maker, took out the basket for the ground coffee, emptied it, washed it out and left it on the side of the sink.

I washed out the water jug, and used it to refill the machine then sat it on the hot plate.

I poured coffee beans into the grinder attachment of the Kenwood Chef, and ground the beans nicely.

Then I tipped the ground beans into the coffee maker.  They went straight through, over the jug, and spread all over the bench.

That's when I saw the basket for the coffee grounds, still sitting on the side of the sink.

I've now cleared enough of the debris to be able to start again, but I will need coffee before I can think clearly enough to clean the kitchen properly.

This is what lupus does.  I am intelligent woman.  I have a couple of degrees to prove it, and I have had a couple of careers that required a bit of brainpower, as well as having raised kids.  But now... now I can't be trusted to make coffee without supervision.

Thursday, 9 June 2016

Ask a Politician, Update

A little while ago, I asked you for questions you'd like to ask the various parties in the election.

I've sent the Liberals, Labor, Nationals and Greens the following email:

Hello, my name's Iris Carden and I write the blog

I have a series of questions of interest to people with chronic illnesses, which I am providing to all the major political parties. I would like to be able to publish everyone's answers to these questions together to allow readers to compare easily.  Please tell me only what your party's position is, not what you believe is wrong with another party's position.

Would someone in your media department please get back to me with your party's responses by the 25th of June?

1. If  you were in government, what would the future of Medicare be? (Ie, would it be privatized? Would the freeze on rebates continue?)
2. Quite a number of people with lupus have been unable to gain Disability Pensions, despite their doctors being insistent that they should stop work. What would your government's position be on Disability Support Pension for people with chronic illness? (Particularly episodic illnesses, where the patient can appear fine one day, and be crippled with pain, fatigue, and mental confusion the next?)
3. Does your party support the idea of a renewed Chronic Illness Dental Scheme?
4. Do you plan any changes to the Pharmaceutical Benefits Scheme?
5. Is there any other message you would like to give to Australians living with serious chronic illnesses?

Thank you for your attention to this matter, I realize a blog will not rate as highly in your priorities as a major news outlet, but the community I write for is very interested in these matters (our lives, in fact, depend on them.)

Grace and peace
Iris Carden

Would you like to know what I've had back so far?  Everyone except the Nationals sent me an email acknowledging receipt of my email.  Labor has sent a further three emails asking for donations and inviting me to volunteer for them.

That's it so far.

I wonder if any of them will take the time to give me an answer to the questions?

10//6/16  That's now four emails from Labor asking me to donate or volunteer.
11/6/16 Now seven emails from Labor asking me to donate or volunteer.  No emails from any party answering my questions.
13/6/16 Now nine emails from Labor asking for money or work.  No emails from any party answering questions.
18/6/16 I can't be bothered counting any more.  Labor has continued sending me two emails a day (and an extra on one day when they asked permission to ring me about how I could volunteer.)  Still no answers to the actual questions.  

Tuesday, 7 June 2016

Be Careful with Methotrexate

Image: bottle of methotrexate.  Text: Since 2000, incorrect doses of methotrexate have been linked to eight deaths.* Be careful to take medication exactly as directed. * Source might have seen the news today that methotrexate has been linked to eight deaths since 2000.

That's a scary piece of information.

Actually, I remember when I started on methotrexate and read the patient information sheet that came with it.  It's all scary information.

If you read the actual news reports, however, the problem wasn't just that patients were taking methotrexate, but that they were taking it incorrectly.  (For example, taking it every day instead of one day per week.)

So the lesson for the rest of this from these tragic deaths is simple.  The drugs we take for lupus can be very dangerous.  Be careful with medication, and take it exactly as directed by your doctor.

Methotrexate, for example, is usually meant to only be taken once a week, so if you took it daily you would get a much higher dose than you need, and a potentially life-saving medication could end up being a life-threatening poison.

Methotrexate, however is not the only drug that can be dangerous.  Be sure you clearly understand your doctor's instructions on all your medications, even non-prescription ones.  If you have questions or concerns, ask, don't just guess. And don't trust Dr Internet to know.

Be safe lovely lupies.  Too many of us have been dying lately.

Saturday, 4 June 2016

15 Lupus Blogs You Should be Reading in 2016

Health Listed has come up with a list of 15 Lupus blogs they think you should be reading.

You can find out who the other 14 are here.

Tuesday, 31 May 2016

Not Just Annoying

I've been struggling a lot with dry eyes and dry mouth.

I use polygel eye gel for my eyes - an optometrist put me on to it ages ago.  It doesn't fix it, but it does make it bearable, and I've never found anything any better.

For my mouth, I had been chewing my way through endless sugar-free gum, because I'd read somewhere that stimulates saliva production.  It helped a little, but not all that much.

Although my mouth was getting sore a lot of the time, I treated this just as a nuisance, rather than something serious.

Then I read a post about dry mouth by Dr Donald Thomas. (The rheumatologist who wrote The Lupus Encyclopaedia.)  Dry mouth can cause all kinds of dental problems, including loss of teeth. It's actually a serious problem.

I'm kind of attached to my teeth (well not the wisdom teeth, we parted company on unfriendly terms a while ago.) So, I've started taking my mouth a little more seriously.

I bought a moisturising toothpaste and mouth wash.  I was a bit concerned before I used them, because I've been using "sensitive" toothpaste for years because my teeth hurt. It was with great pleasure I discovered the moisturising toothpaste also helped with the pain in my teeth.

On Monday, I have my rheumatologist appointment.  On top of my list now is my dry mouth and dry eye issues.

Thursday, 26 May 2016

What would you ask a politician?

OK Lovely lupies, we have a Federal Election coming up on the second of July (oh you knew that?)

If you could ask any questions of the main political parties in the lead-up to the election, what would they be?  (I checked the AEC's list of current political parties and there's no way I'm going to try to contact all 20 or 30 of them.)

So here's the deal:

If you lovely lupies give me questions or issues you want to know what the parties plan to do if they get control, I will forward a list of questions to the major parties. (Every party would receive exactly the same questions, so that would hopefully help you compare answers.)

If they send me answers, I'll publish them ahead of the elections.

There's a couple of big "ifs" there.

So my question for you at the moment is, what questions do you have for them?

Issues I think might be of interest to people with chronic illness might include Medicare, the Pharmaceutical Benefit Scheme, the Disability Support Pension, just as a starting point to get you thinking.

You can give me your questions in the comments here or on social media.

Dr Irwin Lim - A Blogging Rheumatologist Worth Following.

I love that there are rheumatologists who blog, and share useful information with people like me who want to stay well informed about our condition. Taking time out of a busy practice to keep us all informed is a pretty awesome thing to do.

One of the rheumatologists who has a blog I find well worth following is Dr Irwin Lim.  You can find his blog here

The following article is reposted from his blog (original is here) about his appearance on the cover of a magazine for Australian doctors.

BJC Health in Best Practice magazine.

I feature in an article in Best Practice magazine, produced by BOQ Specialist, a finance company which deals with the health industry. BJC Health funded our recent expansions at our Chatswood and Parramatta clinics with BOQ Specialist's help.

They then kindly profiled our clinic and yours truly.

Given my mission this year is to keep sharing the narrative of our clinic, why we do what we do, and why we aim to keep improving, I thought I'd share with you the article:

'From the start rheumatologist Dr Irwin Lim was in no doubt as to the type of practice he wanted to lead. He didn't have to look far to find others willing to support his vision.

It began with a broad mind and a grand plan. It resulted in a unique arthritis and rheumatology centre that operates across three separate Sydney locations, with over 40 staff and servicing a 50,000-strong client base.

Father-of-three Dr Irwin Lim completed his rheumatology training at Sydney’s Westmead Hospital in early 2004, joining Parramatta’s two-year-old The Bone and Joint Clinic shortly after.  The clinic, which had been started by another rheumatologist and exercise physiologist, involved a group of individuals working towards a team approach in the treatment of musculoskeletal disease.

“My brother, Errol, who is conveniently a top physiotherapist, owned a successful practice in Chatswood called Help St Physiotherapy and Sports Injuries Clinic. Between 2002 and 2008 Errol steadily built up that clinic, introducing remedial massage and gym services, as well as employing additional physiotherapists.

 “It made sense for the two clinics to join.” But the brothers were worried about mixing business and family. However in 2008 the temptation grew too great and the two clinics merged, with Errol joining as director.

Having evolved to incorporate endocrinology, psychology, geriatric medicine and dermatology to its list of services the duo felt a change of name was in order, so the clinics relaunched as BJC Health.

The year 2010 was a big year for the group, commencing an in-house ultrasound service and pathology collection at its Parramatta site. In May the same year, BJC Health opened its third clinic at Brookvale while a third director was invited into the fold—rheumatologist Dr Rob Russo. Another rheumatology colleague, Dr Herman Lau, joined as director in July 2013.

Dr Lim says while expansion has always been on the cards, the group took its time to develop its offering so that everything fit with BJC Health’s vision.

“There is a key theme of patient convenience and communication. We recognised that the way forward in improving the treatment of acute and chronic musculoskeletal injury would involve a coordinated, comprehensive service that no one doctor or allied health professional could reasonably provide. So we’ve set out to recruit practitioners who, under the right working environment, will come together as a team.”

Technological advancements have seen the group welcome arthritis patients from all over the state, drawn to BJC Health’s unique positioning as a world-class arthritis clinic.

Dr Lim says the group has moved beyond standard consulting rooms to better assist its patients. Clients have direct access to the practitioners via email, can call between appointments and can interact with them online.  Client files are kept on remote servers that the doctors can access at any time, and a recent upgrade has seen the group set up a system for online appointment booking.

Its physiotherapy team use an online exercise portal called MedBridge. Clients are able to watch video links or have handouts printed with pictures. All of which has been done, Dr Lim says, to engage, motivate and empower patients.

“For our patients with inflammatory arthritis, our rheumatology care coordinator can email them videos detailing aspects of the condition as well as the medications to be used. There are hyperlinks to access more patient information on our website and blogs.”

“We want to enhance the conversation and empower our clients. While we are proud of what we have achieved, there is so much more we want to do.”'

Wednesday, 25 May 2016

Tell Me Your Story: Suzanne Sagester

Suzanne Sagester
First time I heard that phrase, I was sitting in my doctor's office yet again because I was sick and flaring.  I have Lupus.  Diagnosed in 2008 and this way of life was my new normal.

I've always been energetic, "go for the gusto", "fun-loving", "life of the party" get the picture.  After years of being a legal assistant and an Assistant Property Manager/Office Administrator, I finally decided to go for my dream job.  At the age of 45, I went back to college and graduated cum laude with a Bachelor's Degree in Nursing.  All through school, I was tired...bone tired.  My first job out of college was being a nurse in the Surgical/Trauma Intensive Care Unit.  I had to work 12-hour shifts (NEVER just 12 hours) and a lot of overnight shifts.  That is when I began to get sick. The first major illness I had was pleurisy and I was out of work a week.  I just never seemed to recover.  I was always exhausted and catching everything coming down the pike.  Doctors all diagnosed me with "my age" and "work" being the culprits.

I ended up having to leave my dream job because I just could not do the overnights and it was required.  I got a job as a RN for a gastrointestinal group, ending up as Charge Nurse for them.  A highly stressful job.  I was repeatedly sick.  Always upper respiratory infections, colds and viruses...saw my PCP and pulmonologists and gastro docs, etc.  After one particularly bad illness, my body was in awful pain and I felt like I was made out of lead.  My PCP took blood work again and this time he called me to tell me he thought I had Lupus and sent me to a rheumatologist.  That was the beginning of my knowing about my new normal.  I was beyond shocked and very scared because this disease can invade your brain, kidneys, lungs, skin and even the gastrointestinal system.  It can be fatal.

I ended up having to leave my job after a three month absence due to illness.  I lost many friends because they got tired of asking me places and I was either sick or too tired.  The people in my family who have not researched Lupus don't understand and, even though they mean well, they offer advice such as "don't let it rule you", "exercise", "force yourself to get out more", "you don't look sick", and on and on.  Everything has changed for me and there have been many times when I thought about suicide.  I am a Christian so it is not an option; but I did and have seriously considered it.

Lupus is a big lie.  It will allow you to feel good a day or two and you find yourself cramming everything into that one or two days, which overdoes it and then you're sick for a week or more.  The symptoms go from headaches to your body feeling like it's been punched for hours to hair falling out to nose and mouth sores, to skin lesions that leave scars, to weight gain and high blood pressure because of all the meds you have to take...or all of them together.  Making plans is almost impossible because you NEVER know when the wolf will strike.

This is my new normal.  Every.  Single.  Day.  And lots of my Lupie friends have it worse.  Their organs have been attacked.  I have had numerous CT scans of my abdomen and lungs because of problems.  The fear of this and the depression is overwhelming.  That is the New Normal and it is hard and sad.  Hopefully, new and better medicines will become available to cure Lupus.  Maybe my Lupus will go into remission and not come back.  That is my prayer for us all.  Until then, we will just continue to live our New Normal lives the best we can.

Suzanne Sagester

Image: gingerbread men with differing outfits.  Text: Every story of life with lupus is unique. For World Lupus Day 2016, we're taking the whole month of May to share our stories.

This post was part of World Lupus Day activities throughout May on Sometimes, it is Lupus.  

Tuesday, 24 May 2016

Assessing the Safety of Therapeutic Goods

Do you ever wonder who is responsible for making sure medications and other therapeutic goods are safe?

This is a brief video by the Therapeutic Goods Administration on how they assess the therapeutic products they will approve for use in Australia.

Every therapeutic product (including the "natural" ones) is meant to cause changes in the body - which means that they all have risks as well as benefits.

When the TGA approves a product, that does not mean the product is "harmless" or is safe for non-approved uses.  It means that the benefits outweigh the risks for the particular purpose the product's been approved for.

The TGA keeps a register of every product it has approved for use in Australia, you can go to their website and search medications you are taking (both prescription and non-prescription) and find information about the product, including any recalls or other press releases, and often consumer safety information.

The internet's made the world a much smaller place, but beware of where you buy any medicines. If you buy from outside Australia, you may get a product the TGA hasn't approved, or may not be made to the specifications the TGA's approved, and it may even be an illegal import. (So it's possible to buy a medication that can both make you sick and make you party to an illegal activity.)

Oh, and if you do have a problem with a regulated product, make sure you (or your doctor on your behalf) report it to the TGA - that's vital information the TGA needs to keep doing its job properly.

Sunday, 22 May 2016


The content of this post has been removed, after a check with the Pharmaceutical Goods Administration confirmed that the product is not approved for use.

There are legal implications in anything that could be seen as promoting a non-approved therapeutic product.

Comments have also been removed, and no further comments will be published.

Monday, 16 May 2016

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.

Sunday, 15 May 2016

Tell Me Your Story: Robyn Duffield

Lovely Lupie Robyn Duffield,
with her husband Stephen who
has Parkinson's
A parky and a lupie

We sit and ponder the future
what will it be...
as a parky and a lupie we laugh and cry
as our future is not what we thought it would be

We know we need to exercise
and the lupie is good at that
while the parky would just like the arm to swing
rather than acting like a brat

We both struggle with fatigue and get tired
the parky has a nanna-nap
the lupie crashes early in the night
while the parky moves all night like a flap

The pain we have is different
sometimes we feel like two stones
the parky has stiffness and freezing
the lupie just wishes the body joints don’t moan

There is no cure the doctors state
but together we will cope
as the parky and the lupie
now have a shared single vision to elope

Stress is not good for us
so we are lucky to be together
to help us through the challenges
that we will face every day forever

If you like Robyn's poetry, you can find more (along with her husband's poetry about living with Parkinson's)  here:

This post was part of the World Lupus Day activities, being held throughout May on Sometimes, it is Lupus.

Saturday, 14 May 2016

Pathology Will Continue to be Bulk Billed

The Don't Kill Bulk Bill petition has
It's amazing what can happen in an election campaign.

The campaign's barely begun, and Prime Minister Malcolm Turnbull has announced that the Government's come to an agreement with pathology providers to allow pathology services to continue to be bulk billed, and no costs passed on to those of us who rely on the services.

The current government clearly didn't want this to become a major election issue.

I watched the announcement with interest, as it came in the middle of the first leaders' debate. The agreement was the pathologists was that the pathologists would absorb the extra cost, and in return the government would act to protect them from unfair rises in rent on pathology collection centres.

It's definitely a win for patients.

The government has said the cuts to the bulk billing incentive would save up to $650 million over four years.

Because of the agreement between the Government and Pathology Australia, the Don't Kill Bulk Bill petition has been closed.