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.

I'm Adapting

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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

What AUST R and AUST L on your Medicines Mean.

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

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.

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' "
source

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.

Participation Award

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.)

No-fuss Nutrition: Minestrone in Minutes

Minestrone, made with minimal
effort.

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.

Ingredients:
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.
Water.

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.

Oh Poo!

I 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.

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.

Energy Level Critical

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.)

Shameless Self-Promotion

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

Wego Health Activist Awards

lupus.cheezburger.com

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: https://awards.wegohealth.com/

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.

My Dream

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.)

Keeping the Bucket Close

lupus.cheezburger.com

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.