Ending 2012

I'm sorting things for the garage sale.

Well, it's New Year's Eve, and I'm lying on the couch and not planning to be awake for midnight.

It seems a good time to look over my resolutions from New Year's Day this year, and see what I achieved.

I won't go through them individually.

Well, I did save some of my own energy, and the household energy.  I did leave the kids to be a bit more independent - and one of them even left home.

I slipped up on the healthy diet and exercise.  Once I got sick, all of that fell apart - along with anything that involved my work in any way. So I didn't get the book about baptism written, either, although I did write a couple of new books this year.

So, I did OK with some things, but not so well at others.  Lupus got in the way.

Anyone want a 25 year old wedding dress?

At the moment, I'm so busy, I don't think I will be worrying about doing any new resolutions for 2013.  If I manage to survive the garage sale and move, I will think it's enough of an achievement for the year.

My big goal for this week is to be ready in time for the garage sale my kids and I are having this Saturday - to get rid of the excess items my daughter wasn't able to take to her new house, and my son and I won't fit in our new flat.

After the garage sale, comes packing, moving and cleaning the house up.

I'm already exhausted, with lots more stuff to be sorted through, but it should get easier after the garage sale. If we manage to sell everything, there won't be a lot left to pack up.

Much of the stuff I want to sell, I've had for years, and carried with me through numerous house moves.  From here on in, I need to reorganise my entire life, so everything is easier - including any future house moves.

And On To The Next Thing....

lupus.cheezburger.com

I hope everyone had a good Christmas.

I did.  After church a friend came around, and my daughter and her boyfriend visited.  We had a nice lunch, before the kids went off to my ex-husband's place for dinner.

A bit later another couple of friends came around for a while.

I had planned to go to another friend's house for dinner - but that's where the plans came unstuck.  I slept instead.

Then I slept through Boxing Day. I really needed that sleep.

Yesterday, I read a couple of novels I had on the shelf and had never got around to reading.  That means they can go for the garage sale. That's the next big project now that Christmas is done (well, technically, Christmas is 12 days - and the garage sale will actually be in that time.)

 I'm looking at everything around the house now, thinking: "Packing? Garage Sale? Throw out? Give Away?"

I had started with the idea of what do I want to get rid of?  Then realised that it's more than a matter of getting rid of things.  I'm going to a significantly smaller home. I have to think of the space I'm moving in to, and decide what I want to keep. I only have room to take things that are essential, or that matter to me a lot. Out of the essentials, I'll take the best of everything.  I'm getting rid of mismatched mugs, and glasses that are the last of a set.

I'm keeping the recipe books I actually use, giving a few that I used to use before I had to give up gluten to my daughter (some of her favourite things are in them), and the other 20 or so are going out to the garage sale. I'm keeping some of my professional library - but most is going, because it can be easily replaced with electronic versions that don't require bookshelves. I'm getting rid of clothes that have been mended too many times. Even my wedding dress is going.

There was a time, I thought it would be painful to throw things out, sell them, or give them away.  I grew up being taught to hang on to things.  But it's actually freeing. It's also physically tiring. I'm starting to consider whether I do need to hire a removalist and maybe even a professional cleaner to clean up the house after I leave.  A good friend gave me some "moving money" for Christmas, and another has offered me a long-term loan.  It's given me the option of looking at whether I should spend money to save my physical energy. (And that of my family and friends.) I'll get quotes from movers and cleaners, to see how far the available money would stretch - remembering I still have to get out of this lease, and that will cost money as well.

When the doctor first said it was time to move somewhere smaller and easier to manage, it had seemed like the end of everything.  But it's another beginning, a chance to start out fresh again, to take a good look at my life and see what's important, and to get rid of the things I don't need.

Happy Christmas

lupus.cheezburger.com

To Everyone who Reads Sometimes, it is Lupus,

I hope and pray you will have a wonderful,

joyous, safe, and pain-free Christmas.

Much love from Iris.

Relient K: I Celebrate the day.

The Miracle Continues

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Since yesterday's post, I have been overwhelmed with offers of help - from people I know well, and from people I've only ever met online.

I have received offers of: a loan for the moving expenses; a ute and driver; packing boxes and bubble wrap, etc.

I've had people retweet and share about my garage sale and about my search for someone to take over my lease on the current house.

In the past 24 hours, I have either been in tears or close to tears endless times, just amazed by how generous people can be.

God has truly blessed me with the most amazing people in my life.

To everyone who has prayed, or offered practical help, thank you so much. I don't know how I can ever repay the generosity of so many wonderful people.

My Christmas Miracle

The house I'm leaving....

I'm getting ready to move house.

I can't afford to do it, and if I don't sort out someone to take over my lease here I'm in trouble, but I'm doing it anyway - because the new home is perfect, and it becoming available is nothing short of a miracle.

Less than a month ago, my doctor told me to put in an application with the Housing Department, because I couldn't continue to live in the house I'm in.  It's too big for me to look after now, and the rent is too much for me now that I'm not working.

About a week ago, a friend contacted me and asked if I was still looking for a new home - because the granny flat under her house is going to be available next month, her current tenants are moving out.

It's much cooler than this house - because it's insulated by having a whole house on top of it. It's the perfect size, being big enough for my son and me, but small enough for me to be able to clean it.

There's even a cat-flap for Bumpy. And I can afford the rent.

It's perfect, and it's available now that I most need it.  I'm accepting that as a gift from God.

lupus.cheezburger.com

When I found out about the costs of breaking my current lease, I almost decided against going. But then I had my fortnightly check up with my doctor.  I am a fair bit healthier than I have been lately, but still suffering a lot because of the heat. Her recommendation was beg, pray, do whatever it takes to get out of the lease - but move to the new flat.

So I've asked the real estate agent to ask the owners to waive the fees for breaking the lease - after all, I've been here for years. And I'm asking everyone I know to ask around and see if anyone they know might want to take over the last few months of my lease here.

Financially, it's going to be a shock to the system - not just getting out of the lease, but the cost of moving.  I honestly can't afford it, but am trusting it will all work out somehow.

Physicially, moving is going to be exhausting.

We're going to have to cull a number of our possessions, so I'm throwing out things, and setting things aside for a garage sale. Hopefully, as well as cutting down the number of things we have to move, the garage sale will make us some money to cover the expenses of moving. I'm trying to start the packing and throwing out, while still getting ready for Christmas.  I have to keep a balance still, sleep as much as possible, and do minimal things through the heat of the day. It's a challenge - do do everything in time, and yet not push myself to the point of becoming more unwell. It's especially challenging in the heat of a Queensland summer! (Heat leaves me exhausted to start with.)

lupus.cheezburger.com

Going through what I want to keep and what I want to sell/throw out/give away is an interesting experience.  For me, it's quite a spiritual experience, realising that the material things I've gathered around me are not all that important. Getting rid of things that no longer have a use, assessing what I really want to keep, helps make me more aware of my priorities.  (If you want to see what it's like: look around your home, imagine you were moving to somewhere half the size, and decide what you need or want enough to keep and what you can live without.)

Then there's packing and moving.  I suspect I won't be able to afford a removalist, so it will be a matter of hiring a ute, the same as my daughter and her boyfriend did for their move. I will be counting on the family, and any friends who have time and energy helping.

And after the move, is cleaning the house.  It's a job I've been struggling with while living here. I hope it will be easier with the house empty. Again, I'll probably be looking for help.

After the move, and the clean-up, I'm going to need a lot of rest to recover.  Hopefully, as this flare is starting to ease, it won't come back and hit me as a result of the move. But, I'll have a cooler home that's easier to care for to recover in.

Gluten-free Christmas: Christmas Cake

Step 8: Decorate the top of the cake with nuts.

500g mixed dried fruit
quarter cup orange juice
50ml sweet sherry
25ml brandy
2 teaspoons golden syrup
2 tablespoons peanut oil
3 eggs
80g dairy-free margarine
quarter cup brown sugar
2 tablespoons caster sugar
drop Parisian essence
quarter cup brandy (extra)

1 1/2 cups gluten-free plain flour
1 teaspoon bicarb soda
1 teaspoon cream of tartar
1 teaspoon cinnamon
half teaspoon nutmeg
1 teaspoon mixed spice

Raw nuts (own choice) to decorate top of cake

1. Combine fruit, juice, sherry, brandy, syrup and peanut oil in a bowl, mix well. Cover and leave in refrigerator overnight.
2. The next day: Preheat oven to 130 deg C. 
3. Line a medium cake tin with baking paper.
4. Cream the margarine and sugars, add Parisian essence, then add eggs one at a time.
5. Add the margarine mix to the fruit mix and combine well.
6. Sift dry ingredients and add to the fruit mixture and combine. (Don't over-mix, gluten free flour becomes tough easily.) 
7. Pour into prepared tin, and spread evenly.  (I find it's easiest to use wet hands to spread the cake mix and even out the top.)
8. Decorate with assorted nuts.
9. Bake for about 90 minutes. Until a skewer inserted in the middle comes out clean.
10. Remove from oven. Pour over the extra brandy.  Cover the top of the cake with baking paper, and wrap in a towel. Allow to cool, wrapped overnight.

This cake will keep for a while in an airtight container - but it's not as long-lasting as regular fruit cake.  If you're going to store it more than two or three weeks, freeze it.

Recipe is gluten free, and lactose free.

Business Directory Business of the Week - Bracelets, Beads and Bling

This week's Lupus Business Directory Business of the Week is Bracelets Beads and Bling.

Annie makes lovely bracelets - I have a gorgeous lupus awareness bracelet she made, and also had the cutest little bracelet made to order for a young girl for Christmas.

It's worth a look at her page, if you're looking for unique and gorgeous gifts.

Bracelets Beads and Bling

Handmade Jewellery by Annie Taylor (Lupus)

Moaning About Money

lupus.cheezburger.com
(No, this is not Mr Bumpy - who uses home brand
cat litter, and does not have to make his own.
When he shreds paper, it's for fun.)

Every now and then something circulates on email or social media about how someone who is well-dressed, have make-up on etc, asks for a pensioner discount. The self-righteous people who pen these missives then claim that this proves our pensions are too high, or that we're helping people who are wasting money and using it badly.

I'd like to answer these things - (feel free to copy and paste freely as needed.)

Dear person who thinks pensions are too high,

I would like to suggest to you that if you can't tell the difference between:

• Your $30 a time professional manicure that lasts two weeks if you're lucky, and my $5 bottle of no-name brand nail polish that lasts me six months or even more,
• Your $150 hair style, and my home hair cut done with a $20 pair of hair cutting scissors that has lasted me five years, (and my six-monthly treat of a $15 home hair dye),
• Your $50 per 200ml bottle of expensive moisturiser and my $5 per litre (or less) bottle of sorbolene,
• Your $20 make-up remover, and my same bottle of sorbolene,
• Your clothes that are discarded and replaced every season or so, and my clothes that were bought on special (I try not to spend more than half the original price), and then cared for so they last,
• Your $25 eyeshadow and my $5 eyeshadow (and prices are similar for foundation, lipstick, etc),
• Your expensive shoes, and mine, bought on sale and repaired numerous times,
• Your $5 shower gel and my $1 cake of soap,
• The home-made snacks I carry in my handbag, and the ones you buy at a coffee shop,
• Your dog's professional grooming, and my dog's home bath, hair cut and nail clip,
• Your name-brand everything, and my no-name brand everything,
• Your things that are thrown out when damaged and mine that are repaired, reused, recycled wherever possible,
• The things you bought new, and the things I was given second-hand,

...then I really have to agree with you. One of us definitely has too much money, and is clearly wasting it.

Kindest regards,

A disabled pensioner.

Christmas Chaos

The Christmas tree is finally up.

I'm usually super-organised about Christmas.

I have presents all bought before December starts (I like to minimise the amount of time I spend at shopping centres when everyone else is doing their Christmas shopping.)

The Christmas tree always goes up after church on the first Sunday of Advent.

All of the family's favourite Christmas treats are baked well ahead of time.

And I've usually written Christmas services a couple of weeks before Christmas.

This year?

Well, I'm not doing Christmas services - I'm not working at all. But having less to do is not helping, because I'm still exhausted most of the time and trying to recover, from the flare that stopped me from working.

Add to that a couple of 39 deg Celsius days, a couple of catch-ups with friends (which I chose to do and enjoy, knowing that my energy reserves were depleted) and you can guess what has happened to my super-organised Christmas.

The tree didn't go up on the first Sunday of Advent, because I was driving the ute for my daughter to move to her new home.

The baking is way behind schedule, as is the housework.

This week, my son and I decided that if we didn't put the Christmas tree up soon, there would be no point, so we just got in and did it. As I lay on the couch recovering from that, my son asked: "Er Mum, what are we having for dinner? Bearing in mind that we have no clean dishes to eat off."

For the first time in a very long time (and it may be that brain fog caused me to leave out an ingredient), the chocolate pudding my son loves was an absolute failure. My daughter took it back to her place as a treat for her pet rats. So now I'm worrying that the plum pudding and the Christmas cake may taste terrible even though they look OK.

From a brief discussion on the Sometimes, it is Lupus Facebook page, it seems that other lupies are having similar issues - not enough energy for the things they'd like to do for Christmas. With Christmas, as with everything, we have to set priorities. Which things are so important they absolutely must be done? Which things would be good to do, if there is enough energy left? Which things don't matter so much after all?

Ultimately, although it would be nice to bake everyone's favourite treats, and have the house looking presentable, what's most important is that on the day, I have the energy to enjoy going to church and to enjoy spending a day with family and friends. Anything else I manage is a bonus.

Fatigue

awesomeanimals.cheezburger.com

My darling son graduated his Diploma in IT (Networking) last night.

I can't show you the photo, because he doesn't like his picture appearing on the internet.

He said he looked like someone out of Harry Potter in his academic gown, but I thought he looked very nice.  Especially as we'd had to rush out and buy slacks and a button-up collared shirt. (He discovered at the last minute that metal band shirts and torn black jeans did not meet the dress code.)

I must confess to being exhausted today - and being in a bit of pain.  Yesterday, I met a friend for coffee in the morning, then had the unexpected trip clothes shopping, before the train ride and short walk to the Brisbane Convention and Exhibition Centre.

It does not take much to tire me out now.  But I do have to go out again today for a while - I have a house blessing to do this morning, and I need to go to the chemist. Beyond that, the house work is well and truly out of control, and the Christmas cake still not made. So there are things I must do today.  I'm also going to have a couple of very long naps.

The big challenge of life with a chronic illness is that basic things, that other people would not find particularly tiring, are exhausting. So everything either gets done far more slowly, or remains totally un-done. Meanwhile, my to-do list grows at the same rate as anyone else's (things just don't get marked as "done" too often.)

At least my Christmas gift shopping has been done!

Did you buy any of your Christmas gifts from the businesses in the Lupus Business Directory?

I'd love to be able to share your reviews/recommendations of businesses from the directory.  Please email me, with your comments about any of the businesses, so we can share them with everyone.

When Not To Go To Ikea

icanhascheezburger.com

Well, it's been a busy few days, and I've been busy not actually achieving much. But I've learned a lesson.

Yesterday, I was going to go to Dreamworld with a friend.  The first problem with that was the weather report: rain, storms and partially sunny. We decided to head towards the Gold Coast anyway, and if we encountered the rain and storms, we'd find something to do indoors instead.

We headed towards the coast, and failed to find the "partially sunny".  A decision to go to Mount Tambourine instead was aborted when we discovered we couldn't even see the mountain through the rain.

So we turned back towards Brisbane and stopped off at Ikea.  It was time I ate so I could take my tablets, and my friend wanted to buy a reading lamp, so it seemed a good idea.

It seemed like a good idea - and we did get a meal, and my friend did get his lamp.

We also got a long walk on concrete.

Oh, I didn't mention, I've been having problems with my hips for a couple of weeks.

I know Ikea's an interesting place to visit. There's lots of odd things to look at. They've added a couple of "shortcuts", but because neither of us had been there in a long time, we took the long way. I felt OK at the time, and thought I could handle it.

By the time I was home, I realised it hadn't been a good idea.  I fell on the couch and passed out.  I was exhausted, and both hips (the good one as well as the bad one) were killing me.

I'd intended going out again in the afternoon to buy some things we urgently needed from the supermarket (we're out of cat food.) In the end I decided to find out if the cat would accept lemon-pepper tuna instead - turns out he loves flavoured tuna and I'll probably never again be able to eat it in peace.

So I've learned something: do not go to Ikea when my hips hurt.

Budgeting Energy

lupus.cheezburger.com

I've been thinking a lot about all the things I had planned over the next few days.  And I've been assessing my energy levels - which have been very much depleted by Brisbane's heatwave this week.

The only logical conclusion was to set priorities, and decide which things are most important for me to do. That means I've given my apologies for today's outing, so I can handle the weekend.

Honestly, having done so, I feel a sense of relief.

It's a tough choice - and I know lots of other lupies are with me on this - to have to decide between things I really want to do, when I know that I can't do everything. It's an ongoing challenge - to make the most of life, while budgeting my energy wisely. I also know that for healthy people, the things I had planned over the next few days would not seem so monumental.

So today, I'm staying home, doing that bit of housework that I had to do whether I stayed home or went out, and relaxing as much as possible so I have energy to enjoy the weekend.

If you're doing your Christmas shopping on-line, you're running out of time to get it delivered in time!

Please check the businesses in the Lupus Business Directory - there's some great gift ideas there.

I Have A Social Life (When Did That Happen?)

lupus.cheezburger.com

Last Saturday, a friend asked me if I'd been out much lately. I hadn't, and we went out to see the new James Bond film.

This week, with the heatwave, I've had lots of invitations from friends who have air-conditioned houses to visit, even if they're not home. Instead, what I've done is turn on my little portable air conditioner and gone back to bed for the hottest part of the day.

Now, I look at my diary and apparently I'm out every day until Monday.  Tonight is weight loss group, tomorrow I'm going to a movie with another friend, Saturday is a Lupus Association Queensland get-together, Sunday afternoon is a concert with another friend, and Monday a trip to Dreamworld with a friend.

I'm quite awed at the fact that I seem to have acquired a social life somewhere.

I'm also a bit concerned that I may have bitten off more than I can chew.  Usually I'm more careful to turn down invitations if I am already committed the day before or after.  Did I seriously agree to all these things? Well, yes. I just didn't until now connect up that I would be leaving the house five days in a row. And, in fact, I want to do all of them.

That calls for careful management, and lots of naps.  So if you don't hear from me much over the next few days, don't worry.  I'm just resting between social engagements. If I do get sick, well, there's lots of people expecting to see me at various places, so someone will be checking if I don't turn up.

Unless, of course the world is about to end, which apparently it is. I'll give you the official announcement by the Prime Minister (it was a joke she did for triple j radio - awesome that our PM would take time out for that). She says it means she doesn't have to do Q&A any more.  For me, it means no more lupus! Sounds like a good deal!.

If you haven't finished your Christmas shopping yet, you're running out of time.  Remember to check the businesses listed in the Lupus Business Directory for gift ideas.  All of the businesses listed are owned by people with lupus or other chronic illnesses. Buying from them helps with the financial burden of living with an illness.

A Lupus-Less Christmas

If I could have anything
under the tree,
I'd love to find there
a lupus-less day just for me.

To not get sick
from going out in the sun
Would give me a chance
to enjoy the day's fun.

I'd eat gluten and lactose
without ill-effects,
And not have to ask:
"So, what's in this?"

No matter the weather,
hot sun or cool rain.
I wouldn't be worried,
about fatigue and pain.

I'd cook a great feast,
and have energy left,
so I could enjoy
the time with my guests.

For one whole day
I'd forget about pills,
and not for a moment
think of specialist's bills.

No rashes, no itches,
no painful sore joints.
No headaches, no nausea,
no dry eyes and mouth.

Santa, please bring it
I'll send you a map.
I won't be awake,
I'll be having my nap.

Christmas can be difficult for people with lupus and other chronic illnesses. There's extra effort to cook and clean if guests are coming, and the energy and cost involved in the shopping. Add to that extremes of temperature (summer heat in Australia, winter cold in some parts of the world), and you get a major challenge for someone who has limited energy to begin with.

While you're doing your Christmas shopping this year, please think about how you can help people who really are struggling at this time of year.  One way you can help is to buy some of your Christmas presents from businesses listed in the Lupus Business Directory.  These small and micro businesses are run by people with lupus and other chronic illnesses - often selling items we have made as therapy.

Do You Have The Lupus Book Yet?

You can click through some of the pages in a preview of the book here.

Want to buy a copy? It's available here.

New in the Lupus Business Directory

New addition to the Lupus Business Directory today:

Ginger Made That

Ginger Lee (Lupus) has handmade crafts, painting and vintage items.

See also Ginger Made That on Facebook.

There's a fascinating variety of things to see at Ginger's Etsy Store.

Lupus Business Directory Business of the Week

This week's Business of the Week is Misty's Blaming Lupus - Lupus Gear.








Blaming Lupus - Lupus Gear T-shirts, stickers, fridge magnets etc. Misty (Lupus)





And find the Blaming Lupus blog here.

Gluten-free Christmas: Chocolate on Chocolate Crackle Slice

4 cups gluten-free rice cereal (I use Freedom Rice Puffs)
1 cup pure icing sugar or gluten-free soft icing mixture
1 cup desiccated coconut
half cup cocoa

250g copha (white vegetable shortening)

375g gluten and lactose free dark chocolate

1. Line a 25cm x 35cm baking tin with baking paper.
2. Mix all dry ingredients in a large mixing bowl.
3. Melt copha, add to dry ingredients, and mix through.
4. Pour into prepared baking tin. Refrigerate.
5. Meanwhile, melt the chocolate in a bowl over a pan of hot (but not boiling) water.  
6. Spread melted chocolate over the top of the mix in the baking tray.
7. Refrigerate until set.
8. Cut into squares.

Recipe is gluten free, lactose free, and vegan friendly.

Heat and Fatigue

lupus.cheezburger.com

Well I survived the big move yesterday.  By the end of the day, my "good" hip felt almost as bad as my "bad" hip - and I was exhausted.  But I'm glad I was able to do a little to help my daughter and her boyfriend.  (All I did was drive the ute - the hire company wouldn't allow a young driver to do it. The kids and my ex-husband did all the lifting and carrying.) There was a time I would have had no problem with lifting as much as anyone else.

I've also seen (having moved out some furniture that's been here since we moved in) just how dirty the carpet  at my place is. So I think that over the next little while I have a new project. My vacuum cleaner is also a carpet washer - and the carpets are long overdue to be washed.  I'm not going to try to do the whole house at once, but will try to do a little patch once or twice a week until it's done. That really is a big challenge.

Our Queensland heat wave is about to reach its peak tomorrow, so today I'm trying an experiment, one that I know will do terrible things to my electricity bill, but I hope will make life tolerable. I'm leaving my little portable air conditioner on all day, and turning on the evaporative air cooler in the lounge room and leaving it on - shutting whatever doors in the house I can so that I'm trapping that coolish air in as small a space as possible and seeing if I can actually keep the house tolerable for the day. If that fails, I'll turn everything off and retreat to a shopping centre or a City Council Library.

Really, if I can avoid going anywhere today, that would be good, as I'm still recovering from yesterday.

Stay cool, whatever you're doing today.

Stay Cool

The last few days here in Queensland have been hot, and the next few are predicted to be pretty awful as well.

I've been posting information as it comes out from Queensland Health about heat stress and staying cool.

What I've personally been doing to try to avoid the heat is to leave home in the hottest part of the day and go somewhere that is air-conditioned. Generally, I've gone to our local Hungry Jack's. They've got free soft-drink refills, so I buy a diet coke, and read their copy of the Courier Mail, or my Kindle for a couple of hours.

Yesterday afternoon, I went to the movies with a friend to see the new James Bond film.

I'm thinking for a change this coming week, I might visit a couple of the City Council libraries in nearby suburbs.

The big concerns in extremely hot weather for me, and probably for many other lupies, are to stay cool and to stay out of the sun.  Heat makes the fatigue of lupus much worse for me, and sunlight not only causes rashes but also makes me feel incredibly sick.

Beyond that, we have the same issues as everyone else. We need to stay hydrated, wear cool comfortable clothes, and be aware of the symptoms of heat stress.

Oh, and as all the reminders on ABC radio are saying, don't forget your pets.  Make sure they've got plenty of fresh water and somewhere at least shaded to stay.  (Our household has discovered that pet rats love ice cubes and frozen vegetables.)

Today, I'm helping my daughter move house. (No, I'm not doing the lifting - just driving a ute for them, the ute hire company doesn't let young people drive their vehicles.) I'll be making sure I have a ton of sunblock on, and will be staying in the cool as much as possible, and taking a bottle of water with me.

Whatever you're up to today, stay cool.

Gluten-free Christmas: White Christmas

4 cups gluten-free puffed rice cereal
1 cup desiccated coconut
1 cup pure icing sugar (or gluten-free soft icing mixture)
1 cup mixed dried fruit
150g coconut milk powder (or soy milk powder)
200g glace cherries
125g glace ginger
250g copha (white vegetable shortening)

1. Line a 25cm x 35cm baking tray with baking paper.
2. Mix all ingredients except copha in a large mixing bowl.
3. Melt copha in a small saucepan over very low heat.
4. Pour melted copha into dry ingredients and mix through - mix will be fairly dry.
5. Pour mix into prepared tray, and press down evenly.
6. Cover with baking paper and refrigerate until set.
7. Cut into squares.

REcipe is gluten free, lactose free and vegan friendly.

Message from Queensland Health Regarding Heat Stress Danger

Dr Michael Cleary, Deputy-Director General, Queensland Health talks about heat stress symptoms.

30 November 2022 - Queensland heatwave

Parts of Queensland are currently experiencing very high temperatures so it is important we do everything possible to protect ourselves from heat related illness.

Call 13 HEALTH (13 43 25 84) at any time for practical medical advice & assistance - in an emergency call Triple zero (000)

(Reproduced from Qld Health via YouTube)

New in the Lupus Business Directory

There are two new businesses in the Lupus Business Directory today:

DeanasDezigns

Altered art jewellery by Deana Cravalho (lupus and ET)

A portion of proceeds is donated to American Lupus and Cancer societies.

Noctua's Nest

Jewellery, clothing and other items by  Alyssa Miller (Chiari 1 malformation and Ehlers Danlos which is a connective tissue disorder) 

All profits go towards the cost of Alyssa's service dog.

It's well worth a look at the incredible work these two ladies have produced.

Looking Forward

What would I do if I could accomplish any one thing in 2013? It's the National Health Blog Post Month prompt for today, and has me wondering....

There's so many things I'd like to be able to do: to get well enough to go back to work; to get to a healthy weight; to simplify my life and get rid of many of my possessions; to move to a smaller (easier to manage) home, preferably with no carpets to vacuum; to finally find the love of my life; to pay off another of my debts; to write a book about living with lupus; to write two fiction books that have been running through my mind for a couple of years; get the membership of the Sometimes, it is Lupus Facebook page from the hundreds to the thousands; adapt to life with my daughter living away from home ...

So many things I'd like to do aren't realistic at all, and others I'm already working on.

But a big goal? A major achievement for the year? I'd like to see awareness of the Lupus Business Directory spread.  I'd like it to be something people use regularly - that maybe even they check if there's a business in the directory producing what they're looking for before they look anywhere else.

There are a number of problems with setting that as a major goal.  I don't know how to measure whether I've succeeded.  It's not something I can do on my own - I don't have a budget for an advertising campaign, so I'm reliant on word-of-mouth, on people telling other people and sharing on social media.

I don't know how I would measure, but I really would love to discover that my little project really did make a difference for people struggling with the financial burdens of chronic illness.

So, I'd like your help.

If you know of any businesses (or have one) owned/run by people with chronic illnesses, please email me the details.

Please share the Lupus Business Directory link with your friends, and tell them about the goal of helping people with chronic illnesses to earn their own income.

This post was written as part of Wego Health's National Health Blog Post Month.

Heat Warning

It's the start of what is going to be a long, hot summer.

The weather bureau was talking on the radio this afternoon of temperatures up to 10 degrees higher than normal.

So it seemed like a very good time to share this information from Queensland Health about the health dangers of hot weather, and how to avoid the risks.

http://www.health.qld.gov.au/disaster/documents/stay-healthy-heat.pdf

Gluten-free Christmas: Christmas Pudding

Fruit mix
2 cups mixed fruit
half cup brown sugar, firmly packed
90g dairy-free margarine
2 tablespoons golden syrup
quarter cup brandy
half teaspoon orange essence
one cup water

Dry mix
1 cup gluten free plain flour
half cup almond meal
teaspoon mixed spice
half teaspoon cinnamon
half teaspoon xanthan gum
half teaspoon cream of tartar
quarter teaspoon bicarbonate of soda

Egg mix
1 egg
drop Parisian essence (or a shot of espresso, cold)

1. Put fruit mix ingredients in a saucepan, heat gently until margarine has melted, and sugar has dissolved.  Remove from heat and cool. 
2. Sift dry mix into a large bowl. 
3. Add cool fruit mix, and the egg mix. Mix well.
4. Pour into a greased six cup pudding basin, and put on the lid.
5. Place into a large saucepan, and fill add water, until the water comes to about half-way up the side of the steamer.
6. Bring to boil, and simmer four hours, adding extra warm water if necessary.

Serves 6.

Can be frozen.

Serve hot with custard or cold with cream or ice-cream.

This is gluten and lactose-free.

Snake Oil

The internet's a great source of information, but it's also a great source of misinformation. A great example of the misinformation is the number "cures" or "treatments" out there that float around the internet - many of which are not actually proven, are in very early stages of research, or may actually be harmful.

As people recommend them to me, I usually research and see if I can find the truth behind the myth.

Here's some I've looked at so far:

• Dr Internet Prescribes Cannabis to Cure Cancer
• Panacea (about low-dose naltrexone)
• New Fat-derived Stem Cell Treatment Restores Lupus Body Functions (promising research)
• Alternative Therapies (about a product promoted as "clinically proven" but no clinical testing had been done)
• Food and Inflammation  (following up from the myths about diet and inflammation)

I think it's important to try to sort the truths from the half-truths and total falsehoods. I understand the temptation to grab on to any hope, no matter how flimsy. In a post-modern world, people's opinions are presented as if they were equal to facts (for example the anti-vaccination campaigns - which are not based on myth  - are often treated as equally valuable as the actual scientific evidence in favour of vaccinations.) 

But when people's lives are in the balance, we have to look at reality - and the person who gave his child cannabis while the doctors were giving the child chemotherapy - really has no evidence at all to support his case that it was the cannabis (not the chemo) that actually cured the child's cancer. The doctors who have cured many other children with the same cancer using the same chemotherapy regimen have a much stronger case to argue that the chemotherapy should continue to be used with kids with the same cancer. 

Very early stage research to say that low-dose naltrexone may have some impact on some autoimmune conditions, does not automatically mean that low-dose naltrexone will cure all autoimmune conditions and should be used instead of all other treatment.

This post was written as part of Wego Health's National Health Blog Post Month.

I Bet You Didn't Know....

Today's National Health Blog Post Month prompt is "I bet you didn't know...."  and I've been thinking all day (hence posting about 12 hours later than usual) about what I haven't told you about lupus, or even about my own life.

Let's face it, in the past year and a half, I've told you pretty much everything there is to know about me and I've tried to tell you pretty much everything I know about lupus.  There's not too many skeletons in the closet.

But then today, the state premier apologised to single mothers who were forced to give their children up for adoption, and I realised there is something about me that you don't know.  Whether you're interested or not, I don't know, it's not related to lupus, just tells you more about who I am.

I was born to a single mother during the time of forced adoptions.  I slipped through the system somehow. My mother kept me. There was no child care back in those days, married women, especially women with children, were expected not to work.  Single women were expected to not have children.

My mother took me to work with her. When she worked in a pub, I was shoved under the bar. When she worked in an office, I was shoved under a desk. In one workplace, I played in heavy equipment - industrial-sized welders and alternators we hired out - so I was always covered in grease.

I wasn't socialised the way other children are.  The first time I had to deal with children my own age was my first day of school.  (I had an older half-brother, but he always acted like and adult, and my mother treated him more as a partner than as a child. In my life, he had the authority of a father.)

Not surprisingly, I struggled with grade 1. (We didn't have preschool or prep in those days.) I didn't know how to make friends. After years of running around adult workplaces, I didn't understand the whole idea of the classroom. I'd always addressed adults by their first names, and joined in adult conversations, and didn't understand the difference between adults and children.

When I was threatened with being kept down in grade 1, I got myself sorted out at least to the extent of getting in control of my academic work. But until my mother cut off contact with me, I lived with the tag of being "slow" because I had come close to failing grade 1.  Even at my master's degree graduation, my mother complained that her "slow" child kept getting degrees, while her smart children didn't finish high school.

So many things happened to me in my early life, that I had constant dreams of someone rescuing me - taking me away.

Today, when the Premier apologised to all the mothers whose children were taken off them, I found myself resentful, wishing someone would apologise to me for not taking me from mine.

So there's a very old skeleton from my closet, and my chance to vent. Thanks for your patience.

This post written as part of Wego Health's National Health Blog Post Month.

Gluten-free Christmas: Rum Balls

1 cup sultanas
40ml  rum
250g packet plain gluten-free biscuits (I used Leda's arrowroot biscuits, which are also lactose-free)
1 cup desiccated coconut
half cup cocoa powder
half cup caster sugar
2 tablespoons apricot jam
extra coconut for rolling

1. Put sultanas and half the rum in a sealed container, shake, refrigerate for at least a week, shaking from time to time, so until all the rum is absorbed.
2. Crush the biscuits (either in a food processor, or place in a plastic bag and crush with a rolling pin.) 
3. Place crushed, biscuits, 1 cup coconut, cocoa, and sugar in a bowl, with soaked sultanas, the rest of the rum, and the jam.
4. Mix the ingredients together, then take spoonfuls of the mixture and form into balls.  Roll each ball in extra coconut and refrigerate.

Recipe makes about 30.

Recipe is gluten-free, (lactose free, vegan friendly depend on the type of biscuits used). 

These rum balls are very rich. 

Business of the Week: Bella's Crafting

This week's Lupus Business Directory Business of the Week is Bella's Crafting. Tina and Shirley make the most awesome Christmas decorations, so now is the perfect time to look at their Facebook page.


Here's their Listing:

Bella's Crafting

Hand tied fleece blankets, Christmas ornaments and decor, tablet cases, pompom gloves, awareness ribbons, crocheted pot holders, etc.

Made by mother and daughter duo Tina Wolfe and Shirley Keller-Wolfe (both of whom have fibro.)

Issues Healthy People Don't Have

Today's health blogging month prompt is to make a meme and talk about it.

I'm guessing this means "meme" in the sense it's come to be used, as a picture with words on it - not as Dawkins originally coined it as an idea that  reproduces itself (as a gene reproduces itself.)

So, working with that definition,  I've started making a series of lupus awareness images which compares our lives to the lives of healthy people.  So it's "issues healthy people don't have". So far, I've done seven, picking out bits of things that many lupus patients have to take into account in our everyday lives, that people who don't live with a chronic illness never have to consider.

This post written as part of Wego Health's National Health Blog Post Month.

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Another issue healthy people don't have is whether or not their health will allow them to earn an income. Check out the Lupus Business Directory to see the creative ways some people are trying to earn an income, while working around their health limitations.

Where There's A Will

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I, Iris Carden, being of occasionally sound mind and  thoroughly unsound body do hereby bequeath.....

Well, the Health Blog Post Month prompt asks me today what I want to happen to my blog/community after I die.

I have to confess that until today I hadn't thought that far ahead. At the moment, I'm still struggling with where will I live and how will I get by while I'm alive.

So now, getting past my immediate personal concerns, I'm stopping to think about what my legacy will be.

The Sometimes, it is Lupus blog, Facebook page and Google+ probably won't continue. After all, there's lots of blogs and FB pages out there that deal with lupus, and new ones coming on all the time. So I suspect these will not be missed when I'm no longer here.

What I would like to continue in some form, if someone else, or some group would eventually take responsibility for it, would be the Lupus Business Directory. It's only been in operation a year and still just a single page on this site, but I hope, that one day it will grow into something bigger. I hope that it really does eventually make a difference in the lives of people with lupus and other chronic illnesses - help with promoting our small and micro businesses, and help us to make our own income and not be totally dependent on social security.

I think if I could leave that behind, as something that really does work to make a difference, then that would be a worthwhile legacy.

This post was written as part of Wego Health's National Health Blog Post Month.

If I Had Unlimited Money

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If I had unlimited money.....

OK, I have to confess up front, I'd deal with my own personal financial crisis - clear my debts and make sure I had somewhere to live.

After that, I think I have four priorities for money:

1. Lupus research. I would really want to help towards better understanding of lupus, better treatments and ultimately a cure.
2. Improved support systems.  Here in Queensland, we have a social group for support for lupus patients, but it would be great to have counselling services, information services, referral services, etc. Maybe it could even link lupus patients with discounted or subsidised services for things like house cleaning, yard maintenance, etc - the things we don't manage so well for ourselves.
3. Helping people with lupus help themselves.  Based on the Lupus Business Directory, I'd love to be able to provide free services to help people with lupus and other chronic illnesses to earn their own income. There's a degree of dignity to earning your own income, that we can lose when we lose our ability to have a regular job. Even to earn a small amount from something we've done makes a difference to our sense of self-worth.
4. Lupus awareness.  There are so many health conditions that are far less prevalent than lupus that people generally know more about. That's because they get advertising and awareness campaigns.  Those kinds of campaigns take either money or someone famous backing them, or both.  More awareness would mean lupies would have to deal with less of the assumptions about how we look healthy therefore we can't really be that sick.

There's a lot of things money can't do.  But there are some areas where it really could help.  It would be wonderful to see someone who did have the money put it into some of those areas. 

This post written as part of Wego Health's National Health Blog Post Month.

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While we're on the topic of money, how's your Christmas gift shopping going?  Is there anyone you still need to get something for?  While you're here, take a look at some of the businesses in the Lupus Business Directory, see if you can find that present you're looking for.

How To Help

After my What Lupus Has Taken Away post, there was a comment asking how to help.

I've been thinking about that.

I checked about adding a "donate to this blog" button, but I'm in Australia, and to ask for donations I'd have to be a registered charity. (You don't become a registered charity by not being able to pay the rent.)

So to help financially there are a couple of things possible:

If you own a business relating to health, you could sponsor a post on this blog (or a business relating to animals, you could sponsor a post on mrbumpycat.com). In either case, I charge $25 AUD per post.

You could buy some of my books. They're available in paperback or epub from Lulu, or in Kindle edition from Amazon.  Or you could buy some of my tee shirts from Iris' Shirt Shop. Or you could share any of those links on your own Facebook, Twitter, Google+, Pinterest, etc, to help promote them to others.

There's also paid ads back on this site. Paid ads are only paid if someone clicks on them (and of course I can't ask you to click on them - there's ways of filtering out too many clicks), and in more than a year, I have not had enough clicks to be paid anything yet.  It takes a very long time.

But that's just me.  There's lots of people with lupus and other chronic illnesses who are in the same situation.  One of the big issues with chronic illness is that it takes away a big chunk of our ability to earn an income.  And nowhere in the world is social security so good that it makes up for what we lose.

So you know what's coming next, don't you?

The Lupus Business Directory is my project to help people with chronic illnesses to help ourselves.  Any time you purchase anything from the directory, you are helping someone who has a chronic illness. At this time of year, you're buying gifts anyway, and the Directory's got plenty - jewellery, books, handcrafts, clothing, cosmetics, even perfumed candles.

So just as you can help me by buying my products, you can help many other people in a similar situation by buying from them, and by sharing the link for the Business directory.

The Best Doctor's Appointment

lupus.cheezburger.com

You know what the absolute best doctor's appointment would be?

It's a fantasy I have, it goes like this:


I go to the rheumatologist, and he is not three hours late. (If you knew my rheumatologist, you'd know this is pure fantasy.)

I walk in and he smiles (fantasy, like I said), and says: "I've got some great news, there's a cure for lupus. You just need this pill (I'd even accept a needle). Have it now, and tomorrow when you wake up, you can go back to your old life."

That would be the best doctor's appointment ever. It's highly unlikely to happen though.

There is research being done, but as yet, it's not to the point of curing lupus, it's working on things like understanding lupus (there's still lots that's totally unknown), and finding new and better treatments.  All of that is important, but my dream, and I'm sure the dream of all other lupies, is an actual cure.

This post written as part of Wego Health's National Health Blog Post Month.

Giving Thanks

lupus.cheezburger.com

Today's Health Blogging Month topic asks what I am thankful for.

This runs the risk of sounding like some awards speech, but there are so many people I am grateful to and for, and so many circumstances I am grateful for. I know I complain at times, but really, my life has been very blessed.


So let's start with the people:

I am incredibly grateful for my kids.  God has blessed me with the most absolutely amazing kids on the planet.  They have had struggles and challenges that not everyone their age has had to face, and they always come out on top.  They never question reaching things for me, lifting things for me, or even helping me with my shoes on really bad days.

I am grateful for my amazing friends, who are there to support me through pretty much anything, and put up with me changing plans at the last minute and all sorts of other inconveniences. Who support me in very practical ways, as well as emotionally.  Among my friends, I list the members of Ashgrove West Uniting Church congregation - they're more than my church, they're my family.

I am grateful for my GP, who is incredibly caring and understanding, and to my specialists who really know their stuff.

I am grateful for God, being with me through every event of my life, whether positive or negative, so that I'm never left feeling that I have to sort everything out by myself.

I am grateful for the on-line community. For all the amazing people who live in my computer. Those of you who read my blog and leave me comments, those who I meet on Facebook, Twitter, and Google+. It doesn't matter what time I log on, day or night, there's always someone wonderful waiting in my computer to share the ups and downs of life with.

I am grateful for everyone who has bought any of my books or tee shirts, for the friend who sends me gifts of money, for the business that is going to pay for my first sponsored blog post.  I don't know that you realise just how much this means to me. With finances so tight, every little bit of "breathing room" in the budget is a huge relief and a blessing.

I'm grateful to the friends who gave me their portable air conditioner when they upgraded to a wall-mounted one. (It makes a massive difference to my fatigue levels in the Queensland summer.)

I am grateful for all of those people I don't know, working in laboratories, and hospitals, and universities, trying to find new treatments, and maybe even a cure for lupus.

I'll probably think of a dozen other people as soon as I hit "publish". (That's the risk with lists like this, and my brain fog.)

On to the circumstances I am grateful for:

Despite the fact that I have lupus, I have only lost two organs (appendix and uterus), both of which I can live quite easily without.

I am grateful for all the pills I hate taking so much. I know that in many places in the world, they would be hard to come by.  Thanks to Australia's Pharmaceutical Benefits Scheme, medication is affordable. And because I have all that medication, I am much healthier than I might otherwise be.

 I am grateful that I have a roof over my head, and I have always been able to provide a home for my kids. And as I start the process of applying for public housing, I am grateful that the Queensland Housing Department exists - and that even if it's a long waiting list, there will eventually be some suitable housing available for this next stage of my life.

And I'm grateful that we've always had food to eat, and somehow (sometimes it's a miracle) the bills all eventually get paid.

I am grateful that even when my brain fog's been really bad, I've still been able to write reasonably coherently most of the time. Writing is part of who I am, and if I lost that I would be devastated.

I'm grateful for the old dog who spends most of his time right beside me, and insists on naps at the right time. And for a cat who constantly causes trouble, but is very loving and knows when I most need a warm cat curled on a sore spot like a furry heat pack.

I'm grateful for that little bit of time after my divorce when I was still working full time, and was brave enough to take the financial risk of spending a couple of thousand dollars to take the kids on our only ever overseas holiday.

As with people, there's probably lots of other things I could add to the list, and will think of them after I hit publish.  My life is full of wonderful blessings.

This post written as part of Wego Health's National Health Blog Post Month.