Amazing Day

I am exhausted today - but I had the most amazing day yesterday!

Firstly, I received my quarterly payment from the church's pension fund (I'm classed as "temporarily retired"), just as I was down to my last $15. So now I can pay the bills and the rent. I can get groceries today, as the cupboard was starting to become bare.

Then, a technician came and finally fixed our internet connection. I signed up more than two months ago to upgrade my internet, which  was going to take three weeks. It's a long involved story, that ended up including Telstra's complaints department, and the Telecommunication Industry Ombudsman, but at last, I have  what should be a reliable internet connection, one which doesn't cut out in warm weather. (That's good, because summer is just around the corner.)

The paperback versions of my two newest books appeared on Amazon. (If you want the cat calendar, that's still only available at Lulu.)

And then a friend rang to ask if I was free to go to the opera.  She had a ticket to Carmen last night, and at the last minute was unable to go. She gave me her ticket, and I enjoyed the opera, and the pre-performance talk about Bizet's career, immensely.

I'm a bit tired today.  I was out past my bed-time last night. That means today's going to be a bit of a challenge.  But I'll have a sleep first, then I'll pay my bills, and get some groceries, and start to feel like I can handle life again.

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Have you started your Christmas shopping yet?

Take a look at the products produced by businesses listed in the Business Directory. 

As well as buying great products, you can help out someone with a chronic illness.

Lupus Book is now available from both Lulu and Amazon.

Prayer Request

As I write this, on a cool  Brisbane Spring morning, with clear blue skies, it's strange to think of a huge hurricane hitting on the other side of the world.

Today, I'm going to use the post to ask you to pray for those in the path of Hurricane Sandy, especially those who are not in great health.

Disasters are a challenge to anyone. The time recovering, often without electricity, water, phones or other basic services can be a major issue. It's worse if you're worrying about whether you're going to run out of medication before things get back to normal, or if you can meet your doctor's appointments, etc

New In The Business Directory

The latest addition to the Business Directory is:

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.)

Just in time for Christmas, here's some gorgeous Christmas decorations, as well as great gift ideas.

Remember any time you buy from any of the Business Directory businesses, you are not only getting quality products, but you are also helping people with chronic illnesses to help ourselves.  

Being Prepared

It's usually our street.
After the storm it was a watercourse.

As Hurricane Sandy is threatening the USA (well, part of it, I really don't have much idea of American geography), it's a timely reminder that summer storm season is on its way here too. (For those who don't know, I'm in Brisbane, on the east coast of Australia.)

A few years ago, when I was still in hospital chaplaincy, I went to a disaster recovery conference, and spent three days learning the current best practice in disaster recovery.  About a week after that we had what became known as "supercell Sunday" when what is variously described as a supercell storm, or a mini-cyclone, hit my suburb of Keperra, and some of the suburbs around it.  The suburb that gained the most publicity - which Brisbane people will probably remember - was The Gap. The Gap had the honour of having the worst of the damage.

It was amazing to me to watch everything I'd just learned about swing into action around me. It was also amazing to me just how unprepared I was, even though I'd been saying for a week, "We really should get a disaster preparedness kit ready."

So, here's what I learned, from the course, and from personal experience.

There is no substitute for being prepared ahead of time.

Before storm season begins, so now in Spring, is time to make sure we have everything we're likely to need.

A battery-powered radio, with spare batteries is essential.  We were without power for several days, and the only way to get news and information was with a radio.  It's also handy, here in Australia, to know what your local ABC (Australian Broadcasting Corporation) radio frequency is.  The ABC has portable broadcast towers that can be moved into position anywhere in the country if the normal tower is down, and it has the ability to isolate just the disaster area so as to broadcast information that the area needs without affecting programming to places. Don't do what we did, and go shopping for the radio after the storm has hit - they sell out very fast.

Some bottled water is essential.  When I was a kid, every time there was a cyclone expected my mother would fill sinks and the bathtub with water in case the water supply was cut off. You can do that if you know when the cyclone is expected to hit.  When a storm comes with no warning, it kind of doesn't work.  While I object to paying for bottles of water normally, it's handy to have one or two of the biggest container of water you can buy stored around the house somewhere, just in case.  Be aware that even bottled water has a use by date, so check it before the start of each new storm season, and if necessary replace it. Again, bottled water sold out very fast from the shops that were open. (Our local shopping centre lost its roof, so we had to go further afield.)

Food is also quite a good idea. Remember if you're without power for a week, that means no refrigeration or freezer for that time. So it is handy to have canned and dried foods available, along with powdered or long-life milks. We were fortunate that we have a stove with bottled gas, so we had the ability to cook. Mains gas supplies can be cut of in a disaster, just as electricity and water can.  If you're reliant on electricity or mains gas for cooking - make sure you have a supply of foods you can eat without cooking them.

And the big thing for those of us with chronic illnesses: make sure you keep ahead of your medication.  Throughout storm season, you really need to be sure you have medications for at least a week ahead. If the roads are cut and you can't get to the chemist, you have a big problem.

There is lots of help available in a disaster - but the more independent you can be the better.  For example, in best practice there will be a door-to-door check to ensure everyone is alive and safe.  After the storm, that check came about 48 hours after the event, and the poor young soldier who came to check on us looked like he hadn't slept at all in that time. There are two lessons from that, the first is if you're just waiting for help, it will come, but it will be probably be a while, and the second is that the rescuers are overburdened as it is so it's a good idea to avoid making extra work for them.

And if you can, help each other. People I didn't know came along and cut up the tree that was across my driveway so it could be taken away. They weren't part of the official recovery effort, just people from the neighbourhood who happened to own chainsaws. That meant my driveway was clear only a couple of hours after the storm. The official recovery effort reached our suburb days after - because the disaster in the next suburb was worse and therefore more urgent. We're not an especially close-knit neighbourhood. I still don't know my neighbours' names. But after the storm, everyone just helped out each other as they were able.

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Find some great Christmas gift ideas in the Business Directory.

New In The Business Directory

There have been a couple of new items added to the Business Directory this week.

We have souvenir teeshirts and other products for a band that doesn't exist, but probably should, and some gorgeous hand-knitted scarves.

Adorable Bat Foetus (Imaginary Band)
Tshirt
Canvas Tote Bag
Keepsake Box
Stainless Steel Water Bottle
Mug
Throw Pillow

Designed by Blacky Roach. (Blacky doesn't own the site, but does get a commission when his design sells.)

JulieYarnDesigns
Handcrafted scarves, etc by Julie (multiple autoimmune conditions)



Remember, when you buy anything from the Business Directory, you're helping someone with a chronic condition to help themselves.  

Changing

Old pic, from a service where I
used chocolate bars to tell the
Christmas story.

It's later than usual, and a very quick check-in today, because my head's feeling really strange.

I started out this morning with a new and strange experience a visual disturbance of flashing lights. Not fun, and when I posted it on the Sometimes, it is Lupus Facebook page I was given responses that it could be anything from my dry eyes to a migraine, but whatever see my doctor. (So it's on the list for this week's visit to the doctor.)

This morning was officially my last day as minister at Ashgrove West.  For me, that's really sad, and for the congregation it's sad as well. I'm still going there as a member of the congregation, but of all the places I've been in ministry, this is the one I've loved the most - and I only had 20 months there.

I didn't lead the service today, our wonderful Youth Worker Bec did, but I did get some time to speak - to thank the congregation for my time as their minister.

So one door is closing. What opens next, only God knows.

Anyway, I've spent most of the day asleep, and my head is feeling very strange, so it's back to bed again.

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Don't forget to check out the Business Directory for ideas for your Christmas shopping.

Get great gifts, and help out someone who has lupus or another chronic illness at the same time.











October's almost over, but you still have a couple of days to get Lupus Book at a discounted price.  It's available from lulu.com/spotlight/IrisCarden.

Wego Health Health Activist Awards for 2012

I just had an email from Wego Health, asking me to promote their Health Activist Awards for 2012.

I have to admit, I've been a bit slack this year.  Last year, I nominated heaps of great health activists, and a couple of them actually won awards (but not necessarily in the divisions I'd nominated them in.)

So far, I haven't nominated anyone, but I can think of a few people I ought to nominate, people who have helped put a spotlight on lupus awareness, and are there to support others online.

If you have a favourite health activist, you have until the end of December to nominate them as the best of the year.

The divisions are as follows:

• Advocating for Another Award - Awarded to someone who raises awareness, speaks out, and advocates for the health condition of someone they love. 
• Best Ensemble Cast (Non-profit, advocacy group, health organization) - Awarded to a group who advocates with tireless dedication and wide-reaching impact. 
• Best in Show: Blog - Awarded to someone who exemplifies the use of blogging to raise awareness and make connections. 
• Best in Show: Community/Forum - Awarded to someone who exemplifies the use of a community or forum to raise awareness and make connections. 
• Best in Show: Facebook - Awarded to someone who exemplifies the use of Facebook to raise awareness and make connections. 
• Best in Show: Twitter - Awarded to someone who exemplifies the use of Twitter to raise awareness and make connections. 
• Best in Show: Video - Awarded to someone who exemplifies the use of video to raise awareness and make connections. 
• Best Kept Secret - Awarded to someone in the online health community who is doing great work but hasn't gotten a lot of attention. 
• Health Activist Hero - Awarded to an inspiring, supportive, and knowledgeable Health Activist who has truly changed people’s lives. 
• Hilarious Health Activist Award - Awarded to the Health Activist who makes you laugh alongside their advocacy.  Nominate your favorite comedian.
• Ms/Mr. Congeniality - Awarded to someone who always has a kind word, a positive note, and a virtual hug. 
• Paperboy Award - Awarded to the Health Activist who always delivers the latest and greatest health news and research.
• Rookie of the Year - Awarded to a Health Activist who came on the scene in 2012 but has inspired the entire community. 
• Silver Stethoscope - Awarded to a healthcare professional who utilizes social media, online community, and technology to make the world a better place. 
• Trailblazer Award - Awarded to the Health Activist who is ahead of every curve, excited by new technology, and encourages everyone to join them. 
• Unsung Hero Award - Awarded to the member of your community who is always helping, advising, and sharing - but may not know how amazing and valuable they are. 

You can make your nominations here.

Just Seeking Attention?

I wanted to share with you a comment that was made on yesterday's blog post:

Anonymous26 October 2022 4:17 PM

The very next time I read a blog, Hopefully it does not fail me as much as this one. After all, Yes, it was my choice to read, however I actually believed you'd have something interesting to talk about. All I hear  is a bunch of moaning about something that you can fix if you weren't too busy seeking attention.
Take a look at my webpage ; overcome premature ejaculation

I'm not planning a direct response to Anonymous here, because let's face it, making fun of someone who has a website about their sexual dysfunction is just way too easy.

What I want to look at is the statement: "All I hear is a bunch of moaning about something that you can fix if you weren't too busy seeking attention." I have to admit, I'm indebted to  Anonymous for putting so succinctly an issue that people with lupus really struggle with. 

We don't look sick. Well, much of the time we don't look sick. There have been times I'm sure I've looked like a semi-animated corpse. We have random aches and pains, ranging from mild to severe through to "Oh God, just let me die already!" which can change from day to day. We often suffer from overwhelming fatigue. We avoid sunlight because it makes us sick and causes rashes. Many of us have food intolerances. We get brain fog, which makes us appear stupid even if we're normally quite intelligent people. Oh, and quite a few of us are really clumsy - inanimate objects like walls and floors attack us and we drop and break things all the time. That's without any of the major, life-threatening issues of lupus.

And guess what? All of those things are invisible. No-one else can see our pain. No-one else can feel how utterly exhausted we become from doing some basic everyday task.

My ex-husband often told me I was lazy. (I wasn't diagnosed back then, I just got exhausted really easily for no known reason.)

Because we don't look sick, there are people who think we are hysterical, attention-seeking, or moaning unnecessarily. 

And there are people who think there is an easy "fix" for lupus and other autoimmune disorders.

I've had all sorts of unsolicited medical advice from people who are not doctors and don't actually know what lupus is. The advice ranges from we cause our own autoimmune disease, to drinking lemon tea will fix it. Someone has recommended I take low-dose naltrexone (a drug used to treat drug and alcohol addiction), even though it hasn't been approved as a treatment for lupus in any country on earth, and the research is at such a rudimentary level that it's years away from being proved one way or another. The unsolicited advice lupus patients get covers the whole range from utterly useless and ineffective to the downright dangerous.

When it's a stranger, like Anonymous who wrote the offensive comment, we can laugh it off. It might hurt a bit, be a little confronting, but really, it's just an ignorant person spouting off. 

When it hurts most is when it's a close friend or a family member, someone we were counting on for support.   

Yes, it is a challenge for the people who love us to support us through the bad times. We actually know that. We often feel bad about that. I know I feel guilty about what a lousy mother I am, and when I was working about how the work I did for my congregation was so much less than they deserved. None of us want to be a burden.  But when it comes down to it, I didn't choose to have lupus, nobody chooses to have it. I live the best life I can with the limitations I have - which is what every other lupus patient I know is doing, too. 

And those people who do love us and stick with us through the bad times: they are God's most precious gift to anyone with lupus, or any other condition like it.

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Don't forget to check out the Business Directory, when you're doing your Christmas shopping this year.

Help someone with lupus or another chronic condition to have the dignity of earning their own income.

Cool Morning With Chance of Heavy Fog

Every time I start to think my brain fog might be easing up, I discover I've done something really, really, dumb.

Dumping the old coffee grounds into the cup I'm making my fresh coffee in, counts as really, really dumb for this purpose.

After almost two weeks of not working, I can say that the thing that has improved the most is that I'm not so stressed about doing things like this.  That's not because my work was in itself stressful, but because people were depending on me to get things right.

When it's my own coffee I'm dumping used coffee grounds into, the only person who has to deal with it is me. When I mess up leading a worship service, the whole congregation deals with my brain malfunction.

There are times, of course, when my limited ability to think clearly is going to affect my family.  I needed my daughter to help me fill out a form a couple of weeks ago. There were numbers in it. After three attempts, where I kept putting the numbers in the wrong columns, I finally got that right, and realised I couldn't make a calculator work to add up said numbers. That's when I got my daughter to take over.

Numbers and calculations not working for me is going to be a problem, for me and the family. I've just looked at my bank account and found that the balance is a bigger number than my rent that comes out today. That's good.  It's not a very much bigger number (as in, not big enough to cover next week's rent, or the bills that are waiting.) That's not good.  Now, I know I have money coming in, and bills to pay, and things like that.  And normally, I could work it all out. Right now, the closest thing to managing a budget I'm doing is praying that it will work out without me.

This bothers me a bit, in that I've always been very careful with money. I've always had to be very careful with money.  I still do have to be careful with money - it's a scarce resource and it's just become scarcer. I was able to shed responsibility for my work. But shedding responsibility for providing a home and food for my family is a different matter.

If I had a husband, or if my sister were still here in Australia, I could ask them to take control of my finances for a while. As it is, the only family I have are my kids. And if my brain fog continues to worsen, maybe I have to ask whether at 18 and 21, they are ready for that responsibility?

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Money is a big issue for everyone with a chronic illness.  Doctors and medication cost, and our ability to earn our income is reduced.

When you buy products from a business owned/run by someone with a chronic illness, you help them to achieve financial independence.

Please consider looking at the businesses listed in the Business Directory page, when you're doing your Christmas shopping this year.

Energy Deficiency

Since I stopped work, most of what I've been doing is sleeping. I've caught up with a few friends for a coffee now and then, but apart from that my greatest level of activity has been migrating between the bed and the couch for sleeping areas.

But I've just about run out of clean dishes, and bench space, and the bins are overflowing.

My daughter's hobbling around on crutches with a dislocated knee, and my son's lying in bed with a sore throat.

So it looks like somewhere, I have to find the energy to do something. That's a bit of an issue, because my body just wants to sleep.

It's back to my pottering around - find the energy to do a tiny bit of work, then have a nap, then a tiny bit more work.  Things don't improve dramatically, but at least it slows the rate at which it all gets worse.

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Don't forget to take a look at the Business Directory, for Christmas gift ideas. 

And if you were planning to get a copy of the Lupus Book, remember the 10% discount ends at the end of October.  You can purchase your copy here.

How Do I Feel?

I was asked yesterday how I felt about stopping work again.

Strangely, I haven't felt anything yet. I think I need the headaches and brain fog to settle a bit before I can actually work through the implications of it.

I know that financially it's going to be hard. I haven't tried to work out a budget yet - I can't concentrate that well. And that's likely to cause a problem.

Beyond that, I know I had two years of not working before and I somehow survived it - although I really can't remember how.

This time around, I have my blog established, so I know I have something to do, and I think it's worthwhile - there's more than 500 people following the Sometimes It Is Lupus Facebook page now, and at times there are discussions where people are quite active. Unlike a paid job, I do what I'm able, when I'm able.  There's no deadlines. If I don't post for a week or two, the only consequence is that some friends who follow my blog will call to check that I'm still alive.

So far, what I'm mostly doing with my time is sleeping. But some time soon, I have to wake up and try to get my head together long enough to do some concrete planning on how I'm going to survive.

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This Christmas, make a difference. Buy at least one of your Christmas gifts from someone with a chronic illness. Take a look through the Business Directory - you'll find some great gift ideas. 

"At Least You Don't Have Cancer"

One of the things that bothers me, and I suspect that it bothers other people with lupus, is when people minimise what we are going through.

A big point of comparison seems to be, well it could be worse, you could have cancer.

I know people with cancer go through a really rotten time, but I don't know that their really rotten time is worse than ours.

For example, people who take chemotherapy drugs for cancer usually do so for a limited time.  A cycle of a week on and a week off for a couple of months - something like that.  I've been on methotrexate (a chemotherapy drug, also used for cancer) for years now, and cannot foresee a time when I will not have to take it every week.

One of the standard treatments for cancer involves cutting out the cancer - actually removing the disease, and then using radiation and chemotherapy to make sure there is none of it left.

With lupus, the disease is in the immune system - which is throughout the entire body.  Cutting out the diseased part is not a possibility - because every part is the diseased part.

I've had cancers twice.  As an infant, I had a spitz tumour on my face (there's a scar near my left eye from it).  I don't remember it, but my mother has told me that it was terrifying to have a growth constantly getting larger on a baby's head, and it was difficult to find a surgeon who would take it out. But eventually they did find a surgeon, the tumour was removed, all of it, and although it had spread a bit, it had not made it as far as my brain, so all was well. The other cancer was only a couple of years ago, it was a basal cell carcinoma on my nose. (Yes, if you're going to get a skin cancer, the place to have it is right in the middle of your face.)  My GP blames my lupus drugs for causing this one - although my rheumatologist says it wasn't caused by them at all. Again, it was cut out. My nose now has a strange shape, but that's the only lasting consequence.

Not all cancers are as simple to cure, but quite a few are. They are localised to one place and can just be cut out.  You can never just cut out a person's immune system.


There are a lot more awareness campaigns about various cancers, which means there's more research being done, and more support available for people with cancer.  Most people have heard of leukaemia or breast cancer - they're not as common as lupus, but everyone knows about them, and lots of people give money to help research a cure.

Like cancer, lupus can and does leave people disabled, and even kill people. They're both horrible diseases, that no-one would ever want to go through.

So please, if you know a lupie, don't make light of their suffering. And don't say something as offensive as "Well, it could be worse, at least you don't have cancer."

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While you're here, please copy the image at the right, and post it in your Facebook, Google+, Twitter, Pinterest, everywhere you are on social media.  Or just email it to your friends.

People living with a chronic illness often find our ability to earn an income is limited.  I'm trying to get a campaign started (with no budget, of course) to encourage people to buy at least one Christmas present from someone with a chronic illness.

The Business Directory is full of businesses run, often from home, by people with chronic illnesses.  Buying from any of us helps to manage the cost of living with a chronic illness, and can go towards the dream of being financially independent.

If you have lupus or another chronic illness, and have a business you'd like included in the directory, email me iris@sometimesitislupus.com with the details. Listing in the directory is free.

Some Christmas Gift Ideas From The Business Directory

Here's just a quick look at some Christmas gift ideas from the Business Directory.

Bracelets Beads and Bling has an album of Christmas-themed jewellery, but also has lots of beautiful items for any time of the year.

31 Inspirational Emotions does laminated pictures, messages, permanent cards, etc.

Craftego has some amazing handcrafted jewellery.

warmnfuzzyfibrearts has a huge variety of items, from the shoulder wrap hot/cold pack below, through to jewellery.

There's heaps more. Take some time to click through the businesses listed. You might be surprised at what you'll find.

Christmas Is Coming (Yep, Seriously)

Check out the Business Directory

I know Christmas is almost upon us, because  I've just got the letter from the Real Estate Agent giving me the choice of renewing my lease (with increased rent, of course) or ending it. It's a bit sneaky, because this time, they've made it a six-month lease instead of 12 months, so I guess that means the rent's going up in the middle of next year, too.

Isn't the Festive Season wonderful? Prices of pretty much everything go up for the new year, presents to buy and for those with kids at school, all the school stuff for next year as well.

For me, this is going to be a bit rough, because, having stopped work, my income's gone down again. I'm going to have to do some creative budgeting from here.

So let's get to the point.  I'm not the only one in this situation.

All around the world, there are people whose ability to earn an income has been reduced because of their health.

This Christmas, can you do us a favour?  Can you buy just one of your Christmas gifts from someone listed in the Business Directory? You can get a great gift, and you help out someone who really needs your business.

Results, But No Answers

Well, the result of my brain scan is that my brain's in excellent condition.

My blood tests were also excellent, except for a cholesterol issue.

My GP's best suggestion as to the cause of my headaches and brain fog are because the 30% time I was working might have been too much. Her recommendation: rest.

Well, I've been here before. I had two years to rest last time. So, I guess, I can handle some more rest.

Just out of interest, and because I don't eat foods with high saturated fats, I asked whether any of my medications could have been causing the cholesterol issue.  The GP looked at my file, and came up with an ominous suggestion - let's have a medication review.  What's ominous about that? I have to bring all my medicines in! (Apparently my list isn't enough.) Taking ALL my drugs into the GP's surgery next fortnight - That's going to be a challenge!

Proof

CT scan of my brain.

This picture, taken at about 9am today, is incontrovertible proof that I do have a brain. (Or at least I did about 9am today.)

Whether or not it shows anything wrong, I won't know until I see my GP this afternoon.

Between now and then, my headache and I are going to have a very long nap.

Whatever is going on inside my head, the headaches and brain fog are continuing, and I am really looking forward to them stopping.

Blood In The Water

awesomeanimals.cheezburger.com

In the online world, it seems that men can sense when a woman is feeling vulnerable - and the sharks gather.

I never did the club/pub scene, so I don't know if it's like that in the places where you could meet strangers in real life. It probably is.

The past couple of weeks, I've been feeling really vulnerable.

Brain fog has been so bad that I've stopped working. My whole body is aching constantly, and I can't eat without feeling that the food is just sitting in the middle of my chest (which is painful). So most of the time, I'm opting to avoid eating. Along with that, I have my own little personal fireworks extravaganza going on inside my head.

I have to admit that right at this time, I would love to have a boyfriend or better, a loving husband, who could hold me in strong safe arms, and help me to feel better about how horrible everything is.

But, I don't want the man on Google+ who said "hello", and when I said "hello" said, "so we are very best friends now, aren't we?" Um no.

Or the man on Google+ who keeps sending me messages "ADD ME" and "ADD ME TO CHAT". Apart from the "I don't do chat", I haven't replied to him. But he has sent me many, many messages.

And then there's the men who go through my profile pictures, to tell me how sexy I am. (Strangely, even the pictures of books I've written are very, very sexy. So far my cat isn't. My dog's had compliments, though.)

I could, of course, just give up on the internet. But with the constraints of my body at the moment, the internet is pretty much my entire life.

LATER: I just took a look at the profile of one of my most persistent "sharks".  Turns out he's only two years older than my daughter.  Ewwwwww!

Shameless Self Promotion

Given that I am newly unemployed, and in need of income, I'm going to indulge in some shameless self-promotion.

These are my books, what they are about and where you can get them.

This is Mr Bumpy's Habits of Effective Cats 2013 Calendar.  It has cute pictures of Mr Bumpy, with a couple of appearances by Mr Woof and the Rat Collective, with Mr Bumpy's hints on how to be a Highly Effective Cat.
It is $16.70 (Aus) plus postage from Lulu.

Lupus Book, is designed for helping keep track of pills, appointments, questions for the doctor, etc.
It is available for $12.60 (Aus) plus postage from Lulu.  Note, this is a special for October Lupus Awareness Month and will be $14.00 from November.

Cat-it-orial is the best of the first year of cat-it-orials from Mr Bumpy's blog mrbumpycat.com.
The paper version is available from Lulu for $15.00 (Aus) plus postage.
The Kindle version is available from Amazon for $3.00 (US).

Group Meeting is a novella (short novel). It's a psychological thriller, set in an institution for the criminally insane. Some of the residents are being bothered by a girl who only they can see. Can people share the same hallucination? Or is the institution haunted?
The paper version is available from Lulu for $12.38 (Aus) plus postage or from Amazon for $12.00 (US) plus postage.
Epub version is $2.00 (Aus) from Lulu.
Kindle is $2.00 (US) from Amazon.

Karlee is a supernatural horror novel.  If you childhood imaginary friend reappeared and promised to solve all your adult problems for an unnamed price, would you take the deal?
Paper version from Lulu is $12.51 (Aus) plus postage, or from Amazon is $12.00 (US) plus postage.
Epub version is $2.00 (Aus) from Lulu.
Kindle is $2.00 (US) from Amazon.



And I also have a range of teeshirts, mugs etc with my own designs on them available from Iris' Shirt Shop.


Update 22 November 2022

My new book, Beside Still Waters, is a compilation of sermons and brief reflections on Scripture.
It's available in paperback and epub at Lulu and in Kindle at Amazon.

Peace

Well, I spent yesterday and last night crying over the disaster in church yesterday morning.  My kids want me to stop ministry again, at least until have seen a neurologist (however long that waiting list is.)

I've made an appointment to see my GP tomorrow to look at how to handle this awful brain fog until I finally get that appointment.

This morning, I spoke to the Presbytery Minister.  I'm now on leave until the end of the month - then I am finishing up in this role.  He says there will be work around any time I feel well enough to handle it again.


 So, now it's back to Centrelink - to tell them I'm not working any more, so hopefully, my pension will be increased again.

Yesterday, all of this seemed overwhelming.  This morning, in my prayer time, I started to feel at peace.  I don't know how I'll survive financially.  I don't know if I'm getting better or worse. Half the time I don't even know what day of the week it is. But somewhere in this, God is with me.

The decision, at least for the immediate future, has been made, now.  Whatever happens, God will take care of me.

So, on to tell Centrelink the news.

Oh, and if you've ever considered buying one of my teeshirts or books  - anytime now would be great (I'm going to need the money.)

Lost: One Brain, If Found, Return Immediately

Before I cried off the mascara!

I messed up the church service today.

Firstly, I left the chorus out of the first hymn when I did the powerpoint for it - or at least left out some choruses, meaning everyone was struggling to try to fit the verse words into the chorus music.

Then, I realised part-way through the sermon, that I'd apparently left out several paragraphs I thought I'd written - there was a sudden jump so that it made no sense whatsoever, and I couldn't remember what I'd intended to say.

Then, I missed the communion hymn.

By the time we actually got to communion, I was so upset with all the mistakes I'd made, that I couldn't stop myself crying (absolutely, just what you need is the minister sniffing and having mascara run everywhere during the communion). And I read the narrative of institution (that story about the last supper, when communion was started) twice.

All of this means, I was suffering from a big brain fog problem, not only today, but also when I prepared the service.

I'm on a waiting list for the neurology department at the Royal Brisbane Hospital. I don't know how long that waiting list is, or what they can do for me when I do get my appointment. In the meantime, my memory and my thought processes just seem to be getting less and less reliable. At the same time, my headaches are becoming more frequent and more intense.

For me, I think the brain fog is the worst part of lupus.  Pain, I can take. Fatigue, I can just sleep through. But not being able to rely on my own mind - that is frightening.

New in the Business Directory

Adding a few new things to the Business Directory today.

If you look in the books section, you'll see added to the flash widget "Hallucination" by Kim Green.

Kim has lupus and she's written a novel about a woman with lupus.

You can get it in Kindle Edition from Amazon.

Or the printed version is available at http://hallucinationthenovel.com/.

Next we have our first professional musician on the Business Page JoAnna Johnson, The Soul Stringer.

JoAnna Johnson, The Soul Stringer

JoAnna's goal is to use her musical talent to raise lupus awareness.

And there is Alison Rothbaum's business Empowering Patients LLC. It took me a little while to get my head around what Alison does, because I've never heard of anything like it before.  Alison actually accompanies patients to their appointments, tests, etc. She helps them to understand what is going on, and helps them to organise their lifestyle around the demands of their chronic or autoimmune illness.

Weight Loss Group - A Positive View

It's Thursday, which means I have weight loss group tonight.

I feel very strange this week, trying to come up with a topic on healthy eating and lifestyle, when I know that for the past week I haven't had the energy to eat food - I've been living on coffee and Ensure.

So tonight, instead of looking at what we should be eating, I thought of looking at one of the "recipes" in Dr Dorrie McCubbrey's book How Much Does Your Soul Weigh? 

In her book, she suggests that the answer to weight problems isn't so much in what we eat but in what is happening in our minds and souls.

The last chapter is a series of "recipes" for the soul.

Tonight, we're going to look at Recipe #11 (Happiness): I accept myself exactly as I am.

We will list the things which we don't like about ourselves.  Then look at those things from the point-of-view of a close friend (someone who knows us really well), and give ourselves the positive view of those things.

Often the messages we give ourselves about ourselves, are very negative. And often, they are not true. This exercise is about seeing ourselves as we are.



Reference:
McCubbrey, Dorrie. How Much Does Your Soul Weigh? New York: HarperCollins, 2002.

Lupus Book

front cover

My copy of Lupus Book has arrived.

Yes, even though I wrote it, I still have to order a copy from the publisher the same as everyone else. That's the nature of print-on-demand publishing.

I've started putting information into it.  It might take a little while, but once it's up to date, it should be a simple matter of just making notes in the appropriate places when things change, or when I make new appointments, or go to the doctor, etc.


So what will you find in it?

First there is a personal information section, to record basics of name and address, medicare and health insurance details, allergies, etc.

The next section is an address book. The first page is for emergency contacts, then a page for General Practitioner, Rheumatologist and Pharmacy.  Then there are pages for other medical/ therapeutic contacts.

Next is a section for listing medications.

Medications pages

As medications change, there is space to simply cross out the line that is no longer accurate, and to write another line.  (There's a number of pages for listing medications.)


The biggest section is the appointment section.

Each double-page is for a single appointment.  There is space for the details of time, place and who the appointment is with.  There's a space for "homework" from your last appointment (eg do your blood tests at set times, see a physiotherapist, etc, or get a new referral from your GP).That can be filled in straight after your previous appointment, so you don't forget any things you have to do.

Next is a section for symptoms that are new, changed, etc.  As things change, they can be noted, so that when you get to the appointment, you don't forget.

Appointments section

There's a place for questions you want to ask at your appointment, and one for any prescriptions you need, and a space for any other notes.

(Referral letters, blood test orders, etc, can be paper-clipped to the appropriate pages.)

I put this together because I desperately needed it. Brain fog has meant I'm losing track of everything.  I've published it because I suspect if I need it others may also need it.

If you try it and think of things that you believe would be useful in future editions, I'd love to hear from you.

Available from www.lulu.com/spotlight/IrisCarden

For October (Lupus awareness month), there is a 10% discount on Lupus Book. It's available from the publisher www.lulu.com/spotlight/IrisCarden.