Monday, 29 August 2011

A Better Day

I'm feeling much better today.

I still have the rash on my arms and legs.

Right now, I'm a bit tired and needing the air-conditioner on because I've just changed the sheets on my bed (big effort - glad it doesn't happen every day!) So I'm blogging while I have a rest.

But overall, I feel better. The headache's already settled, and my pain seems back to "normal" levels (normal for me). I'm still a bit down, but not as depressed as I felt over the weekend. My old attitude of "well, this is the situation, it's time to find a way to deal with it" is back.

So why did I seem so suddenly sick over the weekend? Everything went haywire, and did so quickly. I'm still going to have my blood test and talk with my doctor, just in case things are going bad again. But right now, I feel pretty much "normal for me."

I don't know what happened.  I did do a half hour of housework on Friday, straight after my workout at Curves - and maybe I need to separate those two activities with a nap.  It could be as simple as I overdid things.

This is a constant process of learning. Every day my body changes - and I have to be in tune with how much I can do and when, and how to respond when suddenly the amount I can do changes.

So, from the upside after a down weekend - I'm having a great day, and hope you are too.

Sunday, 28 August 2011

Could be a new flare

I suspect I'm starting a new lupus flare. Here's what tipped me off to this possibility.


I'm showing signs of depression - you might have got that from the tone of my last post if you read it. Things I would normally find a way to deal with are just getting too much. (I'm usually very creative at finding ways to deal with almost anything. This just venting about things I can't control isn't the usual me.)

I'm also feeling as if I'm on the verge of crying all the time. This started yesterday, but yesterday I was making French onion soup, and chopping up 1.5kg of onions and caramelising them for an hour can have that effect.  The onions are all gone now. (I'd thought the soup would be lunches for the week - turns out that even people who don't like onions loved the soup and it's really all gone.) I still want to cry, and not just because my soup's all gone.

And I'm binge eating, uncontrollably. That's a sure sign I'm not coping. It goes with depression - it also goes with intestinal problems I have. I can't tell when I'm hungry or when I'm full.

Rashes: Every time I do anything much at all, my cheeks and nose are turning pink - getting brighter (and feeling drier and more irritated) the more I do.

A little bumpy rash is also starting to come up on my arms and legs. This rash isn't so severe it's noticeable from a distance, yet, but if I run my hands over my skin, I can feel all these tiny rough bumps. Sometimes they get itchy, but if I scratch, they come straight off and then I have tiny sores.

Fatigue: My naps are getting longer, and I'm able to do less and less before I need them.

Pain: The pain isn't severe, but definitely it's not as well controlled as it usually is. Aching ankles and knees made it hard to sleep last night.

Intestinal problems: I'm suffering from reflux, even though I'm not consuming lactose. I'm suffering from irritable bowel symptoms, even though I'm not consuming gluten. (You don't want the details of either of those issues!) "Hungry" and "full" signals seem to be getting mixed up - I'm binge eating, because I feel like I'm starving all the time, even though intellectually I know I have to be over-full.

Temperature: Here in Brisbane, it's the last of winter. It's cool weather, and days and days of drizzling rain have made it seem cooler. I still need to put on the air conditioner to make it cool enough for me to sleep. I'm hot when everyone else is cold.

Headaches: I'm getting headaches.  Fluid tablets help to relieve them, but they don't go away completely.

Anyone with lupus who is reading is now nodding and thinking, "sounds familiar." A flare affects us all differently, of course, but we all have a list of symptoms that tell us we're getting sick again. This is pretty much my whole list!

So where to from here?

I'm not due for my regular blood test for another month, but I have a spare doctor's referral for one, so I'll go and get some blood taken early this week. That means the results will be ready by Thursday, when I have my monthly check-up with my GP.

I do what my body tells me to do. I have longer naps, and I start to look at my "to do" list and start working out what's essential, and what's not - and how I'm going to handle whatever is essential.

Friday, 26 August 2011

Some days it's lose - lose with lupus!

The basic things healthy people take for granted sometimes get just too much. Things like having a home to live in and the means to look after that home.

I sometimes think when the kids have grown up and the pets have left this life, I could live in a caravan instead of a house. Something so small even I could keep it clean. Maybe then I wouldn't always be worried about how long I would still have somewhere to live.

A while back I posted that our wonderful cleaner, who'd been with us for years, had suddenly disappeared, no message, no good-bye, and when I'd tried to ring his phone number it had been disconnected. For about  a fortnight I tried a grand plan to organise myself and the kids to do all the housework ourselves. It didn't work. I called the cleaning agency.

Since then, the agency has sent four cleaners. The first two did one clean and left. The third was sick when she arrived, and said she'd barely finished the previous job, so we had a cup of coffee and she left. A fourth came yesterday to look at the job. He was doubtful.  The house is far too untidy for him to clean properly. He could vacuum the middle of the lounge room, but can't move the lounge chairs to vacuum under them. (If I want furniture moved so it can be cleaned under, I have to do that myself.)  There's really not much at all he can do - tells me he's a cleaner, not a maid. But he's willing to have a try, if I pay him to come weekly instead of fortnightly. It's going to betray my bitterness here, but I must tell you, the agency's advertising slogan is: "Hard to believe, but we LOVE housework!"

So where does that leave me?  I have no choice but to pay the man $60 per week for him to do the bit he's willing to do. (My income is from 30% time at work and a part of a disability pension, so $60 is a lot of money.) As for the rest of the house? I'm having trouble getting through to kids that tidying up after themselves is important. (I haven't mentioned it before, but both my kids have Asperger's Syndrome.  It's a type of high-functioning autism. They're both incredibly intelligent, but there's no way known to humankind to motivate them to do something if they don't see the point.)

Apart from paying the man his $60 per week?  Then I push the kids to do whatever I can get them to do. And I have to do the rest.

How to do that will be interesting.  I've just done half an hour of housework. That entailed doing the breakfast dishes and sweeping the kitchen.  I'm exhausted (and I still have actual work to do for my job - I don't have a service written for church this Sunday.)  My face is burning, with a lovely red rash that spreads across my nose and cheeks whenever I exert myself.  And now, I'm shut away in my bedroom, with the air conditioner on full blast (even though it's winter) so I can recover from what is a daily - more than once daily - task.  And if I want the carpet under the lounge chairs vacuumed - I need to move them.

Now, lets add some more information I haven't given you before. This is a rented house. If I can't keep it clean, I can be evicted. Already, I'm finding that maintenance I have asked for at two successive house inspections just hasn't been done, with no explanation. That's a fair sign the owner or the real estate agent isn't happy with me.

Maybe I'll end up living in that caravan sooner than expected!

Update 28/8/11

The latest new cleaner's just been.  He spent his two hours in just the bathroom - I'm sure it wasn't that clean when we moved in! Even the walls and ceiling are clean. Next week, he says, the bathroom will only take half an hour, and he'll get the next section of the house up to the same standard.  It might have initially sounded like he would not do much - but has become clear, that with him on the job, the house will be incredibly clean.

Monday, 22 August 2011


The problem with a gluten-free and lactose-free diet, is that there's so much that I end up missing out on. What I don't miss out on, sometimes takes more work than seems necessary.

I do the old-fashioned thing of having a baking day each week, so that I can put food in the freezer to ensure I have things I can eat throughout the week.

Most of my groceries, I buy on-line. It's easier because I don't have to push a trolley around a supermarket, and the delivery person usually brings my shopping inside to the kitchen for me to put away. Physically, it's easier. In terms of budget, it's better, because I'm not tempted by all the things along the aisle that I might otherwise have bought on the spur of the moment. There's nothing like sticking to the shopping list to save money!

Unfortunately, some foods are just hard to get at the on-line supermarket. In fact, at times, I go to three different supermarkets for my gluten and lactose free foods, because each stocks different things.

I was thrilled today to discover at a shop I rarely go to (because it's more expensive than the others), that they had gluten free beef ravioli in the freezer section.  I'm going to cook it tonight, and am desperately hoping it tastes the way I remember ravioli tasting.

Saturday, 20 August 2011

Furry Friends

Don't you love that just when you're ready to go somewhere in a white dress, the dog is covered in mud and refusing to do as he's told, so you have to pick him up?

Pets are a total pain - they're extra work when I'm not well, they limit the houses available for my family to rent, they make it hard to go on holidays and pet food and vet bills are an extra drain on the budget. I got them for the kids, but I'm the one who looks after them.

So why keep them?

Well, sometimes, they're also a comfort. The dog lying on my feet when my feet are cold is a comfort. And at nap time, my elderly arthritic dog understands completely and lies down beside me. The cat who yowls and demands, also leans against sore joints and purrs, massaging and warming.  On days when I don't have the energy to go anywhere or do anything, they're happy to just sit with me and keep me company.

Friday, 19 August 2011

"You're not Robinson Crusoe"

Right now, I'm lying on the couch, feeling sick.  I had plans for today - I was going to go to my church's adult fellowship meeting this morning, and then my local Curves in the afternoon. Instead I'm wrapped up in my soft blanket - the one my dog and cat both insist on sharing, with an upset stomach.  This isn't lupus - I can tell because my 17-year-old is similarly wrapped up on the other couch, complaining of an upset stomach.

Anyway, this is giving me time to read some of the sites that help remind me I'm not alone.

Today, I'm reading The Lupus Magazine. One of the articles that took me by surprise was by Annessa Ann Babic. Among other things she talked about was nosebleeds.  I've never heard or read before that this was part of lupus - but most of my childhood and teenage years I was plagued by nosebleeds.  I had the arteries in my nose cauterised three times. She also talked about bruising - and I have always bruised easily.

This is stuff I never knew had any cause, it just seemed that I was particularly unlucky. And, it didn't help with my social life - it's hard for a kid to make friends if she spends all her time with something over her face soaking up blood. Of course, my lupus was not diagnosed until I was 40 - so all of the strange things that happened to my health until that point were just not put together to add up to anything.

When I did my first degree, the radio and television production lecturer used to tell our class, every time we made a mistake: "You're not Robinson Crusoe." We heard this so much time that we called ourselves "Robinson Crusoe Productions" in one of our film assignments.

The thing with lupus is that, it's easy to feel like Robinson Crusoe sometimes. It's easy to feel that no-one else knows what it's like - that the things I have been through only affected me. What I love about sites like The Lupus Magazine, and But You Don't Look Sick is that they remind me I'm not Robinson Crusoe. When I'm having a bad day lying on the couch, someone else is too (not just my son.) If I spent a ridiculous proportion of my childhood mopping up blood as it poured from my nose, someone else did it too. If my toes feel like iceblocks, even when the rest of me isn't all that cold, someone else's does too.

There's an entire community of people with lupus and other chronic diseases - a community that goes past national and cultural boundaries - united by our common experience.

For all of you, whatever site I've found you on, I'm glad you're out there. I don't feel alone. Thank you.

Wednesday, 17 August 2011

From the bookshelf: The New Glucose Revolution

Source: Brand-Miller, Prof Jennie. Foster-Powell, Kaye. Colagiuri, Prof Stephen. The New Glucose Revolution. Sydney: Hodder, revised ed. 1998.

Much of what we have been taught for many years about carbohydrates (eg sugar = bad, complex starch = good) has been based on a theory that the body would break down sugars more easily than starches. It seemed like a good theory – but has failed the test of actually working in real human beings.

The researchers who wrote this book set about testing what different carbohydrates did in the human body, by using actual human beings, getting them to eat different carbohydrate-containing foods, and measuring what happened to their blood sugar over time.

They then classified foods according to that affect, along what is called the Glycaemic Index (GI)– a numerical value to indicate what each individual food will do to blood sugar.

What happens when carbohydrate is absorbed by the human body varies according to the GI of a particular food. Foods with a low GI release sugar into the blood slowly – blood sugar rises at a slow, steady, rate, the body produces insulin at a slow and steady rate, and the blood sugar then releases at a slow and steady rate. Foods with a high GI release sugar into the blood quickly – blood sugar rises greatly and suddenly, the body produces a lot of insulin to control the blood sugar quickly, and the blood sugar drops suddenly.

This is important because: sudden spikes and drops in blood sugar just aren't good for the body and sudden spikes and drops in insulin can lead the body to “insulin resistence” - a body that just doesn't pay any attention to what insulin is doing anyway - a precursor to diabetes. (Uncontrolled blood sugar is even worse for people who already have diabetes.) It also affects weight loss – sudden rises and falls in blood sugar can make you feel hungry – keeping your blood sugar at a steady level can help keep you in control of your appetite, and helps your body burn the fuel you eat more efficiently.

The surprise is that the sugar we always thought was “bad” does not have an especially high GI, and the complex starches (eg flour) we were taught were “good” or at least “better” than sugar, can have a much higher GI.

It is important to note that all it takes to lower the overall GI of a whole meal, is that you have some low GI foods – so there is no need to avoid all high GI carbohydrates, just moderate their effect by having some lower GI carbohydrate foods at the same meal (for example, have half and half sweet potato and regular potato.)

So what things affect the GI of foods? Looking at the book, some things are inexplicable – that's why each individual food is tested.

(Full diagram pp42-43)

  • Starch gelatinisation: the less gelatinised (swollen) the starch, the slower the rate of digestion.
  • Physical entrapment: the fibre around beans and seeds etc acts a physical barrier, slowing down digestion
  • High amylose to amylopectin ratio this is the ratio between different types of starch in the food - basically it affects how the starch can be gelatinised – it means things like Basmati rice is better than other kinds of rice.(It's the kind of thing you and I can't tell from looking at a food product, unless it has its GI written on the label.)
  • Particle size The smaller the particle, the easier to digest – finer ground flours tend to be higher GI
  • Viscosity of fibre soluble fibre slows down the rate of digestion
  • Sugar Sugar, contrary to what we've been told for years, can slow down digestion.
  • Acidity Acids in food slow down stomach emptying, and therefore slow the digestion rate
  • Fat slows down the rate of stomach emptying, and therefore the rate of digestion (NOTE: this is not an excuse to binge on fat – this is only looking a the action of carbohydrate on the body – fat is a completely different issue. For optimum health, a diet has to be low in saturated fats as well as relatively low in GI.)

GI Values. High = 70 or more; Medium = 56 to 69; Low = 55 or less.
(Note, that for weight loss, the GI isn't everything we need to be aware of – we still have to look out for calories, fat, and the nutrient value of each of the foods we eat. Where there's a choice – the low GI option will help keep your body functioning at its best, and help control your appetite.)

We also need to be aware that some things with a high GI (eg carrots) actually have so little carbohydrate in them that the effect on blood sugar is negligable. Another term sometimes used alongside the GI is the Glycaemic Load (GL) which takes into account not just the measure of GI, but the amount of carbohydrate you actually eat in a serve.

There is page after page of listings of foods with their GI and GL in this book, as well as a variety of low GI recipes. And the authors have put together more books with more food listings, recipes. Each of the authors is a leader in their particular field: nutrition, diet, and diabetes and metabolic disorders.

Very brief reference for lower GI foods – from pp 108 – 114

  • Burgen varieties (GI 31-74) Honey Loaf with Barley (GI 31) is the lowest GI of all mixed grain breads
  • Fruit loaf (GI 44-54)
  • Pita bread (GI 57)
  • Sourdough bread (GI 54)
  • Plougman's loaf Wholegrain (GI 47)
  • Pumpernickel bread (GI 41)

  • Custard (GI 35)
  • Ice-cream (GI 36-80)
  • Milk (GI 31)
  • Yoghurt (GI 14-36)

  • Apples (GI 38)
  • Apple juice (GI 40)
  • Apricots – canned (GI 64); dried (GI 30)
  • Cherries (GI 22) This measurement is for European Cherries – Australian may be slightly higher.
  • Grapefruit (GI 25)
  • Grapes (GI 46)
  • Kiwifruit (GI 58)
  • Oranges (GI 42)
  • Peach – Fresh (GI 42); canned in light syrup (GI 52)
  • Pears – fresh (GI 38); canned (GI 43)
  • Pineapple juice (GI 46)
  • Plums (GI 39)
  • Sultanas (GI 56)

  • Barley (GI 25)
  • Basmati Rice (GI 58)
  • Buckwheat (GI 54)
  • Bulghur/Burghul /Cracked wheat (GI 48)
  • Doongara Rice (GI 56)
  • Oat bran (GI 55)
  • Rice bran (GI 19)

  • Legumes (GI 10-70)
  • Soya Beans (GI 14-20)

  • Most don't have a GI value – containing very little carbohydrate
  • Peanuts (GI 14) are actually legumes

  • Pasta (GI 32-78)
  • Spaghetti (GI 38)

(Most vegetables are low in carbohydrate, which makes it difficult to measure their GI, and means they have a negligable affect on blood sugar.)
  • Peas (GI 48)
  • Sweet corn (GI 54)
  • Sweet potato (GI 44)

So, in terms of eating for better health, the main message is to be aware of the impact food has on our bodies, and try to incorporate some low-GI carbohydrate at every meal.

Saturday, 13 August 2011

Seeking Mr Right

For years, my Rheumatologist has had two standard lectures for me: "Stop trying to prove you can have a normal life" and "You need to get married."

The first is never going to happen, because, well, I'm me.

The second?

I'd argued about the second every time he raised it. But he insisted that I should be married: that I needed to be able to share the responsibility of running a household, managing a budget, raising kids, etc, etc, with someone else. That I simply couldn't keep going on trying to do it all on my own.

My recollection of marriage had always been that I'd always done everything on my own anyway, and that life was easier divorced.

But, after years of hearing how much married life would be so much better for me in terms of my health, I eventually started to wonder if it was possible to have the kind of relationship he was talking about - one where both people worked together and made life easier for both. (There's something very attractive about that idea, right?)

So, finally, I gave in and set up a profile on an internet dating site. I was totally honest and upfront in my profile, and consequently expected that no-one would be interested. (I'm an overweight, Christian minister, with teenagers and lupus and at the time was unable to work at all through ill health. And I said I was looking specifically for marriage.)

Strangely, there were men interested. Some I very quickly decided I was not at all interested in. But some actually seemed nice.

A year ago this week, I had my first date. That was with a very nice man, who I went out with for about a month. It didn't work out. We both had health issues and lived far too far apart to be able to keep travelling back and forwards.

I went back to the site and continued looking. I had lots of conversations with interesting people online, and even met a couple of people face-to-face.

About ten months ago I met Mr Wonderful. (Whether he will turn out to be Mr Right, I can't yet tell, but he certainly is one of the most wonderful people I've ever met.)

Now here's what my rheumatologist didn't take into account when he told me so often how important it was that I find a husband: you don't get married immediately. In fact, you don't get engaged immediately. There is this time, of unpredictable length, of simply dating, getting to know each other, establishing the relationship.  Well, of course, you say?

Here's where the lupus stuff comes in.  I have to budget my energy carefully. Seeing Mr Wonderful, as great as it is, takes energy. That means, instead of making everything easier and less demanding in life while I have someone to share everything with - what I have is all of those same responsibilities on my own that I've always had, and and additional demand on my time and energy. (Please understand, this is not a complaint. I love every moment I have with Mr Wonderful.)

Friends who understand the situation have tended to back off to allow me the time and energy to spend on establishing the relationship - but that means I miss out on the time I would otherwise have had with my friends.

So, if you have lupus and are thinking about pursuing a romantic relationship, what advice could I give you? Go for it! Just make sure, as with everything, you keep close account of the energy you have available, and budget accordingly.

And bear in mind, that there will be a time, of unknown length, when you are establishing a relationship not just sharing a life. Those of us who have been forced to look at our own mortality might be impatient with this kind of thing - because we don't ever know if we have time. (Remembering that women tend to be more anxious for a permanent commitment than men anyway, this can cause tension.) Try to be patient - if he is worth the commitment, he is worth the wait. If he's not worth the commitment, move on without wasting the effort of being resentful.

Friday, 12 August 2011

Watching "House"

My kids and I recently re-watched that episode of House when it was at last lupus. I remember the cheering and laughing that happened in our house the night we saw it for the first time.

The first series of House was shown on tv here just after I was diagnosed with lupus. In that first series, and through most of the second series, lupus got a mention in almost every episode. No matter what the symptoms of the medical mystery the episode focussed on, lupus was at some stage suspected.

It was a bit shocking for my kids. I was reading all I could about my condition, and realised it could do all kinds of strange and apparently unrelated things. Most of those things were unlikely to happen once the condition was diagnosed and being treated. Every week, they would ask: "could lupus really do that?" And every week, I would have to acknowledge, that yes, lupus could do that, but it wasn't likely to do that to me - what was being shown on tv was what could happen if the disease continued undiagnosed and untreated. My doctors and my medicines would make sure these horrible things didn't happen to me.

When I was looking for shoes - I went shopping with a friend who had diabetes, and my son was with us.  The shop assistant asked if we had any conditions affecting our feet, and we each told her what our chronic illnesses were. The shop assistant said, "My mother's got lupus, she's dying..." and began a detailed account of her mother's condition. My friend cut her off, saying: "but that's not going to happen to Iris, she's doing everything right to look after herself."

The look on my son's face told he he's heard far too much. When the shop assistant was out of site, he asked me why lupus (and my friend's diabetes) could affect what shoes we wore. I explained that there was a thing called vasculitis which could affect people with chronic illnesses if we didn't look after our feet properly. It could be very serious, so we were making sure we would not get it.

It's hard for kids. Mine are much older now. At 17 and 19, they are well and truly able to handle most things. But at 13 and 15, it was harder. There was no point in trying to protect them from hearing the possible bad things - they would hear it no matter what. My only option was to explain as simply and as honestly as I could and reassure them that everything was being done to ensure the really bad stuff would not happen to me.

Thursday, 11 August 2011

Getting sick - doubled

I have a stomach bug.  I knew I was going to get it the night before last when I came home to find two teenagers throwing up. We're a family that always shares these kinds of things.

What makes it worse for me is that suddenly all my joints are hurting again.  My doctor says these things happen, a bug will cause lupus to flare. So, when I'm sick, I'll get sicker. Something about this seems incredibly unfair!

When I told her my lupus was fine while I had the flu, I had no joint pain at all, she was mystified. I said I'd enjoyed the flu and missed it now. She said, "No, you don't want the flu."

So, I've missed Curves again, having just been back once after the flu. I've had a day in bed asleep, and today, I'm still tired, but I have to do some actual work for work. (Easy, because I will lie in bed with the computer - as long as I stay awake, I'll be fine.

Wednesday, 10 August 2011

Flu's gone - pain's back!

Well, I'm finally over my flu - and I'm starting to get joint pain again!

Can I explain what happened? No idea. Perhaps because I did less while I was sick I didn't stress the joints as much - although the pain stopped before the flu symptoms started and I did sneak in a bit of extra exercise in that time. Perhaps while my immune system had something legitimate to fight, it forgot to fight my body as well (I doubt there'd be any actual medical evidence to support this - but it's a nice idea. It gives a reason to appreciate the flu!)

Tuesday, 9 August 2011

Chronic pain

Have you ever had a toothache, and not been able to get to the dentist for a couple of days? In that situation, you are always distracted, whatever else you do, you are aware of your tooth. Something as small as a single tooth can affect every part of your life until it is fixed. Now imagine what it is to have that pain, not just for a few days, but permanently. This is what it's like to live with pain as a symptom of a chronic condition.

For me, pain tends to be in the joints on my left side – especially my shoulder, wrist, thumb, hip, knee and ankle. Doctors can't explain to my why it's these particular joints. I do have some relief from pain – drugs can control it some of the time. When it's not under control, like the toothache, the pain is impossible to ignore.

We're always told that pain is a sign of something wrong. For some people, pain is just the way things are. We have to make the most of life, no matter how bad the pain is at the time.

I have had to make some adjustments. One of the most expensive was to change from my little car which I loved, but which was manual and didn't have power steering, to one that is automatic, has power steering and has a seat and steering wheel that are more adjustable. This cost more to buy, and more to run, but it was becoming increasingly difficult to drive my old car.

Another adjustment is to do most of my shopping, particularly groceries on-line. Sometimes I'll go to a supermarket, if I have a teenager available to push my trolley, but mostly I go to the online supermarket.

I also find I need to hire a cleaner for the heavy work around the house – vacuuming, cleaning the bathroom, etc. All of these adjustments to normal life can make life far more expensive – when the condition causing the pain also limits my ability to work and earn an income.

I need to exercise to keep joints moving and to help control my weight – but on “bad days” joints hurt too much to move.

My first task in the morning, before I get out of bed, is to work out which parts of my body are hurting and how much, so I can plan how I will handle my day, taking into account the limitations of pain. For me, pain increases with fatigue, and fatigue is just a normal part of lupus. So if I am tired at the start of the day, I know my pain levels will be worse along with my fatigue levels.

For many people, a week of pain is something horrible. For me, a week of pain is “normal”, and a week without pain is something to celebrate.

I always carry my day's pills with me. If I am away from home longer than expected, and can't access pain control I could be in serious trouble.

The things that help control pain for me are: medication (panadol osteo, meloxicam); anti-inflammatory gel (voltaren); rest, especially making sure I have my afternoon nap; gentle stretching exercises, as long as I'm not in severe pain; long soaks in a warm bath. Massage is sometimes helpful, sometimes makes things worse. Attempting to control my weight should take stress off my joints and help with pain control, but this is complicated by pain making exercise difficult.

Is there an upside to this? I have learned to treat little things as precious. If I can't manage a garden, I can put some herbs in pots and enjoy them. If I can't handle the grow-up rides at the theme park, I can go on the carousel, then sit in the shade watching the rest of the family. Going out for a coffee with friends is a major effort – but having made the effort has makes it all the more precious to be able to do it.

Saturday, 6 August 2011


Have you seen those websites that promise you freebies? And mostly you seem to have to sign up for tons of stuff and in the end get nothing?

Here's some actual, useful, free stuff I've found on the internet:

  •  This is a free grocery list program - in our household, it's tied to my email address, and everyone has a copy on their smartphone and computer. Anyone who notices we're low on something can immediately put it on the grocery list - and anyone who happens to be going to the shops can see on their phone what we need.
  • Google is far more than a search engine. Google Docs lets you back up the files from your computer on-line (in case of data-deleting-disasters). Google Calendar and Google Sync together let you sync your smart phone and computer calendars, and address books, and lets you access them from any internet-enabled device. Blogger lets you write free blogs, like this one. 
  • For people with "brain fog" issues, or just with spare time, Readers Digest have lots of puzzle and other games on their site.
  •  Calorie King is a free-online weight loss program. This one really is free, unless you choose to buy the off-line software, or books, etc. It's a program designed by actual dieticians and it works. The weight loss support group at my church uses this program.
  •  This is produced by a pharmaceutical company - and will give you extra information and support if you are taking one of their medications - but basically is a free health and lifestyle information service.
  • I discovered this through their book "Debt Free, Cashed up and Laughing." You can choose to pay for full membership to their club, or sign up for their free email newsletter, and to access some of the site that's available for free. It's a great source of practical information for saving money here and there around the home. It helps cut the budget, without feeling like you're missing out on anything.
  • Australian Federal Government site with free advice on budgeting, managing money and savings and investments. Being government-backed, it ought to be reliable advice.
  • Queensland Health Department's list of links to consumer information on health topics.
  • This is an on-line rewards program. You can earn rewards points when you shop at on-line stores such as ebay. In this sense, it operates like most physical store rewards programs. It also has options to collect rewards points for reading advertising emails, or for undertaking surveys. Points can be exchanged for goods or money. (Confession time - this link is a referral link - sign up using it, and I gain points for referring you.)

    So, here's my list of freebies, that actually give you something worthwhile. I'd love to hear back from anyone who's found more real treasures in the world of the internet. The sites that aren't run by government tend to be funded by advertising, but I've only listed sites where the advertising is subtle - not pop-ups that jump at you, won't let you leave the page, etc, etc.

    Monday, 1 August 2011


    I'm still not in pain, which is quite exciting!

    I am still feeling miserable - not from lupus but from a cold or flu bug I've picked up. To be fair, I pretty much volunteered for this one. My daughter's boyfriend has severe tonsillitis, and asked if he could stay here while he was especially sick, so someone could keep an eye on him.  Of course I said "yes". But now, everyone in the family has a bug. Hopefully, none of ours will develop into some horrible infection.

    Lots of people have very helpfully told me all sorts of remedies that work for them. I envy them. It would be great to just pick up an over-the-counter cold and flu treatment and get back to everything.

    Anyone who's read my entry on the medications I take knows that I have a lot of medicines to take into account if I need to check whether over-the-counter things will interact badly with all of the things I'm supposed to take.

    So what do I do? Lots of sleep (when my blocked nose will allow), fluids, steam, vaporub, all the stuff people did before you could just buy cold tablets at the chemist shop. And, just a little more of my prednisolone (steroid) than usual, to try to slow down the inflammation that comes with having a cold.

    If it gets worse - especially if it settles down and there's sign of an infection - then it's off to the doctor for antibiotics, probably for longer than most other people would take them. And that comes with the unpleasant side effects of taking antibiotics.(Antibiotics and the bug draw the battle lines and take up the fight - collateral damage happens.)

    It's about time to have a cup of mint tea and a lie down.