Thursday, 29 December 2011

Weight loss - not really!

Weight last week: 88.2kg
Weight this week 91.4kg

Well, the numbers speak for themselves.

Hopefully, it's not being affected by fluid still (because I don't think I could survive more fluid tablets!)

So what happened?

Firstly, I didn't record what I ate all week. I just decided to go with the flow over Christmas, not bother recording, and just eat all the rich yummy foods around. (For someone with a history of compulsive eating - this is not a good idea.)

At the same time, I really pushed myself to get all the baking done, and then to get to all the celebrations. And since then, I've been lying in bed or on the couch all day, recovering. (But still eating leftovers.) I haven't been to Curves (and I'm not sure if they're open this week.), or doing any other exercise either.

Now I've gained 3.2kg in a week.  Depressing? Maybe, but I have to confess, that I had a good time making a mess of myself. Now, it's time to put the rest of the cake, fruit mince pies, etc in the freezer. I can go back to eating healthy salads and fruit, and hopefully that will start to help me deal with the fatigue as well. And I can start to move - do a bit of housework, maybe go for a short walk, build up to going back to my normal exercise program straight after the New Year.

Since the treats all came out of my kitchen, there was at least one factor mitigating the damage. I don't cook with saturated fats. (Or at least with any that can be avoided. So cheese, etc has to be the lowest fat possible.)

I've got a bit of pain, especially in my lower back - which will make it a bit hard to start exercising, but also makes it essential.

Tuesday, 27 December 2011

Christmas recovery

It's been a great couple of days - time with friends and family, eating too much.

I'm tired now. I put a lot of energy on the "credit card" over the week leading up to Christmas, and on Christmas Day itself.

The Boxing Day sales are on, which are no longer confined to Boxing Day but will go through now until the January sales begin, and I was given a couple of gift cards - so I will go out to look at the shops. I'll do this a bit carefully - I'm not the person who spends an entire day at the sales scrambling for bargains.

My son and I have this theory that the hottest part of the day is a good time to be in an air-conditioned shopping centre, instead of in our house, which does not have air-conditioning (except my bedroom, but the aircon in my room's misbehaving at the moment as well.)

Most of the next day or so, I'm planning to nap, to live on leftovers so I don't have to cook, and to have the occasional visit to somewhere with air-conditioning when it gets too hot at home. Somewhere in there, I'll get some work done for my actual job.

It's weigh-in day tomorrow, and I'm going to guess that I've gained this week. There were just too many good things around. Actually, my tummy's starting to feel the effects of lots of rich food. Fortunately, there's also lots of salad and fresh fruit left over and that's pretty much what I need to munch my way through to start to feel a bit better.  On the plus side with regard to weight, taking diuretics twice a day seems to have last got my fluid problems under control  - the headache I had for weeks leading up to Christmas has finally gone. (Actually the headache had made sleeping difficult - another reason there was too much energy clocked up on the "credit card".) Hopefully, fluid won't be adversely affecting the numbers on the scale this time around.

So this week's about taking it easy, getting the energy budget back in balance, maybe thinking about getting the financial budget back in balance as well, and starting to look forward with a bit of advance planning for the new year. Nothing that takes too much energy.

I hope you're also getting time over the public holidays for some rest and recovery.

Sunday, 25 December 2011

Happy Christmas

Happy Christmas everyone!

My schedule today is a bit busy - the Christmas service at church at 7.30am. (Yes, you read that right!)

Mr Wonderful, his daughter and I are going to my  best friend's place for lunch - she's got air conditioning, so I'll be out of the heat of the day for lunchtime.

Then it's a nap before my kids come home from their Dad's place, and Mr Wonderful and his daughter come around for Christmas dinner.

It's busy - but I've been planning for this for a long time.  The presents were bought early, so that they were wrapped and under the tree before I started dealing with the cooking.

The cooking was done in bits and pieces over the week  (with the groceries ordered on-line and delivered so I didn't have to face the supermarket.) Food today is all being served cold - salad and sliced meat (no, I didn't even bake the ham, I bought it sliced.)

There's lots of fresh fruits and vegetables, before the baked goodies, so we'll fill up on something nutritious.

Cakes, puddings, shortbread, profiteroles and fruit mince pies have come from a variety of gluten-free cookbooks. Gluten-free cakes and pastries are just better made at home than bought - and if I bought the non-gluten-free, I wouldn't get to try them!

(I'm sorry - not going to look through Amazon to get you pictures of them this time around - this lupus flare means I'm doing minimal everything.) Maybe when I'm planning for next Christmas, I'll recommend my favourite recipes and give you the details of the books they come from.

I've been really looking forward to Christmas (and yes, I did write this ahead of time and set it to publish Christmas day.) While one of my best friends is overseas, and my sister is always overseas, I'm spending today with the rest of my favourite people. If I'm exhausted on Boxing Day, I don't care.

I hope this Christmas, you get to spend time with your favourite people, and that the message of peace on earth and goodwill to all reaches you in a special way.

Happy  Christmas, and God bless you.

Thursday, 22 December 2011

Weight loss: a little less of me

My weight last week: 91.2kg
My weight today: 88.2kg

Well, a 3kg weight loss in one week sounds impressive, but I won't get excited about it. I'm struggling so much with fluid retention problems that my weight is just doing anything and everything.

So, here's an interesting look at weight loss issues: how do we keep up our motivation when health problems are interfering?  I've been working on weight loss for months, and not getting anywhere. Now that I'm having constant headaches from fluid, I've had to start taking extra fluid tablets. I don't think I'm yet down to what would be my actual weight without excess fluid (because my feet are still swollen, and I've only just woken up but the headache is already starting.) The weight I've put on while I've been working so hard to lose it, may not actually have been weight at all. For all I know, I may actually have been losing "weight" while the numbers on the scale were going up.

Working on weight loss and seeing the numbers on the scale going up was very frustrating, and it's nice to see the numbers going down again. I think what I have done is taken the attitude that healthy eating and activity were good for me whether or not I was seeing results on the scale. I also felt like a bit of a fraud, leading a weight loss group while I just kept gaining weight.

Will the weight keep dropping off like this?  I have no idea. I would love to know how much I actually do weigh, and how much is excess fluid. It may be that I have nowhere near as big a weight problem as I think! (On the other hand, if I'm still carrying kilos of fluid - that means a lot more fluid tablets, and I am so sick of spending my life in the loo!)

On a different (but tangentally related) topic: I would love some feedback from other lupies as to whether this happens with them as well.  I have a horrible problem with dry eyes. When I take a fluid tablet, my eyes are suddenly not so dry and are far more comfortable, I don't seem to need my Polygel to moisturise my eyes as much. Has anyone found this happens for them? I had expected that removing fluid from my body would make my dry eyes worse, but the opposite seems to be true.

Monday, 19 December 2011

Fighting the Flare

Well, I haven't posted anything for a while.  In fact, that's probably how it will be for some time to come.

Since my lupus is flaring, I need to try to conserve my energy wherever I can - it's the nature of the beast that I have to budget energy carefully at the best of times, and right now isn't the best of times.

Over the last couple of days, I've put a bit of energy on the "credit card", done just that little bit extra because there were things I really wanted to do, and because there were things I really needed to do. The problem with the credit card is it all needs to be paid back with interest. So yesterday, I slept. Today, I've also slept a fair bit.

How am I preparing for Christmas with this going on? Slowly. I'm also trying to plan ahead. Fortunately, I started getting presents very early (working on the theory that I want to avoid shopping centres in the last couple of weeks before Christmas anyway.) We're having Christmas dinner at my place - and the menu is cold meat and salad.  I am doing my Christmas pudding and Christmas cake, but they're being done ahead of time, just one thing a day this week.

My rheumatologist is away for a couple of months - so the earliest appointment I could get is mid-February. Meanwhile, my pain and fatigue are flaring, which my GP is trying to manage by increasing my steroids. The increased steroids cause fluid retention problems, which gives me headaches, so I'm taking more steroids and more diuretics. And neither of those make me feel wonderful! My GP's also adding magnesium to my cocktail of drugs - but I have no idea what that is meant to do.

So I'm still here, and I'll try to find the energy to post a couple of times per week, but that's likely to be the most you'll hear from me, at least for a while.

Thursday, 15 December 2011

Weight Loss: Old Habits Die Hard

My weight last week 90.6kg
My weight this week 91.2kg
(I have no explanation - beyond medication and ongoing problems with fluid.)

Have you ever found yourself putting food in your mouth and thought: "I didn't even want this?"

We develop our habits over a lifetime. Some habits are useful for us, some not so useful.

When we develop the habit of washing our hands before eating (because Mum or Dad constantly tells us to do it at each meal time when we are little) we are developing a useful and healthy habit.

When we learn that food is a cure for pain, or boredom or stress, we're learning an unhealthy habit. Many people with weight problems, like me, learned this early on in life.  One of my earliest memories of this lesson learned, was tripping over and cutting my head quite badly. While my mother cleaned the wound, my father went out to get me a Cherry Ripe bar to make it better. (For people outside Australia - a Cherry Ripe is glace cherries and desiccated coconut in what's probably a condensed milk base, covered in rich dark chocolate - it's addictive, and definitely not on any dietician's list of foods essential for anyone.)

As a kid, whenever I went to the movies, my mother always had lollies or chocolate in her handbag to had out during the film. (We weren't one of those families rich enough to buy popcorn at the theatre.)

For special occasions, there was always lots of food around. Conversely, in everyday life, especially when I was very little, there were times when food was quite scarce.

I learned to associate food - especially unhealthy food with feeling better when things were bad, and with things being good. I also learned to eat while doing other things, such as watching a movie. Fast forward about 40 years, and the first thing I think to do if I've had a bad day, is to find something sugary and fatty to eat. (Chocolate is always good.) I also have an issue with "unconscious" eating - eating things without even noticing while I do something else like watching tv.

Does this really make my bad day better? Well no, for a number of reasons, not the least of which is that I know my rheumatologist has very good reasons for wanting me to lose weight, and eating stuff with a high energy-density and no nutritional value does not really help to meet that goal.  Another reason it doesn't help is the uncomfortable way fatty foods just seem to sit in my stomach for ever and cause horrible reflux.

So how do we change any habit? It starts with becoming aware of the habit we have. For me, that means writing down what I eat (the Calorie King website makes this relatively easy for me), and making an effort to notice why I'm eating - is it because it's time to eat, or because I'm stressed or bored, or because I'm honestly hungry.

The next step, if I'm not actually hungry, is to identify the need I am trying to meet with food. If I'm lonely - it's better to call a friend than to eat. If I'm bored, picking up a book to read, or going on line, or draw or paint, or even sweeping the kitchen is a better way to deal with boredom. If I have a problem that needs to be worked through, I need to get out my journal and work in that (or again call a friend or Mr Wonderful). If I'm tired (and I often catch myself eating because I'm tired) I need to sleep. If I'm in pain (and yes, I've learned to medicate physical pain with food - usually chocolate) I need pain relief or the TENS machine.

 That all sounds so simple when I write it down - but in the real world, of course, it is very, very difficult. The reason it's difficult, is that after 45 years of really bad habits with regard to food, I can't expect to develop completely new habits overnight. The challenge is to accept that I'll slip up at times, but to keep trying anyway. The only way I can fail is if I give up trying.

If you're struggling with a lifetime of bad habits - then like me you have a big challenge ahead. It's hard work, but it's worth it. As long as we keep trying, we're going to get there in the end.

Wednesday, 14 December 2011

Crunch Time

I'm sitting tied up to the TENS machine (what's new?) while utter chaos reigns in the house around me.

I do have to get some housework done today because tomorrow morning the real estate agent inspects. She probably doesn't need to know that I've left the dishes for several days because I just haven't had the energy to face them. (Well, I've told you what I spent my precious energy budget on for the past few days - I'm totally unrepentant about that.)

And once more, the cat believes his litter tray is due to be changed. Actually, he's probably right about that. No-one wants it reaching the point where the smell of used kitty litter wafts out of the garage.

Even though I have a cleaner come once a week to do the "heavy" stuff - vacuuming, cleaning the bath and shower, etc, there still seems to always be something that needs to be done around the house. When I budget my energy, this is what I keep forgetting. After 45 years of life, I should have learned that the basics of doing dishes, cleaning up after animals, generally tidying up, actually take time and effort. I should know that I absolutely must save a bit of energy each day to do this quickly - because if I don't do it quickly every day, suddenly it's a huge job and a massive drain on energy reserves and sore joints.

So today, my priority is housework, and a long rest because tomorrow I'm on the train back to the Gold Coast to spend a couple of days with Mr Wonderful and his daughter. I have spent the morning so far on things for work, and I have a function for work early this evening, so I need to pace myself very carefully for today.

Will I learn my lesson after today? Will I always keep that little bit of energy in reserve for a quick clean-up of the house at the end of the day?  Well, actually I'm going away for a couple of days and returning to whatever chaos pets and two grown-up offspring can create in my absence. So I know I have to set aside a significant amount of time and energy very soon to do it all again - but some time I hope to learn my lesson. Some time (whenever some time is) I am going to start out the day, planning to have a half hour at the end of the day, along with the energy to use the time,  to have a slow look over the house, a brief clean up and straighten up and the dishes clean and feel good about the place.

Well, that's the goal.

In the meantime - I'm putting on my rubber gloves - if you don't hear from me again, you'll know it was all too much!

Monday, 12 December 2011

What a feat!

Mr Wonderful and his daughter are on holiday at the Gold Coast.

After church yesterday, I caught the train down to see them. (Two hours on the train. I slept part of the way.) We went swimming in the late afternoon. For me that means I played in the water for a while then went to sit in the spa until the others were ready to go back to the motel room.

This morning we went shopping at Harbour Town. We shopped for five hours. I stopped for rests a number of times, and took a fluid tablet at lunchtime, because my feet were ridiculously swollen and I had a headache. Then it was the train home, as I have to be at work tomorrow.  I slept on the train again. My headache was gone, but my feet were still sore and after a very short walk home from the station (which seemed very long today) I noticed my feet were so swollen that my shoes were cutting into them.

I took an extra fluid tablet. I dont' know that I'm really supposed to do that - but if my feet are so swollen, a fluid tablet is essential before the headache sets in. (The headache is actually already starting to set in, but the extra fluid tablet hasn't had time to work yet.)

Did I overdo it? Probably. But then again, this out-of-control fluid retention issue is one of the reasons my GP wanted me to move my appointment with the rheumatologist forward - it's a sign of a flare.

If I tried to do this much every day, I would have a serious problem. At the moment, it's an issue, but one that can be managed by what I do next.

For dinner tonight - I've got leftovers in the fridge, and I'm leaving the kids to deal with their own food. (For anyone who doesn't know, my kids are aged 20 and 17 - I didn't abandon small children overnight.) Then it's an early bath, a session on the TENS machine and bed.

My work tomorrow begins with a Christmas party - and I need a good sleep for that!

I'm actually having a fairly easy week work-wise, as our youth worker is doing the service this Sunday - but I do have a couple of Christmas parties to attend for groups in the church or to represent the church. And I have to start doing some forward preparation for Christmas day.

I'll go down to the coast again on Thursday and come back on Saturday. In the meantime, I'll pace myself, with plenty of time for rest, and some work and some household tasks. I have to start planning my Christmas baking - but that's happening a bit at a time starting next week.

In the middle of January, I'm taking a couple of weeks off work - I haven't actually taken holidays in 2011 at all. Working 12 hours per week, I've been able to go away for the occasional weekend or midweek break without actually taking any holidays.But now, I think I need to actually take some time out to do pretty much nothing. I'll let you know closer to the time if I'm going to stop blogging for those two weeks as well. (I may do.)

Thursday, 8 December 2011

Weight Loss: A Good Start

My weight last week: 89.4kg
My weight this week: 90.6kg
(I gained - but I lost 2kg the previous week, and my lupus is flaring, so it's not so bad.)

Well let's look at what we're talking at Weight Loss Group tonight.

How do you start your day? Do you grab a coffee, on the run and not worry about food? Do you have a quick bite of toast?  Do you sit down to a cooked breakfast?

People say breakfast is the most important meal of the day - and there's some truth in that, although of course, every meal is important. (There's no point in having a really good breakfast and eating junk the rest of the day.)

So what makes a good breakfast?

Firstly it needs to be good basic fuel.  You haven't eaten for eight or more hours, this is about as low as your body's fuel level gets. So you want some great low-GI carbs to give you that energy to keep going for the day. So for breakfast cereal, we're looking for whole grains; for toast or bread, again we're looking for whole grains.

It needs to have a bit of fibre - that helps lower the GI of the meal, but also helps keep your body healthy, so we're looking again at whole grains, maybe some psyllium or rice bran or wheat bran if your body can handle it; or fruit. If you're going for a cooked breakfast, baked beans are always good as a mix of protien, low-GI carb and fibre.
Having mentioned baked beans, let's look at protein. Remember protein helps you feel full for longer, so you're less likely to feel like you're starving before you get to your next meal.  If you're having cereal, you can add protein by adding a few nuts, if you're doing the cooked breakfast, think baked beans, eggs, lean meats.

Fruit and vegetables always are a good idea at every meal. Fruit on cereal is great. Grilled tomatoes or even grilled peaches are great with a cooked breakfast. Spinach or mushroom is also good with a cooked breakfast.

A little bit of low-fat dairy is good for protein and calcium.  Skim milk or yoghurt on your cereal . A bit of low-fat cheese on your toast with some tomato is good.

It sounds like a lot to fit in at one meal.  Remember that when you come to breakfast, you haven't eaten for anything up to about ten hours, depending on when you last ate before bed. At this stage, your body needs some really good quality fuel. Remember, also, that breakfast sets the whole tone for the day in terms of what you are going to eat.  If you don't eat enough at breakfast time, you get hungry again earlier in the day and are more likely to eat something you will regret later.

Wednesday, 7 December 2011

I am getting sleepy, very sleepy....

Well, my urgent trip back to the rheumatologist can wait - he's away for two months! I did manage to bring my next appointment forward - from the start of March to mid-February. I guess if the GP decides it really is more urgent than that, she'll have to send me to someone else.
In the meantime? I'm still a bit ouchy - but at the moment, I'm mostly just exhausted! Today, I went to Curves, had coffee with a friend, and took my son to finalise his TAFE enrolment for next year. Then I slept. And slept. And slept. The DVD I attempted to watch played itself through about three times - I know because I woke up a few times and have a vague idea of the timeline of the movie, even though I saw it completely out of sync.

I had housework to do, and I had work work to do, and nothing's been done, except watching bits of a DVD.

So all the work's still waiting for me, but I think, for now, I'll just have another little nap.

Tuesday, 6 December 2011

Why won't everything else just stop until I catch up?

The big problem with a lupus flare is that nothing else will wait until I'm ready to handle it.

Those dishes I didn't have the energy to wash last night are still sitting in the sink (and they're looking much worse this morning).

The cat still believes his litter trays should be changed.

I have work to do for my actual work.

And what am I doing? Well, as you probably guessed, I'm hooked up to my TENS machine trying to get some aches and pains under control, reading twitter feeds, and generally doing nothing much.

What do I want to do? Get a replacement pair of shoulders to start with - some that aren't hurting. I want my headache to go away. Then I want to sleep for the next six months or so.

What am I going to do??

When this 30 minute block of time on the TENS machine is done, I'm going to get up and do the dishes and see to the cat, because these issues will only get worse the longer I leave them.

Then I'm going to stop for a cup of coffee and put my feet up for a while.

Then I'll sweep and mop the kitchen.

Then I'm going to have a nap.

After lunch, I'll actually start this week's work for work.I can hook myself back up to the TENS machine while I'm sitting at my desk to do that.  And somewhere in there I'll fit in an afternoon nap.

In an ideal world - I wouldn't have lupus.  In an almost ideal world - everything else would stop while I have a flare, so that I'm not always trying to catch up!

Monday, 5 December 2011

Back to the rheumatologist

Well, I've scored an extra trip to the rheumatologist.

I wasn't due for a check-up with him until March.

But, about two months ago, the GP increased my prednisolone from 2mg per day to 15mg per day, to get my pain under control.

Then the ophthalmologist found something not quite right with my eyes - he's decided not to worry about it, just to check again in six months instead of the usual 12 months, but there's a risk that plaquenil,  one of my main lupus drugs, is starting to do something unpleasant.

Added to that, I'm having problems with retaining fluid. That's something that can happen for any number of reasons, including hormonal. (After a hysterectomy about eight years ago, I don't know what's hormonal and what's not.) But one of the big things that can cause fluid retention is prednisolone, along with a number of other drugs in my cocktail.

So, time to make the extra appointment, and see how much fun it is to go see my specialist for Christmas.

Saturday, 3 December 2011

Lentil Sausage Rollettes: Great as next day leftovers

You know I just love food that I can make a double batch of and serve for more than one meal. This one's so more-ish that I just about blew my calories for two days with it!

It comes from Food for Health and Happiness. That's one you won't get from Amazon, but if you're in Australia, you can request a free copy from Sanitarium Nutrition Service. Their website can give you all sorts of nutrition information - my daughter and I used it when we first tried being vegetarian.

(The whole vegetarian effort failed when my doctor told me to give up gluten, I was already off lactose, and thought I couldn't handle having such a limited diet. Now, my daughter and I have been missing all our yummy vegetarian foods and are eating vegetarian meals more often than meat-based ones. I think, but of course can't prove, that the mostly vegetarian diet does help my lupus symptoms a bit. Given the price difference between lentils and meat - it helps the budget a bit as well.)

Here's the recipe:

Lentil sausage rollettes 
1 slice grainy bread
400g can lentils, rinsed and drained
1 carrot coarsely grated
1 egg, beaten
1/3 cup chopped walnuts
1/4 cup chopped chives
 2 tablespoons barbecue sauce
2 tablespoons tomato sauce
5 sheets filo pastry
1 1/2 tablespoons olive oil (or olive oil cooking spray)
2 teaspoons sesame seeds

1. Preheat oven to 200 deg C and line a baking tray with baking paper.
2. Process bread in a blender to make breadcrumbs. Place breadcrumbs in a large bowl with the lentils, carrot, egg, walnuts, chives, sauces and mix well to combine.
3. Remove 1 sheet filo pastry and cover the remaining sheets with a damp tea towel. Brush or spray with olive oil. Cut sheet in half lengthwise and then turn so both short ends of the two strips face you . Place 2 tablespoons of mixture on each edge closest to you, about 5cm from the edge and 1/2 cm from the sides. even it out so the filling is about 3cm wide. Fold pastry over filling and then roll up. Do this for both strips of pastry. Place on prepared tray and brush with oil.  Repeat with remaining filling and pastry.
5. Sprinkle over sesame seeds and bake for 25 minutes until pastry is lightly brown.

Nutrition information (original recipe - not counting my changes): 540kj (130cal); Protein 4g; Total Fat 7g; Saturated Fat <1g; Carbohydrate 12g; Total Sugars 4g; Sodium 250mg; Potassium 135mg; Calcium 20mg; Iron 1.0mg; Fibre 2g.

Makes 10. Preparation Time 30 minutes. Cooking Time 25 minutes.

© Recipe kindly provided by Sanitarium Health & Wellbeing Company.

My variations to make it gluten free: 
Gluten free bread in place of bread
10 sheets of rice paper instead of the five sheets of filo pastry

Tips for using rice paper:
Rice paper comes as hard sheets, and needs to be softened to use as pastry. Work with two dinner plates. Place a sheet of rice paper on each, brush well with a pastry brush soaked in water. Leave one to soak while you work with the other.
When rice paper has softened: drain off any excess water.  Fold two opposite sides into the middle so as to give two straight sides. One rice paper sheet will do the job of a half filo sheet in the original recipe.
Fill and roll as for filo.
Before you start to work on the next sheet, put a fresh dry sheet on the plate you've just used, and wet it down, so it can soften while you're working on the sheet on the other plate.
The rice paper won't go as crisp and brown as the filo does: but I haven't heard any complaints.  In fact, my daughter's had it both ways and says the rice paper version is much better. If you eat it cold the next day, the rice paper is a bit chewy, but it is actually really nice.

Friday, 2 December 2011

Trying to decide...

Wegohealth, those same people who brought us the 30 posts in 30 days health blogging challenge has now opened its Health Activist Awards 2011 for nominations.  (If you want to nominate anyone you can at this address: .

There are some amazing people blogging about lupus - and I've been trying to think who to nominate.  If you want ideas, go to the lupus links page and check out some of the blogs.

I've been thinking about who to nominate, and why:

  • Christine, from But You Don't Look Sick would have to be high up on the list.  Not only is hers probably one of the longest running blogs, but she's helped us to define ourselves. The term "spoonie" often used for people with chronic illness comes from her "spoon theory" explaining the issue of fatigue. She always seems to be travelling somewhere to raise lupus awareness.
  • Tiffany, from Tiffany and Lupus would also have to be high on the list. She writes not only her own blog, but also for The Lupus Magazine and other sites. She founded Friends Against Lupus, that wonderful group that keeps putting up Facebook messages reminding lupies to take our medicine. She's changed her Twitter picture now - but the picture of her purple wig always made me smile when I saw it.  When she's had a down day or few days and been out of circulation she's always very open about it. She shares life as it is, both good and bad.  I'm probably twice her age, but I want to be like Tiffany when I grow up.
  • Brynn, from Lupus Interrupted is just the most amazing woman on earth. I find life with a chronic illness and two kids a drama. She manages it with a husband and five kids. She's got an attitude that says nothing will ever beat her. A self-declared badass, who has on her blog an amazing photo of her in her warrior princess outfit with her sword, she's an inspiration to anyone who decides they're not going to take being sick lying down!
  • Melissa (Dr Snit) from Living with Lupus, But Dying of Everything Else is challenged by multiple health issues - but still manages to find ways to laugh. Maybe being a stand-up comic gives her practice at this. 
  • BD from memory doesn't serve me so I blog would have to be in the running for the rookie category. One of my absolute favourite posts in any blog is hers about breaking up with her doctor.
  • How about Pill Poppa from Taking Pills and Paying Bills? Or Tim from The Home of Lupoid? Or or Annie from It's Time To Get Over How Fragile You Are?
There are just so many amazing people out there advocating for lupus and other chronic illnesses. I'm so glad I've got all of December to think about who to nominate! 

Thursday, 1 December 2011

Weight Loss

It's been a while since I've actually posted about my weight loss efforts - and until the past couple of weeks they haven't been good. But things are at last happening now.

Here's my last three weigh-ins:
19 November 92.8kg (BMI of 38.1)
24 November 91.2kg (BMI of 37.5)
1 December 89.4kg (BMI of 36.8)

So I'm going in the right direction at least.

I'm using the Calorie King website to track my actual food and exercise, and I'm involved in a support group at church.  Actually I lead the support group (seem strange, since I'm the person who hasn't been losing weight?  I used to be a Weight Watchers leader some time in ancient history, and at the time was very successful at managing to maintain a healthy weight.)

Why have I had so much trouble in recent years?  Well, I just read today on Carla, the singing patient's site Lupus, Humor and Wellness that there's been a link found between inflammation and obesity.  Perhaps now that my medication, the TENS machine, exercise and rest are all working together to keep me much healthier than I have been for years, the inflammation is actually reducing and that is making things easier.

So each Thursday, I lead a weight loss group.

Tonight, we're talking about maintaining our metabolism. I actually chose the topic specifically for someone who's just texted to say they won't be there.

Cutting down the amount we eat is kind of a basic thing for weight loss. (Seems obvious, doesn't it). If we cut down the amount we eat too much, however, our bodies start to panic and go into "starvation mode" - they hang on to every little bit of fat they have just in case they need it.

We need to reassure our bodies, that there is enough food out there to live on.

The way to do that is to eat. (Obvious, as well, huh?)  So what do we eat?  This is where it gets tricky - we need meals and snacks throughout the day. Because we're trying to lose weight, we need to make sure we're getting good nutritional value for the energy we eat. Yes, you can use all your energy allowance for the day on creamcakes, but it won't be good for you, and you'll still feel hungry.

So choosing what we eat is important. We need things that help us feel full, provide our bodies with good slow-burning energy, nutrients and of course the fibre that keeps everything working smoothly.

We're looking for: Protien, Low-GI carbohydrates, fresh fruit or vegetables, low-fat dairy foods, small amounts of healthy fats (let's do a whole post about fats in the near future - one about the Glycaemic Index as well.) That's the food we're looking for all day - but we need to spread it out. A little bit at each meal, and boost it with a little bit in between. If we spread it out over the day, our bodies won't get that shock of suddenly there's food and then suddenly there isn't. We don't go into starvation mode, because our bodies know that there's going to be more yummy fresh food sometime very soon.

At this time of year, one of the best between-meal snacks is Christmas fruit. Cherries, apricots, nectarines, mangos, peaches are all out. A nice serve of fresh summer fruit straight from the fridge on a hot day is one of the great delights of the Christmas season. Compared to any pre-packaged "snack foods" you could buy, they're much healthier fat-free, lots of nutrition and fibre, and a low energy density. (Energy density - there's another topic for another week.)

How about a handful of cold cherries, and coffee made on cold skim milk over ice cubes for your afternoon tea? It contains enough energy to get you through the gap from lunch to dinner, and it's a real treat you can look forward to.

So, that's my thoughts on weight loss for this week - and what I'm going to be talking about with the group at church.

Want to check up on what I'm eating? My profile (including my daily food and exercise diary) is at the Calorie King website. My profile name is icarden.

Hope you're feeling well.

What's next?

It's December.

I survived both health blogging month and NaNoWriMo simultaneously. Will I do both again? Give me a year to recover and I'll think about it.

I'm already into Advent services and gearing up for Christmas - so as far as my church work goes, it gets busy from here. Part way through January I'm going to take holidays - not to go anywhere or do anything , but just to stop. Here in Australia, January is the middle of summer. There are two times of year I just don't function: when it's hot and when it's cold.  When it's hot, I'm tired and when it's cold my joints ache.

I've also got way behind around the house while I've been immersed in my frenzy of writing to deadlines. I have a house inspection mid-December, so that kind of needs to be caught up. (And I have to somehow motivate my kids to do their share - not an easy task.)

I'm already thinking of "what's next"? What insane challenge can I give myself so I  feel like I'm achieving something? After I recover, that is, from all that I did in November.

Wednesday, 30 November 2011

Buggernackles and Plaquenil

I learned a new word today - the incredible Brynn who writes Lupus Interrupted used it on a comment on this blog and the word of the day is "Buggernackles."

I knew I was going to need a good word for an appointment I had this afternoon, and this was perfect.

My appointment was with my ophthalmologist. I go to him once a year because I take plaquenil.  Plaquenil is supposedly very good for lupus.  It's not necessarily so good for eyes. For years now, the good doctor has been reassuring me that macular problems from taking plaquenil are incredibly rare, and it would be highly unlikely for me to ever have a problem. I just go in each year to have the test because there is some incredibly slight (like a thousandth of a percent chance) of things being not quite right.

Every year I go in. Every year I stick my head in a white box and look at flashing lights, I have drops to dilate my pupils, I look at grids and eye charts and have more lights shining in my eyes. And every year, he says, that's fine, I'll see you in a year.

Only this year, I failed a test. It was the amsler test - all I had to do was look at a grid on a piece of paper. How hard can that be?  Well, here's the tricky bit - I had to look with only one eye at a time. My left eye passed the test - it saw a grid, no distortion, nothing unusual.  My right eye? Well it saw a grid with nice straight lines - but it saw extra "ghost" lines in between the actual ones that were supposed to be there.

My right eye failed the exam.  As every school child knows, when you fail an exam, it's just not good. Someone will say something disapproving.

What my ophthalmologist said was: "That's concerning, come back soon. We have to redo that without your pupils dilated. You can't wait this time, you have to come back soon." That's what he told me - the man who every year reassures me that what we're looking for is so unlikely he doesn't seriously expect to find anything, this year just said "that's concerning."

So, this afternoon I went back for my retest.  You have to understand that in the meantime I haven't just been doing nothing about this - I have been worrying!  I am very good at worrying - my kids believe I am the world's foremost worrying expert. If they gave out a Nobel Prize for Worry - I'd be in with a chance.

Here are the scenarios I envisioned:

  • because I had double-vision in one eye only, maybe it was neurological. Maybe lupus (or my medication) was attacking my brain.  I have a very strong attachment to my brain, and this is my biggest fear. Every time I have brain fog for a few days I start to panic about whether something bad might be happening to my brain.  Mess with any other organ, and I'm OK. I don't miss my appendix, or my uterus. (I wasn't on good terms with either when we parted company.) Just don't touch my brain, that's the best part of me. Perhaps rather arrogantly, I believe I have a very nice brain.
  • lupus was attacking my eyes, or at least my right eye. I was imagining having to learn Braille. Worse, I was imagining having to give up my driver's licence. Why I imagined them in that order, I don't know. Presumably they'd take my licence away before I needed Braille. 
  • it was plaquenil, and I'd have to give it up immediately. Plaquenil is the first lupus drug I was given. Everything else in my cocktail was added to plaquenil.  If it was the last drug added and everything worked fairly well without it - that wouldn't be so bad - but there's no knowing what the other drugs would do without plaquenil, because I've never had them without it. I was envisaging getting as sick as I was while the cocktail I'm on was being worked out. OK, I now know that's survivable - but it sure isn't pleasant. 
So that's what I was imagining on the train this afternoon.

What actually happened?

Well yes, buggernackles, I failed the same test again.


My ophthalmologist said he didn't know what it meant, but it was hoping a colleague who specialised in retinas (they have specialists who just do retinas!) was still in his office. And he made the phone call, read out my file over the phone and talked for a while.  The consensus was that neither of them is certain what's going on. The retina specialist (what do you call a retina specialist anyway?) said not to worry about it and test again in six months. 

So now, where am I?

Well both the ophthalmologist and the retina person think it's eyes. (My brain, is apparently safe from attackers at the moment. I'm keeping my guard up, though. You never know what might come after a good brain like this one.) And the ophthalmologist says it could be plaquenil, but if it is, it's not so severe that I have to stop a drug that's doing me good at the moment.

Neither of them think it's so bad that something has to be done straight away. I wasn't whisked off to the hospital emergency department - or sent for brain scans or some horrible invasive tests. No-one poked needles in my eyes or put electrodes on them. (There is a test where they put electrode things on your eyes - actually they put fine filaments across them, and flash lights and do all sorts of stuff. I've had that test once. Even if there's a risk of going blind, I am never, never, again going to sit still for someone who says "I just have to put these little filaments across your eyes, I'm afraid they'll be a bit uncomfortable." They're uncomfortable in the way that labour pain or appendicitis is uncomfortable.)

Down the track, my drug cocktail may have to be reviewed - but it looks like plaquenil isn't going to just be pulled out of it instantly. If there has to be a change, apparently it can be done gradually. 

And all the things I worried about?  Well, I've still got my brain, and my eyes, and I even get to keep my lupus medication - at least for now. I'll worry about it again when my six months is almost up. As I told you, I'm a champion worrier, and I do keep in training. Until then, all is well, despite my failed amsler test. 

Of course, I've still got concerns: about money; about trying to keep up with housework; about my kids finishing their education, getting good careers, enjoying retirement when they're old; about whether Mr Wonderful really does love me or will one day work out he could do better; about lots of other things. But hey, if I weren't worried about something, my kids wouldn't know who I was. 

Health Blogging Month Day 30: Avoiding the topic

Play that horn. Want to hear a secret? You’re awesome. (It’s actually not even really a secret.) This is going to be hard for you, O Modest One, but you gotta give yourself props today. Write three things you love about yourself – things you’re great at – or just want to share. Don’t you dare signpost or undercut those self-compliments!

(Play that horn? It's "The Last Post" of health blogging month. If it were ANZAC Day the Returned Services League would think we were making fun of them.)

The rules of health blogging month allow me to take two "get out of blogging free days." So far I haven't used them.

Since it's the last day, I'm using a "get out of blogging free day" to avoid the topic.

Let's not talk about me.  Let's talk about you - the people I don't even know who have been sharing my story since the end of May.

Some of you have blogs of your own, and I've been privileged to read some of your stories as well.

Here are three things I love about you:

  1. Those of you who have left me comments have taken the risk of being vulnerable. You've encouraged me, but you've also shared something of yourself, and that takes real courage.  You are incredibly courageous. Maybe that comes of living with a monster like lupus - but whatever it is you are brave beyond belief.
  2. You come back.  Even when I've had a miserable, painful, depressing day, and my post is miserable and depressing, you come back. (Well, some of you apparently do.) I don't know you, but you've chosen to be my friend.  You are an incredibly compassionate person.
  3. Whatever time, day or night, I (or any other lupie) need to find someone who understands - there is someone on-line. You are part of a community of people who are separated by geography, culture, economics, anything and everything that can divide people - yet are united in one incredible goal - somehow we are going to get each other through this.  Wouldn't it be amazing if the whole world could be as supportive of each other as the on-line lupus community is?
Give yourself a pat on the back. You are an incredible blessing to me, as well as to each other, and I thank God for you every day.

This post was written as part of NHBPM – 30 health posts in 30 days:

Tuesday, 29 November 2011

Health Blogging Month Day 29: Lupus Greeting Card

Greeting card post! The greeting card industry is all about writing generally universal feelings in a presentable way that you can use to express yourself when you just can’t think of the words to say.
Write a greeting card for someone in your community to help them express themselves about a new diagnosis, treatment, or experience.

Well, you know the front cover of this card has to be my snarling lupus wolf.

Now, what verse to put inside the card?  What says what it's like to discover you have lupus? Let's try this?

I'm a little shocked right now
but I'm still glad to know you care.
I thought I could trust my body,
but it has let me down.
I had a whole life planned,
and now it has all changed.
It isn't what I wanted,
but it's what I need to learn to live.
Thank you for being there for me now - 
and please be with me as I learn to live with lupus.
I don't know what's ahead of me
but I know I'll need good friends like you. 

This post was written as part of NHBPM – 30 health posts in 30 days:

Monday, 28 November 2011

Health Blogging Month Day 28: What was that again?

Say WHAT?! What’s the most ridiculous thing you’ve heard about health or your condition. Was there any context? What did you think at the time you heard it – and what do you think of it now?

"I had lupus but I got over it. It's just stress."

Yes, stress can help set off a lupus flare. No, it is not the cause of lupus. We don't actually know what causes lupus. We know that sunlight, stress, environmental factors, and practically anything or nothing can cause a flare.

I don't know what the woman I was speaking to had. Maybe it was simply stress. But I know she didn't simply cure lupus by removing the stress from her life.

I know that because I had two years of doing virtually nothing more than sleeping - and that didn't cure lupus, just helped get it under control enough for me to have something resembling a "normal" life now.

This post was written as part of NHBPM – 30 health posts in 30 days:

Sunday, 27 November 2011

Health Blogging Month Day 27: Comment on a quote

Quote Unquote.Grab a quote from this site (type in any word – see what comes up!) and use that quote to set you writing.

I'm guessing this means the Wego Health Site.... So here's a quote found on the site. It's from Blog Post "Spring Cleaning My Life" by  Ellen S.

This is the season for stopping to take stock of the winter and look ahead to brighter, sunnier days.  In the old days, spring was a time to drag out all the old furniture, bedding... well, pretty much everything to give it a good once-over.  The task: clean everything so that the family would have a bright and shining new house to match the bright and shining new sun and the brand new season.  Spring is the season of rebirth.  It reminds us of renewal and starting over.

So I'm only a couple of weeks from the end of spring - and it already feels like summer here in Brisbane.

I would love to do a proper spring clean of the house. But I'm getting further and further behind. It's a pity because a wonderful lady from my church came around and got me caught up a few weeks ago - now you can't see where she's been. (It doesn't help that my cleaner was in a car accident and hasn't been. I realise that's worse for him than me, but it is a problem for everyone.)

In terms of my life - there is always something I would like to get organised. Just to have a routine sorted out where I get everything done. I always seem to be behind on the things I want to do or need to do. I'd love to be able to throw out some clutter - pare down what I do to what's important. The problem is that every time I do that, I find some brilliant new project that is suddenly important!

This post was written as part of NHBPM – 30 health posts in 30 days:

Saturday, 26 November 2011

It's been a shock

I had a bit of a shock yesterday. It's made me realise once more that there is a link between lupus and emotional state.

My shock was to come home to a find a letter from the Real Estate agent, it was late enough that their office would already be closed, so I can't actually clarify anything with them until Monday morning.

It was a new lease. The covering letter explained the rent was going up. That's fair enough - it's a 7.5% increase, which for me is a bit much - because it will come into place just weeks before my youngest child turns 18, and my ex-husband can stop paying child support. My income goes down by 20% at that point. (I still have the kids living at home - they haven't finished their education yet.)

Then I started to read the new lease. It's only a six month lease - when I've been on annual leases up until now. It wasn't mentioned in the covering letter, so there's no explanation of what's going on.

Further on, I found what really distressed me. No Pets. This wasn't mentioned in the covering letter. The kids and I have been in this house for five years, and the pets have been approved the whole time.

There's a whole lot of issues here that I have to work through - pets are vital therapy for my kids who have Asperger's. If I did get rid of the pets - how? How do we give up family members?

Alternately, what if I look for somewhere else to live? The real estate agent helpfully included with the lease a form to give the two weeks' notice if I plan to move out. Is it possible to find a new home in two weeks? I don't have the money to move. I certainly don't have the energy to pack. Two weeks seems like an impossibly short amount of time. I don't know how to find a house - when I moved in here, I was still in full-time ministry, the church found the house and paid the rent, up until I retired through ill-health. The last time I actually found a house to rent was before RTA existed - I heard about the house through word-of-mouth - and there was no real estate agent involved.

My first step, of course, is to ring the real estate agent as soon as they open on Monday morning and ask what is going on.

A good friend took my son and me out for a coffee last night, while we started to process the shock.

While I wait to find out what is happening, I am feeling the physical effects.  I'm just incredibly tired. (At a time when potentially, I'm going to need lots of extra energy.) Suddenly, I am feeling the apathy that comes with depression - from shock to numbness. All I want to do is sleep.

The cause of my shock was actually a mistake. There was some computer glitch and the data just didn't go across from the old lease to the new one.  A new version of the lease, pets included, was emailed to me on Monday afternoon.  I still have to find more money to pay the rent, but the rent hasn't been raised for two years, so I guess it's fair enough.

Health Blogging Month Day 26: Memories

I still remember… Free write a post that starts with the line “I still remember…”

I still remember the first time I met my rheumatologist.  Well it was only a few years ago.

He looked at my xrays of the arthritis that had started in my thumb, and within a week moved to my wrist as well. He looked at my blood test results.

Then he started asking questions:

  • Had I ever had a rash when I went out in the sun? (Ever since I was a kid.)
  • Had I ever been diagnosed with reflux? (Yes) Had I had a gastroscopy and what did they say? (Just some free-floating reflux.)
  • Had I ever had irritable bowel? (Yes) Colonoscopy? (Yes - they just said it was irritable bowel). That means they don't know what caused it.
  • Had I had headaches? (Yes) Unexplained menstrual problems (Bad enough to have a hysterectomy - with no cause found.)
  • Fatigue, random aches and pains? (Yes, and yes.)
  • Depression? (Yes.)
For the first time in my life someone told me all these random things were actually part of the same thing. I wasn't just so incredibly unlucky to have all these separate issues - I had one condition that caused all of these other strange, seemingly unrelated things.

Since then I've even found that some other lupies had their childhood traumatised by nosebleeds - just as mine had been.  

It was an amazing thing to discover that when I had been sick on and off for years, there actually was a reason. I had been having lupus flares without ever knowing. Being diagnosed with lupus was a shock - but it was also a relief. Suddenly so much that had never been explained now was.

This post was written as part of NHBPM – 30 health posts in 30 days:

Friday, 25 November 2011

Health Blogging Month Day 25: Never have I ever

Never Have I Ever. You stick to your guns – now tell us about what. What is something you’ve never done but want to. What’s something you’ve never done and won’t budge on?

Never have I ever.....

Tough question.

Despite having this stupid disease, most of the things I have wanted to do with my life, I've actually done.  I have worked writing, and in ministry. I have raised two kids to adulthood, and they are turning out to be quite amazing adults. And I am at last in a relationship with the most wonderful man I have ever known, who really does seem to love me just as me. I even took my kids on an overseas holiday once (we had a cruise to Villa, Noumea, and Lifou a few years ago.)

So short of a childhood dream of going to Disneyland, and of seeing snow, all of the things I ever wanted, I have had.

Is life perfect? No, I have this (insert rude words here) disease. I don't have the energy to keep up with my housework. I do have to be incredibly careful of my budget. But do I have any serious regrets about the things I haven't done and now can't do? Not at all.

The other side of the question? What have I never done, and never will do? Give up my Christian faith; give up on my kids; anything else? I don't like to say "never". When I say "never" God has a way of proving me wrong.

This post was written as part of NHBPM – 30 health posts in 30 days:

Thursday, 24 November 2011

Health Blogging Month Day 24: My Mascot

My Mascot! Give your condition, community, or self a mascot. Who is it? What do they represent? What is their battle cry?

If I have a mascot it's my snarling wolf.

I made him as a tee-shirt design, trying to say what I think about lupus. (Yes, he is available at the shirt shop. I've ordered a singlet with him on for the gym.)

I can see him in a couple of different ways.

Firstly, the reason lupus has its name is that some time way back in history someone looked at a lupie and said: "That rash looks like a wolf bit you."

So the wolf fits with the whole history of lupus. Butterflies also get associated with lupus because one of the rashes can look butterfly-shaped as it spreads across the nose and cheeks.

There's something magnificent, compelling, about the wolf - but he's also very dangerous. We are taught from early childhood not to mess with the big bad wolf.

But, we're also taught, through the adventures of Red Riding Hood, Peter and the Wolf, and the Three Little Pigs, that if you're smart, hardworking, have someone strong on your side, or just plain lucky, you can beat the wolf.

So lupus bites, it snarls and threatens. But you know what, the big, bad wolf doesn't always win.

Now let's look at this magnificent animal from another perspective. He is strong. He lives in a tough environment and he knows how to survive. Sound like anyone you know, lupies? Yup. We've been put in a tough environment, and we've learned how to be tough, how to survive.

This post was written as part of NHBPM – 30 health posts in 30 days:

Wednesday, 23 November 2011

Health Blogging Month Day 23: Sticking with it

Health Activist Choice. Write about whatever you want!

I used to be one of those people who always achieved whatever they set out to do. I had the determination of a bulldog - I'd just hang on and hang on and hang on until I got whatever it was done.

There are times I miss that woman.

Now, I seem to collapse in a heap far too easily.

At the start of this month, I signed up to do both health blogging month and NaNoWriMo (National Novel Writing Month - the aim is to write 50,000 words in a month.)

At times, I've wondered if I would achieve either of those things - my daily blog on topics I didn't choose, or coming up with 50,000 words. I must admit to going easy on myself with NaNoWriMo, in that I stated as I began that I would count words written for blogs and for church, as well as my fiction writing in my word count.

The end of the month is coming, and it looks like I'll actually achieve both goals.

My NaNoWriMo effort includes two novellas that I've had published . (If you're interested, you can either read them for free on my short story blog Stories on the Run or get the ebook version cheap or the paper version a bit less cheap from

In the midst of that, one Health Blogging Month post inspired me to open an on-line tee-shirt shop, so of course I had to learn how to use the software to come up with my shirt designs.

Through that time, I have had sick days - in fact a pretty sick week. I've had a health scare that's not finished with yet. (I have a test to repeat in the middle of next week.)

It's good to know that somewhere in the midst of all that I've had to learn about being weak - there's still some of that strength and determination there as well. I can get things done still. Maybe I can't get all the things done I used to. And maybe I have to stop for lots of naps. Maybe I can't get as many things done as I would like to. But I can still set goals and achieve them.

That's inspired me to start taking my weight loss effort seriously again, after a few months of not bothering because medication was making it all just too hard.

So often, lupus tells me what I can't (or at least shouldn't) do. It's wonderful to find that there are still things I can do. Some of what I can do may only ever matter to me - but perhaps I can even still do things that will make a difference for other people as well.

This post was written as part of NHBPM – 30 health posts in 30 days:

Tuesday, 22 November 2011

Health Blogging Month Day 22: Be Present

Be present. Describe something peaceful with as much sensory imagery as you can. What are the sights, sounds, scents, and feelings?

Peaceful?  Well, I guess it is sort of peaceful.

As I write this it's 6.30pm on Monday the 21st. Yes, I do cheat. I write blog posts ahead of time and then set them to publish when I want them to go live. So this one is going live tomorrow at 6am.

It has been a long, hot day.  The thermometer got up to around 35 deg C.  I've been to Curves this morning for the first time in ages. That out-of-control pain in my back and legs is very much back under control.

Then my son and I went to officeworks, so I could get a better office chair. (I confess, I had been using a folding chair at my desk. The physiotherapist was less than impressed.) My son assembled the chair for me while I had my afternoon nap.

So now, I'm in my bedroom/office, sitting on my comfortable new red leather-look gas lift chair. The air conditioner is humming in the background, and although the room doesn't feel cool as such, it is at least bearable.

At the moment, I'm using the Circulation Booster machine - it's buzzing on my aching legs, and the tens pads are cats'-clawing my lower back.  It's somewhere between pleasurable and painful. (I set it fairly strong - something I learned with the physiotherapist, that if I have the tens machine to the strongest setting I can cope with, the pain relief works better and for longer.)

Occasionally my little old dog gets up, has a snuffle around the room, and a bark at the door. But I tell him I can't open it until I'm "unplugged" and he collapses in a heap again.

Because I spend so long in this room, I try to make it as pleasant as possible. So I have everything in pale pink and with pictures of roses. It's a very girly room, but that's fine with me. It's meant to be where I both work and relax. (I have a dream that when one of the kids moves out I'll have a separate bedroom and study - but that seems a long way away.)

My other favourite quiet place is the front patio - but now we're beginning summer and that is far too hot for me. More and more now, up until the weather cools down in about April or May, this little room with the humming air-conditioner and the pink rose decor, will be the world I inhabit.

This post was written as part of NHBPM – 30 health posts in 30 days:

Monday, 21 November 2011

Health Blogging Month Day 21: Reflecting on

Ekphrasis post. Ekphrasis (writing about another art form) – Find a Flickr Image in Creative Commons that inspires you in some way (positively or negatively) and free write about it. Give yourself exactly 15 minutes to write without stopping. Don’t think! Brave bonus: Publish to your blog without editing! (You can include a disclaimer)

Flicking through photos to find something to write about, I saw lots of roads going off into the distance, to be lost at some point where perspective begins.

I thought momentarily that that's kind of what lupus is like - I'm going somewhere - but the end point is hidden in the distance.  For the rest of my life I will travel with this disease that is doing so many strange things to my body.  I don't know how sick I will get, or whether it will have any major impact on my organs.

Then I saw this bridge - it seems just that bit less stable than a highway going into the mountains or forest or wherever.

I feel insecure on a thin bridge over water. (I'm a bit afraid of heights and I can't swim.)  I also feel a bit insecure about lupus. Maybe a big bit.  I am always afraid the worst might happen.

I had a bad test at the opthalmologist last week. Where my mind immediately went was to the possibility of neurological disorder. (I have double vision in just one eye - who has double vision in just one eye? Seriously?) The doctor usually says: "That's fine come back in a year and we'll check again". This time he said: "That's concerning, come back as soon as possible to try that again." He's on holiday this coming week, so I'm being retested the week after.

In the meantime, I'm on the slightly unsafe-looking bridge. In theory, it's safe, lots of people have walked over it and made it safely to the other side. But there's a risk. And right now, the risk is at the forefront of my mind.

This post was written as part of NHBPM – 30 health posts in 30 days:

Sunday, 20 November 2011

Health Blogging Month Day 20: What makes me laugh.

LOL post. Write a post about a moment that made you laugh. Or a video, picture, blog post, or something else that made you.

Well this one's easy for me. Go over to my other blog Not to be Taken Seriously, and see what I've been laughing at over the past few days.

Laughter is important with chronic illness - because depression far too easily becomes a part of the whole package! When I realised that my old collection of jokes I'd had stored away for years "just in case" I needed them for sermon illustrations or some other purpose I never used them for, actually helped me on my bad days - I decided to share them with others.

If you want to share a joke with me (and everyone else), just click on "submit a joke" on that blog, and tell me something to make me laugh - I'll put it up as the joke of the day coming up sometime soon.

If you want more to make you smile - today Mr Bumpy (my son's cat, who is responsible for NTBTS) has a competition starting to come up with a funny caption for a quite cute but bizarre photo. The best caption to arrive by the week before Christmas will win a shirt shop voucher.

This post was written as part of NHBPM – 30 health posts in 30 days:

Saturday, 19 November 2011

Health Blogging Month Day 19: The Best Of....

“Best of” post. Grab a post from your archives and repost it! Add a few sentences at the beginning to frame it. Why you chose it. Why you liked it. And why it should be shared again.

I can see the value of this topic for people who've been blogging for ages - to bring out some treasures old and new out of what they've already written. For me, with only a couple of month's experience, there really isn't that much that's "old" enough to be forgotten.

So here's the posts that I think, together, give the best overview of what it is like to live with lupus.

What is Lupus?

Chronic Pain

The Energy Budget

Between them, these posts explain what lupus actually is, and what it is like to live with the pain and fatigue that comes with lupus.

This post was written as part of NHBPM – 30 health posts in 30 days:

Friday, 18 November 2011

Health Blogging Month Day 18: Commenting on another person's blog.

A comment as a blog post. Pick someone else’s post (from the past or from today) and write a comment to them. Write that comment as your blog post for today. Link back to them to let them know you were inspired.

It Takes a Special Person

I've actually written a comment on this post before... 

What BD is talking about here is so very important.  

When you're diagnosed with something like lupus, it becomes such a big part of life that it can take over everything. It's hard to keep it in perspective.  It's not just that lupies are afraid others won't love us when we're sick, we can feel guilty that they do love us. When I'm so limited in what I can do, when I don't earn a full income any more, when I feel like I don't have so much to offer any more, why would anyone care about me?

And sometimes we find that people do give up on us - because they see the disease and our limitations. (This happens even before diagnosis, sometimes.  My ex-husband simply believed I was incredibly lazy. Long after the divorce, when I was diagnosed, he asked me about my condition. I tried to explain how serious it was - and his response was to tell me that "everyone's dying, it's no big deal." Then when he was diagnosed with osteoarthritis in one shoulder he rang me in a panic wanting sympathy, telling me about this horrible condition that can't be cured, etc. It's apparently far worse than anything I can ever have gone through.)

But strangely, wonderfully, there are people who see past our diseases, our limitations, our problems. There are people who still see us as who we are - and still find something in that to love. 

There is nothing more precious and wonderful than someone who loves me even knowing that the disease comes as part of the deal.

If you have lupus, make sure to tell the people who love you just how important they are to you.

If you love a lupie, know that on those worst days when the going is really tough on everyone, they are very painfully aware of the extra burden that puts on you. 

This post was written as part of NHBPM – 30 health posts in 30 days:

Thursday, 17 November 2011

Health Blogging Month Day 17: Giving up

Let It Be. What’s something that bothers you or weighs on you? Let it go. Talk out the letting go process and how you’re going to be better to yourself for it.

I've already had to let go of so much.

My sense that my value came from the work I do. (Now, the work I do is such a minor part of a life that is mostly focused on caring for myself.)

My sense that to be a good mother I have to do everything my kids need. (I've had to learn that the best thing I can do is teach them how to be independent of me as much as possible – and some of those lessons have been hard for all of us.)

My sense that what I earn financially is a reflection of the value of what I do. (I've had to learn to live on less, and it will soon be dramatically less again. I'm learning a standard of living isn't about what you have, it's what you do with the life you have.)

What do I have left to give up?

My sense of independence. I still want to be able to do everything for myself. I am still embarrassed, even though I'm grateful, when others do things for me that I believe I ought to be able to do for myself. I still have a driving need to see that I have done something worthwhile. (My doctor put it this way: “You're personality's coming through, you're trying to achieve things again. You've got to suppress that.”) I do need to let go of that. I need to accept that what will be will be. If God chooses to use what I can do for something worthwhile, that is great. If all I do today is sleep and take my pills, that is just as good. That's a hard lesson to learn, but I'm working on it. When (if) I finally achieve it, I will be more free to enjoy those things I can achieve – because they're something extra or special, not just what I expect of myself. And I won't be so embarrassed when I can't do things myself.

This post was written as part of NHBPM – 30 health posts in 30 days:

Wednesday, 16 November 2011

Health Blogging Month Day 16: I think I can...

Little Engine Post. Write a list post with 10-15 lines that start each with “I think I can…” Write 5 lines at the end that start with “I know I can.”

I think I can.....
  1. Get out of bed tomorrow morning. (Well, I hope I can.)
  2. Find creative ways to solve problems.
  3. Lose this excess weight.
  4. Think of some more things to write here.
  5. Encourage other people with lupus to see the things they can do despite this condition.
  6. Contribute something worthwhile to the online support network that already exists for people with lupus.
  7. Do the dishes that are piled up in the kitchen (just got to build up the energy.)
  8. Do some washing before I run out of clothes (again, just got to build up some energy.)
  9. Tidy my desk. (Wait! I have a desk? Where did it go? How many unfinished projects will have to dig through to find it?)
  10. Write a Nobel-prize-winning novel. (No, I don't really think so, especially since I don't write novels as such. I just threw it in to see if you were still reading.)
  11. Find an elephant if it were hiding in my strawberry plants.
  12. Make the time to take proper care of myself.
  13. Sleep more than anyone else I know.
  14. Learn to let go of the things that really don't matter.
  15. Stay sane, even if the internet does constantly drop out through the summer.

I know I can...
  1. With God's help, and with the help of my amazing friends, get through any challenge this stupid disease throws at me.
  2. Make the most of the gifts and abilities I still have.
  3. Use the extra time that working only part-time has given me, to develop skills I have not practised for some time (art, creative writing, music, etc), thereby using time that might have been a burden for a valuable purpose.
  4. Keep my sense of humour. No matter how bad things get – laughing helps get things in perspective.
  5. Find the energy to care for others as well as myself.

This post was written as part of NHBPM – 30 health posts in 30 days:

Tuesday, 15 November 2011

Health Blogging Month Day 15: A Song to Lupus!

 This one’s for you, baby.Dedicate a song to your condition. Why did you pick that song? Find a youtube or link to a version to embed in your post.

A song for lupus? I have to confess, I've never thought of singing anything to lupus – but if I had to, how about a really strong break-up song? Something like Gloria Gaynor's “I will survive” - lupus can “Go. Walk out that door. Just turn around now cause you're not welcome anymore. … You think I'd crumble? You think I'd lay down and die? O no not I, I will survive, as long as I know how to love I know I'll stay alive.”

My kids just added their ideas: My son says "Lupus" by Carpathian Forest.

My daughter says we need "Hungry Like a Wolf" by Duran Duran.

This post was written as part of NHBPM – 30 health posts in 30 days:

Monday, 14 November 2011

Health Blogging Month Day 14: Elevator Blog.

Elevator blog. If you were in an elevator with someone and they asked about your blog. What would you tell them?
Make a version for a 30 second elevator ride.
Make a version for a 1 minute elevator ride.
Make a version for a 2 minute elevator ride.

This blogging month challenge just gets more challenging. I don't think I've ever been in a lift long enough for a conversation like this to begin. (There was one time, I was a teenager and dad had a lift to repair - he didn't have an apprentice handy to help him, so he took me - but that's a long story, and nothing to do with my blog. I learned what to do when the "emergency stop" button on top of a lift doesn't work, and that maybe I didn't want to be an electrical apprentice.)

Well, here we go 30 seconds:

I write a blog about lupus. No, it's not about the TV show "House", although I've mentioned that a few times. Lupus really is a disease. They didn't make it up for TV. People like me who have lupus, have malfunctioning immune systems and our bodies just go haywire. All sorts of weird stuff happens to us.

Let's try for 60 seconds:

I write a blog about lupus. You've probably seen the TV show "House", where they always suspect lupus if none of the symptoms fit together. That's what the real disease is like. People like me who have lupus, have malfunctioning immune systems and our bodies just go haywire. All sorts of weird stuff happens to us. Our immune systems mistake healthy tissue and organs for something they have to fight off, and so we end up with our bodies fighting themselves. It can mean strange things like rashes, random aches and pains, or even organs just failing. And we haven't got a cure yet. There's lots of work being done on research and treatment, but so far there's no procedure that a lupus patient can just have and walk away saying "well, that's over." Even when we're well for a while, it's never over. It's always going to come back.

Is anyone reading and timing this? It's a long time since I worked in radio, so I might be completely off at looking at a paragraph and knowing how long it will take.

Let's try two minutes:

I write a blog about lupus. You've probably seen the TV show "House", where they always suspect lupus if none of the symptoms fit together. That's what the real disease is like. People like me who have lupus, have malfunctioning immune systems and our bodies just go haywire. All sorts of weird stuff happens to us. Our immune systems mistake healthy tissue and organs for something they have to fight off, and so we end up with our bodies fighting themselves. It can mean strange things like rashes, random aches and pains, or even organs just failing. And we haven't got a cure yet. There's lots of work being done on research and treatment, but so far there's no procedure that a lupus patient can just have and walk away saying "well, that's over." Even when we're well for a while, it's never over. It's always going to come back.

One of the really tricky things with lupus is that it's everywhere. If you have cancer, your oncologist can show you where it is on an x-ray and can say something like: "Well the tumor is two centimetres wide, that's not too bad. I'm going to schedule you for surgery to cut it out, then give you radiotherapy just in case there's any last traces, and then follow up with chemotherapy just to be sure." Lupus is everywhere your immune system is - so your entire body. We can still use chemotherapy, but it's not to kill off some attacker like it is with cancer - but deliberately to try to kill off some of our immune system. We need to kill off our bodies' defence, because it's trying to kill us!

Of course, if all that's too intense for you, I also do a daily joke blog.

This post was written as part of NHBPM – 30 health posts in 30 days:

Sunday, 13 November 2011

Health Blogging Month Day 13: Random Book

Open a book. Point to a page. Free write for 10-15 minutes on that word or passage. Post without editing if you can!

When I signed up for this blogging month challenge, I thought it would be fun. I certainly didn't realise it would be so, well, challenging.

So, the book I have to hand is The Lupus Handbook for Women by Robin Dibner MD, and Carol Colman.
And the chapter it opened to was "Getting Enough Sleep".

Dibner and Colman tell us that getting enough sleep is not a luxury, it is, a necessity.

Absolutely right it is a necessity.

For me, lupus is a constant cycle: Pain makes me tired. Being tired makes my pain worse. Worse pain makes me more tired. Being tired makes my pain even worse. Even worse pain......  well, you get the idea.

At times, I have gone to the extreme of taking sleeping pills. I also use an air conditioner on warm nights, or basically any not incredibly cold night. I don't have coffee after about mid-morning. (I love my coffee, but that's just how it is.) About mid-afternoon I switch to herbal teas with names like "sleepy time" and "night cup".  I also have an afternoon nap every day. I take my NSAIDs (non-steroidal anti-inflammatory medicines) of a night time to that the pain is under control for my night-time sleep.

Does it all "work"? To some extent.

Sometimes, no matter what I do, I'm in too much pain to sleep - an that's where the trouble begins.....

Whatever you do today, make sure you get plenty of rest as well, and I hope you sleep well tonight!

This post was written as part of NHBPM – 30 health posts in 30 days: