Tuesday, 31 July 2012

Stretching the Dollar

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After my post last week about stress, and my anxiety about a payment I was expecting coming later than expected, I was sent the fantastic picture on the right as an example of an alternate way of dealing with household bills.

I like this idea, really, but I suspect the phone and electricity companies will have trouble accepting this as an excuse.

So assuming I'm going to have to actually pay my bills, the next best thing to do is to keep the expenses as low as possible. (By the way, I have received my quarterly payment now, I'm not about to starve or go homeless.)

One of the best places I have found to go for information on how to save money from week to week is at Cheapskates Club. They have all sorts of hints and tips on reducing the cost of basic household expenses - simple things like using both shelves of the oven instead of just one - making the same energy to twice as much work. There's more complex things, like how to make your own washing powder, for a couple of dollars for six months supply.

The Cheapskates Club produces a free email newsletter with money-saving ideas.

The same people have also written a book called Debt Free Cashed Up and Laughing, which I read before I discovered the website. It has a lot of the household hints and tips (and the washing powder recipe.)

There are government-sponsored websites which help with ways to save money, or make better use of money.  The Australian Securities and Investments Commission MoneySmart website gives advice on household budgeting, avoiding scams, just about everything else you can think of involving money.

The Federal Government Living Greener website gives advice on saving energy and water and avoiding waste. These are other ways of saving money, with a bonus of cutting back on pollution as well.

Having had my income reduce dramatically over the past few years, has taught me is that many of the things Australians spend our money on are not really necessary. Of those things that are necessary, there are often cheaper ways to do them.

References:
ASIC MoneySmart website www.moneysmart.gov.au
Australian Government LivingGreener website www.livinggreener.gov.au
Cheapskates Club, cheapskates.com.au
Debt Free, Cashed Up and Laughing

Sunday, 29 July 2012

Lupus: Before and After

Life is very different since lupus.
People with chronic conditions like lupus tend to categorise our lives into "before" and "after".

You might have noticed that there's a little sports carnival going on over in England at the moment.  Lots of people seem to be interested in following it on television and radio. Me? I'm avoiding it.

To be honest, I was never really big on watching sport. But there was a time when I really loved taking part in it.

As a kid I did judo.  And in my 30s I discovered taekwondo. That was lots of fun. The medal collection in the picture includes some from state, and national championships, and the Asia Pacific Masters games.

I wasn't good at sparring (too afraid of getting hurt) but I was fairly good at technical events: patterns and breaking boards. Training a couple of nights a week helped me keep my weight under control as well.

But that was before lupus. That was when my joints didn't hurt when I moved, when I had the strength to do something like breaking a board with my foot or fist. It was when my joints could actually bend and I could kick at head height.

After lupus? Now my workout is hydrotherapy. I get in a warm pool and walk up and down the pool several times, bend and stretch bits as far as they will go (and they do bend and stretch further in the warm water). Everything's very, very gentle.

I'll never get to win a medal for hydrotherapy. It might be as hard, or even harder, than training for the nationals years ago, but there's no recognition for the work. At least I'm moving, and doing something that's good for my body. It's worth celebrating the little I can do.

Saturday, 28 July 2012

Stress!

lupus.cheezburger.com
Stress and lupus flares go hand in hand. They seem to feed off each other. The worse I feel physically, the worse I feel emotionally. At the same time, emotional set-backs can start to tell physically if I'm not careful.

In the past couple of weeks, I've been starting to feel quite well again. (Well for me. I realise that some people would not consider that especially healthy - but I have been appreciating it.)

As I've emerged from the pain and fatigue, I've found I've been better able to take care of my emotional needs as well. I've gone back to having my quiet prayer time in the mornings, that my life just seemed too pressured to allow before. I'm finding it easier to stick to my Calorie King program - suddenly it's not a major effort to turn on the computer and write in everything I eat. Nor is it difficult to eat heaps of fruit and vegetables. And the time and effort to cook a proper meal doesn't seem such a burden as it was. I went to hydrotherapy once last week, and twice this week, slowly building up. All is going well. I even felt confident to try putting my profile on a dating site again.

Just today - I'm feeling bombarded by stressors.

The big one is money. I have some debts that were established when I was working full time and could pay for them easily - now they're a challenge to pay and my budget is very tight. My income comes from a variety of sources - some monthly from the bit of ministry work I do, a very little bit fortnightly from social security, and a quarterly pension from the church's superannuation fund. I expected the quarterly payment a couple of days ago. It hasn't come through yet, so all that's in the bank now is enough for next week's rent, as long as I don't buy food or petrol. That's one stressor.

Another is a conversation I had on-line today with a man who sought me out because I'm a minister. He was very angry and abusive towards me, because of something a member of another Christian denomination did many years ago. (I would have been a small child at the time.) To be fair, he wasn't just anti-Christian. He was anti-all-religion. I just happened to be a convenient target for the attack.

So today, I'm having a lying on the couch day. I'm trying to get things in perspective, and pick myself up to carry on.  I have had a slight eating binge, but stopped myself before I got too far. Right now, the important thing, is to get my head clear, get on top of the stress, before it does anything to harm me.

Wednesday, 25 July 2012

Tuna Salad

While I'm desperately trying to get my cholesterol down, is a good time to share with you some extra-healthy, extra extra low-fat recipes. This one's a really quick and easy lunch.

Tuna Salad


half cup diced celery
half cup diced tomato
half cup diced cucumber
half cup diced carrot
half cup diced capsicum
75 grams cold cooked basmati rice
1 small can tuna in springwater, drained
teaspoon lemon juice
cracked black pepper

Place vegetables, rice and tuna in a bowl, toss gently, sprinkle with pepper and lemon juice.
Serves one.

This meets half an adult's vegetable requirements for one day - see the National Dietary Guidelines

How Much is Enough?

dogs.icanhascheezburger.com
I'm desperate to have my cholesterol down before it's re-tested in three months time. To that end, I'm making sure I eat my five serves of vegetables and two of fruit every day.

If you're not sure about that, a serve of vegetables is usually about a cup of raw vegetables or half a cup of cooked vegetables. (This doesn't include things like potato or sweet potato, which  contain so much carbohydrate that they're classed with grain food like rice, pasta or bread.) So I'm having two and a half cups of vegetables each at lunch and dinner. This is very filling.

A serve of fruit is generally just a piece of fruit like an apple or an orange or small banana, or a couple of smaller pieces of fruit like strawberries or kiwifruit. I'm making sure I eat some fruit each at breakfast and afternoon tea time. (This means I am back to eating afternoon tea, even though I can't have domperidone then - so my tummy does complain a bit. I just can't get down the sheer volume of food I need to eat in three meals a day.)

Of course, there are other food groups I must eat to get my day's nutrition: protein foods, carbohydrates, and dairy foods, as well as a small amount of healthy fats. I'm struggling to eat the bare minimum of these after the fruit and vegetables are accounted for.

That is causing me a problem.  Tracking my eating on calorieking.com.au, I'm finding that I'm just not eating my energy requirements for the day.  I'm eating so much food that's very low energy-density, I'm not able to eat much of anything else.  I just don't feel I can fit it in!

In theory, I ought to lose tons of weight.  So far, that's not showing up on the scale. But that has been an issue all along for me. My body seems very determined to hold on to its fat reserves in case Australia's struck with a sudden famine.

Reference:
National Dietary Guidelines for Australians

Monday, 23 July 2012

Cholesterol

lupus.cheezburger.com
I've just been to the doctor for my 45 year old health check (it's only a year late.)

It's a government initiative to screen people for possible issues.

Even though I see the GP fortnightly, and she has a fair idea of everything that's happening, we still did the series of tests.

The results?

I'm in the median range of risk to develop type 2 diabetes. I'm overweight (no surprise.) My heart and blood pressure look good.

And... my cholesterol, which has always sat on around 5 (normal), has suddenly become 7.6 (high.)  The doctor asked if there was any change to my diet. Like what? Did I suddenly start eating saturated fats? No. I eat a lot of fat - because I take nine fish oil capsules per day - but that is a monounsaturated fat.  I eat dairy products for calcium and minerals, but always opt for low-fat versions (as well as lactose-free). I cut the visible fats off meats on the rare occasions I eat meat.

So what has happened? I don't know. The doctor says the other option, if I didn't start eating saturated fats, is that my body's producing it. There could be an issue with my liver.We're retesting my cholesterol in three months, to see what changes. Hopefully, this bad result will be a one-off. But, just in case, you can be sure I'l be extra-diligent about my food between now and then.

Saturday, 21 July 2012

Reconsidering The "Crazy Cat Lady" Option

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After less than a week of being on the internet dating sites, I'm starting to wonder if being alone and becoming a crazy cat lady isn't a better idea.

I thought my biggest issue with dating was that I struggle to know when to start talking about lupus.

No. That's minor compared to a new rule I've discovered: assume all men are creeps until proven otherwise.

How did I come to this conclusion? Well, it's a sad story.

I had put my profile on two sites, one paid and one free.

On the free site, I had a couple of conversations, which I found it necessary to terminate and block the gentlemen involved within about two sentences. Then I had a conversation with another gentleman who asked what a minister was doing on that site. I said a friend had recommended it. This nice man told me the friend mustn't like me very much, and it was really a site for people looking for one-night stands. We had a very nice chat in which he recommended I use a reputable site, and suggested the paid one I was on.

The same night, I had a conversation with someone on the paid site. It started out OK.  He was going to a function - the kind of thing he needed a tux for, and wanted to know if I'd go as his date. Sounded good to me. Then it got strange and the conversation went on, apparently I'd be his brother's date as well.  And from there it quickly got to a point where I ended up blocking him. So that was the "reputable" site.

My membership on the paid site is paid up for three months.  I don't know if I'll stick it out that long.  The more people I meet, the better the crazy cat lady option is looking.

Wednesday, 18 July 2012

Trying Again

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Well, I've done it. I've actually put my profile back up on the internet dating site where I met Mr Wonderful.

There's a whole etiquette about dating sites that I'm not sure of, and I suspect no-one else is either.

Communication with people whose profiles look good is by means of "kisses" which are a limited set of pre-written statements, and are free to send. Emails can follow, but they require "stamps" - now, one stamp opens up a channel of communication between two people for a month - but someone has to buy it.  A book of three stamps (which is the minimum - you can't just buy one stamp) costs about $45 - so it's not a small investment, really.

So when the first communication I get from someone is a a kiss which says "If you buy a stamp, I'll buy coffee", I respond with another kiss that says something like "I like your profile, looking forward to hearing from you."  Why? Well, like I said, I don't really understand the etiquette involved, but I thought it was a great idea when one man had written on his profile: "If I send the first kiss, I'll buy the stamp. If you send the first kiss, you buy the stamp." In fact, I liked that so much, I copied that on to my profile.

Most of the men's profiles I read that have anything about the whole matter of stamps on them contain the complaint: "If women want equality, why won't they pay for the stamps?" Well, darlings, in the past two days, I could have paid for three stamps to talk to three different people who made the first contact. Two of these gentlemen hadn't completed their profiles, so I couldn't even tell if I had anything in common with them. All three gentlemen, however, had sent as their initial contact the kiss that promised they'd buy coffee if I bought the stamp. This leads me to wonder if: a. I look like I'm desperate; b. Australian men are just plain cheap; or c. they didn't even read my profile as indicated by not knowing what I already said about stamps.

My profile picture.
Aside from that little bit of frustration over not understanding the social mores of that initial contact, I have one much bigger and more important issue: at what point do I tell a potential new partner about my lupus?

This one's a struggle for me. When I'm relatively well, I feel like it's not really important. But I'm not always relatively well.

I have a tendency to err on the side of being up-front. I warn people fairly early in the contact that I do have this issue which can affect all aspects of my life, including relationships. There's a big risk here of scaring someone away prematurely. I opt for that, instead of the risk of becoming attached to someone, and then finding that they can't handle it when I get sick. If the rules of the site allowed links - I would include a link to this blog so that men could actually assess for themselves what this means before they contact me.

So, I'm back out there, looking.  Am I going to find my Prince Charming this time around? It's only been two days, so there's no knowing. I do know that in the next couple of years my kids will leave home. And I don't want to end up being the crazy cat lady living alone with my pets for the rest of my life.

Tuesday, 17 July 2012

Rice Paper Rolls

This is a nice light, gluten-free, low-fat snack or lunch.
The recipe makes 10 rolls.

Ingredients:
1 skinless chicken breast fillet
1tsp soy sauce (gluten-free)
10 sheets rice paper
2 cups shredded vegetables (I cheat and use Woolworths rainbow salad. Otherwise use a mix of your choice of salad veges, such as carrot, celery, mung beans, mushrooms, and shred finely)





  1. Sprinkle soy sauce over chicken breast, and cook in microwave according to your microwave's directions. 
  2. Finely shred the cooked chicken.
  3. Place a sheet of rice paper on a dinner plate. 
  4. Brush rice paper with a pastry brush dipped in water. 
  5. Once rice paper has softened, place about a tenth of the chicken and about a tenth of the salad on one end of the paper.
  6. Roll the paper up, tucking in the sides to make a sealed packet.
  7. Repeat with the rest of the ingredients.
  8. Rice paper rolls can be stored in a sealed container in the fridge, if needed.
  9. To serve, cut each roll in half on an angle.
  10. Can be served as is, or with your favourite Asian dipping sauce.
(I've typed the recipe into Calorie King each roll is approximately 65 calories/ 265 kilojoules, and contains about half a gram of fat. This does not include dipping sauces.)

Saturday, 14 July 2012

Top Excuses for Missing Hydrotherapy

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Since the start of winter, I've had lots of excuses very good reasons for missing hydrotherapy.

My main objection has been that while it's nice in the warm pool, it's freezing when I get out. I've sort of overcome the problem by getting a dressing-gown that's relatively absorbent for the waddle from the pool to the shower. I couldn't afford a towelling one, but this is OK

Another issue is the window of opportunity to go.  On weekday afternoons the pool's only available for hydrotherapy for about two hours - because it's used kids' swimming classes and other classes at other times. So if I'm not ready to go at the right time, it's not worth going. (Yes, I could go up to an hour after its opening time and still get in my hydro session, but don't use too much logic on my perfectly good excuse.)

My other issue happens year around. I get home from hydrotherapy and I need to sleep for three hours. It takes me about 15 to 20 minutes to drive each way, then 30 to 45 minutes in the pool. So effectively, I lose the entire afternoon when I go. Doing that three times a week means losing three afternoons a week that I could have spent reading books, watching DVDs, or feeling guilty about the work I'm not doing.

I had thought it was the hydro that made me so tired.  I found out different today.  On Saturdays, there's four hours free for hydrotherapy. It wasn't so cold today and after days of rain, it was fine. So I packed up my gear and went to the pool, to find that it was the one Saturday of the month that the pool was being used for "catch-up lessons" for kids.

The woman at the desk said: "You could come back at four o'clock." I realised that after driving there and now I had to go home, going back at four o'clock was way out of the question.  I drove home and had a three hour nap.  Yes, it's the drive that leaves me so tired, even without the time in the pool!

So now I have another very good reason not to go.  I've got a pretty good list of them.

I have only one reason to go: my health.  I need some exercise, and this is what my rheumatologist recommends as the very best exercise for lupus.  The support and warmth of the water make exercising less painful, and the resistance the water provides means it is actually a proper work out.

So, if you're looking for me on Monday afternoon, I'll be in the pool.

Friday, 13 July 2012

Weight Loss: How Does It Feel?

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At weight loss group last night, we took a look at the question of mindfulness from another angle.

Usually when we look at it, we look at being aware of what we eat. Awareness of what we are eating involves taking the time to eat slowly, to notice the taste, texture, smell of the food. To really appreciate it. We do that because, when we're more aware of what we're eating, when we appreciate the food we eat, we are satisfied with much less.

Now, what about the other side of the equation? How do we know if we are, in fact, satisfied?

Last night, we looked at being aware of our own bodies, the cues our bodies give us as to whether or not we need to eat, and when we've had enough.

We used balloons, blown up to different levels, to represent having our stomachs full to different levels.  We passed them around and took turns at describing what each level felt like. The same condition can feel different to different people, but here's some of the things people said:

Starving. Some of us were able to admit to having never felt this. Of those who could identify with being in this state, the most common term used to describe it was "desperate" - that people who felt they were starving felt totally out of control and would eat a large amount if they had the opportunity to do so. People also described it as feeling a pain, and as being weak, shaking. One of the ladies in the group has diabetes, and to be in this state can cause her to have a "hypo".


Hungry. Most of us could identify the feeling of being hungry. Hunger could for a few of us appear as a pain, somewhere in our mid-chest area. Some said they could have headaches or feel weak or tired and lethargic.





Satisfied.  Most of the group identified feeling satisfied as almost a non-feeling - that nothing was uncomfortable. Everything is OK.  For a few of us, working out if we were actually satisfied while having a meal was a difficult thing to do. When satisfied, people had energy, felt content and comfortable.







Full. For many in our group, it was difficult to tell the difference between being satisfied and full. Often we would reach the point of being full without having realised that we were satisfied first. Unlike being satisfied, we realised that we were a little uncomfortable being full.  










Over-full. The only person who couldn't identify what this felt like was the lady who is in the group for support to gain weight in a healthy manner. For the rest of us, being over-full was an unpleasant experience. It was uncomfortable, even painful. Some people felt nauseous and  wanted to vomit. They could have shakes, or feel hot and cold. For me, it feels like food is just sitting in my mid-chest and just not going anywhere.


Our homework for the week is to be more aware, not just of what we eat, but what's happening with our own bodies. For thin people that probably sounds strange, but for people with a long-term weight problem, we do lose contact with those basic signals that tell us when we have had enough. If we can't tell the difference between being satisfied and full, it makes it very hard to avoid eating more than we need to.

Thursday, 12 July 2012

The Cost of Lupus

lupus.cheezburger.com
It's always nice to know that the issues that affect me at least affect other people as well. I'm not sure why that is - except that there's some sense of companionship in shared problems.

A recent survey in the USA shows that, in terms of what lupus has done for my working life, is pretty much what it has done to the majority of lupus patients there a well.

The majority of lupus patients reported that lupus had affected their working life in some way. Many had retired earlier than expected or had their careers cut short in other ways. Lots have had to change careers, and/or reduce their working hours. Many had taken time out sick.

So my having two years out from work, effectively going into very early retirement on health grounds, then working only 30% time, in supply ministry (meaning I can stop at any time if my health fails again), is pretty typical of lupus patients.

That means that all around the world, people who have increased living costs because of the cost of lupus treatment, are living on much reduced incomes.

Lupus affects our health. But it also affects our livelihood, our sense of usefulness or purpose, our families. The big, bad wolf, takes so much away from us. A diagnosis of lupus means that everything we planned to do with our lives has to be re-examined. But it doesn't mean our lives have ended.



Reference:
Wall Street Journal Market Watch, Study Shows The Burden of Lupus on Work and Wallet

Wednesday, 11 July 2012

Why I'm Tired

lupus.cheezburger.com
I said I'd let you know the results of the sleep study I had a bit over a week ago.

The results were all good. My fatigue levels aren't caused by sleep apnoea or any other sleep-related condition. In fact the sleep specialist I saw today said they can be pretty much explained by three things: lupus, lupus drugs, and excess weight. (Well, there's a surprise.)

I do snore, and I do stop breathing at times during REM (random eye movement - dreaming-stage) sleep. But I don't do either any more than is considered normal.

The doctor's recommendations: lose at least 10kg (well, I need to lose 30kg according to the rheumatologist anyway), and sleep on my side instead of my back.

Apparently, excess weight is starting to affect my throat. It's not problematic yet, but it was hard for him to see my tonsils, and it could become a problem if I put on any more weight.

Tuesday, 10 July 2012

My Achilles' Heel

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Patients for a Moment Blog Carnival this month is asking healthcare bloggers about our Achilles' Heel.

Achilles was the Trojan War hero, son of the goddess Thetis, who tried to make him impervious to any attack by dipping him in the River Styx when he was a baby.  For this process, she held him by the heel - so his heel didn't get wet. Achilles grew to be a great warrior, but was eventually killed when Paris shot him in the heel with an arrow.

Unlike Achilles, I'm not impervious to attacks.  I tend to suffer constantly from aches and pains, and because I take drugs to suppress my immune system I pretty much catch every but that's going around. I don't have just one vulnerable area. I've vulnerable pretty much everywhere.


If there is one area that is worst of all for me, it is - and I know this sounds strange - the times when I forget that I'm sick.  How could I forget, when I swallow pills by the bucketload? Simple. I have a few good days, or even a few good weeks. I do a bit more than I have been doing, and get away with it. I'm really well (for me at least.) So then I do a bit more. Then I skip my afternoon nap, because, after all, I'm really well at the moment. Then I skip my afternoon nap for a couple of days in a row. Then I do a bit more exercise than usual, a bit more work than usual, then a bit more housework than usual.....

Well, you can see where it's going.  There's a limit to how much "extra" I can do. My rheumatologist has a few standard lectures he gives me regularly, things like: "with lupus, if you over-use it, you lose it" and "stop trying to prove you can have a normal life."

I don't really try to prove anything.  I just feel so well, that I just do what I feel I'm able to do.  But feeling can be deceptive.  I can get away with doing just a bit more for a while, but eventually my body says, "that's enough", and suddenly I'm overwhelmed with pain and fatigue and it will take days and days of rest for me to start feeling human again!

Monday, 9 July 2012

Home Made Fast Food

Need a quick lunch? Don't discount the humble spud.
Confession time Lupies! Who gets really tired and either skips meals or goes out for take-away, rather than cook a proper meal?

I've done both. Neither is a healthy way to deal with the situation.

Skipping meals affects your energy levels and metabolism, as well as whether or not you can take your pills.

Take-away food is usually high GI, high fat (often saturated or trans fats - the bad ones), and really isn't designed with good nutrition in mind. It usually costs far more than preparing food at home. It also takes time to travel to get the take-away, which often means it's not really so "fast" at all.

I have a couple of much better options, that do work for me, and save me both time and money.

The first option is to cook extra of meals, and keep some in the fridge or freezer so it's a simple matter of reheating.

Another is to always have the ingredients on hand for a couple of quick, easy, and healthy meals. The humble spud makes a great basis for this kind of meal.  It's possible now to get white potatoes which are naturally low GI.

My lunch today was a microwaved potato, cut in half and topped with a tablespoon of light sour cream, 25g light grated cheese and some chives fresh from the garden. I followed it with a grapefruit sprinkled with artificial sweetener.

The humble spud can be topped with a variety of quick and easy toppings:

  • Sour cream, cheese, and chives
  • Salsa, cheese, avocado, beans
  • Leftover pasta sauces
  • Diced bacon or ham, tomato and herbs
  • Leftover savoury mince
  • Diced cold chicken and avocado
  • Three bean mix and chilli sauce
  • Ham and pineapple, with a little melted cheese
  • Tomato sauce, salami, mushrooms, olives, herbs and cheese
  • Mono-unsaturated margarine and garlic
  • Tuna with lemon juice and pepper
Serve it with a side salad (you can buy pre-packed salad mix that keeps well in the fridge for a few days, if needed), or follow it with a serving of fruit, and you've got a nutritious meal. It's much faster and cheaper than going out for take-away, and far healthier.  And it doesn't take much energy to prepare.

Saturday, 7 July 2012

There's A Nap For That

lupus.cheezburger.com
I woke up with a few aches and pains this morning, fortunately they settled when I started moving.

I slept really well last night, but I'm still tired today.  In fact, although I've had a really good week health-wise, I seem to have got a fair bit behind on everything. I must have been in slow motion pretty much all week.

So it's 2pm on Saturday, and I'm half way through writing a sermon for church tomorrow morning.  I'm worrying about time - but I can't work at all well tired. If I just keep pushing myself, what I write will make no sense at all.

There was a time when I could just push and push myself and I could meet any deadline. That doesn't work any more.

Now, there's only one thing to do. Have the nap my body is telling me it needs, then I need to trust that I can do the work I have to do in the time I have left.

Friday, 6 July 2012

Buyer Beware

lupus.cheezburger.com
A few days ago, I posted about people in social media promoting the off-label use of a particular drug.

A major fraud case brought against a pharmaceutical company in the USA has very recently demonstrated the dangers of off-label drug uses.

GlaxoSmithKline was fined $3 billion after admitting to making fraudulent claims about the safety and effectiveness of drugs for off-label uses.

The actual complaint against the company alleged the results of trials of the drugs for non-approved uses had been misrepresented, when the drugs were promoted. And the drugs had been heavily promoted. Among the allegations was that some anti-depressants approved only for use in people over 18, been sold for use in younger people, and the result had been a number of suicides.

Can I suggest there's a lesson in this for people who promote the off-label use of any drugs for purposes that haven't been fully tested? (Not just that you can get into trouble for fraud, but that the practice can put people's lives in danger.)

References:
ABC News
Complaint against GSK

Wednesday, 4 July 2012

Appreciating Little Things

lupus.cheezburger.com
I went for a walk to the local shopping centre today.

OK, it's only about a 10 to 15 minute walk each way. For most people that's no big deal. For me? Well, I haven't been able to walk that far since my steroids were reduced back in February.

It appears the sulfasalazine I've recently started taking, is making a difference.  I walked to the shops, and back again, without needing to stop there for a rest.

I managed to even have my rest time without actually having a nap today as well.

Things are definitely looking up. I know from experience I can have a great day like this and then have things fall apart, but one good day is worth it, and hopefully it's a sign of things to come!

While still talking about exercise, I've been missing hydrotherapy a lot lately.  It's winter here in Australia.  A nice warm pool is fine on a freezing winter day - but getting out and walking to the shower, that's not so nice.  While I'm still feeling well, it's time to toughen up a bit and face  the freezies! I missed today's session (I was going for a walk.) But Friday, I'll definitely go, maybe.

On another matter, I got back my letter from Breastscreen Queensland. It said something along the lines of: with regard to your recent torture session, we have found that you have no signs of breast cancer at this time.  Please come back in two years so we can squash your most sensitive bits again, just in case.

Monday, 2 July 2012

To Sleep, Perchance to Dream

After the photo, a nasal canula was
added, holding a sensor over my mouth.

I spent last night in hospital, no it was nothing serious. In fact, it wasn't for treatment of any sort.  It was a sleep study, for diagnostic purposes.

Even with my pain levels mostly under control, I've been suffering from lots of fatigue.  The sleep study is to find out if there's some other cause of my being tired.

So happens at a sleep study?

The preparation was fairly simple, shower and wash my hair, but not to use hair conditioner, talcum powder, moisturisers or  deodorant, then to pack my toiletries and pills, and pyjamas for a night at the hospital. (It had to be cotton pyjamas not satin or polyester.)


After checking in, I was wired up. 


There were electrodes on my legs to check for restless leg syndrome, across my chest to check heart function, and a lot of them on my scalp to monitor brain function, some on my face to keep track of eye movement, and whether my jaw was moving or I was grinding my teeth.


All the wires that were attached to me.
Next came elastic bands around my waist and chest with sensors to monitor my breathing.  The chest band also had a sensor to note which position I was sleeping in.


After the above photo was taken a nasal cannula was added (the same as used for oxygen - but not connected up to oxygen) which had a sensor wire hanging from it across my mouth. This was to check whether I was breathing through my nose or my mouth.  This was the most unpleasant part of the whole experience. If you've ever had a nasal cannula, you know they're uncomfortable, and have an incredibly strong plastic smell. 


An oximeter was attached to my finger with a bit of tape, and then I was fully wired up.


The technician left the room to go to the computer monitor, and spoke to me through a speaker giving me instructions to move my eyes, breathe, hold my breath, lie in different positions, etc to check that the sensors were working correctly.


The equipment in the room, connected to computer
equipment in the monitoring room.
After that it was lights out. 


I had trouble getting to sleep. I always have trouble sleeping in a new place, and the nasal cannula was very annoying. I did toss and turn a lot, and was surprised that none of the electrodes came loose, the goo they stick them on with is heavy-duty stuff.


Strangely, when I did sleep, all my dreams were about the sleep study. Hospitals are usually incredibly noisy, busy, places. The sleep unit is incredibly quiet. My dreams supplied the noise and busy-ness of a hospital. 


In the morning, the technician came back and unplugged me from everything. A hot shower to get rid of all the goo that had kept the electrodes attached was wonderful. Then it was a matter of eating breakfast and driving home.


The information gathered will go to my regular doctor and a sleep specialist. In about a week, I'll see the sleep specialist to get my test results.