Monday, 31 October 2011

Weighty Issues

OK - there's two things (probably more) that are obvious about me from this blog:
1. I love food
2. I need to lose weight.

Taken together, those two things are a problem.

Now, comes a bigger problem.

This study:


Impact of obesity on functioning among women with systemic lupus erythematosus.



has some very sad news for people with lupus who are obese.

It found that obesity effectively made lupus worse, and made other things that go with lupus (like depression) worse. Women who were studied who were both obese and had lupus had a greater level of disability.

Now here's the kicker. They stated with a the fairly usual Body Mass Index of 30 as being the obesity mark - and then dropped it to 26.8 as a more appropriate level for people with lupus. (So we're obese when we're lighter than other people who are just "overweight".)

Here's what makes my story really sad. I have a BMI of 38. I have been struggling with my weight on and off for years.  I'm not really sure how accurate my BMI is - because it depends on a weight measurement, and frankly, my weight can change by 3kg from day to day because of fluid/steroid issues. Even so, my BMI is still way too high.

I always knew that losing weight would help with the stress on my joints. Here's another incentive.  I guess it's back to the Calorie King website to have another go at getting it right.

It's not easy to lose weight when fatigue and aches and pains interfere with the exercise program, and drugs cause problems with fluid retention.

If you're not sure of your BMI - check out the interactive tools on Calorie King. The formula is Weight (kilograms)/{Height(metres) x Height (metres)}.

Lupus

Sunday, 30 October 2011

Moving

Some time in the next couple of days, the web address for this blog will change to sometimesitislupus.com  Coming to the old address should get you efficiently redirected to the new site (I hope.)

OK they said it would take about three days - it took about 30 minutes at most. ... So far as I can tell everything's working and you should be able to find me with either web address.

New Toy


I've ordered a new toy. It's coming in the next week or so.

It's a Circulation Booster. You've probably seen the "Do you have cankles?" ad. (I've put the YouTube link to their ad here.)  I'd seen the ad heaps of times and because it looks like a ad for something really dodgy, I had never considered getting one.

Since I've been having problems with my legs - another person with a chronic illness and leg problems told me how good they are. They are actually proper tens machines (the same as the physiotherapist uses.) as well as the foot rest part that works on feet and legs, it also has tens pads to use in other sore parts of the body as well.


I have no idea why their marketing didn't say that they were actually useful pain control tools, or that they were the same as the equipment used in physiotherapy clinics everywhere. It would have made the machine look more credible to those of use with chronic pain who are looking for ways of relieving it. (When you're in pain all the time, "cankles" is the least of your worries.)

At a cost of about $300 locally, that's a fairly expensive new toy for me. I found it for $255 on eBay, new, and with an Australian pharmacy tax invoice so I can claim some of the cost back on my health insurance.

It's still an expensive toy - but I have high hopes it will do amazing things for my pain.

I see the physio tomorrow, so I'll check with him about where to place tens pads for my back and my shoulder. Extra physio sessions between visits to the phsysio sound to me like a really good idea.

I'll let you know how well it works for me.

Friday, 28 October 2011

New Love

There's a new love in my life. It's made of rubber and I picked it up for $5 from the chemist a couple of days ago and we've been inseparable ever since. Yes, it's my new hot water bottle.
lupus.cheezburger.com

Back pain, shoulder pain, neck pain, ankle pain, my new best friend is helping ease all of them!

The physiotherapist gave me exercises on Monday, and told me to use heat for my lower back issues that have been bothering (torturing) me for the past few weeks.

It didn't take long, lying on my hot water bottle, before I realised that this would help my left shoulder that always hurts and my neck as well.

There's something comforting about a good old-fashioned hot water bottle. It's not like fancy lavender-scented wheat heat packs or gel packs or any of the other "new" stuff. This smells like cheap rubber and reminds me of childhood. I'm not saying my childhood was one of those fairytale cute fantasy childhoods. Mine was tough in its own way. But I remember how good a hot water bottle would feel on aches and pains then - and it's a great discovery to find it still works today!

I have a few of the more modern gadgets for aches and pains as well. I use one of those spa mats that go in the bathtub, to make a bathtub act like a spa. And I have a hand-held electric massager which has infra-red heating and vibrating to help ease the bits that hurt.

All of this stuff helps. My bucketload of pills each day helps. Nothing ever completely gets rid of pain. But at the moment, I 'm taking great comfort in a cheap hot-water bottle.

Wednesday, 26 October 2011

Starting to Feel Better

lupus.cheezburger.com
Well, I went to the physiotherapist yesterday with back pain.

I was massaged, poked, prodded, zapped with electricity and ultrasound, heated and given exercises.

I felt miserable yesterday afterwards, but I woke up feeling better this morning.

I still have sore legs (the other new symptom that arrived at the same time as the sore back), but my back is feeling so much better already.

Today, I've been doing my exercises and using a hot water bottle.

It's helped a lot.

Strangely, even with my legs still hurting - I feel far more positive. Pain is depressing, it always makes me feel miserable. Getting rid of one bit of the pain is a big improvement. It's a huge improvement.

Someone else is covering for me on Sunday, so I don't have a church service to prepare. It means I can do the absolute minimum this week,  while I recover from my few incredibly bad days.

So while I feel like I've been through the wringer, things are looking up. And that's great.

Monday, 24 October 2011

Tired and Apathetic

lupus.cheezburger.com
I've been asleep most of the day.

I don't want to write much. When I set out to do this blog, I was on a campaign to spread lupus awareness.

Today, I don't care about lupus awareness or anything else. Today, all I care about is sleeping, and pain control.

For a while now, I'be been struggling with weird pains in my legs that have been making me miserable, back pain, and a killer headache.

I saw my doctor today, and she says the leg pain and back pain aren't actually connected. (I'd been hoping that maybe some physiotherapy on my back would fix everything.)

I did get my referral to the physiotherapist - I see him tomorrow. I also got a trip to pathology for a blood test (I had one a week ago, so really wasn't due.) And I got a Vitamin B12 shot.

The nurse warned me that B12 needles hurt more than regular ones.  I thought I was used to needles. I hadn't realised how much worse "worse than regular needles" would be.  Being in pain makes me tired - and the needle to help the problem didn't make me feel any better.

So tonight, after a day of being exhausted and sleepy, I'm still exhausted and sleepy, and very apathetic about everything. And everything still hurts. It's going to be an early night.


Saturday, 22 October 2011

When the Days are Too Long

As I write this, I'm lying stretched out as much as possible on the bed. It's a bit uncomfortable - because I took the sheets off to wash them this morning and haven't had the energy to put the clean ones on.

Eat, sleep, take pills.
What more does anyone want from me?
Most of the day I've been at my desk, preparing for church tomorrow morning. I've been putting it off all week, because it's been a Bad Week, that is a week made up of Bad Days. (For the technical definition of a Bad Day see my post from 19 October, titled A Bad Day.)

It's Saturday night now, and this morning, I realised that I was running out of time to be prepared for tomorrow. So, no matter how miserable I felt, I had to get the work done.  My poor little air-conditioner and my computer have been working just as hard as I have. At last I'm ready - at least I'm ready in the sense that everything is written, hymn words are ready to go up on the big screen, all of those things.

I'm profoundly un-ready to preach or do anything else, in that my body has decided it is going on strike. My head is aching so much I'm sure it's about to explode. (There'll be worn-out brain matter all over the curtains if I'm not careful - and then who will wash that up?) My back believes it's been carrying several tonnes up a hill all day - not just putting one load of washing into the washing machine then the dryer, and sitting at a desk for the rest of the day (except nap time.) My feet and legs hurt, and are swollen.  And really all I want to do is lie here and complain about how miserable I'm feeling.

The things I don't want to do are get up; make my bed; feed my family; do dishes; have a shower and then crawl back to bed.  I want to by-pass all the intermediary steps and just stay in bed now.

It still seems a bit much that offspring require feeding every day. I guess it was probably in the contract when I signed up to have children, but that was a long time ago, and my brain hurts too much to remember the past week, let alone the past 17 to 20 years.

So here's my to do list for Bad Days. These are the things it's really practical to expect a lupie to manage when things are not going well:

  1. (Breakfast time). Get out of bed.
  2. Swallow pills.
  3. Eat.
  4. Go back to bed.
  5. (Lunch time). Get out of bed.
  6. Swallow pills.
  7. Eat.
  8. Go back to bed.
  9. (Dinner time). Get out of bed.
  10. Swallow pills.
  11. Eat.
  12. Go back to bed.
On Bad Days anything more than this is just too much!

Thursday, 20 October 2011

The Doctor's Visit

I can hardly wait until my next doctor's appointment - because I have a new symptom and it's bothering me a lot. My legs have been hurting for days now, and today I notice that my lower back is feeling quite strange as well. I am starting to wonder if the problem is actually in my back, and because of all the nerves involved I'm feeling it as pain in my legs.(That's my current theory, it could be all wrong. Hopefully my doctor will know what's going on for sure when I see her on Monday.)

Between visits to my doctors, I constantly add items to my list of things to talk about. The list is kept in my diary app on my phone, as notes for the appointment. That way, I don't forget anything I need to talk about.

These links: The Lupus Impact Tracker and The Doctor Discussion Guide give checklists for patients who might want a prompt to remember what they need to discuss with the doctor. They go together and look like a good starting point. But ultimately every patient is unique. We all need to know what is important to us.

If I wrote a basic guide to what should go on the list of things to discuss with the doctor, it would include these things:

  • Which prescriptions are on their last repeat?
  • What has changed? (Anything worse? Anything better? Anything just different?)
  • What is new? (New symptoms.)
  • Generally, how have I been feeling?
  • Do I need new referrals for my specialist/s?
  • Do I need new referrals for blood tests?
  • Has anything about my health bothered me this month?
  • Any issues with medication?
  • Any issues with exercise?
  • Any issues with diet?
  • Any other issues?
  • Which other doctors/therapists have I visited this month? Did they say/do anything I need to report back?
That's the kind of stuff that makes it to my list. My doctor's used to the list coming out each visit. 

If we want to get the best out of our visits with our health care professionals, we need to do our homework. Our doctors do rely on medical tests to some extent, but the most important source of information they have is what we are able to tell them. The more aware we are of our own bodies, and the more prepared we are with the information, the more our doctors have to work with as they care for us.

Safe Medication

I found this website MediGuard.org | Safer Medicines, Healthier You that offers to check for free if there's any risky interactions between drugs you're taking.

I didn't sign up for it, because it only allowed for six drugs to be listed. (Lupies of the world, you have full permission to laugh for the next 15 minutes or more.)

I don't know who actually has only six medications (and it says include non-prescription medications in the list.) I'm sure at some stage of my life I had six or less - but that seems a very long time ago, and maybe I only dreamed it.

I'm currently on 12 medications. (Sad, but true. Sometimes I wonder if I could get away with having my pills instead of meals rather than with them.) Some of them are to counteract the side effects of others. Some are for things like asthma and allergies, not just lupus. I just have to count on my GP to know what she's prescribed, what the specialist has prescribed, and to keep checking that they are all OK together - something I know she's careful to do.

It is possible for drugs to react badly with each other. It's a serious matter, and it's important that every time your medicine's changed you check that everything will still work OK together. If you're not sure about yours, you could ask the internet, but it might be better to check with your doctor!

Wednesday, 19 October 2011

A Bad Day

There's a technical term for days like today. It's called A Bad Day. (Yes, it absolutely must have capitals, and be in bold. That's the nature of A Bad Day. It demands attention.)

I woke up with a headache, so tired I feel like sleeping for a month, and my legs are sore. Actually my legs are burning. Yesterday, my feet were a bit swollen, and I took a fluid tablet which should have sorted that out. Today - this is something new. Everything from about my waist down is screaming - it feels like it's not quite part of me, but it hurts so much!

I took things fairly easy yesterday after my night out on Monday. (OK I took things fairly easy yesterday afternoon - in the morning I went to a meeting at the church, had my blood test and went for my regular skin cancer check. Skin cancer check was clear, by the way.)

As with everything "new" I have a strategy to deal with it. I get out my trusty smart phone, go to the calendar app, find my next doctor's appointment, and add the "new" thing to the list. Sometimes I have a very long list. My GP is quite used to me just pulling out the phone list. (Before the smart phone, the list sometimes took up a whole page of the paper diary/organiser.) It's not just a list of "new" symptoms - it also includes which prescriptions are running low, whether I had questions to ask, things I needed to report back, whether I needed new referrals for specialists, all sorts of odds and ends that could otherwise be forgotten.

And for now, what do I do with my Bad Day? I'm going back to bed and waiting for it to be over. Hopefully tomorrow will be better.

Tuesday, 18 October 2011

Got to Finish What You Start.....

Just had to share this one - it's exactly what life is like when the fatigue of lupus sets in!

See more Cheezburger Network highlights at my site: Lupus

Tired and Sore After a Great Night Out

Well, I am very, very tired today, and the joints on my left side are killing me, but it was worth it.

I went out to the movies last night. Mr Wonderful and I saw the movie-theatre version of the 25th Anniversary performance of The Phantom of the Opera. It was absolutely amazing, and worth a few aches and pains and a bit of fatigue today. (OK, as well as the joints, I also have incredibly sore, swollen legs, but fluid tablets will help with that.)

We didn't leave the movie theatre until after 11pm - which for me is incredibly late - and it was closer to midnight before we were home. I can remember being 19 or 20 and staying up to midnight dancing and being able to get up without any trouble the next day.  Now, staying up until midnight, even if I had an extra nap during the day, just leaves me exhausted!

To add to the great night, we also went out for dinner. No, not a four-star restaurant, but a gourmet hamburger place.  We went to Grill'd Healthy Burgers. I have to mention this place, because they have the most fantastic gluten-free bread.

Most of the time, if I go to a fast food place, I end up having the insides of a burger, without the bread. Grill'd not only has gluten free bread - but it's gluten-free bread that tastes good. (There's a lot of gluten-free bread that tastes awful out there.) I had a Moroccan lamb burger, and thoroughly enjoyed it.

So I had a great night. The food was good, the company perfect, and the entertainment exceptional. And if I had to spend today suffering for that, it was a small price to pay! (I'm definitely having an early night tonight.)

Monday, 17 October 2011

Fantastic Freezable Food: Quick and Easy Scones

Scone dough is like a lupus patient - it gets tired easily. Don't overwork it.




Ingredients:

1 500g packet gluten-free self-raising flour
1 cup lactose-free cream
1 cup lemonade





Method:


  1. Preheat oven to 200 degrees C.
  2. Sift flour into a bowl, leaving aside about 1/4 cup for dusting.
  3. Make a well in the centre, pour in the cream and lemonade.
  4. Using a knife, gently combine ingredients. 
  5. Turn out on to a floured surface, and knead just enough to have all ingredients thoroughly combined.
  6. Roll gently to 2cm thickness. 
  7. Using a scone cutter, cut into scones.
  8. Place on biscuit trays lined with baking paper. 
  9. Bake for 20 to 25 minutes until just lightly browned.
Makes 12.

Yummy served warm with strawberry jam.

If you've used the "normal" version of this recipe, you'll find the gluten-free flour makes it somewhat stickier - use plenty of gluten-free flour for dusting, and work the dough as little as possible.

Sunday, 16 October 2011

TiffanyAndLupus: The "Lupus Land" Board Game!

TiffanyAndLupus: The "Lupus Land" Board Game!:

'via Blog this'

Check out this link - I almost died laughing when I read about Tiffany's "Lupus Land Board Game." I want this game. And I want to take it to a Lupus Australia get together to play instead of Mahjong.

Saturday, 15 October 2011

De Agony of De Feet!

These are the kinds of fabulous
shoes I'd love to be able to wear.
 There was a time I practically lived in high-heeled shoes.  As a young journalist, I never felt appropriately dressed for work without a suitably fabulous pair of dressed-up high-heels.

Since lupus, shoes have become a problem.

When I was first diagnosed, I suddenly knew the pain of a friend of mine who has diabetes and had been forced to give up wearing shoes with narrow toes.

For some time, I had been wearing sandshoes to work instead of my favourite shoes because I seemed to get sore ankles, knees, hips and back from wearing high heeled shoes. But by then, I was a minister, and a chaplain working in a huge public hospital. I spent hours on my feet every day, and walked anything up to 25,000 steps per day.

I sacrificed my "professional look" for sports shoes. They didn't look as nice, but it was a necessity. I still wore them with business skirts and blouses. (It was a strange look, but it was practical.)
The kind of shoes I can wear now.

I didn't know I had lupus, and wouldn't have considered myself a candidate for arthritis. I wasn't quite 40, and thought only old people got arthritis.  I just spent too much time on my feet.

The diagnosis of lupus told me why I'd had so much pain wearing my preferred shoes at work.  It also told me something else I didn't want to know.

Lupus, like diabetes and many other conditions, can predispose a patient to a condition called "vasculitis". As a hospital chaplain, I had known patients with vasculitis.  They were the people who came in with a sore that wouldn't heal on a foot - and in the end half the foot was cut off. A year or so later the rest of the foot was cut off. A while after that, they'd be back for half the leg, then the whole leg. Vasculitis is not pretty. If you think "poor circulation" is nothing to worry about, you've never spent any time in the vascular ward of a hospital.

There are some things patients can do to help prevent vasculitis - the obvious stuff like taking our medication as the doctor prescribes and taking good care not to get injuries to our feet among them. Otherwise, a visit to a podiatrist to have our feet checked every now and then is always a good idea.

And we have to avoid constricting the blood flow to our legs and feet. This is the problem with fabulous, fashionable shoes. They are not designed by people who are really interested in the way blood flows around the foot. They are designed by people who want to make fabulous shoes. So, they frequently have tight, pointed toes. No podiatrist will ever recommend anyone wear shoes with tight pointed toes.

I went from wearing whatever shoes I want, to wearing the kinds of shoes my podiatrist says are OK. Instead of going to a shoe shop and just trying what's on the shelf, I now have to go to the kind of shoe shop that measures the foot for length and width, and then selects a choice of what will fit those measurements. These tend not to be the most stylish shoes known to humanity. They also tend to be far more expensive than the shoes at, say, Payless Shoes.

I almost cried when I went to buy dressed up shoes for my cruise with the kids a few years ago. There were going to be "formal nights" and I needed suitable shoes. When the shop assistant brought me a pair with ugly ratty looking flowers on them and said, "these look fun," I was devastated. They were the kind of thing my grandmother would have worn, but only because she'd been dead 15 years and couldn't have any say in it. I paid my money and took the awful shoes home - my daughter took one look and said, "We've got to do better than that." We took them back and kept looking. Eventually we found something much better, but still not the kind of sensational-looking shoes I used to have.

My much-loved stilettos shoes are all gone, except for one pair. (That pair is reserved for going out to dinner, or the theatre, where I'm only going to go from car to a seat and back to the car.) At the time, I couldn't bring myself to throw my fabulous friends out. My daughter's then-boyfriend took pity on me and put my shoes in the Lifeline bin, so I didn't have to.


Even my podiatrist-approved shoes have extra cushioning added in, to absorb the impact of walking in them. (I've got some great insoles from the supermarket, of all places, that give regular shoes the same kind of cushioning as sports shoes. This is very important if I'm going shopping and walking on hard concrete floors.)


I have a dream, shared with my friend who has diabetes and a love of shoes, that some shoe designer, somewhere, will realise that there is a market among women who have chronic illnesses and don't want to wear "grandma" shoes. When that shoe designer releases their first collection, my friend and I are going to have a party. And we're going to wear great shoes.

Friday, 14 October 2011

Give People with Lupus Treatment Options - Recommend Benlysta(R) for Coverage Now - The Petition Site

Give People with Lupus Treatment Options - Recommend Benlysta(R) for Coverage Now - The Petition Site:

'via Blog this'

For people in the UK - this is the site to sign up for the petition to have Benlysta approved there.

The rest of us could sign in support, but I don't know if the UK Government would be interested in our opinion.

(Benlysta is the first drug actually designed for lupus - it's been approved in the USA; but the UK Government has deemed it too expensive.)

I've been searching on the net, but haven't found any sign that the Australian Government's drug approval process has made a decision on Benlysta. It was approved in the USA in March.

Where the links went

Lose the "links" section?  It's moved from the right-hand side of the page, to a page of its own. There's a tabs at the top of the page to allow you to navigate between this page "home" and the "lupus links" page.

It was taking over.  Now it can run wild and free, and keep being added to ad infinitum. I'd love for it to grow to be a useful  resource for lupies to find support and information.

If you know of a good lupus site, email me the details, so I can add it to the list.

Fabulous Fast Food - Chicken and Mango Salad

No photo here - I made it but then I ate it - at the time I was just too tired to think about whether you might like to know what it looks like!


When I'm really tired, I sometimes get tempted by "fast food" - aka something that used to be food before it got dunked in a bucketload of fat and salt, and is now actually toxic.  I'm tempted, because, it seems easier to just pick something up. That's why I keep so many meals in the freezer. I also have a few favourite "make it up in five minutes" recipes, that can get me out of trouble. This is real "fast food", in that I can have it quickly (perhaps even more quickly than going to a "fast food restaurant") but it still has actual worthwhile nutritional value.

This is one of those things you can whip up really quickly if you're tired. (I had one of those days yesterday - picked up the ingredients on the way home from doing perhaps a little more than I should have at church. I assembled the meal in under five minutes. I used pre-cooked barbecued chicken from the supermarket - but it's also a good way to use up left-overs.

Since spring is here, and after our floods in January, which followed so many years of drought, the fresh fruit and veges are quite amazing and fairly inexpensive if you know where to shop. The mangos have started coming out and have been just wonderful.

A nice mango makes a great dessert or a snack on its own - but it also goes really well in a lovely fresh salad.

So here's the recipe. (I confess, I had this at a coffee shop once, and stole the recipe to use at home over, and over, and over again.)

Chicken and Mango Salad
1/2 packet pre-packed washed salad leaves/garden salad ingredients from supermarket
1/2 cup diced cooked chicken (no skin!)
6 cherry tomatoes
1 small mango, peeled, seeded and diced
15g cashews
1 tablespoon oil-free salad dressing (French or Italian is really good.)

Pile your salad ingredients on the plate, pour over the dressing and it's done.
Serves 1 very tired, hungry person. (Or share with a friend if you're not so hungry.)

Thursday, 13 October 2011

Depression | Symptoms of Depression | When to See a Doctor

Depression | Symptoms of Depression | When to See a Doctor:

'via Blog this'

If you want more information on depression (after my earlier blog entry today), this link is for an article in Arthritis Today about depression.

How Depressing!

Every now and then I read articles about researchers discovering a link between chronic illness and depression.

Apparently some of them think this is a new discovery. It's not so new. Most of us with chronic illnesses already know we get depressed.

I have antidepressants in my regular cocktail of drugs - and I'm sure lots of other lupies do too.

So why is this so? (Australians of a certain age, will hear Prof Julius Sumner-Miller's voice with that question.)

I can't tell you what the researchers have found - but here's what it's like from the inside.

Being diagnosed with a serious, chronic illness is a shock.  I realised something was wrong - but until I was diagnosed and did some reading to find out what lupus was and what all these drugs I was being given could do, did it really hit home just how wrong it was. What had been a series of unrelated annoyances: being constantly tired, some really sore joints, irritable bowel, reflux, ridiculously sensitive skin (especially sensitive to sunlight), an unexplained series of symptoms that led to a hysterectomy, etc, etc, were all suddenly the same thing, and it was a very, very bad thing.

I'm not saying I thought I was immortal. As a minister (and especially when I was in hospital chaplaincy) I have spent a lot of time around death. I always knew I was going to die. But that was a more theoretical knowledge. Once I was diagnosed, I was faced with a very present reality. There's a lot of ways to die from lupus (it can attack pretty much any organ of the body), and none seem to be at all pleasant.

Not only that, but the drugs I use to control the lupus, are themselves poisons. I know I'm swallowing toxic substances daily - the methotrexate I take on Saturday nights came with all sorts of warnings about washing hands after touching the tablets, not allowing anyone else to touch them without gloves, and if any of my body fluids get spilled use gloves to clean them up, don't just throw the tablets out and let the poison get into the environment, etc. And I'm putting this stuff in my body! Oh hooray! What joy!

So I carry all of this knowledge of "bad stuff" going on in my body every day.

Then add in the bad days - the days when I'm in uncontrollable pain, or am too tired to get out of bed - the days that remind me that nothing in life can ever truly be "normal" again.

Yeah, I struggle with depression. Maybe there's hormonal things happening, and the lupus affects chemical balances, etc. Whether there is or there isn't, I've got enough happening to get depressed about.

Wednesday, 12 October 2011

Survey | Qualtrics Survey Software

Survey | Qualtrics Survey Software:

'via Blog this'

Only for people in the USA - researcher Sarah Goozee is looking for lupies to participate in a research study. The above link will take you to the introductory information. As an incentive - participants will go into the draw to win an Amazon gift voucher. But let's face it, any more knowledge gained about lupus could eventually benefit all of us.

Vampire Life

I don't like sunlight. In fact, lots of people with lupus don't like sunlight. Ever since I was in primary school, I've had a tendency to get an uncomfortable rash when I go out in the sun. So, I either stay out of the sun all together or cover up with thick layers of sunblock, and only go out for a short while. Because of this, my kids call me a vampire.

As I woke up from my nap this afternoon, I realised I had one other thing in common with these mythical monsters. I live my life at odd times of the day.

Vampires tend to be awake all night, so Bram Stoker tells us (and if you can't trust someone who made a career out of writing about things like blood-sucking monsters and women who turned into giant worms, who can you trust?)

I don't stay awake all night, but I don't stay awake all day the way most people do either. Instead, I have mornings awake, and I have late afternoon/evening awake. That period of time from lunch to afternoon tea I'm asleep.

I would have fitted in very well in cultures which have a siesta in the hottest part of the day (if they still do that.) But when everyone around me gets up in the morning and stays up until they go to bed at night - I feel a bit left out of some things.

Sometimes, I've stayed awake right through nap time. Sometimes it's because I've stubbornly insisted that I was going to do things the way "normal" people do. Sometimes, it's because the weather's been too hot for me to get to sleep. What happens then, apart from the obvious fatigue, is that my pain has increased. For me, pain and fatigue go together. One always makes the other worse.

So if I want to stay out of pain, (and being out of pain is one of my favourite treats), I "opt out" of a couple of hours of every day. I live strange hours, but it works for me.

Tuesday, 11 October 2011

Important Relationships

When you're diagnosed with a chronic illness, a couple of relationships become far more important than they ever have been.

One of those is with the doctor. I mean the GP - the doctor you see every three or four weeks just to check your blood pressure, write out prescriptions, check that everything's going OK. Don't get me wrong, the specialist is important, too. But I only see my specialist once or twice a year. My GP, I see constantly. She's the person who goes through all the ups and downs with me - fills in forms for Centrelink about pension matters, encourages me to stick to my exercise program, laughs with me when it's all going well, and offers sympathy when it isn't. If I didn't have a good GP, having lupus would be much, much harder. I need to know that I can trust Trish, my GP, to know what's best for me and my health from day to day. My specialist might oversee the big picture, but Trish walks the journey with me.

The other relationship is with the pharmacist. I used to go to a chemist right next to the doctor's surgery. But, I  didn't feel very safe with them after a couple of little incidents. The first was that they had a naturopath on staff, who always wanted to sell me stuff to strengthen my immune system. (This worried me, because pretty much the definition of lupus is that my immune system's trying to kill me - and I don't want to help it do so!) After that came the mistakes with the prescriptions. The first couple of times, it was the kids and my prescriptions would have the wrong names on them. I figured that when we had half a dozen or more prescriptions for me and one each for the kids, it was fairly complicated, and since we knew which drug was for which family member, it didn't really matter. Then came the time they got the dosage on one prescription wrong. And that's when I changed chemist shops.

Now I go to Chemist Warehouse at Ashgrove. (I'm hoping they won't mind me using their name, since they're the good guys in the story.)  It's a bit further to travel to pick up my medicines, but it's worth it, because they don't make mistakes, no matter how complicated my shopping list.  They're always really nice to me, and they remember me. They keep my prescriptions on file there, and let me know when I'm running short of repeats, which is one less thing for me to remember. They also keep track of the prescriptions dispensed, and know when I've reached my safety net, so I can have free medication for the rest of the year. I do still look at all my medicines when I pick them up to be sure - but there's never been anything wrong, and I'm confident I can trust Andrea and the other pharmacists there.

My daughter once said it was sad that all the staff at the chemist's know me - and in a way is sad. I never really wanted to be sick enough to be a regular customer there. But, since I am a regular customer, I'm glad to have people there I can trust, who are looking out for my best interests.

Saturday, 8 October 2011

A Reminder of Storm Seasons Past

16 November 2008, when the palm tree fell across the
driveway, and our street turned into a waterway.
This morning, I woke up to severe storm warnings repeatedly on the radio, and text and email alerts from the Brisbane City Council's Early Warning Centre.

While I rushed to make sure the car was locked in the garage, and told the kids to bring in any loose stuff from outside, I remembered another severe storm, not all that long ago.

It was 2008's storm season, and I was still working at the hospital. In what became known variously as "Supercell Sunday" and "The Gapocalypse", the suburbs of The Gap, and Keperra, and others surrounding us were hit by a series of intense storms, referred to on the day as "mini-cyclones."

The storm had begun as I was driving home. Rain was making visibility minimal, and there was water over the road.  I know that there is a good reason the police warn people against driving on flooded roads - but I knew my son was home alone. He didn't cope with storms at all well then, mostly because the dog went berserk and he couldn't cope with the dog.

So, I drove on, past other cars parked at the side of the road.

I came to the end of our street and turned in - to find it was blocked by fallen trees. I went round the long way to the other end of the street, and trees fell down behind me as I drove in.  I got home, and moved the bird cage from the patio into the garage, and put the car away, just as the worst of the hail, wind and lightening began.

Our power went out. Phone lines went down. For about 24 hours we were without normal lines of communication.  In the brief times the mobile phones would get a signal, I was able to contact my daughter and tell her to stay at the friend's house she was visiting until further notice.

Only a couple of weeks before the storm, I had attended a disaster management seminar. It was quite amazing to see everything I had learned about in theory roll out in practice around me. Emergency centres were set up, information came out on the radio. (I'd had to go and buy a battery-operated radio - even having been to the seminar, I wasn't ready.) A warning came out fairly quickly that our water supply could be contaminated, so we had to get bottled water.

Almost as soon as the storm was over, neighbours started helping each other out. Someone in our street had a chainsaw, and started cutting up the trees that had fallen on the road and across our driveways.

What amazed me when time came to clean up our yard, was my son. At age 14, he understood my limitations.  He saw me attempting to cut back broken branches, and announced, "Mum, you can't do that." He did it. He cut broken branches, he dragged corrugated iron (which had been a carport from across the road) to the rubbish pick up point on the footpath. He worked harder in those few days when we had no power than I had ever seen either of my kids work on anything.

I did still do more than I should have. There was no way out of it, there was just too much to do, and many of the jobs in the clean-up my son didn't know how to do alone. I did enough to show him how.

I needed a lot of sleep time to catch up, but I made it through without my lupus becoming worse, mostly thanks to my amazing son who on that day showed me he was not a child any more, but a responsible young man.

Friday, 7 October 2011

Yeah Steroids!

I'm over the cold that the kids still have! Woo-hoo!

How did this miracle happen? I can only put it down to the prednisolone.

Usually, when they get a bug and share it with me, they recover in a week, and I'm still struggling a month later.  Often it can start a flare, and I'll have extra joint pain and fatigue going on much longer than a month.

This time around, after a couple of days having very, very long naps (four hours instead of my usual two), I'm back to "normal". (The kids are both still in bed sick.)

I worked out at Curves today and finished the circuit without any bother at all.

A cold that is gone after one night of "painsomnia", and two days with long naps - that is just soooooo good!

Well, I'm off to be superwoman. I'm going to write a church service and mop out the laundry on the same day! (Even after a workout at Curves.) And to finish it off, I'm going to a ballet performance tonight (I know some of the dancers.)

It will be a sleep in day tomorrow for sure! But a sleep in day's great when I do it because I choose to and not because I'm incapable of getting out of bed.

Wednesday, 5 October 2011

Australian Health Advocates Push for ‘Fat Tax’

Australian Health Advocates Push for ‘Fat Tax’:

'via Blog this'

The debate is on as to whether a "fat tax" - taxing foods containing saturated fats will help to curb Australia's intake of unhealthy foods.

We have taxes to try to encourage healthier habits with regard to tobacco and alcohol. Saturated fat is another health risk factor that puts a cost on the community (as well as on the individuals affected by it.)

Would people think twice if that incredibly fatty food was more expensive? As much as they think twice because the bottle of wine or beer or box of cigarettes is more expensive. The tax alone might not change behaviour; but if it at least partly was used to subsidise programs to help educate people and help them adapt to a healthier diet, that would make a difference in the long-term.

There are other potential benefits to a fat tax. At the moment, the fattier foods are sometimes cheapest. For example plain old beef mince gets more expensive if you buy the less fat varieties - there can be more than a dollar or two a kilo difference between 25% fat mince and 5% mince. If the "fat tax" could then be used to subsidise healthier foods - that would make it easier for lower-income families to have a healthier diet.

House Season Eight Sneak Peak - Lupus Again!


It's reassuring that I'm not the only slightly lupie person who watches House just waiting for it to be lupus again. When I saw Friends Against Lupus had put this You Tube link on Facebook, I was thrilled.

House has just about made lupus cool!

Sharing a family "bug"

It's going to be tough to balance the Energy Budget today.

I didn't sleep well last night - the pain wasn't sore joints this time.  This time it was my armpits! Those glands that telegraph the coming of a nasty bug have been hurting all night and are still painful this morning.

I could have expected this - my daughter's been down with a sore throat since Sunday, and this morning my son has it too. I'm clearly next on the hit list.

Coming down with a bug is never a great experience for anyone. My family all has a tendency towards getting infections, either chest infections or tonsillitis. That's not good. Worse, is a tendency to share every bug any of us picks up.

For me, a bug is a very bad thing to get. Most of the medication for lupus is designed to suppress my immune system. (That's because my immune system is attacking me.) But of course, an immune system is kind of needed to fight off bugs of all kinds.

My immune system is sparked by the bug and gears up (despite the drugs used to slow it down) to fight off the bug - which is what it's meant to do - but it also decides that while it's on the go it will attack everything else. Hence, a bug that might make someone else sick for a week, might cause me a flare that could take several weeks or even months to get under control.

So, with the signs that I'm brewing something, how do I handle today?  The same as any otherwise healthy person who is brewing a cold or flu - rest as much as I can, drink plenty of fluids, keep comfortable, a bit of eucalyptus in hot water to open the airways, and wait until it's all over.

Explanation of The Energy Budget

Tuesday, 4 October 2011

Gluten Free Treat: Blueberry and Almond Pavlova

Sometimes it gets frustrating to just not be able to eat what everyone else is having. The whole gluten and lactose free diet thing is so limiting. Add in that food for me needs to be low-fat, and of good nutritional value for the calories (because I'm supposed to try to lose weight while taking steroids) life just gets complicated.

This recipe isn't one of my freezeable ones, so you do have to only cook as much as you need or can use within a day or two. It is, however, a wonderful dessert, that can finish off a dinner nicely, without being over-the-top in calories, and very low fat, with no gluten or lactose.

Only try this if you have an electric mixer. It's great with my fantastic Kenwood Chef, but if I were still using a hand whisk (which I did before arthritic hands) it would be impossible.

So here it is:



Blueberry and Almond Pavlova


Ingredients:

2 egg whites
1/2 cup caster sugar
1/4 teaspoon cream of tartar

2 punnets fresh blueberries
3 tablespoons flaked almonds

50g dark (dairy-free) chocolate.


Method:

Preheat oven to 120 degrees celsius.

Cut two sheets of baking paper to the size of biscuit trays.  On the back of each sheet draw six circles, each of about 9 centimetres diameter. Turn them over (so the drawn-on side is underneath - but the size and shape can be seen - and use them to line biscuit trays.)

In your electric mixer (use a whisk attachment if you have one for best results) beat the egg whites and cream of tartar until stiff peaks form.  Add in sugar a teaspoonful at a time while beating.

On one of your prepared baking trays: spoon meringue mix equally into each of the circles and shape to thick discs.

Bake in oven 30 minutes. Then turn oven off, open door, and leave meringues to sit for 60 minutes to cool. (Once cold, meringues can be stored in an air-tight container for a couple of days.)

While meringues are cooking, toast the almonds - spread them on a foil-covered tray and toast under the grill. They brown quickly, so watch closely.

Then the chocolate! Melt the chocolate by placing in a bowl over a dish of hot water. Pour melted chocolate into a plastic bag, and push down into one corner. Snip the end off the corner of the bag, and use like a piping bag, to drizzle lines , swirls or zig-zags of chocolate in each of the circles on your second of your oven trays.  Once you have used up all o f the chocolate, pop it into the fridge to set.

To serve your amazing desserts: on each plate place a meringue, top with blueberries and toasted almond flakes, then top with a chocolate circle.

It looks amazing, is very low in anything unhealthy, and is gluten and lactose free. (It also takes very little physical effort or time to make.)

Serves: 6

Monday, 3 October 2011

Oral steroids bring on Vit D deficiency - The Times of India

Oral steroids bring on Vit D deficiency - The Times of India:

'via Blog this'

Steroids can cause vitamin D deficiency.

Avoiding sunlight can cause vitamin D deficiency.

Lupus patients get it from every direction!

It's a good idea to have a check on Vitamin D when having the regular blood test, and to have the doctor work out how much (more likely than whether or not) vitamin D supplement is a good idea.

Vitamin D helps us absorb our calcium and make strong bones - because the last thing any of us want on top of all our other problems is osteoporosis!

Pies go with peas,
Crackers go with cheese,
Dogs go with fleas,
Steroids go with vitamin Ds.

Sunday, 2 October 2011

Thoroughly relaxed

I've just had a wonderful weekend away at Noosa. (I didn't do the driving.)

A weekend of quiet, with no work, kids, or responsibilities, is an amazing thing. I slept a lot, but also had a nice walk along the edge of the lake, and had a walk down Hastings Street looking at things far too ridiculously expensive to buy.

I've come back feeling thoroughly relaxed and well-rested.

One of the side-effects of prednisolone is that it causes me to retain fluid.  That's not a big problem, except the inconvenience of having to take fluid tablets occasionally (yes, fluid is eliminated from the body in the obvious way, so it can be inconvenient to take the tablets.) If I don't take the fluid tablets, I tend to get sore swollen feet and a headache.  I forgot to take my fluid tablets with me on the weekend, and a headache was just brewing as I got home. That's under control now. It's a reminder of how aware of my pills I have to be, and that I always have to be prepared for everything.  (When I go on holiday it's like carrying an entire chemist shop with me!)


I had my check-in with the doctor on Friday since I've been out of pain, and able to go back to Curves, the doctor said I won't need to go for hydrotherapy after all. Instead  my prednisolone is staying at the higher dose for a while longer, possibly fairly long-term.