Weight Loss: A Different Normal

How different is life when we weigh what we "otter"?
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Weight loss group hasn't met for a couple of weeks, because the leader (me) has been having a lupus flare.

So tonight, we're back to basics: We're remembering what we're here for.

I'm going to get everyone to close their eyes and imagine. See themselves when they reach their goal (whether that goal was to lose weight, to put on weight, to do something else for their health) and are maintaining their goal easily.

We're going to start with what they look like when they are that person.

Then we're going to ask:

• How does it feel to be this person who just naturally takes care of their health?
• How does this person, the one who maintains their goal easily, handle stress?
• How does this person handle the days when it's just "too much effort" to cook?
• How does this person handle going to a restaurant? Or a social function?
• How does this person handle feeling genuinely hungry?
• How does this person handle the days they really don't want to exercise?
• How does this person react to being given a huge box of chocolates?
• How does this person handle boredom?
• How does this person behave while going to the movies, watching tv, reading a book?

There's a lot of difference between the person who is "naturally" healthy, and a person doesn't take care of their health.  It's not usually a "natural" difference. It's a difference between the habits we form. Habits can be changed.

If we've always nibbled while at the movies or watching tv, that contributes to our being unhealthy, but it's a habit we can break. If we've always gone looking for junk food when we're stressed, that's a habit we can break.

Homework for everyone this week? Be the person we were just imagining!

The Eyes Have It

Plaquenil and eyes aren't always a good mix.
Fortunately, eye problems caused by Plaquenil are rare.

I spent a bit of yesterday afternoon with a man gazing into my eyes.

No, I wasn't looking across a candle-lit table at Johnny Depp or Keanu Reeves.

I was looking into a very bright light held my my opthalmologist.

He was looking for macular degeneration caused by Plaquenil, one of my lupus drugs.  It's actually an incredibly rare problem.  An optometrist thought he'd seen it a few years ago, scared me silly and sent me to the specialist. The specialist reassured me it's so rare no optometrist would recognise it if they saw it, but said I should come back every year and check just to be sure.

Six months ago, the test wasn't quite right.  It wasn't wrong enough to do anything about it, just to watch more closely. So yesterday, I went for a six-monthly test that used to be an annual test.

It was good news.  There's no sign of anything wrong this time around. I don't need to go back until this time next year.

Checking for a side-effect that virtually no-one gets seems a waste of time. On the other hand, being able to see is quite a valuable thing, so if I were one of the hopelessly unlucky few, it would probably be good to know early enough to change my medication before I went blind.

It's a reminder that these pills I swallow to fight lupus, are themselves horrible, toxic substances. My doctors are constantly trying to balance the risk of the pills against the risks posed by lupus itself. For me, and other patients, there's a constant need to be sure we're taking our pills exactly as directed, and to be aware of what side-effects to look out for so we can tell our doctors as soon as something is wrong.

Inertia

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Inertia is the tendency of a body at rest to stay at rest.  (Or a body in motion to stay in motion, but let's face it, that very rarely has any impact on me.)

I'm thinking about doing something with my day. But all the things I come up with involve changing out of my warm dressing gown, and getting my feet out from underneath a very warm hairy dog. So, this body at rest on the couch, is remaining, at rest on the couch.

I used to be a high-stress person, one who always got everything done.  Now I seem to be able to overlook lots of things that are less than perfect. (You only have to look at the typos I let go through on some of my posts to realise I've given up on obsessive perfectionism.)

My GP thinks that high-stress, perfectionist, attitude to life might have been one of the triggers for my lupus flaring in the first place. Nobody knows for certain what causes lupus, or what causes it to flare. But the constant stress of the high-achieving person who wants everything totally organised, and everything done perfectly, has to have some impact.

Whatever you're up to today, have a good day. Me, I'm going to lie on the couch a bit longer and think about what I'm doing with the day.

Winter

Woof and I are under the furry blanket.
We're staying here until half-past spring.

Winter is starting here in Brisbane.

I don't like the cold weather. Cold weather dries out my skin and hair, and it makes my joint hurt.

Today my dry skin is so bad, I've just knocked off one of the bumpy bits of rash, so my arm's bleeding.

I also find that when my skin's dry I get more redness on my nose and cheeks. Yesterday, my son said to me: "Mum, how did you get sunburnt when we've been inside all day?"  I'm fortunate, I don't get a pronounced "butterfly rash". I just get a bit of pink or red that comes and goes. It does look like sunburn. (And I really never get sunburn because I just don't go out in the sun.)

So at the moment, my best friends are my hot water bottle (which moves from one joint to another), and the sorbolene moisturiser I keep slapping all over my skin.

Lupus App

Arthritis support board:

'via Blog this'


Dr Akerkar is developing an app for Lupus patients to track symptoms, appointments, questions for rheumatologists, etc. He's looking for input from lupies as to what we feel we need included.

Borrowing From "The Simpsons"

I don't normally count on The Simpsons for any  degree of wisdom, but I'm emerging from weeks of pain and fatigue, am behind on housework, and have a house inspection notice stuck on the fridge. I still have to take care of my own health, and have a number of doctor's visits and tests, etc lined up over the next few weeks. Somewhere I have to find some time to do my actual job.

So I'm taking some advice from The Simpsons' nanny Sherry Bobbins - and cutting every corner.

Apparently, it's the American way. Which is probably why I never learned it. I'm Australian, and I grew up with the Protestant work ethic. I was Methodist before the Uniting Church was formed - the heritage of John Wesley was strong.

Here's my tips for cutting corners around the house:

1. Cook with pre-made sauces. (Yes, I know they taste nothing like fresh food. This is a temporary situation until I'm well and back on an even keel.)
2. Use the microwave (erk!) more and the stove less.
3. When you cook an actual meal, do extra and freeze or refrigerate leftovers so you can just reheat for lunch the next day.
4. Organised enough to have made an actual grocery list? Order on-line and have it delivered (the delivery person actually carries it inside.)
5. Use pre-made packaged salads from the supermarket. Add tomato and other things that don't keep so well in the bag, just as its being served, then it at least looks fresh.
6. Buy pre-grated cheese. (If desperate, even the horrible powdery parmesan.)
7. Kitchen wipes, bathroom wipes, flushable toilet wipes.  Don't clean anything properly, just give a quick wipe as you walk past. It will look relatively clean, and you won't go nuts seeing grime building up that you don't have the energy to do anything about.
8. Use the clothes dryer. I hate doing this because of the cost and because of the environmental impact, but when I've been this sick, that's what I just do.
9. Do what I call "pottering around", just do a tiny bit of something productive, then have a rest.  Do a tiny bit of another productive thing, have a rest.  You'd be surprised how much actually gets done.
10. Keep a list of all the jobs to do, broken down into their smallest possible parts. Each little part is an achievement. (Haven't had the energy to do the dishes, and now you've run out? Wash one sink load - don't dry them just leave them to air dry on the drainer. Come back after a nap and put them away. Do another sink load after the next nap.)
11. Multi-task where it doesn't take extra energy. (Eg, while I write, I have a hot water bottle working on my sore lower back, and the TENS machine on my feet and shoulders. I'm doing self-care stuff while I write.)
12. Make what you do count for more than it otherwise might. (Eg. while I didn't have the energy to do anything else, I lay on the couch reading. I got reacquainted with a favourite theologian, and used that book as the basis to write my reflection for the church newsletter this week. My "wasted time" was then made productive.)
13. Reuse what you can. When I'm unwell, I use worship services I wrote from another time the readings came around in the three-year cycle and simply update it, rather than starting over. (When I'm really well, I write a new service.)
14. Make the most of the resources you have. I currently have two adult offspring and a niece in my house. I can order other people to take the dog out for a wee, or to do a load of dishes or vacuum the carpet, or take out the rubbish. (I find they're also more willing to clean benches etc, if they have the disposable cleaning wipes, which are quick and easy.) They won't do things like changing cat litter - but I'm working on it.  Last night my daughter learned where the mop is kept, which is a big step forward.
15. Weeding the garden? Spray with weed spray if possible. If the weeds are too close to the actual plants, pull out one when walking past. Next time pull out another. Don't try to pull out two weeds in the same trip.
16. I'm considering, but price has put me off a bit, having the chemist do my pill sorting for me. (It's an extra $5 per week on top of the cost of the medications.) That would save me the effort of pill sorting day, and would mean less risk of me making mistakes when I have brain fog. It's also easier to bring a pre-pack made up by the chemist if I have to go to hospital, than to take all of the boxes and bottles of pills in their "original containers". (If I should end up having to have surgery, I will definitely have this done for the time I'll be in hospital, and recovering at home.)

We began with The Simpsons, so let's finish up with a tip from Homer. (Although, I must state here and now, that I absolutely love my job.)

Well, That's Unexpected

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About a week ago I started having tests because of a horrible pain I was getting across my lower back, especially on urinating.

I was expecting the best possible result to be a urinary tract infection, and the worst to be lupus nephritis (kidney involvement in lupus).

What I wasn't expecting was that the problem would be a completely different organ all together. I have a bleeding ovarian cyst.  What happens here? I redo the ultrasound in a few weeks.  Hopefully the cyst will resolve itself.  If not, and if it gets really bad, there's an option for surgery.

I've had the surgery before, and am very glad that hospital procedures and methods of surgery have changed a lot in 24 years.

So what has changed? Let's go back to 1988, and I'll tell you a little story. Don't like medical horror stories? Don't read the rest of this post. (Spoiler alert: it does have a happy ending. The heroine survives - and age has made her a lot tougher and more assertive.)

It was June or July 1988.  I was a journalist in Mount Isa, North West Queensland. I had purchased my three-day pass to World Expo 88, and my Greyhound bus ticket to Rockhampton. I'd been going to meet up with some other people in Rocky and we'd all catch a train to Brisbane. I had two more days of work and then I was going. I had just that day given the spare key to my flat to a man I'd dated a couple of times (let's call him "M", he features in the story a bit) so he could feed my cat while I was away. He liked cats and the cat seemed to like him - and she didn't like many people.

All good. I woke up in the morning feeling sick. Feeling guilty, I phoned into work sick, sure that everyone would think I was taking off on my holiday early.  By lunchtime, I was vomiting uncontrollably.  I went to my local GP, who told me I had a touch of food poisoning and go home and drink flat lemonade.

I did as I was told and went home and went back to bed.

In the middle of the night I woke up feeling as if my abdomen had exploded. The pain was the worst I'd ever experienced, and worse than anything I could have imagined.

I barely crawled to the phone. I was going to ring the ambulance, but thought how far away the door was to let them in.  Instead, I called M.

He came around, called the ambulance, and followed the ambulance to the hospital. It was about 3am, and I was so sick I barely knew what was happening. People poked and prodded me.  Somewhere in the midst of it, someone asked if the man who came in with me was my boyfriend. I said "sort of".

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By daylight I was in a ward, with a drip in my arm, under observation.  To fill my bladder for an ultrasound, I was given an injection of diuretic, and had two bags of cold saline solution squeezed through my cannula. The pain was excruciating!  The last thing I needed with the pain I already had was a full bladder, and I had to hold it then until the ultrasound person was free.

There were blood tests, and urine tests. No-one told me if they found anything.  About 6pm, I was told I was going for a laparotomy.  No-one told me what a laparotomy actually was.

The last thing I saw as I lost consciousness was the GP who had sent me home with "food poisoning" - he was also an anaesthetist at the hospital - leaning over me saying: "fancy seeing you here." (Later that year, I would discover when covering a court case that this GP was also a pathologist and the Government Medical Officer in Mount Isa at the time. He was everywhere doing everything.)

What I remember from the next 12 hours or so was someone telling me I was in recovery, then being back in my room having nurses clean me up. They were very impressed with the bag M had packed for me for hospital. (He had found the over-night bag I kept packed in case I had to go out of town to cover news stories.) One nurse was saying she'd never seen so much blood.

The next morning M visited, with a heap of "women's" magazines. No news magazines. Nothing I was at all interested in. He told me I'd been bleeding into my stomach.  He knew because he'd given permission for the surgery, and they'd explained it to my mother (in Rockhampton) on the phone as well and she'd told him. I knew my dressing was far too low on my abdomen to be anywhere near my stomach.  But this was all I found out for most of a the week.

It was just before I was discharged that I actually saw the doctor who'd done the surgery and asked what he'd done.  He was surprised, surely my family had told me. He'd done a laparotomy, cut my lower abdomen open, pretty much right across, to see what was there. He'd found an ovarian cyst that was bleeding and stitched it over. Don't worry, he'd saved the ovary. He'd already explained to both my boyfriend and mother. (I was 22, and apparently didn't deserve to be consulted personally about my body.)

I didn't have to go back to the hospital except six weeks later to have the staples in my tummy removed.

I never did get to World Expo 88. My friends went without me, and I sold my ticket to someone else.

The medical world has changed since then.

I've had my appendix out by keyhole surgery, which left no scar, and healed very quickly.

A year or two before I was diagnosed with lupus, I had another gynaecological problem - constant bleeding and pain led to me having a hysterectomy. No cause for the bleeding or pain was found, but if the doctors had then known I had lupus, I suspect that would have been the explanation. That surgery was done by a very nice doctor who explained the whole process with me beforehand, removed the uterus vaginally so as not to leave a scar, and followed up afterwards to check that I was well and there were no complications.

If I have to have surgery for my ovarian cyst this time, it won't be anything like my 24 year old horror story. Nowadays, doctors discuss issues of my body directly with me. If I'm not conscious or capable of taking part in decisions for some other reason, they'll talk with someone I specifically nominate, not someone who just has my spare key so they can feed my cat. And they can do an operation like this one laproscopically, so I won't have another huge scar across my abdomen.

Finding a Gift for Someone with a Chronic Illness

My Kindle e-reader, so much easier
and lighter to hold than a book.

If you read my blog because you have a friend or family member with a chronic illness, maybe you've wondered what makes a great gift for a person who is sick. Maybe you could get some inspiration from the wonderful gifts I've had.

I've had some wonderful presents for my birthday this year. I had flowers, a phone calls from overseas, lovely cards and letters, some gorgeous shower gels I'll be able to use when the weather is warmer and my skin not so fragile, teas, coffees, low-GI potatoes (sort of an in-joke), a marble cutting board for the kitchen.

I had some incredibly useful and practical gifts. One was my Kindle the kids gave me. I'm in the process of populating it with books - and, where I can, replacing my paper books for the electronic form that is lighter, easier to carry, and takes less space.

It's an incredibly practical gift because my house resembles a library - about half of it is my professional library and the other half is just what I love to read.  Paper books are heavy, and they take up space and gather dust. And I love them.  I had always said I would never give them up for an e-reader. But now, when I'm looking at how hard it is to hold a heavy book, and how easy it is to hold my Kindle, I've got to say I'm hooked.



Last night I received another amazing gift.

A friend of mine had been unable to come to my birthday party, and we'd planned to meet last night to have dinner and go to a concert.  I had been looking forward to the concert, but only made it through dinner before I was too tired. We did, however, have a great dinner. And my friend gave me the most amazing gift.

I perhaps ought to explain that my friend is a nurse. (Not just any nurse she has a PhD in nursing and is a university lecturer.) And we've been friends a couple of decades. She knows me very well, and she knows about people who are sick.

Groceries - with special treats thrown in.
An amazing gift.

What she gave me - was a huge bag of fresh fruit and two supermarket bags of groceries.  There were all the basics like toilet paper, tissues, toothpaste, and breakfast cereal. But she also included:

•  baby wipes (because she knows that some days going for a shower is just such a huge effort and a quick freshen up is all I can really hope for), 
• sorbolene and a dry skin wash for my irritated dry skin, 
• sensitive skin washing powder, 
• gluten free pasta and pre-made pasta sauces (from my recipes you've probably guessed I don't usually use pre-made sauces, but the time has come when cutting corners is the only way to go), 
• that rice that cooks in a minute in the microwave - and a premade gluten free sauce to add to meat to go with it,
• small packs of nuts I can carry in my handbag (it can be very hard to find gluten and lactose free foods when I'm out at doctors etc.)
• a block of my favourite chocolate,
• herbal teas, and decaffeinated coffee bags,
• vegetable juice so I still have some nutrition when I don't have the energy to eat,
• a spray thing I've never heard of before that sprays on clothes to take out wrinkles so they don't need to be ironed,
• long-life almond milk (I haven't tried almond milk before, so I'm looking forward to it),
• cash (quite a lot of it actually - just tucked in behind the chocolate where I wouldn't notice it until I was unpacking groceries - when she was no longer here).

I'm always awed by generosity of the people who are closest to me, but not only that, but by how well they all seem to know me, and to know what I most need (even when I don't realise it.)

As to the question I began this post with: What does make a great gift for someone with a chronic illness? Anything that shows you care is always good. Anything that shows you know them well, and which will help make their life a little easier is amazing.

Just The Essentials

My "essentials".

Often when I go out, I carry not just my handbag but a calico bag with what I consider "essentials" for being away from home.

It contains all the medication I am likely to need for the time I plan to be out, but for the rest of the day as well, just in case I stay out longer than planned. It also has my "emergency" drug meloxicam - an NSAID (non-steroidal anti-inflammatory drug) for use when pain is totally out of control. There's also a tube of Voltaren (anti-inflammatory) gel to go straight on to sore joints.

Sunblock is an absolute necessity, and I go nowhere without it. There's also hand cleaning gel (I'm obsessive, but I have good reason to be), and in winter a hand moisturiser. Tissues are fairly standard for most people.

There's a paper diary which has the basics of my medical history in it, with contacts for family members and doctors, and details of all my medications. (I have the same information in my mobile phone, but phones can break, crash, eat data.) I also tuck blood test orders, doctor's referrals, etc in the back of the diary, so it's always in the bag when I go to appointments. I don't have to think about where I left important pieces of paper.

Since my birthday, my gorgeous new Kindle the kids gave me goes everywhere as well. Even if I only go out to buy fruit and veges, there's a chance I'm going to want to sit quietly somewhere and recover before I drive home - and the Kindle is much neater and lighter than many of the paper books I used to carry.

Depending where I'm going, a bottle of water, a couple of reusable supermarket bags or a reusable coffee cup, or a piece of fruit, will be added, but those are the basics.  The bag is usually left mostly packed, with just the pills and extras to be added before I go out the door.

Lupus is Skin Deep

My lumpy, warty-looking rash is spreading.

Lots of people with lupus have skin problems.

Most of us feel sick if we've been out in the sun.

Lots of us get rashes of various sorts.  The rash that gave lupus its name is the butterfly rash (malar rash).  It is a rash across the nose and cheeks. (It was thought to look like a wolf-bite.)

I don't get that rash - the worst I get on my face is a slight pink or red tinge across my nose and cheeks that comes and goes fairly quickly.

What I have a history of getting is ugly lumps. As a child I used to get them when I went out in the sun.  So I stopped going out in the sun. (I had nosebleeds when I went out in the heat anyway, so staying out of the sun wasn't an issue for me.)

I still get it when I have a lupus flare - usually on the back of my shoulders, but this time it's spread to my legs as well - little bumps that look sort of like warts.

It could be worse. Some people have much more severe rashes (discoid rashes) that can be anywhere and can itch and be painful.

At the moment, it's late autumn and heading into winter here in Brisbane, which means my skin is drying out terribly as well. It splits easily and hurts. I'm down to using QV bath oil instead of soap for bathing.  I was given some beautiful shower gels for my birthday - and I have to wait for summer before my skin will be tough enough for me to use them.

I wear sunblock every day. I avoid sunlight wherever possible. As well as having problems of my own with sunlight - lupus medications leave me even more sun-sensitive. I've had a basal cell carcinoma removed from my face - and I don't get sunlight on my face any time I can avoid it.

No News

I'm receiving lots of care and attention.
(Or is it just that the cat wants to be fed?)

I've been fairly unwell for a while now. I'm sleeping about 16 to 20 hours a day. I've also got lots of lower back pain.

So blogging is a bit erratic at the moment.

Yesterday I did blood and urine tests, today I went for pelvic ultrasounds.  Tomorrow I'm going for a kidney ultrasound.

At the moment, I've got no answers.  So if you don't hear from me much for the next few days - I'll be asleep.

Blogiversary

It's my blogiversary.  Sometimes It Is Lupus is a year old today.  I've been thinking for a while about how I want to celebrate - but the day has come and I don't want to celebrate. Not one bit.  What I want is for someone to come up with a cure - so I have something real to celebrate.

The first thing I saw on Facebook this morning was a photo of a beautiful young woman named Susan. She's just died from lupus. I didn't know her - but I feel her loss.

I thought of including her photo here, but I don't know her family and it would be such an intrusion on their grief to ask permission. In the Facebook photo, she's a beautiful, slim, blonde lady with a huge radiant smile. I feel for the family who has watched her fight, and lose the battle with this horrible disease.

The next thing that happened today was my fortnightly trip to the GP.  I had some extra symptoms to report on this fortnight. (Oversharing warning - don't read the rest of this paragraph if you don't want to know.) I have been getting horrible pains right across my lower back, which become much worse when I urinate.

So today, I did extra blood and urine tests. Over the next two days I go for a kidney ultrasound and a pelvic ultrasound. Both ultrasounds the same preparation, and are done at the same place, but they can't both be done on the same day. As the ultrasounds require having a very full bladder for a very long time - I'm going to spend the next couple of mornings quite uncomfortable.

What am I at risk of here? Hopefully a simple urinary tract infection - but the testing has to be done because there's a risk of lupus causing kidney damage. Lupus can cause damage to any organ of the body.

Am I celebrating my blogiversary? No, because today I've been reminded why I started this blog.  Lupus patients are dying. Our bodies are fighting a battle and the enemy is our own immune systems. We need a cure. We need people to know what we are going through, and we need them to care.

Gluten-free Quiche

Bacon and Parmesan Quiche (front),
 Spinach and Feta Quiche (back right)

OK I just gave you the brownies - now here's the quiches - these are what I made to take to the World Lupus Day barbecue on Saturday.

These are small quiches - made with the disposable foil pie dishes - I find using a full-size flan tray the filling does not cook through so evenly.


Quiche 

Pastry
(This amount of pastry makes two quiches in the small foil pie dishes.)
1 1/4 cups gluten-free plain flour
pinch salt
100g dairy-free margarine, softened
1 egg

Bacon and Parmesan Filling
(fills one case)
4 eggs, beaten
1/2 cup light lactose-free cream
1/2 cup grated parmesan cheese
50g bacon (no fat) finely diced


Spinach and Feta Filling
(fills one case)
4 eggs, beaten
1/2 cup light lactose-free cream
50g feta, finely diced
50g frozen spinach -defrosted, drained and squeezed

1. Spray foil pie dishes with non-stick cooking spray.
2. Sift flour and salt into mixing bowl. Add margarine (in spoonfuls rather than one big glob.)
3. In my Kenwood Chef, I use the k-beater and mix on minimum speed. In whatever mixer or food processor you use, go for a slow speed, process until the margarine is spread evenly through the flour and has the consistency of breadcrumbs.
4. Add egg. Use a pulse (if you have it - otherwise turn mixer on and off quickly), until the ingredients are brought together.
5. Divide the mix into 2 parts. Knead each very lightly, before rolling between two sheets of baking paper. Line the pie dishes with pastry. Prick with a fork.
6. Refrigerate pie cases for half an hour.
7. Preheat oven to 180 deg C.
8. Bake pastry cases for 20 minutes.  Increase temperature to 240 deg C for five minutes. 
9. Remove cases from oven, reduce oven temperature back to 180 deg C.
10. To make each filling - put all ingredients in a mixing bowl and stir together.
11. Pour fillings into cases, and return to oven.
12. Bake 40 minutes.
13. Quiches are good served hot or cold.

These are gluten free and low lactose. (Cheese is low in lactose.)

Gluten-Free Brownies

Gluten-free brownies (top left)

150g dairy free margarine
300g dairy free dark chocolate
1 1/2 cups brown sugar (firmly packed)
3 eggs
3/4 cup LSA*
1/2 cup plain gluten-free flour, sifted
1/2 cup lite sour cream
3 tablespoons cocoa

1. Preheat oven to 180 deg C. Line a 25cm square baking tin with baking paper.
2. Melt margarine and chocolate together over low heat. Stir in brown sugar, continue stirring for two or three minutes until there are no lumps, and sugar is thoroughly mixed through. Turn off heat and allow to cool to room temperature.
3. Stir in eggs, flour, LSA, sour cream and 2 tablespoons of the cocoa. Pour into prepared pan.
4. Bake for 45 minutes. Dust with the other tablespoon of cocoa. Cool in the pan, then cut into 25 squares.
5. Stores in an airtight container for about a week. Freezes well.

* LSA is linseed, sunflower seed and almond meal. It can be found in the health food section of the supermarket.
Recipe is gluten-free and low lactose.

Beads

Take a look at my gorgeous lupus awareness bracelet, made by Annie Taylor.  You can see more of her creations at Bracelets, Beads and Steampunk Bling.

World Lupus Day Barbecue

I haven't done a post for a couple of days.  It's not that I haven't done anything - but that I've been doing rather a lot.

I spent Friday baking (recipes to come later in the week). Saturday was the Lupus Association of Queensland's    World Lupus Day barbecue. I've only met up with this group very recently on-line via their Facebook Page, and this was the first time I met the girls in real life.

It was great. So good to be among people who just "get it".

So, here's photos from the day (including the gorgeous orange-iced cakes.)

Our lovely host Gail and her family really went out of their way to decorate, and to make everyone feel welcome.  It was just wonderful!

Lupus Awareness is fun! | WEGO Health Blog

Lupus Awareness is fun! | WEGO Health Blog:

'via Blog this'

A little while ago, I got to be part of a lupus roundtable hosted by Wego Health, along with lupus advocates Amanda Greene and Tiffany Peterson.  Because they hadn't included anyone outside the USA in one of these before, it took a while to iron out the technical difficulties - I could hear them, but they couldn't hear me. In the end a system was set up where I could comment by typing in. It was great that they took the time and effort to make it work in the end! There's a one-page summary of the discussion on the link above.

My orange flower/headband for World Lupus Day.

World Lupus Day - How to Celebrate Lupus

It's all orange here for World Lupus Day. So how am I celebrating today? 

I have my orange nail polish on.

And on Saturday I'm getting together at a barbecue with other lupies from the Lupus Association of Queensland.

That's pretty much it.....

This blog is a result of my efforts to work out what to do last year for World Lupus Day - so I guess it's an  ongoing World Lupus Day project.

But through the year, I've been trying to think of alternative ways to celebrate lupus. 

(Do we want to "celebrate" lupus? 

The links explain what each of these things has to do specifically with lupus.)

1. A handful of painkillers and a long nap.
2. Go to the beach, but stay out of the sun. 
3. Go out to a nice coffee shop, drop your fork, and spill your coffee over yourself.
4. Get a new hairstyle or a full make-over.
5. Look at the impact lupus has had on your life and have a good cry.
6. Try to work out how to fit doing anything at all to mark the day alongside all the other things you have to do without getting sick.
7. Discuss your end-of-life decisions with your family.
8. I had more, but I've forgotten what they were.

Whatever you're doing, remember, lupus is something you live with - it's not who you are!

Have a great day!

I Just Wish!

I saw this on Google + and it had on it "if you care, share." And I do care, I really, really do.

https://lh5.googleusercontent.com/-4k40qlQxL1A/T6mijEkLI_I/AAAAAAAAljg/HvY3HuzUwQA/w497-h373/2.jpg

I have to admit up front, that I haven't actually tried this to test out if it works.  I have a problem with testing the theory because I'm lactose-intolerant, and I don't know what a tulsi leaf is or where to get one.

The apple - yes I have an apple or other fresh fruit every day. Hasn't kept my doctors away yet.  Maybe I need to eat more to make them allergic to me. 

I explained about the lack of tulsi leaf. Guess I'll have to live with cancer - fortunately the only cancers I've had have been a spitz tumour when I was a baby and a basal cell carcinoma a couple of years ago. (Both were skin cancers surgically removed without major trauma.)  

A lemon a day - I don't have one but it wouldn't bother me if I did. I regularly use lemon juice as a salad dressing. Would it magically dissolve fat? No. It would help lower the glycaemic index of any carbohydrate I ate it with, because acids have the effect of lowering the GI of carbs they're eaten with. 

A cup of milk a day. Well, as I said I don't have regular milk. I do however have lactose-free milk, calcium-enriched soy milk, cheese and yoghurt.  I have the equivalent to at least a cup, probably two, of milk each day. According to my blood tests, I still need to take calcium and vitamin D supplements to protect my bones. A single cup of milk a day isn't enough.

Three litres of water a day - no diseases.  I can't try that at the moment.  I'm having this problem with fluid retention, and having to take extra fluid tablets and reduce my fluid intake to stop my feet swelling like balloons and having a horrendous headache!  When I did sport, I would have easily drunk three litres of water a day. I still got sick. I got very sick. (I've read that the point of over-hydration for a healthy adult is about 7.5 litres (2 gallons) of water per day. So for most people, three litres is probably quite safe even if it's more than necessary. Yes, it is possible to die from drinking too much water - as with consuming too much of anything.)

It would be great if it were possible to have easy answers. I wish curing lupus, or preventing other diseases, were as simple as adding a few fresh foods to our diets. Since I eat mostly fresh foods, this would be ideal for me.

P.S. Ask and you shall receive. As I write someone on G+ has answered my question about tulsi leaf.  It's a form of basil. I'm good with that - I grow my own basil and eat it frequently.  I'd love to grow another kind and would happily eat it every day. (Even if it doesn't prevent cancer, basil is delicious!)

Top 7 Lupus myths « Arthritis support board

Top 7 Lupus myths « Arthritis support board: "ARCHIVES


'via Blog this'

This link takes you to Dr Akerkar's list of misconceptions about lupus - and the truth about the disease.

The Cost of Lupus

Lupus Bites: And it costs more than physical health.

The kids aren't really kids anymore. Although they keep their beds and clothes here, they're not physically here all that much. That's not a complaint - they really are good to me. When they're here they help me out around the house, and they really do care about me. We still have some good times together.

But with them gone so much, even such a small house gets lonely.

I guess I'm feeling extra-alone at the moment. Someone special to me has told me they have begun a new relationship. I'm honestly very happy for them, and do hope it proves to be everything they are looking for. But this person also said: "I hope you find what you're looking for."

That's what got to me. I kind of stopped looking.

When even walking is painful and all I want to do is lie in bed all day, how do I find the energy to be looking for anything? How do I look for a relationship, when at the moment I feel that I am so sick that I have nothing of value to offer - but only a very great need? When I have trouble simply doing my own dishes, or doing my washing, how can I invest time and energy in dating? (Time, I have. Energy, I don't.)

So now I'm lying on the couch, reflecting on all that lupus has taken away from me:

• sport (I used to do martial arts, believe it or not, now hydrotherapy exhausts me),
• my full-time ministry (I'm now only very part-time and often don't feel I fulfil that at all well)
• energy
• the ability to plan ahead (because now I don't know ahead of time if I'll be well enough for what I plan)
• independence (there's so much I have to ask for help with, that I used to do for myself)
• financial security (that left with full-time work)
• gluten (and now often meat - because even the thought of meat makes me nauseas)
• everyday activities (I have to wait for a good day if I need to do shopping)
• confidence (I used to never forget a name or a face or a story - now I can't remember if I took my pills this morning - I'm no longer sure of what I know or remember)
• reliability/responsibility  (I used to never miss a deadline, and if I'd committed to doing something it was guaranteed to be done - now everything's conditional on whether I can get out of bed)
• physical strength (I guess that goes with sport - there's so much I used to be able to do that I took for granted - now I need gadgets to help me open jars  and changing a tyre's out of the question etc).

I can't blame lupus for taking away the relationship I had. But it is certainly taking away any energy I might have to search for a new one. 

There is a very sweet man I talk to on-line daily - but he can't come to Australia to meet me because people over 30 can't get a working holiday visa and he can't afford to come out if he doesn't work. There's no way I can afford to travel overseas. So we will never actually meet. 

Dare I hope for anything more? At the moment, no. But perhaps I will not always be this sick. I was comparatively well while I was seeing Mr Wonderful.  Maybe one day I will be that well again - and be able to find someone I can share my life with.

I'm Fine... So Don't Suggest Anything Different!

I was reading an article at Web MD yesterday about treatment for lupus nephritis (kidney disease related to lupus.) 


I was just reading it out of curiosity, because, fortunately for me, I don't have lupus nephritis.  


My kidneys are fine. I know because I saw the results of my last blood test.  I can't read all the numbers, but there was a sentence written on it "kidney disease cannot be ruled out". That means, of course, that they weren't definitely ruling it in or they would have said so. Right? Absolutely. I'm fine.

OK, my feet and ankles
may be a little swollen
lupus.cheezburger.com

But I was interested to read in the article this list of symptoms for lupus nephritis: 

It is often silent, but lupus nephritis symptoms may include:

• Weight gain
• Fatigue
• High blood pressure
• Dark urine
• Swelling around eyes, legs, ankles, or fingers

Let's see: weight gain. Well, I admit I do have a little trouble with weight. And I have stayed pretty much the same weight despite months of doing all the right things to lose weight. But, if I take a couple of fluid tablets I can drop a couple of kilograms really fast. That doesn't mean anything. Right?  I have a slow metabolism. And lots of women carry a little excess fluid - it's hormonal.

Fatigue. Yes, I'm fatigued. Everyone with lupus suffers from fatigue. I sleep almost as much as the cat does, but that only means I have standard lupus.

High blood pressure. Yes, I have that. I've had that ever since I've been taking lupus medicines. It's no big deal.

Dark urine. Define "dark"? Maybe, it depends how dark you mean by dark. But that could be anything. I do drink an awful lot of coffee, that could have some effect, couldn't it?

Swelling around eyes, legs, ankles, or fingers.  Yes, my ankles have been killing me for weeks! Some days I've had trouble walking at all. Does that mean anything? No, because ankles are joints.  I have lots of problems with joints. 

I'm fine. There's nothing wrong that a long nap and a handful of fluid tablets won't help.  And I'm going to keep believing that until I see definite proof otherwise. 

Lucy in the Sky with Lupus

The tenth of May is World Lupus Day.  Let's have a musical interlude, and hear how lupus has affected singer Julian Lennon....

Julian Lennon Talks about Lucy's Legacy

And singing Lucy in the Sky...

Gluten-Free Recipe: Vegetable Tarts

Gluten-free Vegetable Tarts

This is a nice, light lunch or snack for 2-3 people. It's very quick and easy to prepare.

Ingredients:
1 sheet frozen gluten-free puff pastry
1 large ripe tomato -finely sliced
1 large mushroom - finely sliced
1/2 onion - finely sliced
1 tablespoon sliced black olives
4-6 large whole basil leaves
25g feta cheese, finely diced. (I used herbed feta, but regular is just as good.)
coarsely ground black pepper
olive or canola oil cooking spray.

Gluten-free Vegetable Tarts

Method:

1. Defrost pastry according to packet directions.
2. Preheat oven to 220 deg C.
3. Line a baking tray with non-stick baking paper.
4. Cut pastry into four squares or six rectangles.
5. Arrange sliced vegetables, basil, cheese and olives over each slice - leaving a crust around the edge.
6. Spray lightly with oil. Sprinkle liberally with the pepper.
7. Bake for about 10 minutes until lightly golden brown.

(Note: the gluten-free puff pastry does not rise as much as regular puff pastry does.)

Petition for Approval for Benlysta Use In Australia

The Therapeutic Goods Administration has rejected the application from GlaxoSmithKline to have Benlysta approved for use in Australia.

If you want to sign a petition to have this reconsidered, here is a link: http://www.thepetitionsite.com/271/988/810/demand-treatment-for-australian-lupus-patients/  

There's two big issues here:
1. Benlysta might not help all lupus patients, but it could help some.  For those people for whom this is the best possible treatment, it ought to be available.
2. New lupus treatments cost a great deal of money to develop. If the treatments can't then be used, there's not a lot of incentive for companies to continue to develop treatments (or perhaps ultimately a cure.)

Health Writer's Month: Recap It!

It's the last day of Health Writer's Month, and here's the final topic: Recap HAWMC. You did it! 30 posts in 30 days. Which was your favorite prompt? Which was the most difficult? Which ideas will you reuse? Who was your favorite fellow blogger?

My Keep Calm poster
from day 9.

I've just had a look back over the past month.

There's been some interesting challenges - designing my Keep Calm poster, the madlip poem, the six-sentence post. I loved them.  I don't know if I'd use them again, but I found them an interesting way to approach looking at lupus. I also loved mixing Haydn and Gloria Gaynor on day 11.

I've started a Pintarest Account on Day 16, which I've added to as the month has gone on and I will probably continue to do so.

If there had to be a favourite, it would be my five dinner guests from Day 19. It was difficult to choose just five from all of the people I would love to meet face-to-face, but it was also exciting to imagine this dinner party with people who have become an important part of my life via the internet.

What was most difficult? I wrote off topic on day 8. I didn't come up with a dialogue from the week!

My favourite fellow blogger? Had to be Brynn from Lupus Interrupted. Brynn's posts are always interesting, and always give me a standard to try to match.