Butterfly

I'm blessed to be surrounded by friends and family who are all incredibly supportive and understanding. From talking with other lupies, I know just how incredibly rare and special it is to have such wonderful people around me.

Little Miss, who lives upstairs from me, made me this lovely orange and purple lupus butterfly for my Christmas tree. (Orange is the lupus awareness colour here in Australia, but in some other countries, they use purple.)

Lupus: The Cause and Cure

One of the frustrations of lupus is that no-one knows what causes it, and as yet, there's no cure.

I hope and pray there is a cure out there, as do many other lupies. Researchers in universities and other institutions are working on it, and are learning more all the time.  We've even in the last couple of years had the first drug developed specifically to treat lupus.

When the cure is found, we'll know about it.

We'll read about it in the news. Lupus organisations world-wide will be celebrating. Our doctors, particularly our specialists, will read about it in serious peer-reviewed journals. Then, when the cure is available and approved they will be more than happy to use it, provided the benefits are worth the risks.

We won't find the cure in books by non-medical people who claim to have "cured" their own lupus or some such thing.

We won't find it from people who will claim to be up-to-date on the research, and to prove it cite the abstract (not the actual article) of a research article dealing with very, very, preliminary research.

We won't find it from someone who tells us to change our diets, do more exercise, stand on our heads in the corner for half an hour a day, etc, without any evidence that their theories do anything at all.

Hope is important.  I sincerely hope that a cure for lupus is found, and I hope and hope and hope some more that it is found soon.

But I'm not grasping at straws.

Every now and then I hear from people who want me to promote their books about the cure for lupus, or their supplement or whatever other thing they're trying to sell.

I don't generally respond to them.  It saves me from the wasted effort of arguing against someone who's not at all interested in hearing what I have to say anyway. (I save energy where I can.)

I don't generally tell you about them.  I'm not big on promoting false hopes. I'm especially not big on promoting a false hope that might encourage people to give up the life-saving medications their doctors have them taking.

 We're coming up to Christmas - which is about hope and hope fulfilled.  This Christmas, please, let me encourage you to keep hoping. Somewhere out there, there is a cure.  And one day some very clever people will find that cure.  And don't worry - when a cure really is found, you won't miss hearing about it.                

Side Effects Can Be Serious

I want to share with you the story lovely lupie Jamie posted on the Sometimes, it is Lupus Facebook page:

This is just MY story and My story only.... it is just a message from one Lupie to another. I have had lupus since 2003 and tried many drugs to treat it. I was running out of options and when Benlysta was approved I cried tears of Joy! I got on board and I was ready for a new life! In Sept 2012 I had my first infusion, by my 3rd infusion I had gained a lot of weight (like 5 lbs a week and was hardly eating anything). I was active. I didn't feel much different but I had no flares  I started having cramps in my left foot and I thought I had plantar fasciitis then it started up my leg. Well by Halloween I couldn't walk the neighborhood with my family on Halloween, then I ran a small temp and had a flare and decided to go to UNC ER. They told me I had 10+ blood clots in my left leg and a Pulmonary Embolism and that I was lucky to be alive. I was 43 and had a 6 year old daughter and was in the hospital for 6 days and couldn't see my child because I couldn't walk and was in intense pain. There are some Rheumys that are very against Benlysta and some that are very pro Benlysta. sitting in the infusion room I was so happy to hear all the success stories of how it changed their lives!!!! So YES it does work for many!!!!!! Just be very careful and pay attention to the side effects.. if you feel short of breath or have a cramp in your leg or foot.. don't waste precious time, go to the ER and tell them you have lupus and to check for blood clots. I got lucky.... Just wanted to share this not to bash the drug but to share my story to make sure that all of you stay safe!

Note that Jamie wasn't saying that Benlysta isn't a great drug for many people. But like all drugs it has potential side effects.  For her these side effects were life threatening.

There is an important lesson in this for all lupies (and anyone else with any other health conditions). If we have any new symptoms, we should take them seriously. They could be a sign of our basic disease doing something new and bad, or they could be a sign of side effects that could be disastrous.

If you have lupus, you have a double risk - the disease is life-threatening, but the treatment can be, too.

If things don't seem right, they probably aren't. Ask your doctor.

(And remember, this applies to any medication, not just prescription medications, but over-the-counter medicines and alternative medicines, too.)

More information:

Medicines and side-effects - Better Health Channel http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Medicines_can_cause_unwanted_side_effects

NPS Medicine Wise - Patient information on individual medications http://www.nps.org.au/medicines

Getting Ready for Christmas

This coming Sunday is the start of Advent. That means it's time to start getting ready for Christmas.

While for me, Christmas is primarily a spiritual thing, all of the family things around it are also very special.

Because of the summer heat, I have limited energy, but there are some things I will always gather the energy for (even if other important-ish things miss out.)

My family puts up our Christmas tree on the first Sunday of Advent.  My daughter, son-in-law and grand-daughter will visit. So they, my son, and I will decorate the tree together. Our Christmas decorations are like a family story.  They all have memories attached to them, so for me, the day we decorate the tree is very special. I have to come up with a nice decoration to celebrate my new grand-daughter's birth this year.

I also spend most of December baking the family's favourite treats for Christmas. My kids grew up just knowing there'd be home-baked shortbread, fruit mince pies, cake and puddings, and fresh home-made lollies. Yes, I know Christmas could happen without these things, and it would be easier to buy manufactured Christmas treats, but I love that they love it all.

It's harder to do it all now, but it's still important to me that I can do it. As with everything, it's a matter of prioritising what I do.

In the summer heat, rationing my energy is incredibly important. Doing my baking in the coolest part of the day is one of my strategies to help protect the little energy I have. Having an afternoon nap or retreating somewhere for air conditioning during the hottest part of the day also makes a big difference.

When the (Energy) Budget's Tight

Weather always affects me.

The hot, humid, weather in Brisbane through the summer storm season saps my energy and leaves me exhausted.

Of course, in winter, the cold makes my joint pain so much worse, that it's not really any better than summer.

So with the heat and the humidity at the moment, I'm doing very little, except watching all the things I need to do build up around me.

After the effort of eating breakfast and taking morning pills, I go back to bed for a nap.  There's another nap on the agenda most afternoons.  That doesn't leave a lot of time for life.

So I set priorities.  My children and granddaughter are my top priority.

Next at the moment, is planning a trip to England next year to see my sister. My children, son-in-law, and granddaughter are all coming with me. To minimise the impact of differences in temperature, we're going in July, travelling from our winter to England's summer.

After that come necessities like feeding myself, the son who still lives with me and the pets. At that same level is making sure I take all my pills.

Then I try to save some energy for my friends.

So if you ever visit my house, and notice the dirty dishes in the sink, the washing that's been on the line for a week and not brought in, and the carpets which are overdue to be cleaned - you know why. Those things just didn't have a high enough priority level to make it into energy budget this week.

Maybe when the next storm breaks, and the weather cools down for an hour or two, one of those "extra" jobs will be done. Maybe.

Not Keeping Up

For Patients for a Moment Blog Carnival this month, Leslie at Getting Closer to Myself asks "what do you do when you can't keep up?"

My first thought in response to that is "when did I last keep up with anyone or with anything?"

"Behind" is the basic way I live my life.

Unless people walk slower for me, I don't keep up when I'm out with family or friends.  Most people slow down for me.  My son just stops every now and then for me to catch up.

At the moment, my family and I are planning a trip to England to see my sister.  One of the things we plan to do there is a visit to a zoo which has electric wheelchairs to loan to visitors who need them - we've decided we need to hire one of those. For once, I will keep up.

Of course, keeping up with people when I'm out isn't my only issue.

I get behind on most things. Today I cleaned the bathroom.  I've been weeks intending to do it, but I've just run out of energy before I got to it.  I used to get really frustrated at all the things that had to wait because I just got behind.

I guess I've just become used to it. I've stopped beating myself up over things.

I know I have to prioritise what things are most important at any given time. I break the most important tasks down into their smallest parts, and alternate between small parts of tasks and rest.  Things that are low priorities usually don't end up being done.

Yes, I'm behind on all the things that need to be done. I probably always will be. Keeping up is unrealistic.  But I've come to terms with that.  My goal is to get by, to do what's necessary for survival, and just a little bit that I want to do more. That's enough.

It's Heating Up

It's late spring, and the summer storm season's already begun.

That means incredibly hot, humid days, with storms in the late afternoon or overnight.

It also means I'm suffering from fatigue reaching the point of exhaustion without doing much at all.

My son's first-ever attempt at hairdressing.

And, on top of that, I'm suffering from rashes from the heat.  Dermatitis on my scalp has come back, after being away for some time.

Today, it reached the point where I couldn't stand it any more.

My son came to the rescue, with the hair clippers.

For his first-ever attempt at hairdressing, I think he's done a good job of clipping my hair.

I've also noticed that, although I don't have a serious butterfly rash, I'm starting to get pink across my cheeks, which is not a good sign.

The worst of the hot weather is yet to come. Summer doesn't actually start until December. So far, this year has been Australia's hottest on record, so I'm not looking forward to the last six weeks of this year, or the start of next year either.

I have a couple of strategies for hot weather. One is to get rid of as much hair as possible and wear light clothing.  My home is quite cool, except for the hottest days, and normally I can keep under fans or an evaporative cooler. (Eventually, I will save up for air conditioning.)  When it does get too hot here, I tend to go to places like shopping centres, or fast food places, where I can find a quiet place to sit with a cool drink and my kindle while the worst of the heat passes. As always, I try to avoid being outside in the sun.

Unknown Future for the National Disability Insurance Scheme

Not all that long ago, the then Prime Minister Julia Gillard, announced the start of the National Disability Insurance Scheme (also known as Disability Care Australia).

It supposedly had wholehearted support from both sides of Parliament.

So, as it began to be rolled out, lots of people who have disabilities caused by lupus, along with all the many Australians who have disabilities from other causes, were waiting to see just what this new program would provide.

Well, politics is a strange business.  What a party believed in opposition may not be exactly the same as they believe in Government.

The new Treasurer, Joe Hockey has announced an intention to scale back or abolish the agency which manages the NDIS. Mr Hockey has said the work of the NDIS could be managed by the government owned private health insurance company, Medibank Private.  He's also indicated an intention to privatise Medibank Private.

I can't read minds, so I can't tell you why the new government would do this.  I can give you some possibilities:  A. the government genuinely believes this will give the best outcome for Australians with disabilities; B. the government wants to make disability someone else's problem and so is handing it over to private enterprise; C. the government wants to save money at all costs and thinks a good way to do it is to take money away from disability services; or D. the government would like to undo anything really good the previous government did so that voters will forget about it or think it failed.

As I said, I can't tell you exactly what the government is thinking, but it is interesting to note that there is no cabinet position representing people with disabilities.


Whatever the motive, if you object to this behaviour, and would like to say so, here is how to contact Mr Hockey directly:

Hon Joe Hockey
Treasurer
PO Box 6022
House of Representatives
Parliament House
Canberra ACT 2600

Or email: J.Hockey.MP@aph.gov.au

The opposition (former government) does still have a Shadow Spokesperson for Disability. It's Jenny Macklin, who sent out an email yesterday on the issue.

She said: "I know that for many of you, the NDIS has been a long time coming. I also know that with the implementation of the NDIS you will now receive the care and support that you have always wanted.

"This has been a hard fight for many of you, but we now have a scheme that ensures Australians with disability aren’t treated like second class citizens anymore.

"We cannot let the Government take this away."





Previous post on NDIS/DisabilityCare Australia: http://www.sometimesitislupus.com/2013/05/will-disabilitycare-australia-cover.html

Shielo Leave in Protectant Review

Well, I must have passed some milestone in the blogging world.

For the first time ever, I received an email, from a company which asked if I would like to review their autumn (obviously they're overseas) skin and haircare range.

I replied, that I'd be interested in any products for extremely sensitive, rash-prone skin.  What arrived in the mail was this:

It's Shielo leave in hair protectant.

Now, before I attempt to review the product, perhaps I should explain something about my hair care routine.

After many years of struggling with dermatitis on my scalp and hair falls (and I know lots of lupies know both of those things only too well), I am very fussy about my hair.

I don't go to hairdressers, unless I've been without any scalp or hair problems for a very long time.  I don't trust the chemicals they use, and I'm not sure they sterilize their equipment between customers.

I cut my own hair, keeping it comparatively short so it's less distressing when a handful randomly falls out (it doesn't look as much as if it's long hair.)  I dye it maybe once or twice a year, and again, only if I've been without any scalp or hair problems for ages.  I always use the same brand of dye, rather than risk something unknown.

I only wash my hair once a week, and then I massage a tiny amount of oil into my scalp first, to act as a barrier between my skin and the shampoo and conditioner.  Styling my hair consists of giving it a bit of a scrunch after it's been towel dried, and it naturally falls into waves.

My hair dryer and curling wand still exist somewhere, but haven't been used in at least a decade.

Because of all of that, you might not be surprised to know that I have no idea what a hair protectant is supposed to protect hair from.

I had a long look at the bottle, and read the information on it.  I still didn't know what its purpose in life was.  I asked a friend, but she didn't know either.

My 19 year old son has beautiful waist-length hair.  I asked if I could spray the hair protectant on his hair and see what it did. He looked at the bottle suspiciously and said, "I thought you were writing this review."

The bottle says it's for styling.  So I squirted a little on my hair before I scrunched it after it was washed.  My hair fell into the same waves it always does, with no perceptible difference. So trying it didn't tell me what it does, but I did find out that it doesn't cause an allergic reaction, well not for me, and not at the moment.

It smells quite pleasant. That's got to be a plus.  Unless of course, you're allergic to fragrances.

The bottle says it contains organic extracts, and is paraben free.  I looked at the very long list of ingredients on the back.   Some of them have alternate names written after them which indicate that the compounds do have some relationship to plants, so yes, it does have organic extracts, and the ingredients list doesn't include paraben.  So that's accurate.

It says it has UV protection.  I use 50+ sunscreen on my skin, but have never considered UV protection for my hair.  Not that I'm likely to be in the sunlight long enough for it to have any effect on my hair - if I were, I'm sure I'd be suffering from a major lupus flare as a result. So, no, I didn't test out the UV protection claim.

It also says it has antioxidants.  I understand that antioxidants in food are useful in combating free radicals which can cause disease and degeneration.  I don't understand how that applies to hair, which is already dead.

All that said, it smells pleasant, I didn't have a reaction to it (and I react to a lot of things) and the bottle says it's cruelty free, which is always a good thing.  So if you need your hair protected, from whatever dangers there are to hair, I guess this is as good a product as any.

Living in Cyberspace

As you've seen from recent posts, I have been out in the real world a bit lately.

The real world's hard work.  I get fatigued very easily, and most things I do can add to my pain levels.

I try to do as much as I can on the internet, to save my "real world" energy for things I really want to do. Doing my groceries on-line means I can save some energy and avoid some pain, so I can go out with friends, or cook dinner for my family, or spend time with my baby granddaughter.

Using Quickflix for my movie rentals means I don't use energy driving to a video shop. Again, that's some energy saved for something more important.

Recently, I found out just how good the internet could be. My microwave was making ominous, crackling noises whenever it was turned on.  It was a cheap one to begin with, and quite old, so I decided it probably wasn't worth the cost to repair.  I started going to shops to look at prices for microwave ovens.  I quickly realised that it would be much easier, to do the comparisons online. I was thrilled to discover that The Good Guys lived up to their name.  Their website had customer reviews on all their products, the microwave I bought came from their local shop (so the franchisee wasn't left out by going via the central internet ordering system) and the delivery fee was only $2.

I've recently discovered online games, to play when I really don't have energy or brain space for much else.  Over in Blackwood and Bell Mysteries, I'm stuck in a Romanian cave with the bad guy getting away - because the next chapter of the game isn't online yet.  In Zombie Lane, Fettuccine has asked me for help with his new circus act - it involves clown zombies and flame throwers.   If you're playing either of those games, feel free to add me as a friend. My name is Ornithirinkus, which is how you spell "Ornithorhynchus" when you have brain fog.

To top all that off being able to browse and buy books at Amazon and have them just magically appear on my Kindle, has meant a lot more saved energy and pain.

It's not all that long ago that I wouldn't have thought of using the internet for anything but research - and I'd always check that with printed sources. Lupus has changed that dramatically.  The little bit of energy I have is too precious to waste on something I could do online. Now, the internet's one of my main tools for saving energy for the things I really want to do.  I still emerge into the real world, but I have enough energy to enjoy some of the best bits of the real world, now, not just the essential stuff.

In fact, today, I'm waiting for a new bench-top dishwasher I bought on ebay to be delivered. The dishwasher will mean my sore hip doesn't have to put up with me standing at the sink for so long, and being bench-top means it's just the right height to avoid too much bending or stretching.



Do you do everything on the internet as well?  I have two Quickflix gift cards (good for six weeks subscription to give away.)  The first two people (in Australia only) to email me their name and postal address will each get one.


This was is not a sponsored/paid post. None of the companies mentioned have been involved in producing this post in anyway. The Quickflix gift cards being given away were given to me as a customer to share with friends, not as a blogger.

Visiting the Real World

I recently emerged from the internet into the real world.

Johanna Joy, 4020g and 55cm long,
a perfect reason to visit the real world.

It was a lovely visit, and one I wouldn't have missed for the world.  You see, my gorgeous new
granddaughter Johanna Joy was born early yesterday morning.

I hadn't thought anything could match the feeling of holding my own newborn babies; but holding my newborn grand-baby was pretty close. She is, of course, absolutely perfect and beautiful. (Just like her mother and uncle.)

I'm not biased at all. This is a completely objective viewpoint. In fact, to be sure I was being objective, I asked a panel of experts: my daughter, son-in-law and son.  100% of people surveyed agreed she was the most beautiful baby in the world.

A trip to the hospital for an hour or two visit means I don't have the energy for anything else. I've slept for most of the rest of each day.

I have been planning a number of posts to share with you. But they're not happening tonight, maybe not for a little while.  Eventually I'll get into a routine that allows me time to be with Johanna, and still write. Until then, if you don't see me on-line much, I'm out visiting the real world.

Say Hello To My Little Friend

Say "hello" to my little friend.

My new, portable tens machine.
(And Mr Woof and Mr Bumpy.)

No, I don't mean the cat or the dog in the picture, but if you want to get to know Mr Bumpy Cat and Mr Woof, you can meet them on www.mrbumpycat.com.

I ordered my new portable tens machine a couple of weeks ago, and have been enjoying trying it out.

Unlike the  big one I've had for quite a while now, it can go anywhere.  Powered by a  9 volt battery, the controller clips on my belt or waist band. I'm not tied to a power outlet.

The electrodes attach to whatever joints are sorest, and the wires feed under my clothes to the controller.

Tens machines produce electrical impulses that interfere with pain signals from the nerves. Instead of pain, the otherwise sore spot just feels a massaging buzz.

How good is it? Well, while my friends upstairs have been on school holidays, I've joined them on a few outings. We've been to the beach, and even for a walk through Ikea. With the tens electrodes placed on my sore hips and lower back, I managed to do it without being in pain. (Yes, I slept for about 36 hours straight after Ikea, but I was only fatigued, not fatigued and in agony.) I also went to a birthday party. (Now you know why you haven't heard from me much over the past couple of weeks.)

As with anything, I can't promise it would work for anyone else.  But I'm gaining a lot of freedom by using it.

I Wish I'd Been Told

I didn't know what to expect when I was first diagnosed with lupus.  I was just given the name of

the disease and that was it. I probably would have been told more if I'd asked, but I didn't know enough to know what I needed to know.

Some of the things I would have liked to have been told are:

• "You didn't do anything to cause this."
• "You will get tired. It's normal with lupus. Don't try to keep pushing yourself, it only makes things worse."
• "You can take medication to reduce the pain, but don't expect to be totally pain-free."
• "This will affect all of your life. Try to just accept it, becoming upset about it won't help."
• "It will affect your family, your friendships, every one who is involved with you in any way."
• "Lots of people who know nothing about lupus will give you advice on how to handle your condition. Just try to laugh it off."
• "Your kids will cope."
• "This is how you find a lupus support group....."

That's a few.  

I asked some other lupies on social media what they wished they'd been told when they were diagnosed. Here are some of their answers:

• Danielle, USA. "I wish I'd been told anything. Everything I know I researched on my own."
• Bobbie, Australia. "My doctors have been amazing, and I wouldn't change them. My big surprise has been that people (men) would see me as damaged, broken and too complicated."
• Mary, USA. "I would like to have known how much my life was really going to change. That way I could have started planning for the future at diagnosis."
• Carolyn, USA. "I wish I'd been told when diagnosed. Nobody bothered to tell me for about eight years, and I missed all that medical care. Male doctors don't waste time with older women! I'm still hurt and angry. Thank God for Dr Amanda Luchsinger. She got me to the right people, as did Dr Dumont. Thank you! It really hurt my health not knowing all that time."
• Patty, USA. "That my kids would be OK, even great, growing up with a mom with lupus! It helped shape them into the wonderful young adults they have become."
• Tanya, Australia. "I wish I was told how much Lupus sucks ass! On a serious note, I wish I was told just how much of a life changing roller coaster it would be with all the different symptoms/medicine side effects and all that it does to your body, mind, family and self."
• Lisa, USA. "I wish I was told how hard it would be to find the right doctors to work with to help my conditions as they come and go.
• Frankie, USA. "The emotional and psychological impact it would have on my life."
• Jenn, USA. "Get a great psychiatrist and support group. More emphasis on the mental toll is needed."
• Cindy, USA. "How lonely life would be. If it wasn't for the Lord, I would go nuts."
• Twyla, USA. "I also wish  I was told how lonely this disease can be. If I'm told one more time I'm loved and will never have to face a flare alone again ... just for them to run the minute I have a flare ... my heart breaks each time ... I'm so happy for those of you whose partners are there and supportive!! That's my dream to have someone who doesn't run scared."
• Tosha, USA. "I wish I had been told anything as well. I was told I had SLE and that was about it. The rest I have learned along the way."
• Rosie, USA. "I wish someone had told me that my whole life would change with this diagnosis."
• Christie, USA. "I was under the impression that if I took my meds and rested more I would be fine. I wish I had been told upfront to prioritize everything I want to do and how to plan ahead for busy days so that I'm rested up and can crash as soon as it's over."
• Nidia, USA. "How difficult it would be to have the same life as before."
• Kathy, USA. " I wish I had been told more than the one page handout that I was given that said Don't Panic it's Lupus at which time the doctor said just google the Mayo Medical Site and read, don't look at the pictures!"
• Nikki, USA. "I wish I was told how much brain fog & being tired ALL the time would be such a frequent thing that's out of my hands!! Glad, my kids & hubby usually know what I am trying to say when I jumble everything up, they just chuckle and say bad day??? Makes me smile when I really want to cry!"
• Sheri, USA. "I wish I had been told that I wouldn't be dead in 10 years. I've outlived that estimate by 14 years already."
• Tasha, USA. "I wish people would have told me how hard it is to find good and understanding doctors."
• Kandy, USA. "How little everyone knows about it or how little they care to learn about it."
• Jen, USA. "Your life will go downhill and will be debilitating. The pain will be so bad that you won't be able to get out of bed. Oh you'll also lose all your friends."
• Holli, USA. "Get ready for everything to change!"
• Beth, USA. "The symptoms I was experiencing were normal for a person with Lupus. I needed to know what Lupus fog and fatigue was."
• Amy, USA. "I wish that I would have known the personal loss of freedom. I am homebound so much of the time and it is hard. Especially when I was a very active person prior to my disease."
• Julie, Australia. "I have got to tell you the one thing I wasn't expecting was CNS damage and neurosurgery. My optimism occasionally takes a battering but thankfully the ability to laugh at myself helps pull me through  I have learnt to be more grateful for good days, and take nothing for granted. I don't think anyone or anything anyone can tell you can truly prepare you."
• Katie, England. "Wish I had been told to make friends with people with Lupus! That's been the biggest help to me."
• Corie, USA. "I wish that I was told how my whole life would be turned upside down and inside out."
• Twyla, Canada. "How difficult it is living with an invisible chronic illness."
• Joke, The Netherlands. "Wish he would have told me how much my life would change. He did tell me it is a terrible disease and he can only do so much for me and that's frustrating to him too."
• Pam, USA. "I was not told I read it on my Chart."
• Peg, USA. "Wish they had told me not to be out in the sun!"
• Veta, Canada. "I wish I had been told the seriousness of Lupus and not just given the basic 'You have an autoimmune disease.' How it leads to and is connected to so many other diseases. also how Lupus would affect the rest of my life. Lastly,what changes I need to make to have the best quality of life possible."
• Katie, USA. "The emotional burden it puts on those closest to you, also the emotional toll it take on you mentally as well as physically."
• Nada, USA. " I wish that they would have told me how much it would change my life. How at times you could feel ostracized, lonely, how no matter how well you took care of yourself, you would still hurt, still feel like a train wreck. How this affects the whole family and that it can tear families apart. How you can't depend on anything from hour to hour because your body changes literally with the weather. Sometimes you feel like no one understands. You try to explain but others just don't get it. One by one friends will drift away because just like cancer or a terminal illness, they just don't know what to say. They get tired of you having to reschedule a lunch date or a movie because you wake up that day feeling so sick you just need to pull the covers back over your head. I am so thankful for my doctors, and truly thankful for my two sisters, Ann & Millie, my niece Jennifer, and my son and his family. They are my rocks. they keep my spirits up, they motivate me and they are there with me every step of the way."
• Cindi, Canada. "I was so grateful that I didn't have AIDS it didn't matter at the time!"
• Mary, USA. "That symptoms will flare it's ok to feel bad and stay in bed and when you do expect criticism and sideway glances from those who think you're faking it."
• Debra, USA. "I also had to research everything. It would have been nice to know anything more than where to pick up the meds!"
• Julie, USA. "How each day is so different. It is the inconsistent symptoms each day and having a difficult time making future plans. Future being the next day, week or end of the month. Also how to deal with the extreme brain fog, fatigue, and full body pain."
• Diane, England. "That all my symptoms were typical and what to expect."
• Wendy, USA. "I'm sending you to a rheumatologist and she will test you with major expenses and tell you its inflammation from arthritis which you already know plus lupus."
• Sallie, Australia. "Wish I'd been given the right diagnosis seven years earlier. Other than that I was told only that I had SLE and that I'd need plaquenil for the rest of my life and given another list of meds I'd need.  I wish I'd been told how much it would affect every other aspect of my life: physical , mental, financial, social and emotional. I've learnt along the way."
• Eva Marie, Philippines. "It took my doctors six months to discover. cbc unstable. Fever very low grade and  I fall on the 11 categories for lupus symptoms."

Money, Money, Money

My process for permanent retirement has gone through, and suddenly for the first time in my life I was faced with the issue of what to do with a lump sum of money.

Obviously, the first thing was to clear all my debts.  Not paying interest on debts will make a huge difference to my regular budget. 

Next was to lock away the majority of it in a long-term investment that will pay me some interest. 

And then to have an "emergency fund" for those crises that in the past a credit card would have covered, things like medical expenses that I hadn't counted on and emergency trips to the vet with my animals. (No more credit cards for me.)

My son came with me for the run around to the banks, sorting things out. He made notes for me, and understands my whole financial plan probably better than I do.  He says he's not looking out for my interests, he's just protecting his inheritance. My daughter's also been told all of the details. So if my cognitive function gets worse, there's people around me who know what I'm doing (even if I don't).

So that's all good news for me.  

Along the way, I learned a few things that might be useful for other people who've had to give up work because of illness. (Some of which may also be helpful for people who are still working.)

When I went from working to being on a Disability Support Pension, I didn't think to notify the bank of the change.  I should have.  If you're on a DSP and still using a regular bank account, it's a good idea to go to the bank to change over to a specific pension account.  Centrelink has a "deeming" process.  They deem your savings to earn a set interest rate, and count that as your income, whether or not you actually earn that interest. In response to this the banks have set up pension accounts, which earn the "deeming" rate.  This is higher than the regular savings account rate.  You will need to show your pension card to get your new bank account. 

It's important to ensure your bank has your Tax File Number. I hadn't even thought of this.  I had a bank account long before the time when banks started collecting tax file numbers.  (OK, I'm clearly getting old.) If the bank doesn't have your tax file number, it has to withhold tax from your interest at the highest possible rate.  

Have a plan for what happens if you get too sick to manage your money. You need to decide who you trust to manage your affairs if you can't manage for yourself.  This applies to health and personal decisions as well as financial decisions. Are you going to make a formal Power of Attorney? Are you just going to give a close family member or friend the access code and password for your on-line banking (and trust that next-of-kin will manage personal/medical choices appropriately)?

Further information:

Centrelink Deeming Rates http://www.humanservices.gov.au/customer/enablers/deeming

Australian Taxation Office information on taxation and bank accounts http://www.ato.gov.au/Individuals/Investing/Bank-accounts-and-income-bonds/

Queensland Department of Justice information on Enduring Power of Attorney http://www.justice.qld.gov.au/justice-services/guardianship/power-of-attorney/enduring-power-of-attorney

His Name Was John....

It was the end of May 2012.

There was a story on 612ABC radio about a man whose friend put a notice in a shopping centre notice board asking for a girlfriend for him.  He was a nice guy, according to the female friend, who was concerned that he just wasn't be able to find love.

I tweeted to the radio station: "You didn't embarrass that man enough, you forgot to broadcast his phone number."

They tweeted back, they'd direct message me the number if I was interested.

I thought about it for a while, decided I had nothing to lose, and got the number.

We texted a couple of times, then met.  He talked at me constantly and gave me the history of a number of city buildings I really wasn't interested in.

After that, my kids persuaded me he was probably just nervous about the first meeting, and I should give him another chance.

So I met him a second time. Again, he talked at me constantly, and there was no sign of the monologue growing into a conversation.

That's when I told him I really didn't think it would work out.  He texted a few more times, and after I got tired of answering "no", I just stopped answering. Eventually, he stopped texting. I deleted his number from my phone.

End of story. Or it should have been.

Apparently, he didn't delete my phone number.

His current girlfriend found my number in his phone.  She's been calling and texting me constantly. She's used at least three different phone numbers so far.

Initially she claimed she'd found him cheating on her with several women. (I find it hard to believe that several women at once would want a relationship with this particularly boring man, but who can say what others' tastes are like?)

So, initially, I had politely explained that I'd only met him a couple of times and that was a long time ago. For any rational person, that would have been the end of that.

Now, I'm just getting constant barrages, of "Have you seen John?" "I found your number in John's phone", etc.

I thought of changing my phone number, but the effort of letting everyone who has a legitimate reason to contact me of the new number is just far too much brain work for someone with my current brain fog issue.

I tried explaining that I'm sick, and at this point in time there is no way I could handle dating anyone, and that all I want is to be left alone to be with my kids and my soon-to-be-born grandchild.

That didn't stop the texts and phone calls.

Since then, I've just been ignoring the text messages, and hanging up and blocking numbers when I realise calls are from her.

Hopefully, she'll eventually give up contacting me. After all, John gave up after a while.


Why did I post this?

Apart from needing to rant, I think, it's a reminder that for everyone with lupus who is going through all the rotten things that this disease throws at us, there's still everyday life going on. Everyday life can throw its share of rotten things at us too. It just all adds up.


PS - I've just ordered a portable tens machine.  It is battery operated and can clip onto a belt. That means I can be wired up to a tens machine while I'm out of the house, not just when I can be plugged into the machine here. That's extra pain relief for trips to the supermarket, or movies, or well, just about anything!  (I'll show you a picture when it arrives, and tell you how well it works.)

Multi-purpose Tool

Retrieving cat toys from under the couch.

I struggled to come to terms with the idea that a walking stick would be helpful.  But now I have one and have been using it for a while, I've found it's got endless purposes.

So far I've used it for:

• extra balance when I have the clumsies
• leaning on when my hips hurt and don't want to hold me up
• pointing at things I want my son to get down from shelves in the supermarket
• threatening my son: "you may be bigger than me, but I'm carrying a big stick"
• my son used it to get a neighbour's toy helicopter from the roof
• as an explanation: when I have the stick no-one looks at me strangely when I ask if there's a lift to use instead of stairs
• to get down a bucket from the top shelf at a shop
• to push the cat out from under my feet when I have my hands full
• my son tells me it will be of great use if I'm ever caught in a street fight
• for a slightly better chance at a seat on public transport
• to intimidate small children (as in the mother of the kids I babysit said: "You behave for Mrs Iris or she's allowed to use her stick." I probably should explain that the kids did know it was a joke.)

Two Kinds of Gluten Free Cupcakes

Here's two gluten-free cupcake recipes I made for my daughter's birthday yesterday.  

Triple Chocolate Cupcakes and
Mandarin and Macadamia Cupcakes.

One is based on the Chocolate on Chocolate Cake recipe I shared earlier in the year.

The other is a variation on the orange and almond flourless cakes which are so often the gluten-free cake option at coffee shops.

Triple Chocolate Cupcakes

For cake:
125g dairy-free margarine
90g caster sugar
2 eggs
3/4 cup almond meal
1 teaspoon gluten-free baking powder
1/2 cup gluten-free self-raising flour
2 tablespoons cocoa
100g dark cooking chocolate (check it is dairy-free)

For icing

1 cup gluten free icing mix

2 tablespoons pure cocoa

1 tablespoon dairy free margarine

1 to 2 tablespoons lactose-free milk

For decoration

25g dark chocolate (dairy-free)

1. Preheat oven to 180 deg C. 
2. Cream margarine and sugar together and add eggs, one at a time, beating in between.
3. Fold in almond meal, baking powder, sifted flour and cocoa.
4. Melt 100g dark cooking chocolate, and mix into the cake batter. (To melt chocolate, place in a bowl, sit bowl in a larger bowl of hot water and allow chocolate to melt - do not allow any water to get into the chocolate.)
5. Place spoonfuls of mix in paper patty cases. (Makes 24 patty cake size cakes or 18 muffin size cakes.)
6. Bake for 20 minutes
7. Place cakes on a wire rack to cool.
8. Beat together icing ingredients, until light and fluffy.
9. Pipe or spread icing over cakes.
10. Decorate by grating chocolate over top of cakes.

Mandarin and Macadamia Cupcakes

For cakes

4 mandarins

250g raw macadamias

250g dairy-free margarine

1 cup caster sugar

3 eggs

1 cup polenta

1 teaspoon baking powder

For icing

1 cup gluten free icing mixture

1 tablespoon dairy-free margarine

1 to two tablespoons mandarin juice

For decoration

Skin of 2 mandarins

2 tablespoons caster sugar

1. Shred the mandarin skins (for decorations).
2. Put whole mandarins for cake, and mandarin skins in a saucepan, cover with water, and bring to the boil.  Drain and repeat twice more.
3. Set aside the whole mandarins to cool.  Toss the mandarin skin in caster sugar and set aside.
4. Preheat oven to 180 deg C.
5. Process macadamias in a food processor. Stop processing while you still have some slightly larger pieces, don't let it just become nut meal.
6. Cut whole mandarins and carefully remove the seeds. Then process the mandarins in a food processor until pulpy.
7. Beat margarine and sugar until light and creamy. Add in eggs, one at a time, and beat between additions.  
8. Gently fold in polenta, baking powder and nuts.  Then mix in mandarins. The mix will be "sloppy" - which is OK, polenta soaks up a lot of liquid while it's cooking.
9. Fill paper patty cases with mixture. This will do 24 regular paper patty cases, or 18 muffin cases. (You will need to have the paper cases in patty tins or muffin tins, the mix is far to wet to just have the paper cases on a flat oven tray)  It's OK to fill the cases right to the top, as the cakes do not rise much at all.
10. Bake 35 minutes.  You will  notice that they just begin to brown.
11. Allow to cool. (Cool ten minutes in the tins before putting on to wire racks to cool completely.)
12. When you remove the cakes from the oven, leave the oven on.  Spread the sugared mandarin peel over a baking-paper-lined oven tray.
13. Place peel in oven for ten minutes, then turn off the oven and leave to cool with the mandarin peel inside. (The idea is to try the peel out thoroughly). 
14. Beat icing ingredients together until light and fluffy. 
15. Spread or pipe icing over cakes.
16. Decorate with dried mandarin peel.

Both of these cupcakes can be stored in the freezer.

Gluten-free Chocolate Brownies

Gluten free, low lactose and freezeable, this is one of my family's favourite desserts.  It's rich, dense, and if warmed before serving very gooey. I usually make a double batch and freeze them.

Ingredients:

150g dairy free margarine
375g dark cooking chocolate (broken or chopped into small pieces)
1 1/2 cups brown sugar
3 eggs
1/2 cup light sour cream
3/4 cup almond meal
1/2 cup gluten-free plain flour
1/4 cup cocoa
1 teaspoon extra cocoa

Method:

1. Preheat oven to 180 deg C.
2. Line a lamington tin with baking paper.
3. Melt margarine and chocolate over low heat, stirring.
4. Add in brown sugar and cook, stirring for two minutes.  Allow to cool.
5. Beat together eggs and sour cream.  Mix into the chocolate mixture.
6. Add in almond meal, and sifted plain flour and cocoa.
7. Mix well, pour into lamington tin and bake for 50 minutes. (Note: you cannot test this like a cake - while it's hot it's gooey. When it's cooked, a skewer inserted in the middle will come out covered in chocolate goo.  Just trust the timing.)
8. Sprinkle with the extra cocoa (I put the cocoa in a strainer and shake over the brownie to spread it evenly.)
9. Allow to cool thoroughly while in the lamington tin.  Do not try to cut this while hot - it will just stick to the knife.
10. Cut into 20 squares.

No Comparison

Sometimes I get mad at myself.  Other people with "mild" lupus are still able to keep working, why couldn't I?

I'm frustrated of course.  I've just been advised my application for permanent retirement has been approved.  A very big door has just closed.

Really, I'm sure retiring at 47 must be someone's ambition. I'm living the dream, right? Well maybe not in quite these circumstances.

As it is, I was comparing myself to other people. I was thinking that I'm clearly not as tough as other lupies.

Then my physiotherapist, valiantly trying to improve my tendonitis in my left hip said: "It's good that you have such a high threshold for pain."

Maybe I'm not such a wimp after all.

Maybe I shouldn't try to compare myself to other people who have lupus.

After all, the one thing that seems consistent about lupus is its utter inconsistency.  No two people have exactly the same symptoms. We all just do the best we can with the limitations we have.

More from Aviva

Remember Aviva, the little lupie with big plans to provide something wonderful for other visually impaired children?

Her first "Mind Theatre" story, has been produced and is actually ready to be distributed.

Here's the latest in her story.

Happy 13th birthday Aviva.

New Gadget

A couple of years ago, my daughter expressed some concern that I might become too gadget-dependent.

I asked if she'd prefer that I find ways to do things for myself, or needed her to stay home and look after me for ever. She agreed I should probably keep collecting gadgets.

My collection of gadgets to do things like open jars and ring-pull cans is quite impressive.

This week, I saw another thing in the shops that I just couldn't resist.  It's a liquid dispenser for the shower, to keep shampoo, conditioner, etc, at a convenient height and easily accessible with a push of a button.

Do I desperately need this at the moment?  Probably not. I could reach the shampoo on the low shelf it was on. However, on bad days, every little bit of energy I can save is useful.  Saving a little energy on basic tasks gives me a little more energy for something else.

Fogsagna

Lupus brain fog (cognitive dysfunction) has been misbehaving for me again lately.

The other day I went out for ingredients to cook dinner.  I was making lasagne, with chocolate brownies for dessert.

After making the sauces for lasagne, I discovered I'd bought a pack of spaghetti instead of lasagne sheets.  It was annoying, but not a disaster, I just layered spaghetti between sauces. It wasn't exactly the same, but it worked.

Then, I found, I only bought one block of chocolate, when I needed two for the brownies.  My son went to the shop to get another one for me. (My family will do anything for chocolate brownies.)

That was not really a disaster.  In fact, there were no really bad consequences. It was annoying and inconvenient, and I was frustrated with myself, but that's all.

Today's incident had the potential to be far worse.  I drove through a red light.

There was a green light to go straight ahead, and I went - around the corner, despite a red turning arrow.  That was the point when my son said we had to stop for a coffee, and after that we were going home for me to have a nap.

Is there a solution to brain fog?  I don't have one yet.  A nap does seem to help a little, but it doesn't fully fix it.

I'm on a waiting list to see a neurologist. Until then, I write everything down, because I can't count on my memory. But cognitive function is more than memory. It's also the endless thinking processes that have to be done all day every day.

Related post:
My addictive Chocolate Brownie recipe.

Inflammation

Inflammation - it's a word that lupus patients come to know only too well.

Inflammation is meant to be the body's first line of defence against invaders.  Instead, for lupies, it becomes the body's first line of defence against itself.

So, I wasn't at all surprised when I went to a physiotherapist about my bad hip to be told I had gluteus medius tendonitis.  The physio explained that this starts with inflammation in the tendon, which then leads to the threads of the tendon not acting correctly and becoming tangled, usually tangling blood vessels and bits of nerve as well. No wonder it hurts.

Yes, something can be done about it, but not easily or quickly.  So I've been seeing the physio once a week and doing exercises at home.  It has helped. I can walk further before I'm in so much pain I need the walking stick.

It won't be perfect, because there is a bit of problem with the joint itself as well. (Of course, the joint problem is caused by inflammation as well.) But it is getting a bit better, and hopefully will continue to get better.

Inflammation has other names, depending on where it appears. You might recognise tonsilitis, rhinitis, hay fever, appendicitis, dermatitis, anything else that ends in -itis.

Personally, I have a long history of tonsilitis, rhinitis, hayfever and dermatitis. I have a short history of appendicitis (I parted company with my appendix on very unfriendly terms very quickly.)

Irritable bowel, another issue many lupies deal with, has recently been found to have a link to inflammation.


References:

Wikipaedia: Inflammation http://en.wikipedia.org/wiki/Inflammation

Get Body Smart: Gluteus Medius Muscle   http://www.getbodysmart.com/ap/muscularsystem/thighmuscles/posteriormuscles/gluteusmedius/tutorial.html

Wikipaedia: Gluteus Medius Muscle http://en.wikipedia.org/wiki/Gluteus_medius_muscle

Better Health: Tendonitis http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Tendonitis

About.com Irritable Bowel Syndrome http://ibs.about.com/od/symptomsofib1/a/inflammation.htm

Something Bad Begins

Have you ever heard the phrase "cruel to be kind" used to justify saying something horribly judgmental and usually very offensive.

People use it when they tell people with lupus to get up and do something and stop moping around.... or when they tell people with depression to just get over it.

They say they only want to help.

Have you wondered where the whole "cruel to be kind" thing came from? Which famous psychologist came up with this idea?

Actually, it was Shakespeare.  It was Hamlet talking about having just murdered Polonius. (The being cruel to be kind in the end leads to the deaths of all the key characters.)

Hamlet:
I do repent; but heaven hath pleas'd it so
To punish me with this, and this with me,
That I must be their scourge and minister.
I will bestow him, and will answer well
The death I gave him. So again good night.
I must be cruel only to be kind.
Thus bad begins and worse remains behind.

Usually, when someone tries to be "cruel to be kind", it really is something bad going on.

With lupus patients being challenged to push themselves further, it can be dangerous.  Most of us know our limits, we learn them through hard experience. Pushing past the limits only makes things worse. Physical illnesses, whether depression, cancer, AIDS, or whatever, do put limits on people. You can't make them better by just acting as if they don't exist.

With people with depression, telling them to "just get over it" or to "cheer up" can actually make things worse.  Depression, like other mental illnesses, needs to be treated seriously. Medication and cognitive therapy help, but just being unsympathetic to get the person to "snap out of it" don't help at all.

Being "cruel to be kind" really is just being cruel. Something bad begins and something worse remains behind.



Related posts:
Fatigue and Depression
Lassie, Get Help
The Bottom of the Well

Positive Attitude
The Energy Budget
Slow Recovery

Positive Attitude?

There was an interesting conversation on the Sometimes, it is Lupus Facebook page today.  

It began with my good morning post: 

Good morning lovely lupies. 

It's Ekka holiday here in Brisbane. (That's our agricultural show, billed as "the country comes to the city".... showbags, sideshows, fireworks, that kind of thing.)

I didn't even consider going. The thought of hours on my feet, being jostled by crowds, and the fact that all the viruses that are circulating all around the state gather together in one place, just made me decide it really wasn't worth it. 

What about you lovely lupies? Are there things you don't even consider now, that you might have found fun before?

This began a conversation with people talking about what they had given up, and what they had substituted, such as a night out at the movies instead of a night out dancing - how we have found creative ways to be happy and do fun things despite our limitations.

Then this comment came through:

Sorry but why let lupus continue to dictate your life? Why stay at home whingeing about it? Get positive with your life. Learn to rule lupus and not let it rule you. It's depressing enough having it. The world's not going to stop for you. Stop feeling sorry for yourselves. Mind over matter people! Stay positive.

I haven't identified the person because I don't want to embarrass her further.  There were enough indignant and hurt responses to the original comment.

I quote it here because it's a good talking point.

No-one wants to miss out on life. None of us want to sit around doing nothing all day.  Regular readers will know my struggle with the whole issue of being "retired" so young.

But there are two kinds of positive attitude: realistic and unrealistic.

A realistic positive attitude will say, I know my limits, and will make the absolute most out of life within my limits.

An unrealistic positive attitude will say, I am going to act as if my limits don't exist and just push myself until I collapse.

Most of us have tried the unrealistic attitude, which is perhaps more accurately called denial, at times, and have had to deal with the consequences.  Denial is one of those things people tend to go through at some stage in grief, in learning to come to terms with something we have lost. 

Lupies learn the hard way that denial can only last so long before reality sets in.

So am I sitting around whingeing (Australian slang - moaning and complaining)?  I don't believe so.  I think I have a fairly positive attitude on life.  I do take my knocks and do get upset by them at times, but most of the time I think I find creative ways to make the most out of the life I have.  Most of the lupies I know are doing the same thing.

It Stopped Being Funny

Today's shopping, my new floral walking stick,
and my backpack-style handbag.

A month or so ago, my son and I were at the shopping centre, and I was complaining about how much walking hurt my hips.  My son offered to go and get me a walking stick.  I said, "You do, and I'll hit you with it." We both had a good laugh.

Well, maybe it was a bit funny.  But you know what's not funny?  When I start walking my left hip hurts, then I start to limp, then because my right hip is doing so much extra work, it starts to hurt.  Then the level of pain in both hips just increases the longer I have to be upright.

I guess the reason I didn't want to try a walking stick was that they look so overwhelmingly like "old" and "disabled", maybe even like "helpless". I don't want to look like those things.

People tend not to change until the new thing is more attractive than what we already have.  Being able to walk further without as much pain has been becoming more and more attractive.

Today, I did it. I bought my first-ever walking stick.  It's a light-weight aluminium one, which has a floral pattern on it. So at least it's pretty, and doesn't look huge. And.... well, we spent a long time at the shops today, and I didn't feel much hip pain at all. So I guess it's a success.

Since I was spending on things to make life more pain-free, I also replaced my handbag, with a backpack-style handbag.  It means I'm distributing the weight of the things I carry across both shoulders, so one doesn't get so sore.

It's going to take a bit of adjusting, because using a walking-stick at the age of 47 doesn't fit the "me" I see myself as... but the flowers on it make it more fun and pretty, and I do enjoy having less pain.

The Little Things

Sometimes the little things really are big things.

Yesterday, I went to the greengrocer and the butcher.  Normally, I'd take my son with me so he can carry the bags, but he wasn't available.

Both the greengrocer and the butcher happily carried my shopping to the car for me. They offered, without me asking, which means there wasn't the embarrassment of having to say I would have trouble doing it for myself.

Because lupus isn't visible, lupies often don't look like we need any particular help. I usually feel bad about asking for special treatment.

Offering to do something like carrying bags is old-fashioned, I know. But it's also a godsend for someone who has any kind of arthritic condition.

Both of these businesses are also very competitive in their pricing (also good for those of us on a pension.)

So, for the benefit of anyone else in the area (Brisbane northside) who might need somewhere to buy fresh food that is relatively inexpensive, and where they'll happily help you with your bags - here are the details of both businesses.

• Charlie's Fruit Market, South Pine Road, Everton Park.  http://www.charliesfruitmarket.com.au/
• Keperra Meats, Gilston Street, Keperra.  http://keperrameats.com.au/

(This is not a paid/sponsored post.)

Beware of Inanimate Objects

I just want to put it on the record that I'm not clumsy.

It's not me.

It's all the inanimate objects around me.  They have it in for me.  You think I'm paranoid?  No, that's just how it is with lupus.  Ask any lupie, they'll tell you that inanimate objects, and sometimes even gravity, just keep attacking them.

Inanimate objects even go on suicide missions to attack me - plates leap out of the cupboard when I open it, often smashing themselves on the floor, just to get the chance to hit me on the way down there.

Walls leap out in front of me when I'm walking.  I can be going through a nice open doorway when suddenly splat! I've gone face-first into a wall.

Ovens have been known to eject hot trays of food at me.

Cups of hot liquid will just leap out of my hands.  This happens more on the days when my thumbs are really stiff and sore, and on the days my brain fog is bad, but it's not me, it's the cups of hot liquids.

In fact one day, at a fast food place, an entire tray of food and drinks lept out of my hands and ended up over my son.  He doesn't let me carry the tray any more - not because I can't carry trays, but because trays can't be trusted. (We did discover that his new phone, advertised as waterproof, was definitely cola-proof.)

Floors stay flat for most people. For lupies, they've been known to bend and bunch up so there's always something to trip on. (In my house, that's made worse by two small animate objects with hair and four legs which also get under my feet, so I'm trying to negotiate my way between a floor that won't stay flat, and small bodies that run under my feet.)

So if you see a lupie covered with bruises, scrapes, and scald marks, don't assume we've been getting into fights.  We're innocent victims.  It's the inanimate objects.  If they ever get organised, we're in real trouble.

I'm Not Ready

I guess I'd started to realise it was inevitable.

Even so, the phone call came as a shock.

For years now I've been on "temporary retirement".  For some of that I've tried working part-time, but got sick when I did.

So I should have expected that call. The call that left me so shaken that even my teenaged son could see I needed a hug.

The call was from the Beneficiary Fund (the church's superannuation fund for its ministers), saying it was time to do the assessments to go from "temporary" to "permanent" retirement.

In a sense I'd known for ages it had to be coming.

In another sense, I wasn't ready for the actual call.

This means that I'm never likely to be suitable for work again. I'm officially no longer of use. I'm 47, and I know many people dream of retiring early, but they dream of doing it on their own terms, not because some stupid disease has interrupted their plans, their lives.

It makes me look at myself in another light.  I've always defined myself by what I do.  So what if what I do is.... nothing?

It could have been far worse. It could have happened before the blog, before the Sometimes, it is Lupus community was established on social media. It could have happened when I didn't feel I was doing anything of use for anybody.  At least now I have something to do that has some value. I also have my first grand-child on the way, which means a whole new adventure for my whole family.

Practically, this is a good thing.  Once I've been through my visits to the various doctors (one down, two to go), and the Beneficiary Fund's board has approved it, I will be given a one-off payment that will clear my debts and give me a little money to invest. Then my pension will continue just as it has done through my "temporary retirement".  Clearing my debts will make a huge difference to my budget.  (I ran up debts when I had a full-time job and sufficient income to have paid them out long before now, had things not changed.)

Emotionally, spiritually, I don't know.

Thinking back to my ordination, how important that was to me, how much it meant in terms of feeling that I was starting out on an adventure in fulfilling God's call on my life - I don't know if I'm ready to hear someone read out the story of my ministry as if it is all over and there is nothing left. (It's called a "minute of appreciation".) It won't be like the stories of people who have lived long and legendary ministries and are retiring to a well-earned rest (probably to keep doing supply work in retirement anyway).  It will be a story that had a beginning, and was just starting to move to its middle and it was just suddenly stopped. Surely the story does not end here.