Buggernackles and Plaquenil

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

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

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

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

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

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

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

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

Here are the scenarios I envisioned:

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

So that's what I was imagining on the train this afternoon.

What actually happened?

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

And?

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

So now, where am I?

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

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

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

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

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

Health Blogging Month Day 30: Avoiding the topic

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


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


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

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

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

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

Here are three things I love about you:

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

Give yourself a pat on the back. You are an incredible blessing to me, as well as to each other, and I thank God for you every day.

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Health Blogging Month Day 29: Lupus Greeting Card

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





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

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

I'm a little shocked right now

but I'm still glad to know you care.

I thought I could trust my body,

but it has let me down.

I had a whole life planned,

and now it has all changed.

It isn't what I wanted,

but it's what I need to learn to live.

Thank you for being there for me now - 

and please be with me as I learn to live with lupus.

I don't know what's ahead of me

but I know I'll need good friends like you. 

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Health Blogging Month Day 28: What was that again?

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


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

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

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

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


This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Health Blogging Month Day 27: Comment on a quote

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

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

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


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

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

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


This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

It's been a shock

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

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

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

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

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

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

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

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

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

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

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

Health Blogging Month Day 26: Memories

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


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

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

Then he started asking questions:

• Had I ever had a rash when I went out in the sun? (Ever since I was a kid.)
• Had I ever been diagnosed with reflux? (Yes) Had I had a gastroscopy and what did they say? (Just some free-floating reflux.)
• Had I ever had irritable bowel? (Yes) Colonoscopy? (Yes - they just said it was irritable bowel). That means they don't know what caused it.
• Had I had headaches? (Yes) Unexplained menstrual problems (Bad enough to have a hysterectomy - with no cause found.)
• Fatigue, random aches and pains? (Yes, and yes.)
• Depression? (Yes.)

For the first time in my life someone told me all these random things were actually part of the same thing. I wasn't just so incredibly unlucky to have all these separate issues - I had one condition that caused all of these other strange, seemingly unrelated things.

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

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

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Health Blogging Month Day 25: Never have I ever

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

Never have I ever.....

Tough question.

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

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

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

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

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Health Blogging Month Day 24: My Mascot

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




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

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

I can see him in a couple of different ways.

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

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

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

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

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

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


This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Health Blogging Month Day 23: Sticking with it

Health Activist Choice. Write about whatever you want!

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

There are times I miss that woman.

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

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

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

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

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

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

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

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

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

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


This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Health Blogging Month Day 22: Be Present

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

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

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

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

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

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

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

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

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

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

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Health Blogging Month Day 21: Reflecting on

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

http://farm7.static.flickr.com/6230/6357527049_52e66b33ee_t.jpg

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

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

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

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

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

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

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Health Blogging Month Day 20: What makes me laugh.

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

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

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

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

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

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

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

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


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

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

What is Lupus?

Chronic Pain

The Energy Budget

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

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

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

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

It Takes a Special Person

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

What BD is talking about here is so very important.  

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

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

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

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

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

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

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Health Blogging Month Day 17: Giving up

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

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

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

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

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

What do I have left to give up?

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

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

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

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

I think I can.....

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

I know I can...

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

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Health Blogging Month Day 15: A Song to Lupus!

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

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

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

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

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Health Blogging Month Day 14: Elevator Blog.

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


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

Well, here we go 30 seconds:


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

Let's try for 60 seconds:

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

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

Let's try two minutes:


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

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

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






This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Health Blogging Month Day 13: Random Book

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

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

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

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

Absolutely right it is a necessity.

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

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

Does it all "work"? To some extent.

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

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





This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Health Blogging Month Day 12: Teach a Class

Teach a class. What’s something that you’re uniquely great at and could teach a class on? Write the tutorial in a blog post. Bonus points for images, links to resources, and video.

What made me think it was a good idea to sign up for this?

What have I learned, that I could teach a class on?

One of my favourite topics is food. I've learned lots about food over the past few years. I've learned about nutrition and diet and weight loss (great theory, even had it practised a few times, but much harder with steroids and other medication). I've learned a bit about the importance of a low glycaemic index diet, not just for weight control but to avoid diabetes. I've learned about the importance of a low saturated fat diet, not just for weight, but to avoid heart and vascular disease. And I've learned to cook without lactose - and more recently I've learned to cook without gluten. (I've also been vegetarian for a while, to see if that helped with my abdominal problems - before I gave up gluten.)

So my friends, here's Iris' master-class on low-saturated fat, low-gi, low-lactose, gluten-free food.

Let's start with let's visit the pantry. What's in yours?

Some of the basics are: 

• Oilive oil (extra virgin is the real thing - "pure", "light", or any other description isn't as healthy and doesn't taste as good.
• Lots of dried herbs and spices. Food needs flavour - when you cut down on the amount of fat you use, you're reducing the amount of one key carrier of flavour, so you need more.
• Gluten free pasta (much of this isn't low GI - so use sparingly with other things that will help bring down the GI such as legumes in the sauce.)
• Rice noodles.
• Basmatti Rice (or Doongara Rice) Other rice is high GI.
• Brown Rice. This has a higer GI than Basmatti, but has extra flavour and nutrition, so a little with an otherwise low-GI meal is good.
• Dried beans, peas and lentils. (Canned beans, peas and lentils as well.)
• Almond meal.
• Variety of nuts, raw, unsalted.
• LSA (Linseed, Sunflower and Almond meal)
• Psyllium husk
• Flours: All purpose Gluten Free plain; All purpose gluten free self-raising; rice flour (brown rice flour has a little more fibre), soya or lentil flour, corn flour (pure maise), potato flour, besan (chick pea flour). The soya and besan flours will be better in terms of GI, but sometimes you've just got to use a white flour, and lots of them just aren't low GI. (I've just heard about a low-GI gluten-free cookbook and I'm very excited about it.)
• Vinegar
• Raw popping corn (heat pop it, don't use oil) it's a healthy snack.
• Polenta (cornmeal)

While we're here, what don't we want to see?

• Potato chips (high GI, high fat, high salt - no nutritional value)
• Salted, roasted nuts (high salt, extra fat)
• Most pre-packaged "snack foods" - especially museli bar-type things, they're junk masquerading as healthy.

Now the fridge, open it and have a good look. If it's not at least half full of fresh fruit and vegetables, you have a problem. What belongs in your fridge?

• Skim lactose-free milk. (Or low-fat lactose-free, gluten free soy milk.)
• Lactose free margarine, check the label. If it says words like "saturated fat" or "trans fat", that's bad. Repeat after me: "Saturated fats are bad, and trans fats are pure evil!" Look for monounsaturated fat.
• Skim yoghurt. Flavoured is OK, but try to go for sugarless.
• The lowest-fat cheeses you can find. We're going easy on the cheese because while it's really good for our calcium intake, that often comes with a tad too much salt. A little cheese is good, a big bit might not be so good. 
• Lots of fresh fruit and vegetables.
• Sweet potato. Remember regular white potato is fairly high GI - if you serve it with sweet potato (low GI) you lower the GI of the whole meal, making it that much better for your body's blood sugar levels and insulin response.
• Eggs (I prefer cage-free, but that's for the chicken's sake, not mine.)
• Acidic, oil-free salad dressings.

While we're here, let's look for bad things that shouldn't be in the fridge:

• Soft drink. It has no redeeming features whatsoever. Drink water, tea, coffee, milk, not sugar and fizz mix.
• Fruit juice. (Yes, I mean it.) Fruit juice is basically fruit with the healthy bit removed. That stuff you chew when you eat fruit, that's the bit that's good for you. 
• Vegetable juice (see fruit juice.)

Now for the challenge of the freezer. We want to see:

• Very lean meats. Beef, lamb, pork are OK as long as they are trimmed of all visible fat. If you buy mince, make sure you ask for the leanest they have. (What Woolworths calls "heart smart", and one of the butchers I've been to calls "Weight Watchers" and another calls "Diet Mince".)
• Chicken, turkey etc are great, but when you cook them you're doing it without skin.
• Kangaroo's good.
• Fish is good.
• Bread - get the grainiest gluten free bread you can find. Whole grains are lower GI than white flour. Bread with fruit in it is also lower GI than regular bread.
• Dairy-free sorbet. (What, did you think I was totally against treats?) Only a small tub.
• Low-fat, lactose-free ice cream. (Goes great with fresh fruit.) Only a small tub.
• Extra serves of healthy meals you've cooked and put in the freezer for when you're in a hurry.
• Frozen vegetables. (Actual vegetables you can steam or microwave, nothing with fat or batter, etc. A hash brown not a vegetable, nor is it any other sort of  food.)
• Frozen berries (always good - you can put them in a blender with fruit for a smoothie, add them to pancake or cake batter and the fruit helps reduce the GI, add them to yoghurt so the frozen berries freeze the yoghurt and make a great substitute for ice-cream.)

What does not belong in your freezer?

• Most pre-packaged food. Check the labels - you might find some that are OK. What you want to avoid is saturated and trans fats - high amounts of salt or sugar - or things made with lots of flours etc for thickening. (So pretty much most pre-packed meals you'll find.)

So, now you're feeling so virtuous because you've looked at your kitchen and everything is perfect - lets' find some nice recipes.  I'm going to cheat here, and give you recipes I've already put up on Sometimes it is Lupus. You'll notice I've got dessert covered as well as meals.

Buttermilk Pancakes with blueberries.

• Quick and Easy Scones Definitely not low-GI, but much lower in fat than traditional scones, and a quick thing to make if you're going to bring a plate to morning tea somehwere.
• Chicken and mango salad.  Just yummy. Remember to take the skin off the chicken, and use an oil-free dressing.
• Blueberry and almond pavlova This looks decadent, but is low fat and actually has some good nutrition in it.
• Buttermilk pancakes Adding fruit, eg berries, will help lower the GI. Cooking in a non-stick pan removes the need for oil, and means there's very little fat. 
• Crustless Zucchini Quiche This is one of those things that really belongs in your freezer!



Blueberry and almond pavlova.

• Red lentil dahl with spiced basmatti rice. All I can say about this recipe is yum!
• Corn Frittata Very nice, and can be frozen.
• Red Lentil and Tomato Soup Again, Yum. (Not so exciting at this time of year, but when the weather's cold this is just the best.)

Want more information? Check out these resources:

 

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Health Blogging Month Day 11 - If it's not broke, don't fix it

If it’s not broke, don’t fix it. What is working well in your community, healthcare, blogs, social media, or your work in particular? What do you like about it?

As I said yesterday, I have really only just found my way into this world.

What is best about it is that the online support network has become my primary support network. Lupus Australia used to have drop in mornings where lupies just got together. Circumstances have meant these have not been happening for some time. Before they stopped, I stopped going anyway - because when I was sick, it was just too far to drive every week.

I don't have to go anywhere to write my blog. I don't have to go anywhere to read other people's blogs. I don't have to go anywhere to check who's on twitter. I don't even have to get out of bed if  I'm not feeling well enough.

As long as I have my computer and internet connection, I have a support group on hand at any time.

This is what makes the lupus internet community amazing. Everyone is in it to support each other.  Everyone knows what the Bad Days are like. Everyone knows how exciting it is to have good days.
People I've never met put encouraging comments on my blog posts, or share what is going on for them - I do the same on their blog posts. We understand each other.


This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

I'm Tired

Something life-changing happened today. My baby had his very last day of high school. I have to admit there have been times the going has been rough, and I wondered if we'd actually make it this far.

Some of that was because of my health, and my fear that I would not live to see my kids grow up. Some was the fear that they would do something that would truncate their lives. (We've come close - there was a time when number one child fractured her skull through the upper sinus, and the nurses told me they didn't want her in their ward because they didn't think they were qualified - but had been told not to put her in a helicopter to Brisbane. Oh the joys of a country parish!)

But the day has come. They've both survived to finish high school. One is at uni, and one is waiting to see a TAFE counsellor about how we can pay off fees for him to study there next year.

I brought my boy home from school, and we had a fairly normal conversation about his day before I went to weight loss group. (I'd gained between 3kg and 4kg since last week - I took a fluid tablet and decided not to worry about it.) When I was driving home, it occurred to me that I was tired.

It's a different kind of tired. It's not my lupus-not-enough-energy-to-lift-my-head-off-the-pillow tired. It's a tired that may not even be in my body. It's a tired that comes from realising that for a bit more than 20 years I have been a mother, for a third of that time I've been a single mother, and for all of that time I've been mother to someone (for 17 years of it, two someones) who have Asperger's. It's been really, really, hard work, just getting the three of us through this.

It's not over yet. Neither of them has finished their education. My daughter has talked on and off for three years about moving out, but has never made any concrete moves to do anything of the sort. She's the kind of person who seems to carry a cyclone with her wherever she goes. Things just happen. Yesterday, she borrowed my printer. She managed to have three paper jams. I've been using the same printer more than six years (it has outlasted three computers), and I've never had a paper jam. Then she picked up my stapler, and tried to refill it with fresh staples. Most people can do that. In her hands the stapler simply fell into five pieces that could not be reassembled. (I bought a new stapler.) This is normal for her - destruction and mess just go everywhere she does, and most of the time she doesn't even see it. If she cooks, she manages to leave food not only all over the stove and benchtops, but the doors of the kitchen cupboards, the floor, the walls. And she will try to clean up - but usually that makes more mess for me to do something about later.

Don't get me wrong about this, I absolutely adore my kids. I'm just getting too tired for the amount of work they create for me. I am so looking forward to the time when I can go to their homes to visit them - and have some order in my own home.

The other crisis is financial. When my baby turns 18 in a couple of months, my ex-husband no longer has to pay child support. I understand he is looking forward to this very much. But I have to find that money somewhere, because I still have two full-time students living with me, still needing to be fed, still leaving lights and things turned on unnecessarily and running up the electricity bill, still using the resources that all people use - and someone has to pay. Come March next year, I'm that someone, all on my own. Child support is only about 20% of the money coming into the household - it shouldn't be too hard to make that much up, right? After all, I'm able to work about a day and a half a week.

Am I bitter? Resentful? Not really. Motherhood is a great privilege - and I'm so proud of my kids, of their intellect, of their sense of justice, of the talents they both possess. I'm amazed at the wonderful young adults they have become - and sometimes wonder if I actually had anything at all to do with it. No, I don't resent a minute of being their mother.

But I am so very tired.

Blessed Relief

I told you a while ago I'd ordered a "Circulation Booster" Machine, and would report back on how it goes.

It is absolutely amazing.

Under the desk.

Effectively I can have physiotherapy sessions while working at my desk, watching tv or whatever. While I'm writing, I simply move the TENS gel pads every half hour from one ouchy spot to another.

The result is that I've been able, with my GP's blessing, to cut my NSAIDs (non-steroidal anti-inflammatory tablets - for those not familiar with the jargon), down from one every day to one every second day.

I was asked if I have "cankles" now.  Honestly I don't know if I ever did. I've been so distracted by pain that I haven't worried much about whether I could tell my calves from my ankles!

This is a TENS machine, it works by putting a controlled electric current through the ouchy areas - confusing the pain messages that nerves send to the brain. It works for me - whether it will work for you, I can't say, but if you're struggling with pain, it might be worth talking to your doctor and/or your physiotherapist to see if something like this could be of help. (Ask your physio about how and where to place TENS pads for your condition as well.)

My health insurance doesn't cover TENS machines, I've discovered, but some health plans do. In the long run, even without health insurance helping with the cost, it will pay for itself for me, simply because I cut back on pain meds, and have physio without paying a physiotherapist.

Health Blogging Month Day 10 - The future of online activism

The future of online activism. Our favourite social media sites are constantly undergoing renovations to become quicker to navigate, easier to interact with, all encompassing, mobile, and everywhere. Imagine the same thing about your community - how will they evolve, improve, and grow?


This one's difficult for me. I've only been taking part in the on-line discussions about lupus since May this year.  In that time, I've discovered it's a world that's already full of dedicated, intelligent, people who work tirelessly despite a condition that by its nature causes fatigue.

At times, I wonder if I'm actually contributing anything new or of value.

Where will the future of on-line activism go?

There's two strands that I've found so far - that we support each other - and that we try to make the rest of the world aware of what life is like for us. I would hope that both would continue to grow.

Having found that there's a world-wide support network I can access without leaving my house was a great gift to me - I would hope to be part of passing that gift on to others. There is nothing quite as good as finding someone who actually understands, without me explaining anything.

As far as wider awareness goes, there's two things I'd love to see - the first being that people actually know what lupus is, and realise that it's not only a serious illness, it's also very common.

If further awareness helped increase funding for research; maybe one day lupus could be cured, and there'd be no need for activism, education or even support. That's the future I'd really love to see!




This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Health Blogging Month Day 9: My Personal Brand????

- Firstly - from yesterday-

Available at Iris' Shirt Shop

The lie from "Three Truths and one Lie" yesterday was Number 3 "Lupus is contagious."

Lupus isn't contagious at all. You can't catch it from anyone else.  There's lots of theories about how people come to have lupus. It seems to be a combination of genetic predisposition and environmental factors.

You could spend a lifetime sharing a home and your life with a lupie, and never contract their condition.


Today's topic:
My Personal Brand As a Health Activist, you are a front-facing leader. What do you imagine you look like to your readers? What qualities do you possess? It's OK to toot your own horn today - you have full permission to indulge. And don't hold back.


I've never thought of myself of having a "personal brand". I certainly don't consciously try to project any particular persona.


What I do in my blogging, is pretty much using the skills I have gathered over the years, through education and professional experience.

I've been a journalist, and I am a Christian minister. Both of those professions require communication skills. What I do is simply apply the communication skills I already have to an area I was forced to learn about. Lupus matters to me because it landed on me out of nowhere and I had to learn what to do with it.

Mr Wonderful tells me my lupus blog is an extension of my ministry, a lupus chaplaincy, if you will.  I don't know if other people see what I do in that way. I guess in some way, it does relate to ministry, to the extent that I hope to support others who are dealing with a difficult situation. And anything I do to care for others, grows out of the care that God has given me.

My "brand"? I don't know. But I've only been blogging a couple of months, perhaps my on-line identity will develop over time. Perhaps it is for other people to define - I don't know how readers perceive me unless they choose to tell me. (And please feel free to tell me!)


This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Some of the lupus designs at Iris' Shirt Shop

Sometimes it is Lupus design mug.
Design also available in men's, women's
youth's and children's t-shirts.

Lupus Bites Ladies' long-sleeved T-shirt. Design
also available in men's, women's and youths' t-shirts.
Men's and women's singlets. Stubby cooler
and mug.

Lupus isn't contagions design men's tee-shirt
Design available in men's and women's t-shirts
and singlets, and mug.

Wrong Sometimes it is Lupus Kids' t-shirt
Design also available in Men's,
Women's, and youths' tee-shirts,
men's and women's singlets
and mug.

Iris' Shirt Shop

Health Blogging Month Day 8: Fact and Fiction

Three Truths and One Lie. Tell us 3 things that are true about you, your condition, your Health Activism, or your life. Now tell us one lie. Do you think we will be able to tell the difference?


Three truths and a lie: this will be interesting! OK, so I will give them to you in no particular order - and give you the opportunity to guess which is the lie (I'll tell you which is the lie tomorrow.)

1. Lupus is a serious health condition that can be treated with rest and medication, but cannot yet be cured. It can attack any organ of the body, and will sometimes flare for no apparent reason.
2. Most lupus patients are women.
3. Lupus is highly contagious. If you live with someone who has lupus, you have to be extra careful of hygiene, and ensure you are not exposed to any the patient's body fluids.
4. Many of the drugs used to treat lupus were actually developed for other health conditions, such as cancer or malaria.

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Health Blogging Month Day 7: Mondayitis!

Case of the Mondays. Write about something that gets you down, burns you out, or makes you sad. Purge it in a blog post. Turn it around at the end. Tell Tuesday why you're ready for it.

lupus.cheezburger.com

Strangely enough, it usually is Monday that does get me down.

In ministry, the biggest day of the week is Sunday. I don't work longer hours on a Sunday - quite the opposite, Sunday really is just the morning. It is, however, the focal point of the week. Everything I do leads up to and grows out of worship. A lot of intellectual and emotional energy therefore goes into making Sunday work well.

I love my work, and I especially love Sunday mornings with my wonderful congregation.

The problem is, with lupus, there's only so much energy available. When I've used up everything I have on Sunday, there's nothing left for Monday.

Most of the week, I ration my energy carefully. Sunday's just too important, I give it everything. So Monday must be recovery day. On Monday, I have to just rest, do as little as possible, and devote all of my time to self-care.

By Sunday dinner time, meals are microwaved leftovers. (To prepare for this, I usually, cook more food on other days and keep meals in the freezer.)

By Tuesday, I've normally recovered and am ready to start the week.

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Health Blogging Month Day 6: Chronic Illness Business Network

If I could do anything as a Health Activist... Get aspirational. Money is no longer an option. What is your biggest goal that is now possible? How could you get there? Now bring it back down to size. How much of this can you accomplish now, in a year, in five years?

What an amazing topic this one is! It's not only made me think, but actually do something. (We'll get to that in a minute.)

The topic says money's not a problem to start with. I want more than money - I want to recruit some brilliant mind with expertise in computing and the on-line world, and with an understanding of business. So, let's assume Bill Gates has come on board as advisor.

My brilliant idea, which Bill will know how to implement, addresses the issue of how people with chronic illnesses support ourselves financially, when our health is a bit unreliable for regular work. Don't get me wrong here, I really do appreciate the social security system and the support I've received, but I'd rather earn my own way. I suspect lots of other people with conditions like mine would rather be earning our own income than relying on social security as well.

My new best friend Bill and I would set up an international network of on-line businesses, run by people with chronic illnesses. We would sell clothes, secretarial services, books, anything and everything that can be done from a computer (so not hairdressing or dentistry, but a lot of other things.) It would mean we could totally control the amount of work we do and when, being flexible enough to account for Bad Days and putting in extra effort when we are well.

Earning our own money (instead of pensions) would help us to feel more that we were contributing to society, which would help with the problem of depression that often accompanies chronic illness. A website which offered a directory of such businesses, and information about setting up your own on-line business, with advice and support would help strengthen the network and assist the individual businesses to be successful.

That's the dream. In the real world, the closest I come to knowing Bill is following him on Twitter, and he does seem a bit busy (even in retirement) to take on the project.

So what can I do?

Right now, I can start researching what opportunities are available for people with chronic illnesses to start up their own on-line businesses.  This is where I did some actual work while thinking.  I set up my own t-shirt shop. Cool huh?  This is a set-and-forget business. I create designs and put them on a website that I got for free from the printing company.  Customers order from the site, and the printing company prints up the shirt (or mug or whatever), sends it to the customer, and sends me a commission. There's no stock to buy and store, because the product is only made when it's ordered. That's the theory. As I only set this up on Friday and haven't sold anything yet, I can't tell you for sure how well it works.

In case you are interested, the link to set up your own shop is: customyourshirt.com/open-a-tshop-pg-freeshop.html .  If you want to check out my shop, the link is irisshirtshop.toctopus.com.

If you want to make your own t-shirt designs like my "Lupus Bites" one on the left - you will need an image manipulation program, like Paint.Net which you can download for free. Should you use images from the internet, be careful to check the copyright - some people make their images freely available, but others do not.

Another thing I can do immediately, is to ask anyone who has lupus (or another chronic illness) and has their own internet business - please send me the details of your business - I will post it on the "Lupus Links" page of this blog. (When I have a few of them, I'll give them a separate page.) If you have hints, or tips for setting up your own internet business, that you're willing to share, please tell me about that as well.

As for what I can do from here: I can continue to trawl the internet for business ideas - and post them on the blog as I find them. I can also publish details of any internet businesses others have operating. For the next year, that seems a good enough goal for something I'm doing in my spare time while I'm well.

Over the next five years? Who knows? Perhaps the network really can grow. Maybe my blog will become a minor part of  sometimesitislupus.com, and the most important part will be a directory of lupies' businesses, and business hints and tips.

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Health Blogging Month Day 5: Things that Changed my Life

5 Things that Changed my Life. For better? For worse? List 5 things that changed your life as a patient, caregiver, or Health Activist and how.

1. Diagnosis. (Mine).  Being diagnosed with lupus was actually a great relief in some ways. I had been sick on and off most of my life with symptoms that seemed totally unrelated. I'd just been sick all the time, with no apparent reason. An explanation, gave me some validation - I wasn't malingering or imagining things - I really was sick, and probably had been all along. I learned as much as I could about my condition, to work out how I could help in my own care. If I don't work to improve my health as much as possible, how can I expect my doctors to put their best effort in?
2. Diagnosis. (My kids'). A different condition all together. I had worried about my kids' development and social skills. As a young mum, other people told me I was imagining it, that there was nothing wrong. That was until they started Kindy and Preschool, and suddenly teachers were telling me I had to get something done about multiple problems they had with social skills, fine motor skills, etc.  The diagnosis of Asperger's Syndrome allowed me to actually learn about what was happening, and help them to understand their strengths (not just the weaknesses others would point out to them.)
3. Divorce. I was in a very bad marriage, until not long before I was diagnosed. When the diagnosis happened, I was separated, but not yet divorced.  Realising I had a condition that actually did kill people, I was forced to look at my life and what was important. One of the things I realised was important was protecting my children's interests. Until I actually had a divorce, I could not make a will that could exclude my ex-husband (at least one that he could not contest.) This was my impetus to actually go through the time and effort to get the divorce and make a will, setting someone else as trustee until the children reached adulthood. (The youngest will be 18 in four month's time - the whole issue of a trustee will simply not matter at that point.) It wasn't just the divorce - which did leave me finally feeling free of one great burden - but the whole reassessing my life, deciding what was really important and what I had to free myself from.
4. Retirement. This was a real trauma for me at least initially. I took my long service leave, and all of the annual leave I had owing in the year after I was diagnosed - I was trying to put off taking long term sick leave. Then I took a whole year of sick leave. Eventually, my health situation forced me into what is termed "temporary retirement".  There is still some hope I will return to full-time ministry, but it's not looking like happening in the forseeable future. For my first year of retirement, the wonderful people of Ashgrove West Uniting Church allowed me to do one service per month for them. For that year, one Sunday morning per month, and a day or so of preparation work per month was pretty much the absolute most I could do. This year I formally became their minister - but only at 30% time. It's such an amazing congregation that they look after themselves most of the time. I have the joy of feeling that I'm contributing to the life of the church, but not the standard workload of ministry. I have a supportive, understanding, congregation. They're a small church who couldn't afford a full-time minister, and I'm a minister who's not in any state to work full-time.
5. New Relationship. My rheumatologist had told me for years that I needed to get married. I always resisted trying a new relationship because my marriage had been such a disaster. I eventually put my profile on an internet dating site. I half-expected that I would not find any nice people. I actually found a number of nice people, as well as a few quite creepy people. For more than a year now, I have been dating Mr Wonderful. He really is wonderful. He is patient, understanding, and very kind. He's aware of my condition and encourages me to rest when I need to, and to say when I need extra support. This relationship has been one of the best parts of my life. Having spent 16 years in a marriage where I didn't feel valued - I really hadn't expected anyone to love me with all the limitations I have now. Every day I thank God that Mr Wonderful has become a part of my life - that I do feel loved for who I am. This relationship is part of what keeps me grounded, even on my worst days, I am reminded that I am more than this horrible disease.

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J