Saturday, 18 April 2015

What Would You Do?

Ipswich lupies Robyn, Katrina, Kathy, and me,
with Mayor Paul Pisasale.
We had a lovely lupus catch-up in Ipswich today.

I enjoyed having coffee with three other lovely lupies from the Ipswich area, and as a special treat, our local Mayor Paul Pisasale dropped by for a while.

We're very fortunate in Ipswich, our local mayor is interested in pretty much everything that happens here.  He also has family links to lupus, and so understands our situation more than many other people might.

Paul's visit left us with some interesting questions to think about.  He raised the topic of projects we might want to do and whether he could help us get funding.

That threw me for a moment. The Lupus Association Queensland isn't a formal body, we don't have a bank account, and we don't really do anything except get together for coffee.

That's how the parent group in Brisbane still functions, and we've only got together twice here, and so far it's what we've done.

Don't get me wrong.  That's a lot.  Just being with other people who understand the challenges of everyday life, of having a group that makes me feel "normal" is wonderful.

But here we were today, enjoying the feeling of a group that we could be the "normal" members of, when the Mayor himself suggested there could be money available for a worthwhile project.

It got us thinking and talking.

After a few jokes about asking the mayor to pay for our lunch, a very good idea started to take shape.

There's a natural spa not far from Ipswich.  What if we organised a weekend? Lupies could take our sore joints there, and we could get a specialist pain doctor to come and talk to us about pain management.  I thought about it later and thought maybe a physiotherapist could come and help us with exercise.

It's an exciting idea.  I'm sure many other exciting ideas will come up over our next couple of get-togethers.  And then at least one of us will need to find the brain power and energy to act on some of those ideas.

I've often wondered what I would do if I had money for lupus projects, never imagining that I would actually have any because, really, I don't have the energy or cognitive function for fundraising.

Today we were brainstorming, daydreaming, thinking of all the possible or nearly possible things we could do.  It was exciting. Some of it may actually happen.  Our mayor's the kind of person who knows all about how to make things happen, so there's real possibilities here.

So what would you do, if you had a chance of funding something constructive for lupies in your area? What do you think would make a lasting, positive, difference?

Saturday, 11 April 2015

My Parking Spot is None of Your Business

OK, I've posted about carpark vigilantes not all that long ago, but something really creepy's occurred to me.

See the links down in References?  Click on the story about the prosthetic leg user.  The person who left the note on her car said they had videoed her several times.

Now check the story about the man from Darwin with the heart problem. The person who left that really offensive note also said they'd taken a photo.

OK, so clearly any sense of privacy anyone thinks they have in our modern world is an illusion.  Those of us who live most of our lives online were pretty much aware of this anyway.

But, at least in the case of the lady with the prosthetic leg, recording her had been something the person had done a number of times.

Not only had this person nothing better to do with his/her time, but was so obsessed with a disabled woman's parking habits as to be stalking her.

These photos and videos, if they exist, don't just document that disabled people are using disabled parking spaces (how shocking is that?)  They raise a lot of questions about the people on the other side of the camera.

What is wrong with these people?

How do they have the time and energy to be policing other people's actions, when it's none of their business?

What makes them think they are so righteous that they can decide, without collecting any evidence, who is guilty or not guilty, of parking in the wrong place?  And do they do the same thing for other imagined, or even real, violations? Do they video people who drive at 12km/h through the carpark that has a 10km/h limit? Do they give offensive letters to people who cross the street against the lights? Do they watch the parking spots reserved for parents with prams or for elderly people, and give out offensive notices to parents who have too few children or elderly people who don't look quite frail enough? Do they video the people who smoke under the "no smoking" sign outside the shopping centre? Do they take photos of people who take 11 items through the "10 items or less" checkout?

Why do they pick on people with disabilities?  (Are fit, healthy, people too likely to fight back? Or maybe it's because it's not socially acceptable to pick on any other group of people.)

Are they just so petty, and so selfish, that they resent that something is reserved for someone other than them?

If these people did, in fact, turn their vidoes, photos, etc over to the police, would they be charged with stalking or harassment, or something? I certainly hope so. I'd love to be reading about carpark vigilantes being brought up before the courts and fined for their abusive and offensive behaviour, for their victimising of vulnerable people.

These vigilantes will say they can tell by looking whether a person is "disabled enough" to need the parking space.  The lady in America only had one leg, the man in Darwin was going to go into heart failure if he exerted himself too much.  Just how bloody disabled do you have to be for some people to think you deserve a parking space?

As I've said before, I've never had this problem.  The worst I've encountered was someone parking so close behind my car that my son couldn't get my mobility scooter in the back.  We've since had a bumper sticker made up asking people to please leave a little space, and so far that's been respected. (Maybe Ipswich is just a more understanding kind of city than some other places.)

But, I'm going to take a wild guess that for everyone whose story is heard, there's a lot of other people out there who have taken abuse because someone didn't see their disability.

I do know that a lot of people refuse to use disabled parking spaces because they're afraid of this kind of abuse.  That means that the parking spaces are being under-used, and that people with chronic illnesses and other disabilities are putting extra stress on bodies that just don't need it. Some will not be able to go out often, because they use far too much precious energy walking further on the few times they do go out. If horrible people are causing that much fear in the disabled community, that is a serious problem.

References (News reports): Abusive Note Left on Car of Darwin Couple with Valid Handicapped Permit; Natasha Hope-Simpson, Prosthetic Leg User,  Gets Note Saying 'She Should be Ashamed'.

Related Post: Curses on Carpark Vigilantes

Thursday, 9 April 2015

Back Away From The Sandwich

Image: sleeping cat. Text: My special skill is sleeping on the couch. What's yours?Well, that's a big fat fail on the 30 posts in 30 days Health Activist Writers' Month Challenge.

Where have I been?  Well, mostly in the loo, and otherwise I've been on the couch, utterly exhausted, sleeping in front of the tv.

There's something really perverse about lupus.  I've spent days and days hoping I have a really bad case of gastroenteritis, or maybe dysentery.

I've also been waiting for a retest on my latest bad liver function test.  The result of the retest is that yes, it is improving, but still not great. (I was kind of expecting that, my liver function tests are always fluctuating.) There was just this nagging doubt that because I felt so incredibly sick, maybe this time it wasn't going to improve.

So that was my Easter. I didn't even get to church.

Of course, there's a glaringly obvious cause for my abdominal disturbance.  I've been eating gluten.  Not just sneaking a tiny bit now and then, but eating like a normal person.  I keep saying I'm not celiac, just gluten intolerant. It won't kill me.  Right now, it feels like it is killing me, which is probably a good reason to go back to my strict gluten-free diet.

Yes, I hear you yelling at your screen, "Who does she think she is, trying to get away with doing anything like a normal person?"

What can I say?  I'll just put this sandwich down, and back away slowly.

(Oh, a little note to those people who choose not to eat gluten, even though they aren't celiac or gluten intolerant:  Are you insane?  Do you know how much I would like to be able just to eat anything I felt like without getting sick? Having said that, thank you for making gluten free products popular enough that I can get them easily.)

Saturday, 4 April 2015

Bad Habits

I have one very bad habit.  OK, I've probably got lots of bad habits. But I'm only going to tell you about one.

I bite off more than I can chew.  I have a habit of starting to do things, that I just can't get finished, because I just don't have the energy.

By now, I should know my own limitations enough to know how much I really can and can't do.

I always want to do more that I know I can.  So I frequently get started on projects I have no hope of ever

This post part of Wego Health's Health Activist Writers Month Challenge.

Today's topic: What good habits, (health or otherwise,) do you have? Do you have a routine that you follow every morning? Are there any bad habits you wish you could break? #HAWMC

Health Bloggers/Activists out there, if you want to join in the fun, find the details here.

Friday, 3 April 2015

Try a Little Kindness

Image: Church lit up against night sky; Text: Love is a light in the darkest of nightsIt's Good Friday.  In the Christian faith, it's a time to look at love, and the cost of loving.  It's about how God loves us, even when we are completely unlovely.

Lots of lupies I have contact with have experienced terrible treatment from people who don't understand their pain and fatigue; family members who have been judgemental, strangers who have been intolerant.

I have not really had that.

I have a family who are loving, and supportive, a real joy.

I have friends who are understanding of my limits, and who are caring.

I have recently moved from one loving supportive church community, to another which so far seems it will also be loving and supportive.

Even strangers are nice to me, usually.

Special delights have been: to receive in the mail vouchers for massages - a farewell gift from my last church congregation; my daughter's partner cooking dinner for me; a stranger in a shop reaching things down from the shelf for me.

These might seem little things.  But really they are big things.

Little acts of kindness, little glimpses of love, can make the biggest difference.

This post part of Wego Health's Health Activist Writers Month Challenge.

Today's topic: We love random acts of kindness. Write about a time that you benefitted from the kindness of a stranger, or a time when you were the one extending a helping hand. How did you feel?

Health Bloggers/Activists out there, if you want to join in the fun, find the details here.

Thursday, 2 April 2015

Always Look on the Bright Side of Life

Image: my toddler granddaughter, and my Staffie bull terrier, sitting together on the couch.
No matter how bad the day is, these two little princesses
can make me smile.
It could be easy to fall into despair with all the things lupus has taken away. Sometimes I do get depressed and sometimes I am afraid of what lupus might be doing to me.

Most of the time, I aim to be happy despite the things that lupus is doing to me.

The big thing that helps is my family. My children and grandchild, and my crazy pets, make me smile no matter how sick I am. I am so proud of my wonderful family, who have been through a lot, but still support each other and me.

I could be upset about having to give up my profession because of lupus.  But I have gained something incredibly precious - I have more time with my grandchild than I could possibly have had if I'd been working. I can have playtime or story time pretty much any time I have the energy. Very few grandparents are able to enjoy all that I have.

Friends also make a huge difference.  I confess to being a lousy friend.  I've had three people I want to contact on my "to do list" for a couple of weeks, and just not found the energy.  But I know that my friends are among the most caring, loving people in the world.  Even if I don't get to see them and talk to them, I watch for their news on social media, and they are always with me in my memory.

I was baking today, and it made me think of the wonderful person who had given me the mixer I use to knead dough (can't do that with my hands anymore), the couple who made the sliding tray the mixer stands on so I can move it around the bench, and my lovely son giving me the smart watch with multiple timers for all the different things I was trying to keep track of.  Many of the things in my home have some relationship to people I care about, and everyday tasks remind me of the amazing amount of love I have been shown.

I also try to laugh at lupus.  You might have noticed that from the number of blog posts about the stupid things I've done during bouts of brain fog and fatigue.

And I use the little energy I do have for things I love doing; sewing, baking, writing, arts and crafts. Yes, I do write quite apart from blogs: you can do an author search for Iris Carden on Amazon or iBooks and find some of the things I've done.

I guess I have always believed it's possible to find happiness in any circumstance.  It goes with my Christian faith, the belief that whatever happens, I'm not dealing with it alone, Jesus is with me.  Knowing that, in Christ, love is stronger than anything lupus, or life in general, can throw at me, is a great source of happiness.

So, if I were to summarise it, love, a sense of humour and focussing on the things I can still do, are the things that get me through and help me to find happiness.

This post part of Wego Health's Health Activist Writers Month Challenge.

Today's topic: What do you think is the key to happiness? Is it being able to overcome a hard time? Laughter? Maintaining a positive attitude? Tell us what you think and why. #HAWMC

Health Bloggers/Activists out there, if you want to join in the fun, find the details here.

Wordless Wednesday

Selfie of me. (Yes, boring, but I signed up for this thing.)

This post part of Wego Health's Health Activist Writers Month Challenge.

Today's topic: Wordless Wednesday! Since this is the start of HAWMC, post a picture that shows how excited you are for the next 30 days. We always love a good Health Activist selfie! #HAWMC

Health Bloggers/Activists out there, if you want to join in the fun, find the details here.

Tuesday, 31 March 2015

Fog Fatigue Movie Review

Movie Title: I forget.

Synopsis: Two brothers, the pregnant wife of one brother, and the other brother's dog go hunting, declaring alcohol and firearms a family tradition. (You know at this point these people are going to die.)

The forest is closed, but being very naughty people (who are probably going to die), they go in anyway. The camera pauses ominously at a pile of shoes in the slide as they go through a disused playground.


The dog is dead (I said someone is going to die). Someone in a weird mask is shooting at the man who owned it. (He's probably going to die too.)


The woman is telling her husband she's pregnant. They both have Xs on their foreheads, and the husband seems to be in his underwear. They're walking through the forest. (They're probably going to die as well.)


"Here are your pills, you really need to go to bed." Oh, that's not the movie, that's my son. Looks like the movie's over already.

Characters: There were some. The dog was a very convincing dog, disappointing to see it killed off so early, if it was early. The humans, I could take or leave.  Actually, leave, they didn't seem very bright.  They missed all the cues at the beginning that said they were going to die.

Camerawork: That significant pause on the shoes was really good, if it meant anything at all, which it might or might not have.  It probably meant they were going to die.

Dialogue: Pretty dumb, and not much of it. I couldn't have heard much more than ten minutes of dialogue in the whole film.

Direction: I guess there was some direction happening.  A bit hard to tell from what I saw.

Sleepability: Ten stars.

My Overall Impression: Watching a movie with lupus brain fog and fatigue means never having to know how it ended.

Wednesday, 18 March 2015

Ssssshhhhhhh. It's An Embarrassing Secret

Image: Shower. Text: You think you've defeated me, but I'll be back. Evenutally.I have an embarrassing confession to make.

I know I'm not alone in this, because other lupies have told me they do the same.

Please don't think badly of me because of this but... (whisper)  I no longer shower every day.

You see, lots of everyday things leave me utterly exhausted.

One of those things is having a shower.  I can do it, but I have to just rest for half an hour, sometimes longer, afterwards.

All in all, a five minute shower takes a big chunk out of the energy I have available to survive the day.

So, I'm afraid, I only shower every second day.

But at least I'm not the only one with this terrible secret.

When I talk on social media about everyday things that leave me exhausted, one of the things that lots and lots of lupies will respond is that showering leaves them utterly exhausted and they have to rest.  As it turns out, my embarrassing secret, isn't just mine.  It's "normal" life for lots of lupies.

So if you're one of those people who enjoy a relaxing shower after a long, hard, day, make the most of it.  For some of us, having a shower is a long, hard, day.

Related Post: The Energy Budget

Thursday, 12 March 2015

It's All In My Head

If you've been following this blog for a while, you know that one of my biggest frustrations is that my
Image - my brain SPECT scan
Pretty colours - not-so-pretty results.
brain just isn't functioning the way it used to do.

It's not just that I'm getting older.  I haven't just been forgetting the odd thing here and there.  I've been completely confused at times, and I've had the odd hallucination.  (Actually, all hallucinations are probably odd.)

The latest person to look at my mental failings is a gerontologist (a specialist who looks after old people).  She sent me for an MRI and a SPECT scan of my brain.

For those who haven't experienced either of these tests, I should explain what it's like.

For the MRI, the specialist double-checked when referring me that I wasn't too fat to fit in the machine (well, that really made me feel good about myself), and asked if I was claustrophobic.  Again, at the radiology place, I was asked several times if I was claustrophobic.

When I was finally in the machine, and wondering if I might end up tightly wedged in there and not be able to get out, I realised that it was entirely possible to become claustrophobic left in this tiny space.

I was lying on a very narrow gurney, which automatically drove itself into a tiny slot (like the eye of a needle) in a large white machine.  It made lots of thumps and grinding noises.  Imagine someone very enthusiastic but not very musical, practicing percussion for a heavy metal band. The challenge is to lie as still as possible, not freak out about whether or not it is possible to actually get out of the machine, hope there's still someone out there operating it, and survive the worst percussion performance in history.

The end result? My MRI was perfect.  No sign of anything whatsoever wrong. All good, except there were still no answers there.

Now for the SPECT scan.

This starts with a "resting" brain.  That means lying in a quiet dark room, but not being allowed to go to sleep.  Half-way through my time of darkness and silence, the nurse entered the room and injected a radioactive material into my arm.  (No, I didn't glow in the dark, or gain super powers.  Pretty disappointing, really.)

Then I had to lie down on a gurney, which threaded me head-first into another piece of techonology, which wasn't quite as loud as the MRI, but which, like the MRI seemed to take forever.  Actually, if you've ever had a regular CT scan, it's pretty much the same thing.  (I actually had a regular CT not all that long ago, but it didn't give any useful information, either.)

It was the SPECT scan that confirmed that actually, my symptoms have a cause.  I have restricted blood flow in my left temporal lobe. There really is something going on in my head, and it can actually be seen in a picture (for people who understand those kind of pictures.)

What does this mean for me? For my treatment from here?

I have no idea yet.  My GP called me in and gave me the test results.  I have to wait another two weeks to see the gerontologist to see what happens next.

Is this caused by my lupus? The GP thinks probably so, after all lupus can cause vascular problems (vasculitis) and lots of parts of the body.

What happens from here, I don't know.  After I've seen the specialist, I'll tell you what comes next.

How do I feel about it?

I'm ambivalent, really.  I'm glad to actually have a concrete explanation for my cognitive problems.  It's a relief to know there's something physically in my head - because there were times I wondered if maybe it was "all in my head" in another way. (Lupus is quite bad enough, I don't want any serious psychiatric problems as well.)  On the other hand, I'm also  bit anxious, because I don't yet know what this means.

Further reading:
CT Scan (Wikipaedia explanation)
Lupus Vasculitis (Lupus Foundation of America
MRI (Wikipaedia explanation)
SPECT Scan (Wikipaedia explanation)