Wednesday, 26 August 2015

Anatomy of a Lupie

Image:  Picture of painting model.  Text Anatomy of a Lupie.  With arrows, and handwritten notes (copied in text below)


Time for an anatomy lesson.  This is a Lupie's body, and what each part does.

Let's start from the top of the illustration.

Face - for butterfly rash.

Head - for headaches, brain fog, forgetfulness.

Back and neck - for mystery pains.

Joints - for pain.

Gut - for IBS, intolerances, general discomfort.

Skin - for random rashes.

Hands - for dropping things.

Feet - for tripping over on flat surfaces.


If I Only Had A Brain

Image: Information brochures and stressball "brain" from Fresh Futures Market.
I picked up information about the NDIS rollout in Queensland.
Today, I went to the Fresh Futures Market at the Ipswich Showgrounds.

It was designed to showcase services in the local area for people with disabilities or mental illnesses.

Much of it was targeted for families with children who had disabilities, and for mental illnesses.

There wasn't a stand that promoted itself specifically for adults with a chronic illness who cope fairly well with most things but could do with a little help around the house and garden at times.

Maybe I was hoping for something too specific. Or maybe, it's available on a state government's internet site here, with extra things like home modifications here.

Perhaps there wasn't any need for the information to be there at all, as I know how to use the internet.

What there was a lot of, was information about preparing for the roll-out of the National Disability Insurance Scheme, which finally comes to Queensland in the middle of next year.

A quick look through tells me I know most of this information from the email newsletter the NDIS sends out, that I signed up for right at the beginning.  If you need information about the NDIS, and how it may or may not apply to you, try www.ndis.gov.au, sign up for the newsletter, and see what organisations in your area are helping people prepare for the roll-out.

Image: My desk, including brain.
Keeping a brain on my desk, just in case I need one.
The final thing, I wanted to mention, for those of you who've followed my adventures in brain fog, is that a nice lady at the Anglicare stand gave me a brain.  It's a stressball type thing. My son and I both found it very funny, a brain frequently being the thing I most wish I had. (And to tell the truth, most of the stress in my life comes from my brain not functioning at times when I most need it.)

So now, there's a brain sitting on my desk.  Just in case I ever need one.



Monday, 24 August 2015

Lupus Fatigue is Cumulative

Image: Dog hiding under a blanket.  Text: I know I could do it last week, but I can't do it again today, because I did something else yesterday.  That's how lupus fatigue works.I've had a hectic week.

There was nothing wrong.  In fact it was really good.  The British section of the family was visiting.

That meant a dinner out in Brisbane one night, a visit to a Gold Coast theme park, a trip to the little local zoo, an evening of playing a card game, Friday night jazz, and a trip to the airport, apart from normal life.

People with lupus will know what all that adds up to:  fatigue getting worse and worse throughout the week.

Some people can get tired after a busy day, have a good night's sleep, and then be back to normal the next morning.

For those of us with chronic illnesses like lupus,  a good night's sleep, even 12 hours or more, is not enough to recover from one tiring day.  So another tiring day on top of not fully recovering from the day before adds up.

A week with lots of "extra" things, no matter how wonderful those things are, can really add up.

Once I'm already fatigued, I can't just do things I normally could do.

So, for example, I had to drive to the Gold Coast for one of our outings.  It's about an hour and a half drive.  On a really good day I could do it, as long as I had a good rest before coming back.

On a day when I started out tired, I had to stop for a break part way.

I'm told that when I texted to tell everyone else I would be a little late because I needed a rest, someone said I was being "overly dramatic."  I must say I was very proud of my sister who heard this and managed to restrain herself from doing anything that could get her charged with assault.

Did it seem dramatic?  Maybe.  After all, on a really good day, I could probably drive that trip.

On the other hand, the place my son and I stopped was a very, very familiar rest stop.  I definitely go there most times I do the trip to the Gold Coast for any reason.  In fact, I can't actually remember going past that point without stopping.

At the end of the week, driving back from dropping my sister at the airport in Brisbane, I took advantage of the emergency stopping bays on the motorway for a brief recovery time. It's the first time I've really paid attention to them, but now I realise they're hardly ever more than half a kilometre apart.  At the end of a long, exhausting week, just knowing that somewhere I can stop and rest is never more than 500m away, is the most reassuring thing.

Yesterday, I slept. Today I woke with a massive lupus headache that just hasn't gone away.  It might take a few more days before I get back to "normal".  (My "normal" may not be the same as someone else's "normal".)

Some time this week, I'm going to try to gather enough energy to go for a massage.

All in all, it was a great week.  The week or so to recover might not be so great, but some things are just worth the cost.

Wednesday, 12 August 2015

Want to Help Medical Research?

I've heard about a couple of studies that lupies may possibly be interested in helping with.

Firstly a local one (well, Brisbane, which is close to local).

Medical Photographer Kara Burns at the Queensland University of Technology is doing a study on medical selfies, and how taking photos of rashes, moles and other oddities could help with patients medical treatment.

If you have an interesting rash to share, Kara would love to hear from you.

You can find out more about her research here: http://www.abc.net.au/news/2015-08-12/could-a-medical-selfie-save-your-life/6691832 

If you  are interested in being part of her study, her email is kara.burns@hdr.qut.edu.au.



The other is a study taking place in the USA to test a new lupus nephritis drug.

Chris Lovelace from The Patient Recruiting Agency said:

Aurinia Pharmaceuticals Inc. is developing Voclosporin, an immunosuppressant, for the treatment of lupus nephritis, and is conducting this study to demonstrate its efficacy and safety when taken orally twice daily when compared to placebo.  The study will last about twelve months and consist of about 13 visits to the study clinic during that time.


Volunteers who participate may or may not benefit from taking the study drug, but will be contributing to research that may well help those suffering from lupus nephritis in the future. Also, they will have more tests and clinic assessments through the study than they would normally have in the course of their treatment, which may allow their own doctors to more thoroughly assess their condition.  As I’ve seen you note in your blog, the costs associated with chronic disease management can be dangerously burdensome, so this may be a way for some patients to receive more attention than they would otherwise have.

If you are interested in taking part, you can find further information at:  https://www.yourlupusstudy.com/.

Lupie Goes to Sleep

Brain: I'm so exhausted I can't fire another synapse.  Righto team.  This is it.  Lungs, a few deep relaxing breaths if you will, muscles, just relax and release everything.  It's all good.

Left Shoulder:  Sorry to interrupt, but I'm hurting.

Brain: Muscles around left shoulder, try tensing and then relaxing.  Better?

Left Shoulder: No.  Hurting. Pain pain pain pain pain.

Brain: Sorry, team, let's try moving to position B.

Lupie rolls over.

Brain: OK lungs a couple of more deep relaxing breaths and...

Left Shoulder: Pain pain pain pain pain.  Did I mention I'm in pain!

Brain: Sorry team, it looks like a trip to the medicine cabinet.

Right Eye: While we're there can we get some eye gel?  My lid feels like it's glued on.

Left Eye: Same here, and I'm all gritty and sore.

Nose: If we're doing all that, can I have a bit of nasal spray?  I'm all blocky, and if I don't get some help I'll be dripping down Throat soon and causing all kinds of trouble.

Brain: OK. Anyone else need anything from the medicine cupboard?  Right, lets go get pain pills, eye gel and nasal spray. Everyone up.

Right Ankle: Ouch

Left Ankle: Ouch

Right Ankle: Ouch

Left Ankle: Ouch

Brain: Are you guys going to do that the whole way to the medicine cupboard!

Right Ankle: Sorry. Ouch!

Left Ankle: Didn't mean to cause a bother. Ouch!

Brain:  You'll get some of the pain pill.

Right Ankle: Didn't want to complain, but Ouch!

Fully medicated, Lupie returns to bed.

Gut: Grumble, rumble, roll! Grrrrrrrrowwwwwwllllllllll! Hey Brain, did you authorise this chicken sandwich from lunchtime?

Brain: Yes but, they didn't have any gluten free options.

Gut:  Gurgle.  Sclurgle. Groan.  If there's nothing gluten free, we don't eat.

Brain: I know you don't like it, but it was time for pills, and we have to have food with pills.

Gut: Rrrrruruuuummmmmbbbbbbbbllllllleeeeee.  Weren't you going to keep an apple in the handbag for times like that?

Brain: Yes, that was the plan.  But I keep forgetting to do it.  I forget lots of things.

Gut: Glurge, gurgle.  Well, I can't process this.  I'm ejecting the lot, now.

Brain:  Brown alert! Brown alert!  Toilet now.  Move team, move!

Right Ankle: Ouch

Left Ankle: Ouch

Right Ankle: Ouch

Left Ankle: Ouch

Right Ankle: Ouch

Left Ankle: Ouch

Right Ankle: Ouch

Left Ankle: Ouch

Lupie makes it to the toilet in time, and half an hour later, much paler and shaking, returns to bed.

Brain:  OK Team, that was close, but we made it.  Gut, are you sure you're OK?

Gut:  A bit wobbly, but OK.  Just be careful at breakfast time.

Brain: Left Shoulder?

Left Shoulder:  It's kind of bearable. Pain scale maybe five out of ten.  Pretty good really.

Brain:  OK anyone else got anything to say?

Left Hip:  Well, I didn't want to mention it, and I know I didn't say anything earlier, but that painkiller hasn't helped me much at all.

Left Thumb: Yeah, I've got a bit of pain going on here as well.

Left Wrist:  Same here.

Right Big Toe:  Yeah, I'm   ....  crunch!  .... Oh no, I'm OK now.  Go ahead.

Brain: So we've got a bit of breakthrough pain.  We've slept through that before, we can do it tonight.  Lungs, deep relaxing breaths, if you will....

Saturday, 8 August 2015

Defiance

Me: I've ordered a purple wig for my next lupus get-together.

My daughter: You treat lupus get-togethers like a party.

Me: It's a show of defiance against lupus. (And anyway, I don't get out much.)

Monday, 3 August 2015

Living in a Temporal Anomoly

Today is Monday.

That's a surprise, because I was expecting Tuesday.

You see, I had a Monday yesterday, when everyone else was having Sunday.  Not that I did any particular "Monday" activity - I just had it in my head that it was Monday.

I insisted my son take the bins out to the foothpath (which has to be done on Monday.)

It was only this morning, as I was about to yell through my son's bedroom door that he was going to be late for his Tuesday class, that I looked at my watch and my temporal distortion became obvious even to my foggy brain.

It's not the first time I've been living in an individualised time zone, and it probably won't be the last.

Temporal anomalies are just part of life with lupus brain fog.

Wednesday, 22 July 2015

Howling At The Moon

Painting of tree silhouetted against the full moon.
"Moon" by Iris Carden 2015.
For the past couple of weeks, I've been sleeping about 14 hours a night.  I've still been so tired, I've still napped through the day.

I've had no energy while I've been awake, and have managed to watch (read 'snooze in front of') nine seasons of Supernatural.  That's how many are available on Netflix here in Australia.

In my brief waking moments, it's occurred to me that life with lupus is a bit like an episode of Supernatural.

There's definitely something sinister going on.  There's a big, bad wolf loose, and it's not satisfied with just howling at the moon.

The wolf might be just injuring most of us, but it's also killing lupies. It's vicious, unpredictable, and not a part of most people's normal experience.


Image: Sam and Dean from Supernatural. Text "Not silver, you need methotrexate bullets for this big bad wolf."
lupus.cheezburger.com

There's no miracle cure.  In fact, no non-miraculous cure.

Image: Castiel and Dean from Supernatural.  Text: "Can you cure lupus or not?"
lupus.cheezburger.com

We use medication to ease the effects, but there's no guaranteed way to prevent the wolf attacking at will.

Image: Dean from Supernatural talking on phone. Text: "Lupus? Try a protective circle of prednisone."
lupus.cheezburger.com

We have some symptoms that just don't make sense to anyone.

Image: Sam and Dean from Superatural.  Text: "You're saying they're allergic to sunlight, but they're not vampires?"
lupus.cheezburger.com

And sometimes the symptoms can affect how we feel about ourselves and how we present ourselves to others, as well as our physical health.

Image: Sam and Dean from Supernatural looking horrified.  Text: Oh! That rash is awful!
lupus.cheezburger.com
Unlike Supernatural,  a couple of guys armed with silver bullets, rock salt and holy water won't come to rescue us.  We count on people like our doctors.

Image: Sam? from Supernatural summoning crossroads demon.  Text: I'd sell my soul for a good rheumatologist.
lupus.cheezburger.com

And we rely for support on other lupies, people we know have been to hell and back, and are still working on being their own heroes, and ours.

Image. Sam and Lucifer from Supernatural.  Text: Lupus? Welcome to Hell.
lupus.cheezburger.com
Many of us find our best source of strength in our families and our friends.

image: Sam, Dean, Ellen and Jo from Supernatural.  Text: I'm glad we're not doing this alone.
lupus.cheezburger.com


But when it comes down to it, we frequently have to stand up to the wolf ourselves, and be our own heroes.



I guess this post is what happens when I spend the best part of a fortnight sleeping in front of the same television show. It probably could have been worse (though I'm not sure how.)  Anyway, it's 7.30pm and I'm exhausted.  Good night world.

Thursday, 25 June 2015

Money, Money, Money

Image: coins and pills. text: Chronic illness lesson: A diagnosis doesn't mean you're automatically getting better. It means you're going to spend a lot of money on things you wish you didn't need.

My little granddaughter has just discovered money.

She just got a little purse, and her mother and I searched our own purses for 50c pieces (being big enough that a toddler can't swallow them) and found seven of them for her.

For days, she's been getting out her purse and asking for people to count her "monies" for her.

I'm fairly sure no-one else could feel as rich with $3.50 as she does.

I've been thinking a bit about money these days, money and how it relates to chronic illness.

It's not just how it affects me, but others with chronic illness as well.

Being sick costs money.  Even here in Australia, where we have Medicare, the Pharmaceutical Benefits Scheme and Health Care Cards provided by the government as safety nets for people with lower incomes, being sick is still expensive.   The more medications someone's on, the worse it is.

A lot of our disposable income gets disposed into the healthcare industry.  That often leaves people short in other areas.

At the same time, many of us can't work, or can only work part-time, so incomes are low.

One of the fastest growing groups of homeless in Australia is middle-aged women, and a number are homeless partly because of the cost of managing chronic illness.  (There's also an issue with rents being unmanageable.)

Lately, I've been more and more aware of things I wish I had money for.  There's a couple of modifications I'd make to my home to make things easier.  But there's also lots of other things, I've noticed.

You see, my network of friends, and social media friends, includes an increasing number of people with chronic illnesses.

I know some people who can't afford their medications, and it breaks my heart I don't have money to help out.

Someone else I know urgently needs some home repairs.

Others are struggling to raise young children on their own, while coping with illness.

These things aren't my problem. Not really.  And none of these people have asked for my help. But now that I at last have what I actually need (if not everything I would like to have), it really bothers me how many other people still don't have that much.

Money could never solve everything.  What we really most need is a cure.  I know that. But I still wish I could help with these obvious and important needs I see everyday.






Sunday, 21 June 2015

The News You Were Waiting For

Image: dog stretched out, asleep. Text: I found a joint that doesn't hurt! What a great day!My ankles don't hurt.

You were just desperately holding out, waiting for that news, weren't you? It's made your whole day just to know about it.

Well, it really has made my day.

Far too much of my life is influenced by fatigue and pain.  If I have an improvement in one or the other, it's worth celebrating.

Since my "new" now "ex" rheumatologist reduced my medications, I've had a lot of bad pain and fatigue days.  (I haven't got my appointment with my original rheumatologist yet.  Yes, I will do something about it soon.)

I've been looking for other ways to help control pain.  I have used tens machines for a while now.  I have one large one that plugs into the wall, and a smaller (less powerful) battery operated one I can use while I'm out.

I recently bought a heated massager that goes on the couch (I couldn't afford the actual massage chair.)  That helps a little - it's certainly a little better than just a hot water bottle.

Today, I tried my new foot spa for the first time.  Why soaking my feet in bubbly water for an hour makes a difference, I don't know.  What I do know is that my ankles stopped hurting, and were pain-free for the next two hours after the foot spa.

As I write, the pain is coming back, but that's OK.  I got two good hours of being able to play fetch with the dog, and do some washing and dishes, without the standing making my ankles scream in agony.

Two hours pain-free (well in that joint), with only an hour of preparation to make it happen?  I'll accept that as a good deal.

Now, I need to work out how to get my bad shoulder into the foot spa.



Do you have favourite methods for temporary pain relief?  Tell me about it in the comments.