Sunday, 19 February 2017

I'll Be There. Will You?

Well, I've sorted out how I get to the Lupus 2017 Patient Education Conference, which is being run in
conjunction with the World Lupus Federation's International Conference on SLE.

It's happening in Melbourne on the 29th of March, this year.

I squeezed my financial budget to its last breath and managed to book flights and accommodation.  Next, I have to watch the other budget - the energy budget, to make sure I can handle the flights to Melbourne and back.  I've got another conference (not lupus-related) a couple of days earlier, so I am going to have to be very careful to not overdo things.

If you're wondering why I'm excited to go to this event, here is a copy of the agenda:

Preliminary Agenda

08:30-10:30 - Outcome measures and treatment targets in SLE
 (in Hall Melbourne 1)

(This session is part of the International Congress on SLE & Asian Congress on Autoimmunity. Individuals registered for the Lupus Patient Conference may attend this session, if desired.)

1.             Dafna Gladman – Measuring disease activity and damage in SLE

2.             Andrea Doria – Remission as a treatment target in SLE

3.             Mandana Nikpour – Low disease activity as a treatment target in SLE

10:30 – 11:00 – Coffee Break

11:00-12:30 - Patient Program Module 1: What we have learned about the lupus?

Chair: Barbara Ward

1.            Eric Morand – Causes, Pathways and Progression of Lupus 

2.            Brad Rovin – Challenge and triumph of kidney disease in SLE 

3.            Ian Bruce – Cardiovascular risk in SLE 

4.            Susan Walker – Pregnancy journey

12:30 – 13:30 Patient Program Module 2: The changing outlook for treatment of lupus

Chair: Sandra Navarra

(A light boxed lunch will be provided to all registered participants.)

1.             Joan Merrill – Current therapies and changing perspective on managing lupus 

2.             Richard Furie – Overview of new therapies in development for lupus 

13:30-15:00 Patient Program Module 3: Living and coping with lupus

Chair: Michelle Leech

This session features a discussion forum among a panel of lupus medical experts and people living with lupus.  The panel members will share stories and successful strategies for living and coping with lupus.  Bring your questions, and let our experts help you answer them.

A/Prof Davinder Singh-Grewal – Pediatric rheumatologist, Westmead Children's Hospital

Dr. Peter Gowdie – Pediatric rheumatologist and general pediatrician, Monash Children's Hospital

Dr. Kathy Nicholls – Nephrologist, Royal Melbourne Hospital

15:00-15:30 – Break

15:30 – 17:00 – Patient Program Module 4: Resources for patients with lupus and their families

Co-Chairs: Barbara Ward and Duane Peters

1.             Local resources for people with lupus featuring representatives of Australian groups

2.             Self-help resources – Dian Syarief, Syamsi Dhuha Foundation presenting on Exercise DVD and App

3.             Australian Lupus Group Collaboration – Discussion among representatives of Australian lupus about collaborative efforts to raise awareness of lupus and provide support services and advocacy to help individuals and families affected by lupus. 

4.             World Lupus Federation – Information about global efforts to address lupus around the world.

5.             Closing remarks – Duane Peters & Barbara Ward

It looks interesting, doesn't it?  I think it's going to be really informative. And it's going to be an adventure, because I'm going on an interstate trip totally unsupervised. There will be no-one making sure I take my pills, or checking that what I'm saying and doing makes sense.

So after the conference, I should have some great stories to tell you  on this blog:  either something really informative that I've learned at the conference, or some great adventure that brain fog has lead me on when no-one was checking up on me...

Unless I get lost in an airport or something, I will definitely be there.  Will you?

Conference details and registration:

Friday, 17 February 2017

Patient Education Conference - Melbourne

The World Lupus Federation is having it's 2017 conference here in Australia, and it includes a Patient Education Conference, which looks really good.

When I say "here" it's in Melbourne, I'm in Ipswich (just near Brisbane).  So that means flights and accommodation, and I am going to have to look hard to find the funds for those. Right now, I'm looking at bank accounts, under the mattress, etc, because this looks like a great opportunity, if I can get there.

On the other hand, registration for patients is only $50, (oops, looked again, that's US dollars, so a bit more than $50) and once registered, patients are allowed to attend all of the scientific conference as well.

If you happen to be closer to Melbourne than me, or have the funds available to get there,  here is the link for more information:

Thursday, 16 February 2017

How Do You Know You Have Side Effects from Prednisone?
There's some ways you can tell you have side effects of prednisone.

  1. You've become so fat your bra needs to be more highly engineered than the Sydney Harbour Bridge.
  2. You're slightly irritable, short of tolerance, and everyone around you has turned into a blithering idiot!
  3. Your ankles and feet have swollen to the point where they would look more appropriate being worn by an elephant.
  4. The buffalo hump you've developed at the base of the back of your neck makes a convenient pillow for naps when you're out.
  5. You alternate between forgetting to eat, and eating enough for the elephant whose feet you're wearing.
  6. Your body is getting fatter, but you have to take vitamin D or your bones will get thinner.
  7. That agonising headache is your brain screaming for help as it caves in under the pressure of all the fluid your body's retaining.
  8. You consider throwing your pills away, but you don't like pain or the likelihood of premature death, so you swallow the wretched things, and determine to keep going.

Tuesday, 7 February 2017

Passwords and Brain Fog
You know what it's like.

You go to an on-line account you use all the time, and instead of just logging you it, it asks for your password.

If you're thinking clearly, you might remember it. If you're suffering a bout of brain fog, you're probably stuck.

Some people get around the problem by using the same password for everything.  The problem with that is it's not very secure.  If someone gets hold of your password, they can get into all your accounts everywhere.

Here's another option, one that I learned from my tech-savvy son.

When you have to create a new password: think of a phrase, or a song or book title that you are going to remember.

For those of us with brain fog, I'd add to think of something that has a relationship, at least in your mind, with the thing the password is for. The link will help spark your memory.

So, say you need a new password for your Google accounts.

The word "Google" might make you think of a googley-eyed monster.

Take your phrase and remove any punctuation or spaces, so now you have googleyeyedmonster.

Good passwords have a capital letter or two in them.  So now capitalise the first letter of each word and you have: GoogleyEyedMonster.

Good passwords also have a number or two in them.  An easy way to do this is to replace some of the letters with numbers that look like the letters. Let's change each lower case "e" to "3".  Now we have Googl3yEy3dMonst3r.

Because the phrase is related to what you're using the password for, you are more likely to remember it, and it's quite a secure password because it's long, contains a combination of numbers and lower and uppercase letters, and is quite difficult for someone else to guess.

If you have an Instagram account, you might decide it's a File0fPh0t0s. You might think all the drama your friends share on Facebook is a bit like a Shakespearian play and have a password like AlasP00rY0rrik. Your bank account might make you think of an old ABBA song: Mon3yMon3yMon3y.

Of course, if you do all of that and still forget, write your passwords down.  Do not write them on scraps of paper you leave lying around, or in a notebook you keep with your phone in your handbag (because when your handbag gets stolen the phone and the passwords are enough to get someone into all your accounts.) Write them down in a password saving app on your phone or other device.  (You can get quite good apps that save passwords securely for free.) But make sure you remember the password or access number for the app.

And don't use Googl3yEy3dMonst3r as your Google and Gmail password.  That one's taken.  (Just kidding.)

Tuesday, 24 January 2017

Wisdom of the Ages
Early to bed, early to rise ... makes a lupie exhausted.

Hair today, gone tomorrow.  (Where is it? Oh, the brush, the drain, the couch, the bed, everywhere except my head.)

A stitch in time ... will probably get infected because of my stupid immune system.

Out of the frying pan, into the fire - oh no, it's just another fever.

It's always darkest ... when random pains wake me up, disoriented in the middle of the night.

A friend in need ... is another lupie wanting to know how to cope with the latest surprise symptom.

Hard work never killed anyone ... but it has been known to cause lupus flares.

It's a bitter pill to swallow ... and here are another dozen of them.

Love conquers all ... but, sadly, it can't cure lupus.

If you have your health, you have everything ... so what have I got?

Two's company, three's a ... lupus support group get together.

You have to count the cost ... to know if you can afford this trip to the pharmacy.

Good judgement never follows ... a bout of brain fog.

Lupies in glass houses ... should wear lots of sunscreen.

To understand lupies, you have to walk a mile ... in their sore joints.

Thursday, 19 January 2017

The signs of a flare ending: Lupie starts to do normal human things
Ways to tell I'm getting over a flare:

  • I make an appointment for 7pm, and think I might actually be awake for it.
  • I buy groceries, and get the actual things we wanted.
  • I have the energy to save money and buy meat from the wholesale butcher, and fruit and vegetables from the greengrocer, instead of just ordering all my fresh food from the supermarket.
  • I cook meals.
  • I actually have a choice of clean clothes.
  • The house becomes less like a disaster zone between visits from the cleaner.
  • I can actually stay awake for twelve to fourteen hours.
  • I write.
  • I sew.
  • I do all kinds of things I like to do.
  • I stop leaving hair everywhere (when flaring, I shed worse than my pets do.)
  • I see things that need to be done and do them, instead of collapsing in a heap crying.
  • I walk more and use the mobility scooter less.
  • I need less coffee to get through the day.
  • I use fewer pain killers, and don't really notice.
  • More music, less tv.
  • Things just get done. 

The danger of getting over a flare:
  • taking it for granted that I can do things.
  • trying to fit too much in, to do too much.
  • pushing past the limit and causing another flare.
Right now, I'm enjoying that I'm starting to be able to do more, and trying very hard to stop myself from doing anything that will cause me to get too sore/tired and start a fresh flare.

It makes a difference
You might have seen online a picture of a woman whose mobility scooter has tipped over, leaving her stuck against supermarket shelves.

Her story is here.

In short, she is a woman with a spinal condition that prevents her standing and walking for any length of time.  She was buying groceries for her family, and her scooter overturned while she was reaching for her husband's favourite soft drink.

Someone (a stranger) nearby took a photo and uploaded it to the internet to make fun of her.

I'd like to contrast that to the day my mobility scooter overturned.

It was year or so ago, at a theme park.  I had my little granddaughter on the scooter with me, and was following my daughter who was walking a little ahead of us.

She walked over a small bridge, and without thinking, I followed.  The bridge was too steep, and the scooter turned over.  I did what I could to protect the baby from being hurt as we went over.

As with the woman in the photo, it happened in a public place with strangers around.

What those strangers did was: help me up, check I was OK, picked up the scooter and checked it was OK, reassured me that the baby was fine. Nobody took photos.  I don't know those people who helped, but I'll always remember their actions with gratitude.

As frightening as my experience was, I'm sure it was much better than the experience of the lady in the picture.

That being the case, I'd like to make a recommendation to anyone who reads this.  When you see someone in trouble (whether they have a disability or not) please behave like a decent human being, not a total jerk. It makes a difference.


I am the woman in the picture and this is what it was like:

Monday, 26 December 2016

Boxing Day Blues
Lupie wakes to find gut is alternately adding logs to a fire in her oesophagus, and inflating her abdomen with bike tyre pump.

Lupie: Why the heartburn? And why does it feel like there's a pile of rocks in my stomach?

Gut: Someone forgot to take domperidone yesterday before eating.  Stomach didn't empty properly, and everything built up to cause a great case of heartburn.

Lupie: So why's my abdomen full of air?

Gut: Don't play dumb.  You know what you drank yesterday.

Lupie: I had two glasses of wine.  It was low alcohol wine.

Gut: It was sparkling wine.  Full of fizzy gas.  Just like all the soft drink you put away.  Where do you think the gas is going to go?

Lupie: Maybe I expected to burp, or pass gas in the other way normal people do.

Gut laughs maniacally.

Lupie: Maybe "expect" is too strong a word.  I hoped.

Gut: And you ate things you shouldn't.

Lupie:  I avoided anything with lactose and gluten.  I was very careful.

Gut: What did you notice about nuts.

Lupie: I'm not allergic to nuts.

Gut: Go on...

Lupie: But I did notice a strange feeling in my mouth when I ate walnuts, that I've never noticed before.

Gut:  Aha! Do you know what that means?

Lupie:  No.

Gut: You'll find out later today, you'll probably manage to get rid of all the gas then, too.

Lupie: Brain, where were you while this was happening?

Brain: Well, I always thought Sarah was Mr Percolate's bodyguard.

Lupie: Brain, you're still dreaming. Wake up.

Brain: Huh?

Lupie: What were you up to yesterday?

Brain: Yesterday? What did we do yesterday? I'm a bit foggy. Let me think. Umm.

Lupie: Well that explains that. I'd better at least take some domperidone now so I can have breakfast.

Feet: Don't you even think about standing.. ouch! ouch! ouch! Owwwwww for the love of God, we're too swollen to walk on!  Sit down, sit, sit sit!!!

Hips: Do not sit down. Do not under any circumstances do anything.

Knees: Don't make us bend, just don't, we can't. Stop it.

Brain: Who's in favour of going back to sleep.

Gut: Not me, I've got plans for today, big plans.

Eyes: We'd be crying now, but we're so dry the tears would burn.

Lupie: So I didn't really do too badly yesterday.  It feel like just another ordinary day today. Coffee to wake up brain, some medication to calm everyone else down, and there's nothing I can't deal with.

Sunday, 25 December 2016

Merry Christmas
Merry Christmas lovely lupies.

Or Happy Hannukah, if that's what you celebrate.

Or have a wonderful day whatever you are or are not celebrating.

I hope you all have a low-pain, low-fatigue day whatever and however you are celebrating.

Let's all try not to over-do things.

Saturday, 17 December 2016

Lupie's Morning Routine

Wake up.  I'm feeling terrible. What to do now?

Analysis. Why do I feel bad?

  1. My eyes are sore dry, and feel like they've been rubbed down with sandpaper.
  2. My mouth's also dry.
  3. My feet and legs are sore and swollen, and it hurts to stand.
  4. Random joints hurt.
  5. Exhaustion.  I feel like I haven't slept in a month.
  6. Overheated.  
  7. Gut feels uncomfortable.
Plan.  What can I do about each of these things?
  1. Dry eyes: Use my eye gel.
  2. Dry mouth:  Rinse with dry mouth mouthwash.
  3. Feet and legs:  Try the tens machine.  If that fails take a fluid tablet.
  4. Joint pain: Tens machine again, if that fails, anti-inflammatory gel on the problem joints, failing that, pain pill.
  5. Exhaustion: Coffee.  Lots of strong coffee, and my vitamin B12 supplement.
  6. Overheated: Turn on air conditioner, and put hair up in ponytail to get it off the back of my neck.
  7. Gut: Take my fibre supplement.
Action. What I do.
  1. Put in eye gel.
  2. Wash mouth with dry mouth mouthwash.
  3. Have coffee and try to remember what else I planned to do.
  4. Go back to bed for another hour because I feel horrible.