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: http://www.lupus2017.org/registration-accommodation/register-here#.WKkWIxJ95-U


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: http://www.lupus2017.org/program-information/lupus-2017-patient-education-conference#.WKa0eRJ95-U


Thursday, 16 February 2017

How Do You Know You Have Side Effects from Prednisone?

lupus.cheezburger.com
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

lupus.cheezburger.com
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.)