Tuesday, 28 March 2017

The United Nations of Lupus

Just a quick check in because it's been a very long day.

This afternoon at Lupus 2017, I got to represent Lupus Association Queensland at a meeting of representative of lupus groups from around the world. We had people from Denmark (representing the peak body of European lupus groups), the Philippines, Indonesia, Trinidad and Tobago, Ghana, the USA, Canada, and of course here in Australia.

I have a photo to show you - but I'm having technical difficulties here in the hotel room.  I'll share it when I get back.

We heard about a goldmine of lupus resources, and some of the plans for World Lupus Day.  I'll update you on everything when I get back to Ipswich.

Tooorrow is the Patient Information Day, and you'll be hearing about that over th next days and weeks as well.

I hope all our lovely lupies in the north of Queensland are safe today.

Monday, 27 March 2017

I have to get up tomorrow

I have to get up early tomorrow.

I have to get up early enough to get to the railway station by 6am, so I can get to the airport by 8am to catch a plane to Melbourne for the Patient Education Conference at Lupus 2017.

Knowing my difficulty with waking up in the morning, I have created a foolproof plan.  (Well, hopefully a foolproof plan.)

I've set an alarm for 4.45am.  I made it "Hot Potatoes" by the Wiggles.  That should be something that will force me to get out of bed and shut it off.

As my daughter has to catch a train to work at the same time as I'm going, I've asked her to check that I'm awake as soon as she gets up as well.

Then, I'm going to drink copious amounts of coffee.

Tomorrow afternoon, there's a meeting of representatives of lupus support groups - so hopefully,  I'll have something interesting to report tomorrow night.  And on Wednesday is the Patient Education Conference, and I'll definitely have something worth while to tell you about then.

Thursday, it's back to the plane and trains to get home.

Sunday, 19 March 2017

Doing up a Zip at the Back of a Dress

One issue bothered me about my planned trip to Melbourne.

I'm going alone, so how am I going to dress myself? Specifically, since all my favourite dresses have zips up the back, how am I going to do up my own zip?

My first idea was to wear clothes that do up at the front, and I've started to make a new dress which buttons up the front.  However, I really don't have enough time, or energy, to make an entirely new wardrobe.

So I searched the internet, and found a number of gadgets it's possible to buy to do the job.  However, I also found, on a number of sites, a gadget so simple I could make it with materials in my arts and crafts studio. It's a safety pin on a long ribbon.

A safety pin with a ribbon helps do up a zip at the back
of a dress.

Tie the ribbon on the safety pin, then put the pin through the zip before putting the dress on.  Once the dress is on, throw the ribbon over your shoulder (if you're like me, throw it over your good shoulder) and pull the zip up.  Reach back and undo the safety pin.  (That's the hardest part - so use the biggest safety pin you can find  because it's quickest and easiest to undo.)

To undo the zip, reach behind your neck, put the safety pin through the zip, and then pull the ribbon down.

On a related note,  I've been having issues with the hook and eye at the top of zips lately.  They're too small and fiddly for me to do up, and they get caught in my hair. Fortunately for me, I have time to make my own clothes.  My solution to the problem, is to put a button and loop at the top of the zip instead of a hook and eye.  It's bigger, and easier for me to manage, and I use self-covered buttons so they don't stand out particularly.

A button with a loop is easier to manage
than a hook and eye at the top of a zip.

Thursday, 16 March 2017

Brain Fog in Action

This is what living with brain fog is like:

I cleaned my glasses. 

I didn't immediately put them on my face.

I don't know where I did put them.

I can't find my glasses.

I have to wear my spare glasses.

Why do I have spare glasses?

I bought glasses.

I lost them and couldn't find them.

I went back to the optometrist and bought another pair exactly the  same.

I got home and found the original pair.

Update: Found my missing glasses when I went to bed.  They were on the pillow.

A Busy Couple of Weeks

I just looked over my schedule for the next two weeks:

Tonight - I'm helping out my Toastmasters' club at the Mayor's speech contest. It's a public speaking contest for kids in grade 11.

Sunday - I'm preaching at church.

Monday - Toastmasters' Club meeting - I'm giving a speech on the Anthropocene.

Thursday - Mayor's speech contest.

Saturday - Toastmasters convention in Toowoomba - I'm in the humorous speech contest, with a description of life in an English village, based on what I've learned from watching Midsomer Murders.

Tuesday I fly to Melbourne.  After checking into the hotel, I'll rush to represent Lupus Association Queensland, at a meeting of leaders of lupus groups. I'll be late, because I didn't know about the meeting when I booked the flights.

Wednesday all day is the Lupus 2017 Patient Education Conference. If you're there say "hello", I like to meet my readers.  If you can't be there, I'll write about it over the next few weeks.

Thursday, fly back home.

Friday, I start writing stories from my Melbourne adventure.  There should be lots of interesting and hopefully useful information for all of you lovely lupies out there. I hope what I write will make sense, because I'm going to be one sore,  exhausted, and probably brain-fogged, lupie.

How did I manage to organise all of these things in such a short space of time?  Did I forget that I need to take things slowly and not over-do anything?  I think the answer is that I haven't been organising anything.  I haven't been thinking well enough to be organised. Stuff just happens to me lately.

So, if you don't hear from me much until I get back from Melbourne, you'll know why.

Note registrations for Lupus 2017 Patient Education Conference are closing soon.  If you're planning to go, it's time to book yourself in.

Tuesday, 7 March 2017

Yet Another "Cure"

Nothing, not pain, not fatigue, not anything lupus can throw at me, will ruin an otherwise good day for me faster than someone (not one of my doctors) offering me yet another "cure" for lupus.

As if I hadn't already been offered a hundred thousand other (insert your favourite expletive here) "cures" already!  Lupus has got to be one of the world's most "cured" incurable diseases!

I've heard them all; from the person who cured lupus by giving up coffee; to marijuana cures lupus and absolutely everything else; to lupus is my own fault and I either need to pray harder or have a better mental attitude; to any number of supplements that contain ingredients which are actually toxic in combination with lupus drugs; to all kinds of new age crystals and chants and tapping and touching; to lupus and other autoimmune diseases don't really exist; to eating special diets.  You name it, I've heard it.  If you have lupus, I'd be willing to bet you've heard more than your fair share of them, too. You might even have tried some of them (hopefully not any of the actually dangerous ones.)

I was offered another cure today, and almost hit someone I quite like.  I know this person was only trying to be helpful, but I just can't cope with this same (again, insert favourite expletive here) all over again.

So why do people do this?

Well, there are lots of reasons.

The first reason is just plain evil.  It's to exploit us.  There are people who look around, see a group of people fighting for our lives and see a great way to make money.  These are the people (often massive multinational companies, but also small solo operators) who sell things that you'll find listed, but not registered with the Therapeutic Goods Administration - or the equivalent in your country.

Things that are listed don't have to be proven to do anything, they just have to be proven to be basically harmless.  (But that doesn't take into account whether they are harmless in conjunction with whatever actual medication you are taking.)  Things registered with the TGA are the ones that have to have scientific evidence that the good they will do outweighs the potential harm of side effects. (See the related post listed below.)

The others are at least well-meaning.

There are the people who misunderstand science. Some people see early results of research, and think that's the whole story.  Research has begun on X-Y-Z and early results are positive.  People read this and think that's the solution, they have to tell everyone to do that and everything will be OK.   But one early study is not the whole of the story.  Science is done with trials and tests and experiments being repeated over and over again.  One study doesn't tell you whether the results will be consistent over time, or what problems might arise with further studies.  An experiment with rats might eventually lead to trials on humans - but an experiment just on rats doesn't guarantee exactly the same results in humans. Science takes time to test and retest, to be sure to get things right.  Jumping the gun and acting as if early indicators are the final result can lead to disaster. Oh, and when the early tests are on a component of (something easily accessible), that doesn't mean that that easily accessible thing can cure it.  There's a matter of dosage, and of whether that component works when it's in combination with all the other components of the same thing.

There are the people who want to believe every problem has a solution.  Human beings have trouble with the idea that some problems don't have easy solutions, or don't have solutions at all.  Some people will have such a great problem with it they will endeavour to come up with a very simple solution and then put their faith in it.  (It's not just with chronic illness - look at the over-simplified political solutions people try to come up with for extremely complex social and political problems.)

There are the people who "got better". Some people who have lupus, or appear to have lupus get better.  They assume that whatever they were doing when they got better has cured their lupus, and they are excited and want everyone else to get better too, and so try to encourage everyone to do the same thing.  Sometimes those people were misdiagnosed and didn't have lupus at all.  Sometimes they went into remission.  Lupus flares and goes into remission at random times, for unknown reasons.  Remission isn't a cure, it just means lupus is not active for now, and if we're lucky for a long time. (Some really lucky people have had lupus go into remission for 20 or more years.) Many of us work out over time some of the things we do that are guaranteed to cause a flare, but those are not the same for all of us. It stands to reason, then, that even if someone did find a way to force their lupus into remission, it wouldn't work for everyone.

So what do we do when we're told about a "cure"?  Today, I lost my temper.  I couldn't cope with this all over again. I've heard too many "cures" and been worn down too much by the snake oil merchants and well-meaning people who didn't even actually know what lupus was.

But you might be more patient when someone tells you about the cure they heard about or that worked for them.  You might even be interested in trying it.  I'd recommend discussing it with your doctor first, to check that whatever this is won't actually be dangerous.  If you really want to try it, and your doctor can assure you it won't make your lupus worse, or do some other terrible thing to you, go with it and good luck to you.

If you do try some "cure" and it doesn't work for you, don't blame yourself or think you did something wrong.  Lupus is an incredibly complex disease, which affects people differently.  In life, very complex problems very rarely have simple solutions.

Related Post: What AUST R and AUST L on your medications mean.
Related Post: I'm not going back

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?

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.)