Sunday, 26 January 2014

Lupus and Lies

Your friend has lupus.  You can see she's in pain and you say, "Are you OK?"

She says: "I'm fine."

Why is she lying to you? Why is she minimizing what's going on? Doesn't she trust you?

I know why I do it.  I asked on social media, and found that a number of other lupies have similar reasons to mine.

We do it for ourselves, because:

  • we don't want to always be talking about lupus.  It never goes away, but we still want to try to stop it from taking over our entire lives.
  • sometimes it actually feels worse when we acknowledge it. 
  • we just want to do and say "normal" things.
  • because if we start to talk about it maybe we'll just never stop and we'll be talking about pain, fatigue, memory loss, confusion, rashes, fear, drugs and all the rest of it forever.
  • because sometimes what's happening is something that we really can only talk about with someone who's been there (which is where lupus support groups are amazing.)
  • because sometimes we feel like being with someone and not talking about lupus is the only time we wake up from the nightmare that we're living in.
  • as one lovely lupie said in answer to my question; "I am afraid I will become lupus."
  • because if we admit we're in agony, you will say "well, let's go home", when what we really desperately want and need to do is stay out and have a little bit of fun (and yes, we know we'll pay for it later, sometimes it's worth the cost.)
  • we don't want to draw attention to ourselves.
  • we don't want to be the person who's always complaining.

We do it for you because:
  • we feel like all we ever do is complain to you. Sometimes, we want to be there for you, not have our friends and family feel like they always have to be our carers.
  • it's bad enough that we feel bad, making you feel bad about it won't make it any better.
  • because we're just so sick and tired of lupus that we're sure you must be too.

We do it to avoid (I have to stress, that I don't have much of this at all - very few people have judged me badly simply for being sick, I'm working on other lupies' experiences here):

  • being labelled as a hypochondriac, or told we're faking it.
  • being rejected.
  • being condemned by people who just can't understand how we can be well one day and horribly sick the next.
  • losing friends and being abandoned.
  • getting stuck in the "but it's not like it's anything serious like cancer, get over it" conversations that leave us trying to explain/justify having a chronic, life-threatening, incurable disease.
  • unsolicited, uninformed, and incredibly unhelpful advice.
  • people not believing in the symptoms they can't see.

When we say: "I'm fine" or "I'm OK", it usually means something like "I don't want how I'm feeling to be an issue right now, let's talk about something else." I know it sounds like we're talking in code... but really all language is a kind of code anyway.

I don't know about other lupies' family and friends, but mine have learned to decipher much of my code anyway.  For example, just about everyone I spend time with knows that when I say "Let's have a coffee", it actually means, "I'm exhausted. Coffee is an excuse to sit down while I recover, without admitting there's anything wrong."

Monday, 20 January 2014

Myth: Antibiotics Cause Lupus

I thought I'd heard just about every ridiculous myth out there.  But twice recently, I've heard one that's new to me. It's the myth that antibiotics cause lupus.

How do people come up with this theory?

Most people who have lupus have had antibiotics at some time in their lives.

That's like saying most people who have lupus have had baths some time in their lives, so baths cause lupus; or that most people who have lupus have seen a dog some time in their lives, therefore dogs cause lupus.

Most, probably all, of the whole population of Australia over the age of about two or three has had antibiotics at some time in their lives. If antibiotics caused lupus, then all Australians would have lupus.

Maybe the argument can be further put that people were sick when they started taking antibiotics - but the whole reason to start taking antibiotics is that one is sick.... and again, the vast majority of people who have taken them do not later have lupus.

Perhaps some people are diagnosed with lupus shortly after taking antibiotics - and it's conceivable that a lupus flare could have been misdiagnosed as a bacterial infection, and antibiotics given which then wouldn't have cured the flare, because they're only useful against bacterial infection.

It takes a while to diagnose lupus.  I lost track of the number of times I was tested for diabetes, Ross River fever and dengue fever over the years before I was finally diagnosed.  At some time in those years, I would also have had tonsillitis, sinusitis, chest infections, etc that would have all been treated with antibiotics. That doesn't mean that antibiotics caused my lupus, just that lupus wasn't the only thing happening with my body.

I understand the desire to find something to blame, some reason to explain what is happening.  But lupus is one of those mysteries, that we don't yet know the cause of. Researchers have found a gene, roquin, that is linked to lupus, but there is still a long way to go to say something is a definite cause of the disease.

Antibiotics are important in the treatment of bacterial infections.  Making someone with pneumonia, or a similar condition afraid to take the treatment that could save their lives will not help reduce the incidence of lupus or other autoimmune diseases.



Further reading about roquin:
http://www.sometimesitislupus.com/2013/05/towards-cure.html

Tuesday, 7 January 2014

What is the Immune System?

This article republished from The Conversation

Explainer: what is the immune system?

By Fabien B. Vincent, Monash University; Fabienne Mackay, Monash University, and Kim Murphy, Monash University


The immune system is an integral part of our body, keeping us safe from diseases – from the common cold to more severe illnesses such as cancer.

The immune system is often the reason we feel unwell when we have an infection, but is the reason we recover from that same infection. It can also malfunction, causing illness such as allergies and autoimmune diseases.

There are two interwoven components of the immune system: the innate and adaptive immune systems. Both are essential in preventing disease and function in very different ways.

Innate immune system

The first line of defence against an infection, the innate immune system consists of tissues such as skin and the lining of our gastrointestinal system. These are a physical barrier, which help to stop infectious pathogens from entering our body.

The innate immune system also has specialised cells that attack any pathogen that enters our body. Cells, including neutrophils, macrophages and dendritic cells, are all able to ingest pathogens and kill them inside the cell.

The innate immune system acts quickly; these cells are present throughout the body and can act within minutes to kill invading microbes and limit the damage that they can cause to the body.
But the innate immune system cannot always rid the body of pathogens. That’s where the second, more specialised, line of defence comes into play.

Adaptive immune system

The adaptive immune system is more evolved than the innate immune system, which responds the same way to all pathogens. The adaptive immune system uses different techniques to destroy different microbes.

There are three major cell types associated with the adaptive immune system: B cells, helper T cells and killer T cells.

B cells make antibodies. Antibodies are small chemicals that are able to bind to some microbes and prevent them entering cells, or bind to the toxins that some pathogens produce and neutralise their effect. Antibodies also “flag” microbes so innate cells can more easily destroy them.

Antibodies are also able to pass through the placenta and through breast milk and help protect babies from disease until their own immune system matures.


A rise in temperature is one of many immune system responses to infection. Flickr/sarabeephoto

Helper T cells, as the name implies, help other cells of the immune system. They allow innate cells to see and kill pathogens and help B cells make the right type of antibody to most appropriately deal with a pathogen.

Killer T cells secrete chemicals to directly kill virally infected cells. Viruses cannot reproduce outside of a cell, so they invade our cells. Antibodies cannot get inside the cell so instead, the killer T cells kill the whole cell, preventing the virus from reproducing. After the cell has been killed, cells of the innate immune system will come and clean up the debris.

The adaptive immune system can remember pathogens, so the second, or subsequent, exposure to the same pathogen results in a much quicker and stronger immune response. Often you won’t even know you’ve been exposed to a pathogen. This is why you generally only get diseases like the measles once and it’s the same system we exploit through vaccinations.

Vaccinations expose your immune system to parts of pathogens in a way that won’t make you sick, but will prime your immune system to recognise the pathogen. When you’re exposed to that same pathogen “for real”, the adaptive immune system reacts so quickly you won’t get sick.

Vaccines are just one way to improve your immune system. There is increasing evidence that a diet high in fibre will also influence your immune system. However the effect of vitamin supplements, such as Vitamin C or D, on the immune system is poorly understood.

When the immune system goes wrong

Sometimes the immune system responds inappropriately. Allergies, such as allergic rhinitis (hay fever), allergic conjunctivitis, allergic asthma or allergic eczema (also known as atopic dermatitis), are caused by an immune response to an invader that won’t cause disease.


Allergies are caused by a malfunction of the immune system.

Autoimmune diseases, such as lupus, multiple sclerosis and type 1 diabetes, occur when the immune system recognises cells of our own body as foreign and mounts an immune response against them. That is the irony – our anti-sickness system becoming the actual cause of sickness!

Understanding the immune system is crucial in medicine; new vaccines are being designed that will improve our immune response against pathogens, cancer treatments that use the immune system to destroy cancer cells are being developed, newer treatment of serious allergies and autoimmune diseases aim to manipulate and dampen specific aspects of the immune system without hindering our ability to respond to dangerous pathogens.

Everyday, our knowledge of the immune systems increases, opening even more doors to treatments and cures for a variety of diseases.

Fabienne Mackay receives funding from the National Health and Medical Research Council
Dr Kim Murphy does not work for, consult to, own shares in or receive funding from any company or organisation that would benefit from this article, and has no relevant affiliations.
Fabien B. Vincent does not work for, consult to, own shares in or receive funding from any company or organisation that would benefit from this article, and has no relevant affiliations.

The Conversation
This article was originally published at The Conversation. Read the original article.

Friday, 3 January 2014

Ikea or Death

There's a game on the internet called Ikea or Death. The idea is to guess which words are the names of Ikea products, and which are the names of death metal bands.

I have my own game, Ikea and Death.  I go Ikea, then I feel like death.

My daughter and son-in-law are getting ready to move, and will need some furniture in their new home that they've been able to do without up until now.

Some of my furniture really doesn't fit at all well in my flat, so I suggested that they take mine (which will suit them far better than it does me) and I would buy myself some new things.

That's how I came to be needing a Bygland and a Jomna. I also thought it would be worth getting a pack of Bevara, because you just never know when they'll come in useful. My daughter was looking for an Akerkulla, which would be very handy for when the baby plays on the floor, and a few other things for their new home.

A little note here - the staff at Ikea Logan were wonderful, and very helpful when two women (one with a walking stick) were trying to wrestle an uncooperative Jomna on to a trolley. Two lovely young men rescued us. Another was very helpful with telling us how to find to find the Bygland and how to arrange delivery.

No, we didn't force the baby to come with us for the endurance test.  She stayed with my son and son-in-law.

Five hours later (an hour of driving and four hours of Ikea-ing), I stumbled back into my flat.

I think I said something like: "I sleep now."

I woke up several hours later, still feeling utterly exhausted. Faced with the need to eat some dinner so I could take pills, I finished my block of Ikea chocolate and had a glass of lactose free milk.

My immediate plans now: go back to bed. After all, my Bygland arrives tomorrow, and I have to find t he energy to assemble it.


Wednesday, 1 January 2014

New Year, New Project

It's New Year's Day, and I've started something new.  I'm making lupus awareness ribbons.

The ribbons are orange, which is the lupus awareness colour here in Australia, and I'm adding purple butterflies. Much of the world uses purple as the lupus awareness colour.

Would you like one?

Just send me a stamped addressed envelope, and I'll post you one. (Email me for the address.)

Sorry to the overseas readers, this is only for people in Australia.

They should be great for World Lupus Day (10th May) when it comes around.