Monday, 25 May 2015

Having "That" Talk

Have you had "that" talk with your family?

I don't mean the one about where babies come from.

I mean the other one.  The one that people with chronic illnesses are forced to think about, but sometimes try to avoid talking about.

It's national Palliative Care Week, which is as good a reason as any to have the talk with your family and loved ones.

I'm not saying that just because you have lupus you need to think about how you want to handle your own death.  I'm saying that because you're a human being you need to think about how you want to handle your own death.  As well as thinking about it, you need to talk about it, specifically talk about it to the people who are most likely to be left making decisions when the time comes.

One of the things I noticed in hospital chaplaincy is that there is a lot of guilt around death, that just doesn't need to be there.

A family doesn't know whether Mum wanted the machines turned off or not.  Either they decide to turn it off, and feel guilty because their decision ended her life prematurely and she might not have wanted that; or they don't turn it off and feel guilty because they're unnecessarily prolonging her death and she might not have wanted that.  It's much easier for the family who knows exactly what the patient wants.

If you had the choice where would you die? In the hospital? In a dedicated hospice? At home with your loved ones?

Would you want to fight to the last?  Do you want to be resuscitated, even when there's no hope continuing to any quality of life? Or would you rather turn the machines off once recovery was considered impossible (or as close to impossible as can be measured?)

Are you burial with a big monument type of person, or a scattered ashes at the beach person?

What do you believe about life and death?

Me? As a human being? As someone with a particular theological perspective on life and death? As someone who has worked around people dying and their families? As a mother?

Here's my thoughts, such as they are.  For me, human life is a sacred gift.  But that doesn't mean it's necessary to prolong it unnecessarily. I'm OK with turning of the life support machines, and I'm OK with not being resuscitated when the time comes.  For me, extreme measures to keep a body alive unnecessarily is just prolonging death.  I'm not afraid of death (although I admit to being afraid of pain.)

I've always thought that, because of my belief in the value of human life, I would oppose any form euthanasia.  I've been rethinking that, in general, and even for myself. In general, people don't all believe the same things I do.  I can't impose my beliefs on them.  Perhaps there is a case for euthanasia, as long as there are strong safeguards in place to ensure the patient has chosen it freely.  I can see a situation where I might choose it - a point at which caring for me is putting an unreasonable strain on my family.  I couldn't cope with seeing my family not coping. I think God would understand, dying to protect someone else.

I'm not so worried about where I die, but would like any useable organs to be donated. I won't be using them any more; and my understanding of resurrection doesn't require all of my bits to be kept together. (I believe God isn't limited by our physical situation.) So for me, giving away organs to people who need them, is just finishing off this life by showing love to my neighbour, as I have tried to do throughout my life.

And I want to be cremated, and my ashes poured over a rose garden.  In fact, we're planting the roses now; so they'll be well-established when the time comes.

That's me.  Your thoughts might be totally different.  That's the good thing about thinking about this stuff before anyone has to make any decisions.

Talk with your family.  It might be uncomfortable, a bit awkward.  But, when the time comes to make the decisions, they will know what you want, which will save them a whole lot of unnecessary guilt on top of the necessary grief they will deal with.


Tuesday, 19 May 2015

Better, Safer, Lupus Drugs on the Way

Researchers at Australia's Monash University have made a breakthrough which could eventually lead to much better lupus drugs - which would attack lupus, not the entire immune system.

One in 1000 Australians is affected by lupus.  That's a lot of people on drugs which are aimed to switch off the immune system.  Immunosuppressant drugs mean people with lupus are more likely to catch infections, and have more trouble fighting infections once caught.

From the report (see reference below):

In healthy people, B cells attack diseases by producing antibodies that destroy invading pathogens. In lupus sufferers, B cells are misdirected to produce autoantibodies – cells that destroy the patient's own healthy tissue. Most commonly, lupus affects the skin and joints, but it can also strike the brain, kidneys and almost anywhere in the body.

In order to survive, B cells rely on a particular protein – called B cell Activating Factor of the TNF Family (BAFF), however too much BAFF causes lupus to develop. Each B cell carries three different kinds of receptor that detect BAFF in the blood stream. The receptors are known as BAFF-R, BCMA, and TACI. It is the TACI receptor that responds to excesses of BAFF, becoming overstimulated and triggering production of even stronger autoantibodies to attack healthy tissue.

Researchers found that if the TACI receptor is deleted, the B cells remain intact but lupus doesn't develop no matter how much BAFF is in the blood.

Dr (Will) Figgett (from Monash Immunology Department) said that while B cells are vital to a healthy immune system, the TACI receptor itself is not crucial - the cell can fight most diseases without it.

This breakthrough means researchers developing lupus drugs have a very specific target.  If future medications could turn off that receptor, without turning off the rest of the immune system, then if not a cure, we could have a treatment with far fewer side effects.


Donate to lupus research at Monash here:

Lupus Patients Suffer More Than We Say

I don't think anyone's going to be surprised about this.

GSK has released the results of a  "global" survey ("global" here meaning North America, Brazil and three European countries) which found patients only told their doctors about the symptoms that annoyed them most.  Things that patients responding to the survey said were real problems, doctors had seen as minor because patients under-reported.

It also found that carers thought lupus patients could do more than they actually could, and that carers did not realise the affect lupus had on confidence, social life, and many other areas.

And the blame for all of this? It's on us, the patients.  We're all too nice.  We try to protect our families and carers. We don't want to dump everything on our doctors.  Surprise, surprise. They don't know what we don't tell them.

So perhaps what we can learn from this piece of research which has told us what most of us already knew, is that we really need to be honest with our family, friends and carers; and we need to make a list of everything when we go to the doctor.

Reference: Survey find lupus patients suffer more than physicians perceive

Thursday, 14 May 2015

Wait? What?

Image: me with sensors for sleep study attached.
Yes, I have done a sleep study.
I don't know if you recall, but I had to make a choice about travelling to Brisbane regularly to see the rheumatologist who diagnosed my lupus and has been my specialist ever since, or to go to someone local.

I opted for the local specialist, rather than the train trip.

Right now, I'm wondering if I made the right choice.

On my first visit, the new rheumatologist looked at my blood test results, poked and prodded my sore spots and told me my lupus was inactive, but I had fibromyalgia.

This week, I had my second appointment with him.

He advised me I don't have lupus.

This would be good news. It would be really, really good news.  But for it to be true, a number of other specialists would have to be wrong, and I would need several other diagnoses to cover all the symptoms that one diagnosis currently covers.

So what's he basing this on? I think my blood tests.  Lupus doesn't always show up on blood tests.  When it's not flaring, or is controlled by medication, it's even less likely to show up.  So my blood test looks healthy. (Well, not quite.)

Last visit, this specialist started on weaning me off my drugs.  He started by reducing my methotrexate (for lupus), but also decided I didn't need my cholesterol drugs because my blood test showed my cholesterol was good (with the drugs). He also took me off sulfasalazine (for lupus, but specifically for my gut symptoms.)

This visit, he put me back on the cholesterol drugs.  Why?  Well, because even though my cholesterol looked fine on the blood test while I was taking them, it's terrible when I don't take them.

I reported that without sulfasalazine, I can't even get away with a tiny bit of gluten occasionally.  He said I am coeliac.  Actually, I've had several gastroenterologists over the years check and recheck that. I've had gastroscopies and colonoscopies.  You name it, I've had a camera look at it.  I'm not coeliac.  The new rheumatologist said they're probably wrong, and if they didn't take a biopsy, they wouldn't know.  (Biopsy of what? They didn't find anything abnormal to test.)

I also told him the results of the tests the gerontologist had done, that the only physical thing she'd found was vascular changes in my brain, which she said was "just normal lupus" and would be throughout my body. The new rheumatologist said she was also wrong, and that it would be migraine.

He suggested I probably had sleep apnea, which would explain my fatigue. I'm fat, I must snore. I do snore. I don't have sleep apnea.  Have I had a sleep study done?  Why yes I have. Well, fibromyalgia can cause fatigue as well.

(He didn't mention my frequently fluctuating liver function. Maybe he thinks I drink.  I don't.)

The next drug he wants to wean me off is prednisone. I'm on five milligrams a day. He wants to take it down to four a day for a month, then three a day for a month, and so on until I'm off it completely. I've tried this before.  A previous doctor helped me get from 25mg a day to 5mg a day.  When we tried to get lower than that, I got sick.  I got very, very sick.  I mentioned this to the new rheumatologist.  He said: "People with fibromyalgia feel fantastic on steroids, they don't like to come off them."

My photosensitivity, he didn't attribute to any particular cause, just noted I'd had it for a very long time.

My big fear is that the same thing will happen with the lupus drugs as happened with the cholesterol drugs: that he will take me off them until a blood test proves I need them.  For me, by the time lupus shows up in a blood test I'm in agony, unable to move, too exhausted to get out of bed, and pretty much helpless.  Worse than that, lupus, out of control, can damage any organ of the body. I had a hysterectomy because of unexplained, horrible symptoms.  Who knows if the next organ to go nuts might be one I actually need (like the liver that's frequently iffy anyway)?  Do I really want to take that risk just to prove a point?

I haven't taken my latest list of medication changes to the pharmacy.  Instead, I've made an appointment to see my GP.

The way I see it, I have three options:

  1. I continue with this rheumatologist and have to accept that every other specialist I have ever seen is wrong and that my one diagnosis should be replaced with several.
  2. I see a different, local, rheumatologist. One that other local lupies have said is good.
  3. I take the train trip to Brisbane every few months, and accept I'll need a week or so to recover.
If you're wondering, I'm really only seriously considering options 2 and 3.  I'm going to discuss it with my GP before I make my final decision.

Oh, now another minor point.  Comparing notes on experiences with rheumatologists, another lupie who tried this one and then changed, said this one doesn't actually believe in lupus. I hope that's not really true.  A rheumatologist who doesn't believe in lupus? That's as crazy as a climate scientist who doesn't believe in climate change.

Related Posts:
Not All In My Head
To Sleep, Perchance to Dream
Vampire Life

Monday, 11 May 2015

World Lupus Day Message From Julian Lennon

I received the following email overnight, and I know the writer would like it shared:

World Lupus Day

Link to Know Lupus Card Game

Dear Friend,

As the Global Ambassador for the Lupus Foundation of America, I am proud to join all of you to raise awareness today on World Lupus Day

In honour of the estimated 5 million people around the world living with lupus, I hope you will challenge your friends and family to KNOW LUPUS so we can create future with NO LUPUS

Play the new online KNOW LUPUS card game and then challenge 10 of your friends and family to beat your score. We have already reached our first milestone and raised $50,000 for lupus research! You can also further our impact by making your own donation to lupus research today.  

Together, we can solve the cruel mystery of lupus and end its devastating impact on millions of families.

Your friend, 
Julian Lennon
Lupus Foundation of America Global Ambassador 

Sunday, 10 May 2015

World Lupus Day

Image: Iris flower. Text: On World Lupus Day, let's thank the people who help us fight lupus every day.It's World Lupus Day.

(As well as being Mothers Day.)

I've been trying to think of appropriate ways to mark WLD.  Here's what I've come up with.

  1. Donate some money to lupus research. (There's a couple of links in the right-hand column of this blog.)
  2. Take some time to think about those who have failed in the battle against lupus this past year - you may not have known them personally, but may well have seen posts about them on social media.  
  3. Take time out to thank the family, friends, whoever it is who helps you day by day to fight against the wolf.
  4. Set some goals for things you plan to do to help care for your health for the coming year (eg, take a 10 minute walk each day, or a five minute walk each day, eat more vegetables, etc.)
  5. Post some information about lupus on social media, to help people understand about invisible illnesses.

Saturday, 9 May 2015

Top Lupus Blogs of 2015

lupus best blogs badge

You may have noticed the new badge on the right hand side of this blog. (There's a copy of it above, in case you missed it.)

For the third year in a row, Sometimes, it is Lupus made it to Healthline's list of best blogs.

I think it is the only Australian blog on the list.

According to the email they sent me, that's judged on quality, frequency of updates, and contribution to the community. 

So given the many ways lupies who read this blog also contribute, and form a community, thank you for making this something that was considered worthy of the list.

Oh, and if you haven't already, why not take a look at the other blogs listed?  

Friday, 1 May 2015

Ranting About Rip-Offs

I was reading yet another news article about the Belle Gibson scandal, and wondered what lessons there are in the whole mess for those of use who are sick, and who spend a lot of time online.

These are the things that jumped out at me:

  • Someone being pretty is not necessarily the same as them being believable. (Despite what the advertising industry may have spent our whole lives trying to condition us to believe.)
  • Not everything on the internet is trustworthy, no matter how well it is dressed up.
  • There's no shame in admitting to having been tricked by a fraud. Some frauds are so good they convince themselves.
  • If a "cure" or "treatment" seems miraculous, or too good to be true, it probably isn't true.
  • The internet is a great place to go to for support, to be able to see how others have handled the challenges we face, for a sense of community.  It's not a substitute for a doctor.
  • If anyone ever tells you to not follow your doctor's instructions (unless they're saying get a second opinion - which is appropriate any time you feel unsure); you should find alarm bells ringing.
  • If someone tells you "big pharma" or "big medicine" is only out to make money out of you, and they're trying to sell you a product (or multiple products, usually ridiculously expensive) of their own, alarm bells should be ringing.
  • Journalists can sometimes be taken in by a believable fraud, the same as everyone else.  Talk television and radio programs, and non-news magazines, are less likely to check their sources than serious (or "hard") news services.
  • A tiny bit of truth (or a little bit of preliminary research, taken out of context) can be stretched into a dangerous myth.
  • Human beings are mysterious, complex creatures.  We don't always know what motivates a person.  Not everyone's motives are good.
  • It can be hard enough assessing another person's trustworthiness when we meet them face to face - it's even harder on-line.
  • That prince in Nigeria isn't really going to send you a million dollars in diamonds; the unclaimed inheritance in England isn't really coming to you; and you cannot replace your medication with superfoods.  In fact, don't replace your medication with anything, unless you discuss it with a doctor first. 
  • A healthy balanced diet is a great thing for pretty much everyone, and should improve your overall health.  On its own, it won't cure cancer, or lupus or anything else.  Eat healthy food because it's good for you, not in expectation of a miracle.
  • Miracles may well happen. (In fact, in hospital chaplaincy, I'm sure I witnessed a few.)  But they're "miracles" precisely because they're not supposed to happen, and not expected to happen, and completely unpredictable.  You can't recreate a miracle.  If someone recovers against all odds, that doesn't mean that everyone who tries to copy them will have the same result.
  • When people are desperate enough, they will try anything (note, the "slapping therapy"stories in the references.) Be aware there's always someone out to make a quick buck from someone else's desperation. 
  • Now that I've digressed to the "slapping therapy"; I suspect that if those parents had gone to the doctor who was treating their son's diabetes and said: "Would starving our young child for three days and then slapping him to read his bruises help with his diabetes?"  I'm fairly sure the doctor would have explained the difference between a diabetes cure and child abuse. Ask your doctor, no matter how convinced you are from your own reading. 

I know there are many people who will feel hurt over Belle Gibson deceiving them, many confused, and quite a number outraged about the money not getting to charity, and the possibility that people may have died unnecessarily by following her recommendations.  But the issues this situation raises are much bigger than just one blogger running a scam (or suffering Munchausen's - the jury seems to be out).

The bigger questions are about things like who to trust, how much of what we read we can believe, how to recognise a fraud, and how we will use information we find.  The more time we spend on the internet, the more often we will have to face those questions with regards to what we're reading.