Wednesday, 22 July 2015

Howling At The Moon

Painting of tree silhouetted against the full moon.
"Moon" by Iris Carden 2015.
For the past couple of weeks, I've been sleeping about 14 hours a night.  I've still been so tired, I've still napped through the day.

I've had no energy while I've been awake, and have managed to watch (read 'snooze in front of') nine seasons of Supernatural.  That's how many are available on Netflix here in Australia.

In my brief waking moments, it's occurred to me that life with lupus is a bit like an episode of Supernatural.

There's definitely something sinister going on.  There's a big, bad wolf loose, and it's not satisfied with just howling at the moon.

The wolf might be just injuring most of us, but it's also killing lupies. It's vicious, unpredictable, and not a part of most people's normal experience.

Image: Sam and Dean from Supernatural. Text "Not silver, you need methotrexate bullets for this big bad wolf."

There's no miracle cure.  In fact, no non-miraculous cure.

Image: Castiel and Dean from Supernatural.  Text: "Can you cure lupus or not?"

We use medication to ease the effects, but there's no guaranteed way to prevent the wolf attacking at will.

Image: Dean from Supernatural talking on phone. Text: "Lupus? Try a protective circle of prednisone."

We have some symptoms that just don't make sense to anyone.

Image: Sam and Dean from Superatural.  Text: "You're saying they're allergic to sunlight, but they're not vampires?"

And sometimes the symptoms can affect how we feel about ourselves and how we present ourselves to others, as well as our physical health.

Image: Sam and Dean from Supernatural looking horrified.  Text: Oh! That rash is awful!
Unlike Supernatural,  a couple of guys armed with silver bullets, rock salt and holy water won't come to rescue us.  We count on people like our doctors.

Image: Sam? from Supernatural summoning crossroads demon.  Text: I'd sell my soul for a good rheumatologist.

And we rely for support on other lupies, people we know have been to hell and back, and are still working on being their own heroes, and ours.

Image. Sam and Lucifer from Supernatural.  Text: Lupus? Welcome to Hell.
Many of us find our best source of strength in our families and our friends.

image: Sam, Dean, Ellen and Jo from Supernatural.  Text: I'm glad we're not doing this alone.

But when it comes down to it, we frequently have to stand up to the wolf ourselves, and be our own heroes.

I guess this post is what happens when I spend the best part of a fortnight sleeping in front of the same television show. It probably could have been worse (though I'm not sure how.)  Anyway, it's 7.30pm and I'm exhausted.  Good night world.

Thursday, 25 June 2015

Money, Money, Money

Image: coins and pills. text: Chronic illness lesson: A diagnosis doesn't mean you're automatically getting better. It means you're going to spend a lot of money on things you wish you didn't need.

My little granddaughter has just discovered money.

She just got a little purse, and her mother and I searched our own purses for 50c pieces (being big enough that a toddler can't swallow them) and found seven of them for her.

For days, she's been getting out her purse and asking for people to count her "monies" for her.

I'm fairly sure no-one else could feel as rich with $3.50 as she does.

I've been thinking a bit about money these days, money and how it relates to chronic illness.

It's not just how it affects me, but others with chronic illness as well.

Being sick costs money.  Even here in Australia, where we have Medicare, the Pharmaceutical Benefits Scheme and Health Care Cards provided by the government as safety nets for people with lower incomes, being sick is still expensive.   The more medications someone's on, the worse it is.

A lot of our disposable income gets disposed into the healthcare industry.  That often leaves people short in other areas.

At the same time, many of us can't work, or can only work part-time, so incomes are low.

One of the fastest growing groups of homeless in Australia is middle-aged women, and a number are homeless partly because of the cost of managing chronic illness.  (There's also an issue with rents being unmanageable.)

Lately, I've been more and more aware of things I wish I had money for.  There's a couple of modifications I'd make to my home to make things easier.  But there's also lots of other things, I've noticed.

You see, my network of friends, and social media friends, includes an increasing number of people with chronic illnesses.

I know some people who can't afford their medications, and it breaks my heart I don't have money to help out.

Someone else I know urgently needs some home repairs.

Others are struggling to raise young children on their own, while coping with illness.

These things aren't my problem. Not really.  And none of these people have asked for my help. But now that I at last have what I actually need (if not everything I would like to have), it really bothers me how many other people still don't have that much.

Money could never solve everything.  What we really most need is a cure.  I know that. But I still wish I could help with these obvious and important needs I see everyday.

Sunday, 21 June 2015

The News You Were Waiting For

Image: dog stretched out, asleep. Text: I found a joint that doesn't hurt! What a great day!My ankles don't hurt.

You were just desperately holding out, waiting for that news, weren't you? It's made your whole day just to know about it.

Well, it really has made my day.

Far too much of my life is influenced by fatigue and pain.  If I have an improvement in one or the other, it's worth celebrating.

Since my "new" now "ex" rheumatologist reduced my medications, I've had a lot of bad pain and fatigue days.  (I haven't got my appointment with my original rheumatologist yet.  Yes, I will do something about it soon.)

I've been looking for other ways to help control pain.  I have used tens machines for a while now.  I have one large one that plugs into the wall, and a smaller (less powerful) battery operated one I can use while I'm out.

I recently bought a heated massager that goes on the couch (I couldn't afford the actual massage chair.)  That helps a little - it's certainly a little better than just a hot water bottle.

Today, I tried my new foot spa for the first time.  Why soaking my feet in bubbly water for an hour makes a difference, I don't know.  What I do know is that my ankles stopped hurting, and were pain-free for the next two hours after the foot spa.

As I write, the pain is coming back, but that's OK.  I got two good hours of being able to play fetch with the dog, and do some washing and dishes, without the standing making my ankles scream in agony.

Two hours pain-free (well in that joint), with only an hour of preparation to make it happen?  I'll accept that as a good deal.

Now, I need to work out how to get my bad shoulder into the foot spa.

Do you have favourite methods for temporary pain relief?  Tell me about it in the comments.

Tuesday, 16 June 2015

Review: League of Mortals, by Duncan Cross

Wesley Peary is a normal high-schooler, with the normal high school issues: school, part-time job,
friends, girlfriends, one teacher with an irrational hatred for him.

And one day, at his birthday pool party, he suffers from diarrhoea, and suddenly, he's thrown into a world that is definitely not normal for a teenager.

Suddenly, in addition to the normal teenager things, he has to face chronic illness, doctors (good, bad, and downright abusive), a girl with Munchausen's, changing diagnoses, fatigue, life and death.

Duncan Cross draws on his own experience of life with chronic illness in this semi-biographical work of fiction (or is it a semi-fictional autobiography?) He opens up the world of Wesley Peary, a normal teenager, thrust into an abnormal world.

Through Wesley's story, Duncan Cross highlights major issues facing people with chronic illness: the varying competencies of doctors, the desire to do "normal" things, the cost of medical treatment and the situation of people who can't pay, the choice to end a life prematurely.

It's a highly believable, highly readable story, with some pain, some humour, and a lot of poo.

People with chronic illnesses will recognise parts of ourselves in Wesley.  People who don't have chronic illnesses may get a window to our world through him.

I loved this book. I had trouble putting it down - in the end I read it in two sessions.  It would have been one, but I needed to sleep.  I saw a lot of myself in Wesley, someone just trying to live their life, and being constantly interrupted by a body that just won't do what it's supposed to do.

For more about Duncan Cross, visit his blog: Duncan Cross.

Have you read this book?  Tell us what you think of it in the comments below.

Saturday, 13 June 2015


Meeting a red panda.
Photo credit:
Queensland Zoo, Big Pineapple.
I've just been on a week's holiday with my daughter and granddaughter.

For a week, I've pushed my limits, but I've done it carefully.

I've walked a lot, but I've also taken rest breaks.  I've been out to all the touristy spots on the Sunshine Coast (or a number of them), but I've also spent time soaking in a warm spa at the resort.

I've been to bed relatively early each night. (Sharing a room with a toddler, means everyone's bed time is toddler bed time.) That has helped with my fatigue levels.

I've managed my medication, taking anti-inflammatory medication each morning, before I started the walking.

I've been careful to stay in the shade most of the time; and my daughter did all the driving.

I also took a tens machine for the aches and pains.

The big thing was that I was with someone who understands there are times I just need to stop for a rest. (As much as stopping for a rest is possible with an 18 month old.) And my daughter also understands that if I'm walking anywhere, it's going to take me significantly longer than most people, and waiting for me will just be a part of the deal.

A couple of times I was too stiff and sore to manage putting on my own shoes - but that can happen at home from time to time as well.

All in all, it was a great week.

I probably couldn't keep up that pace for more than a week or so.  But that's OK, a holiday's an exception.

Now I'm home, I'm going to rest a bit before I finish unpacking.

I know lupus has "dis-abled" me to some extent.  But with a bit of care and forethought, it's quite amazing what I can be able to do.

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