Saturday, 12 April 2014


Things I hate about gastroenteritis:

  • If anyone I know has it, no matter how careful I am with hygiene, I will get it. It doesn't matter if I've actually been with the person who has it, or just talked to them on the phone or by text, I will still contract it. My immune system is so mixed up it actively seeks out bugs that are outside my body, runs out to greet them and invites them in for a party. The immunosuppressant drugs I have to take are great for bug parties.
  • It always hits in the middle of the night, so I wake up in the dark, and disoriented. At that point, my joints announce, "we decide if you can stand up and the conditions under which you will do so." The negotiations are short-circuited and I have to run, just hoping knees. hips and ankles won't give out completely, no matter how much they are object. 
  • Sitting in the bathroom for long enough, and in the right position to become convinced that my legs have become possessed by the ghost of John Howard's eyebrows, and knowing that I don't have the physical or mental ability to use a razor at this stage, and probably not for the next 24 hours or more. (For those overseas, John Howard is a former Prime Minister whose eyebrows have a life of their own, and are more overgrown than any old growth forest.)
  • The need to learn skills like sitting on the loo and putting my head in the shower simultaneously. (Where my bucket went is anyone's guess. I'm sure it will turn up tomorrow, or maybe next week, or just after I buy a new one.)
  • I threw out a perfectly good shower mat rather than washing it. My bathroom smells like bleach, because I didn't have the energy to clean properly, so I just threw bleach everywhere to kill the germs.
  • Instead of using all the food I've eaten for the past six months, my body's been keeping it in storage somewhere (probably my thighs) for just this occasion.
  • Despite the ballistic expulsion of about 12,000 kilograms from my gut, I haven't lost any weight.
Well, that was my night.  If anyone needs me this morning, I'll be back in bed... or the bathroom.

Wednesday, 9 April 2014


For those wondering about my liver function results from the previous post, I've been to the GP, and the second blood test was better than the first, but still not quite right, so I have to go do it all again.

Saturday, 22 March 2014

I'm Still Here

I haven't been online much lately, so I haven't posted much.

What's been going on?

Well, as you would have seen from my previous post, trialing going without sulfasalazine effectively caused a flare. And it's taken a while back on the drug to start feeling even slightly better.

On top of that, I think I've had a cold.  It's hard to tell. I've been hot and cold, sweating and complaining about the heat when the air conditioner was on maximum and my son said it was too cold. I've been tired and sore.  All of those symptoms could just be my little lupus flare.  But my usual rhinitis has been worse, and that's what makes me think I may have had (possibly still have) a cold.

Worth the effort -
Johanna discovers Grandma's slippers.
So, for a while, I've been alternating sleeping on the couch with lying on the couch watching tacky detective shows on TV, and the occasional bit of babysitting, just to remind myself there is something in my life that is definitely worth the effort of waking up in the morning.

I have had one other little adventure (or, more accurately, shock.)

I went for my regular three-monthly blood test.

When I was in school, and even in my tertiary studies, I always had a phobia about tests.  I'd know my subject inside out, and I'd do brilliantly on assignments, in practical work or oral presentations, but tests would freak me out. Often, my mind would be full of information before I went into the exam room, and seem to be completely empty as soon as I looked at the question paper.

Some of that anxiety has carried through to other kinds of tests, such as blood tests.  I know I can't study for the blood test, and it's not really a matter of passing or failing, but a lot can count on a blood test.

Over the years I've become used to going, having the blood taken, and hearing in a subsequent regular visit to the doctor that my blood tests were fine, or that I needed a bit more vitamin D, or some other minor, easily-fixed matter. There was never anything that couldn't, or shouldn't, wait for the next visit to the doctor.

That's why I was taken by surprise the morning after blood test when I had a phone call from Dr K (my rheumatologist).  Now, let me make clear just how unnatural this situation is.  In the seven years I have been regularly seeing Dr K, he has never spoken to me on the phone. Once or twice he may have had a receptionist call me with a message, but he's never picked up the telephone, dialed my number, and spoken to me personally.

I must have sounded confused, because after he said his name, he went on to explain who he was. (Or maybe he just doesn't trust my cognitive ability to make that link any more.)

He had called because he wasn't happy with my blood test. Specifically he had some concerns about my liver function test results.

My mind raced.  I'd always been afraid of failing a test. What would happen next? Would there be a make-up test so I could try to do better? Was it just an absolute failure and there'd be some horrible consequence? Was my medication affecting my liver? Was lupus affecting my liver?

As it turns out, there was a make-up test. He told me to go back and do it in a week's time.

I did.  That was days ago. He hasn't called again.  I hope that means I passed.

Tuesday, 11 March 2014

Finding Out The Hard Way

Overnight, my ankles swelled so much that
the elastic supports that I use to help ease
the pain, were slicing into me.
About a month ago Dr K, my rheumatologist, asked me to stop taking sulfasalazine for a month to see if it was still working.

Well, I definitely found out.

I've found myself in a flare.

To start with my usual aches and pains became more pronounced than usual.

My ankles have been hurting so much that the only way I could keep the pain under control enough to sleep was to put elastic joint supports on them.... but then my feet and ankles have swelled so much that in one night supports that were comfortable (and comforting) at bedtime, were cutting in to me the next morning. Actually, truth be told, by morning my ankle didn't look much like an ankle at all - there was no shaping at all, my leg just seemed to end in a foot with nothing in between.

The pains grew worse, and more diverse until the point when even the small joints in my fingers and toes were hurting.

My fatigue reached a point where I was sleeping all day. I was also nauseous, and had a couple of nights of alternating between sweats and chills. I was guzzling coffee and binge eating to try to get the energy to stay awake for a couple of hours each day.

So, over all, I guessed that, yes, the sulfasalazine had been doing something after all.

I've started taking it again.

After a few days back on it, I'm a little less tired, and a little less sore, but I've got some way to go to get back to where I was before stopping the drug.

My drug cocktail is based on trial and error.  Some of those trials are pretty awful, and the errors I'd rather avoid. But this is life with lupus.

Want to join in the conversation?
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Monday, 3 March 2014

Well, Bloggone It!

Why do I blog about lupus? Isn't just living with it bad enough? Why write about it as well?

(Yes, this is a meta-post, I'm blogging about blogging.)

When I was diagnosed with lupus all I knew about it was what I'd learned from watching House on tv.

Despite what you might think from House, however,  lupus is quite common.  Knowing about it isn't so common.

So I set out to learn about my condition, then decided to find a way to share what I was learning to help   raise awareness of a disease that although common, is not very well understood by the community.

What the blog has developed into, however, is something different.

I found that the people reading it weren't generally people who were wanting to find out something about a condition they'd just heard of.  Most of my readers were people with lupus, or a similar chronic condition, or people who had friends and family members with lupus.

Readers started saying things like "you say what I was trying to say."

That's when I took Sometimes, it is Lupus into other social media as well as the blog, as a chance to interact more with readers.

I realized that what was really needed was a chance for lupies to know they were not alone, and to be able to express what life was like for them.

Now the blog is still about my life with lupus, but it has an added dimension.  Through social media, I'm also  listening to other lupies, and trying to bring their experience into the blog as well.

Now, Sometimes, it is Lupus, isn't just there trying to tell the healthy population what lupus is, and it isn't just me saying "this is what this disease is doing to me", although it still does both of those things.  It's also an opportunity to give a voice, if only a small one, to a community of people who might otherwise feel isolated and alone.

Want to join in the conversation?
Find Sometimes, it is Lupus on FacebookTwitter, and Google+.

This post written as part of a blog carnival hosted by Restoring Quality of Life. If you'd like to see how other bloggers responded to the same topic, the blog carnival is here.

It's The Worst

Lupus bites!

It just does.

I hate all of it: the pain, the fatigue, the limitations on what I can do, the constantly swallowing pills, the risk that any organ could suddenly fail, the avoiding sunlight, etc, etc, etc.....

But for me, the absolute worst, the one thing that just tops everything else for horror, is that my brain doesn't work the way it should.

I've always considered my brain to be the best part of me. I'm intelligent, I'm creative, I've always had a great memory.

But now....

Now, I do and say stupid things. I was holding the baby the other day, talking to her, when my daughter interrupted: "Ah Mum, that's not me, that's Johanna."  I knew that, right? I know that my daughter is 22, and the four month old is her daughter. Well, I do right at this moment.  At that exact moment I was a little lost.

I hate not being able to lead worship - and worse I hate that the last time I did, the sermon I'd written suddenly didn't make sense and the words all seemed to be gobblydegook and I didn't know what to do about it.

I'm not particularly keen on hallucinations, either.  Seeing a strange woman without a face in my flat was disconcerting, to say the least.

Writing is just a part of who I am, and it has been since I started writing stories as a child. But now, half the time I can't spell, have trouble with punctuation, and write ungrammatical sentences.

I have trouble organizing my thoughts, and even more trouble organizing myself to do anything.

So that's the absolute worst for me.... messing with my body was bad enough, but once lupus started messing with my brain, things just became far too frightening.

But that's just my experience.

The one thing that's consistent with lupus is its utter inconsistency, so I asked some lovely lupies on social media what was worst about lupus in their experience.

For lots of people, the pain and fatigue were the worst thing.

For others, it was things they had lost: their jobs and income, their homes, their independence, the ability to do things they used to love, even some friendships.

For some the worst is the cost of managing lupus, some with insufficient health insurance or no health insurance at all.

For some the worst was the unpredictability of lupus - of not being able to plan because there's no way of knowing in advance what will be a good day and what will be a bad day.

For lupie mums, feeling that they're not able to care for their children the way they want to, even being in too much pain sometimes to hold their own babies, is the worst.

Some lupies have other health issues as well, throw in cancer or something equally horrible, on top of the horribleness of lupus and you have a nightmare Stephen King couldn't have scripted.

For some lupies, the vampire life of avoiding the sunlight is a huge sacrifice, especially if they have children who want to do things outside.

Some have found the mental health issues that are often a part of lupus - anxiety and depression - are the worst thing.

For a number of people, the worst thing was becoming isolated.

One lupie who answered, said the worst was when she wasn't diagnosed and didn't know what was happening to her.  Knowing what was wrong and beginning treatment had come as a huge relief.

Some of the people who responded were friends of lupies, who found the worst things were:when their friend forgot they'd been there for them; when they had to watch their friend go through the pain and fatigue; or when they lost a friend to lupus.

As I said at the beginning, lupus bites.

With bodies that don't bend where they used to, pain in places we'd never known we had places, fatigue that makes Sleeping Beauty's 100 year nap seem reasonable, the uncertainty of whether or not we'll be able to do tomorrow what we can do today..... there's a lot that's bad.  But the absolute worst? That's different for all of us. And it's different on different days. Because that's how lupus is. The only thing that's consistent about it is its utter inconsistency.

Want to join in the conversation?
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Sunday, 9 February 2014

Ain't No Cure For The Summertime Blues

Patients For A Moment Blog Carnival this month asks how we patient bloggers are coping with the cold winter.  The person asking is lovely Leslie at Getting Closer to Myself wrote the topic, and she is living in that part of the planet that is reportedly cold at the moment.

As for me, I'm here in Brisbane, about 450km south of the Tropic of Capricorn.  Here, we're in the last month of a long hot summer. I'm having trouble remembering winter. We've had a few record-breaking heatwaves in the past couple of months, and looking at the news, it seems the southern states are all on fire. (There's ten bushfires in Victoria and one in South Australia at the moment. There's been lots more throughout the summer.)

Despite the searing temperatures, this summer has been far less traumatic for me than most.

Normally the summer heat saps my energy and I struggle to even get out of bed. And, to be truthful, that is how I started this summer as well.

This year, however, things changed. This year I said to the world's most awesome landlady, "I think I can afford to get an air conditioner, do you mind if I get one installed in my flat?"

She said she and her husband would get me one.

Summer started miserable, with me seeking shelter in libraries and shopping centers and anywhere else I could avoid the heat. Now, I can stay inside at home through the worst of the day.

Some days have been so bad that the air conditioner has struggled, but most of the time it has made a world of difference. It helped when I learned to turn the air conditioner on before the day got too hot - it's much better at keeping the flat cool than it is at cooling it down after it gets hot. This is my first bearable summer in a very long time.

So despite the horror of summer heat, I'm feeling pretty well, much better than I normally would. That might change when I get my next electricity bill, however. (Next on the agenda: solar power.)

Find how other health bloggers responded to this month's PFAM topic at Getting Closer to Myself.

Is It Working?

Dr K (my rheumatologist) asked me: "How's the sulfasalazine going? Is it helping?"

Is the sulfasalazine working?
"How do I tell?" I asked. "When I'm taking so many drugs, I don't know which one is doing what."

Sulfasalazine is the most recent drug he has given me. It certainly made a difference to start with, but I can't tell if it's still doing anything that the rest of the drugs wouldn't do.

Dr K's solution?

I have to stop taking sulfasalazine for a month. If I get sick, I should start it again and see if it makes a difference.  If I don't get sick, that's one drug I can take out of my cocktail.

Like most drugs for lupus, sulfasalazine was developed to treat something completely different. In this case the completely different thing was Crohn's disease.  Dr K had thought it would help with my gut symptoms as well as my other lupus symptoms. He'd initially suggested that if it worked really well, I might be able to eat gluten and lactose again.

It never worked quite that well.  I still had reflux when I ate or drank anything with lactose, and still had irritable bowel whenever I ate gluten... so that didn't help a lot.  But it had initially seemed to help a bit with the general aches and pains and fatigue.

I've only stopped taking it for a couple of days - so far I haven't really noticed any difference. So maybe the rest of the drugs in my cocktail are enough without it.

But it leaves me with the question - is there any way to know which drugs are working and which are just surplus to need, without taking the risk of stopping a drug that might turn out to be very important indeed? Apparently, Dr K couldn't think of any.

So much of lupus treatment seems to be trial and error, with a treatment that makes a huge difference for one person either not helping or making things worse for another person. It's one of the many frustrations of living with an unpredictable and frustrating disease.

Saturday, 8 February 2014

Fat or Fast

I had my regular visit to the rheumatologist this week.

Dr K works in the city, which means driving to the station, a train to the city, and a 20 minute walk from the station to Dr K's surgery.  (OK, it's probably a five minute walk for most people, but this is me.)

So he immediately noticed that I looked unwell.... I explained I always look unwell after a 20 minute walk, but I persist in believing that little bits of exercise must be good for me, even if I can't go to a gym for a full work-out any more. For once he didn't bother to give me the "with lupus, if you use it you'll lose it" speech.

Instead he gave me the "you need to lose weight" speech. He added a horrible warning this time - my arthritis in my ankles may be from lupus, but unless I lose weight, I'll also have osteo arthritis, which isn't ever going to go into remission.

Now, I'm fully aware that I'm well and truly over my healthy weight. I know it's completely necessary to lose the excess.

I also know that Dr K has me taking prednisone which puts on weight just by existing, but which also gives me an uncontrollable appetite.  Every time I try to diet, I can stick to a program for a couple of days but by the end of the week, the ravenous prednisone appetite gets to the point that there's no way I can possibly suppress it.  Add to that, that Dr K stopped me going to the gym, and absolutely insisted he would not give me enough pain relief to be able to do any strenuous exercise (the "use it and you'll lose it" speech), I'm well and truly sunk.

So here I am stuck, with willpower that's just not strong enough to beat prednisone and a body that can't and won't exercise more than a very slow walk, or a hydrotherapy workout.

The next day, I told my problems to my GP (for those of you overseas, a GP is a General Practitioner, a family doctor).  I asked if there are any weight loss pills that actually work. Her answer was simple - no there aren't.  

I wanted to know, what else I could do (apart from developing a weight loss tablet that doesn't work, advertising it as a miracle drug, and getting rich).

Her answer was to try a different kind of weight loss program. She recommended the book The Fast Diet by Michael Mosely. Dr Mosely looked at scientific evidence for fasting on alternate days providing lots of health benefits - not just weight loss, but reduced inflammation, better blood pressure and cholesterol, and number of other benefits.  He then developed the idea of a fast on two non-consecutive days a week, on the basis that it is easier than alternate days, and people would be more likely to stick to it.

By self-testing, he found he lost weight by sticking to a fast on two non-consecutive days a week, and found that his health improved as well. 

On a fast day, women eat no more than 500 calories (if you're like me and grew up with kilojoules, that's 2100kj), men eat no more than 600 calories (2520kj).

Do I really believe that a fast on two days a week will do everything for me that the alternate day fasting, which scientists actually researched, would do? I'm skeptical. But on the other hand, if on the non-fasting days, I don't eat more than usual to compensate, then in any given week, I have surely eaten at least 5000 to 6000 kj less than I'd normally have eaten. That's a whole day's food less than usual, so I should theoretically lose weight.  And it means I don't have to struggle with maintaining willpower day after day - I just have a "first day of the diet" to deal with - then I go back to eating normally, and then have another "first day of the diet" to deal with.  I always know that I'm only one day away from being able, without guilt, to give in to the craving for chocolate or cake.

So far, I've fasted two days.  I've found it not at all difficult. In fact, I'm starting to wonder if I want to increase it to three days per week during Lent, and to explore some of the spiritual side to the tradition of fasting.

And if I do have a bout of the prednisone hungries on a fast day, all I have to do is nominate it a non-fast day after all, and have another fast day in its place.

Hopefully, this will work. It has to. My ankles are depending on it.


Mosely, Michael. The Fast Diet: Lose Weight Stay Healthy and Live Longer with the Simple Secret of Intermittent Fasting.

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."