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.

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.

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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.

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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.


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