Thursday, 19 January 2017

It makes a difference
You might have seen online a picture of a woman whose mobility scooter has tipped over, leaving her stuck against supermarket shelves.

Her story is here.

In short, she is a woman with a spinal condition that prevents her standing and walking for any length of time.  She was buying groceries for her family, and her scooter overturned while she was reaching for her husband's favourite soft drink.

Someone (a stranger) nearby took a photo and uploaded it to the internet to make fun of her.

I'd like to contrast that to the day my mobility scooter overturned.

It was year or so ago, at a theme park.  I had my little granddaughter on the scooter with me, and was following my daughter who was walking a little ahead of us.

She walked over a small bridge, and without thinking, I followed.  The bridge was too steep, and the scooter turned over.  I did what I could to protect the baby from being hurt as we went over.

As with the woman in the photo, it happened in a public place with strangers around.

What those strangers did was: help me up, check I was OK, picked up the scooter and checked it was OK, reassured me that the baby was fine. Nobody took photos.  I don't know those people who helped, but I'll always remember their actions with gratitude.

As frightening as my experience was, I'm sure it was much better than the experience of the lady in the picture.

That being the case, I'd like to make a recommendation to anyone who reads this.  When you see someone in trouble (whether they have a disability or not) please behave like a decent human being, not a total jerk. It makes a difference.


I am the woman in the picture and this is what it was like:

Monday, 26 December 2016

Boxing Day Blues
Lupie wakes to find gut is alternately adding logs to a fire in her oesophagus, and inflating her abdomen with bike tyre pump.

Lupie: Why the heartburn? And why does it feel like there's a pile of rocks in my stomach?

Gut: Someone forgot to take domperidone yesterday before eating.  Stomach didn't empty properly, and everything built up to cause a great case of heartburn.

Lupie: So why's my abdomen full of air?

Gut: Don't play dumb.  You know what you drank yesterday.

Lupie: I had two glasses of wine.  It was low alcohol wine.

Gut: It was sparkling wine.  Full of fizzy gas.  Just like all the soft drink you put away.  Where do you think the gas is going to go?

Lupie: Maybe I expected to burp, or pass gas in the other way normal people do.

Gut laughs maniacally.

Lupie: Maybe "expect" is too strong a word.  I hoped.

Gut: And you ate things you shouldn't.

Lupie:  I avoided anything with lactose and gluten.  I was very careful.

Gut: What did you notice about nuts.

Lupie: I'm not allergic to nuts.

Gut: Go on...

Lupie: But I did notice a strange feeling in my mouth when I ate walnuts, that I've never noticed before.

Gut:  Aha! Do you know what that means?

Lupie:  No.

Gut: You'll find out later today, you'll probably manage to get rid of all the gas then, too.

Lupie: Brain, where were you while this was happening?

Brain: Well, I always thought Sarah was Mr Percolate's bodyguard.

Lupie: Brain, you're still dreaming. Wake up.

Brain: Huh?

Lupie: What were you up to yesterday?

Brain: Yesterday? What did we do yesterday? I'm a bit foggy. Let me think. Umm.

Lupie: Well that explains that. I'd better at least take some domperidone now so I can have breakfast.

Feet: Don't you even think about standing.. ouch! ouch! ouch! Owwwwww for the love of God, we're too swollen to walk on!  Sit down, sit, sit sit!!!

Hips: Do not sit down. Do not under any circumstances do anything.

Knees: Don't make us bend, just don't, we can't. Stop it.

Brain: Who's in favour of going back to sleep.

Gut: Not me, I've got plans for today, big plans.

Eyes: We'd be crying now, but we're so dry the tears would burn.

Lupie: So I didn't really do too badly yesterday.  It feel like just another ordinary day today. Coffee to wake up brain, some medication to calm everyone else down, and there's nothing I can't deal with.

Sunday, 25 December 2016

Merry Christmas
Merry Christmas lovely lupies.

Or Happy Hannukah, if that's what you celebrate.

Or have a wonderful day whatever you are or are not celebrating.

I hope you all have a low-pain, low-fatigue day whatever and however you are celebrating.

Let's all try not to over-do things.

Saturday, 17 December 2016

Lupie's Morning Routine

Wake up.  I'm feeling terrible. What to do now?

Analysis. Why do I feel bad?

  1. My eyes are sore dry, and feel like they've been rubbed down with sandpaper.
  2. My mouth's also dry.
  3. My feet and legs are sore and swollen, and it hurts to stand.
  4. Random joints hurt.
  5. Exhaustion.  I feel like I haven't slept in a month.
  6. Overheated.  
  7. Gut feels uncomfortable.
Plan.  What can I do about each of these things?
  1. Dry eyes: Use my eye gel.
  2. Dry mouth:  Rinse with dry mouth mouthwash.
  3. Feet and legs:  Try the tens machine.  If that fails take a fluid tablet.
  4. Joint pain: Tens machine again, if that fails, anti-inflammatory gel on the problem joints, failing that, pain pill.
  5. Exhaustion: Coffee.  Lots of strong coffee, and my vitamin B12 supplement.
  6. Overheated: Turn on air conditioner, and put hair up in ponytail to get it off the back of my neck.
  7. Gut: Take my fibre supplement.
Action. What I do.
  1. Put in eye gel.
  2. Wash mouth with dry mouth mouthwash.
  3. Have coffee and try to remember what else I planned to do.
  4. Go back to bed for another hour because I feel horrible.

Thursday, 15 December 2016

The Social Side of Lupus Life

I bake nice things, and have good coffee.
Hello Lovely Lupies,

I'm back from my little break in time for Christmas.  I really did just need some blog-free space to clear my head.

A friend here for morning tea, said something about his social life being coming here for morning tea.

I said, "Well my social life consists of baking nice things to lure people to come here and talk to me."

I was only half-joking.

I bake when I have energy, mostly because baking is one of the things I enjoy doing, and because it's one way to get gluten free food that tastes nice.  But that does mean I usually have something nice on hand when someone has time to drop by for a coffee.

I find having people come to visit me is much easier than going out, especially in the summer heat. When they leave, I can clean up straight away, or have a rest first.  I don't have to immediately drive home from wherever.

So lovely lupies, with Christmas coming up, and it being the season for socialising, how do you handle it?  Do you just miss out on catching up with friends? Do you invite them to come to you?  Do you find the energy to go out?

Wednesday, 23 November 2016

Vote for your favourite health blogger

Healthline's running a competition for the best health blogs this year.

You can vote for your favourite health blogs here:

If you want to vote for Sometimes, it is Lupus,  you'll find it listed as "Sometimes It's Lupus".

You might find some other blogs in the list that you'd like to read.

Saturday, 29 October 2016

Taking a break

I'm taking a break from blogging for a while; but there's five years of posts here, so hopefully, you can still find something interesting to read.

Friday, 21 October 2016

Food as Medicine Short Course

Do you want help to sort out fact from fiction when it comes to nutrition and health?

Dieticians at Monash University are running a free on-line nutrition course, called "Food as Medicine."

It's a course designed for anyone with an interest in food, nutrition and health, and run by actual, qualified dieticians, not someone who is trying to market the latest "superfood" or supplement.

It starts this coming Monday, so if you're going to sign up, be quick.

Further information:

Wednesday, 19 October 2016

My Memory's Getting ... What Was I Saying?
I had to go to the GP for a new referral to my gerontologist (not for my age, for my memory.)

I made the appointment, thinking, "I don't really need this, my memory's been getting much better lately."

In fact, I'd been telling myself I had been feeling really good, generally, and that everything was getting better.

I walked the dog every day for a week. I convinced myself that the exercise was good for me, and I was actually feeling better in all ways.

Then I got the phone call from the doctor's office asking why I'd missed my appointment.  I'd forgotten to go.

Suddenly, I realised just how exhausted I actually was.  I looked at my pill sorter, and noticed the number of times during the week I'd forgotten to take my meds.

I went to bed.  I stayed there for most of the week, and and probably not yet quite back to where I was before I decided to exercise every day.

My son's been walking the dog. This has made the dog much happier because he walks further and faster than I do.

The lesson from all this is that yes, I do have limits, and constantly pushing past them isn't going to make them go away, it's just going to make the crash worse when it comes. It seems I had learned that lesson a few times before, but I've kept forgetting it.

The other lesson is that, yes, I do need that appointment for my memory.

Saturday, 8 October 2016

It's All In The Jeans
I've gone down a jeans size!

How did this amazing thing happen, when I've been unsuccessfully battling weight for years?

A while ago, I talked my rheumatologist into letting me try a lower dose of prednisone.

He told me that the 5mg dose I was on shouldn't be enough to make me gain weight. However, he was finally persuaded to let me gradually reduce to 3mg per day.

It doesn't seem like a lot, does it?

I knew it would mean extra pain, and I was prepared for that.  I find I'm using more meloxicam (anti-inflammatory tablets) and anti-inflammatory gels and rubs. With that help, I'm managing the pain.

But I stuck to Calorie King, which regular readers know I've been doing for years, and slowly, something is starting to change.

My weight still fluctuates wildly from day to day because of my problem with retaining fluid, so I really can't reliably tell how much I've lost, but my jeans had been getting looser and looser.

About a week ago, I found I could pull them on without undoing them.

Today, I found an older, smaller pair.  They're loose.

So poo to you, prednisone.  For once, I win.