Wednesday, 18 July 2018

The Horrifying Truth

It was a freezing cold morning, and I was lying in my nice warm bed, waiting for the coffee my son had offered to bring me.

He was taking an unusually long time, and I thought back to our conversation.

As well as offering me coffee, he'd asked me to cut his hair (he hasn't had his hair cut in about 12 years) and talked about the upcoming taekwando competition (neither of us has done taekwando since before his last haircut.)

The whole conversation had been an hallucination, or possibly a dream.

That's when the horrifying truth hit me. There was no coffee being made!

Tuesday, 17 July 2018

More on the Shade Sensor

The Shade ultraviolet light sensor,
which is much tougher than you might
expect a small electronic device to be.
A while ago, I reviewed the Shade ultraviolet light sensor.

I love this device. It helps me track how much ultraviolet light I'm exposed to each day, and lets me know when I should probably call it a day and go inside.

Since my review.  I've learned something more about the Shade. This thing is tough.

If, for example, someone accidentally threw the sensor into the washing machine with a load of clothes, and found it a week later, after several more loads of wash were done,  firmly attached to the inside of the washing machine drum, it surprisingly would still work. (That magnet is really strong, there was no way the device was coming away from the drum without help.)

Please note, I do not recommend, suggest, or in any way encourage, putting the Shade or any other electronic device through the wash.

I'm just saying, stuff happens.  With brain fog and a bit of sore joint clumsiness, more stuff might possibly happen in my house than in a healthy person's house. You might experience something similar, or maybe not. I'm not saying you're exactly the same as me. But if you are like me, you might be reassured to know that the device you're using is tough enough to handle it.




Related post: Review: Shade UV Light Sensor

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Sometimes, It Is Lupus has been nominated for a Wego Health Award.

The specific award nominated this time around is Best in Show: Blog.

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Find my nominee profile here: https://awards.wegohealth.com/nominees/14081.

Tuesday, 12 June 2018

Utterly Exhausted

Image: sleeping kitten.
Utterly exhausted.
I'm utterly exhausted!

Usually I have energy in winter - it's summer that wipes me out.

This winter's the exception.  I'm sleeping all night and most of the day.

Even when I'm awake I'm struggling to stay that way.

What's different this winter?  I don't know.  Maybe it's the emotional strain of all the losses I've experienced lately (in less than three years, my best friend from high school and her mother have both died, my father died, my brother died, and lastly my beautiful cat died. Oh, the kitten in the picture is new, not the cat who died.)

Maybe it's the strain of a heap of unexpected financial pressures. (From a neighbour complaining that my trees need to be cut down, to the air conditioner and washing machine needing repairs, to endless other small and large niggling financial pressures.) Being sick is itself an expense, and not being able to work limits my income.

I'm assuming it's emotional strain that's causing the fatigue, because to be honest, I haven't done anything physical in ages, so it can't be physical fatigue.

Maybe it's just lupus being lupus and doing the unexpected. Winter is time for aches and pains - fatigue usually belongs in summer.  This winter, I'm getting the aches and pains, but also the fatigue.

Either way, I'm struggling to be awake.

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Tuesday, 22 May 2018

Super Soups

Split pea and celery soup.
It's the tail end of autumn, and it's starting to get cool here.  By that I mean the temperature is in single digits in the morning when I wake up.  I realise that in England and places like that this morning's six deg C temperature would have been considered quite mild, but here in the subtropics we call that cold.

To me, that means it's the perfect time for soup.

Soup is quick to prepare, nutritious, and can be refrigerated or frozen and reheated. For people like me who have limited energy for cooking, but need really healthy food it's perfect.

It's simply a matter of throwing the ingredients in a saucepan with stock, simmering until everything is tender, and then blending if you want a smoother texture.

Here are some of my favourites:

  • Split pea and celery.  
  • Canned five bean mix, frozen diced vegetables and canned tomatoes.
  • Chopped sweet potato, red lentils, canned tomatoes, lemon juice and curry powder.
  • Ham bone, split peas and carrots.
  • Bacon and canned tomatoes.
A big pot of any of these makes up several tasty, warming meals for the cold weather.

So lovely, lupies, what are your favourite easy winter warming meals?

Sunday, 20 May 2018

Recognition

Here's some news for Sometimes, It Is Lupus:

One of my earlier posts has been republished as an article in iPain Living Magazine.
The original post is This Little Lupie Went Wee Wee Wee.

And it's also made Healthline's list of Best Blogs for 2018.




Monday, 9 April 2018

It's Complicated

Image: dog holding toy hotdog.  Text: "What can you eat?"  It's complicated.I received an email from a screenwriter who is writing a script which includes a character with lupus. One of the questions he asked me was: "What can you eat?"

Well that's a big question, isn't it?

What I can eat has changed several times over the years. None of those changes have increased the things I can eat, sadly.

So what can I eat?


  • Not dairy.  It used to just be no lactose, because lactose gives me reflux - nausea and heartburn, sometimes bad enough to be mistaken for heart attack.  Now it's no dairy at all, because even lactose-free dairy products are causing severe post-nasal drip.  If I eat dairy products, I end up choking on post-nasal drip.  Waking up in the middle of the night coughing and choking is most unpleasant.  I've decided I don't want to die by drowning on my own secretions.  If I did, I could end up as an urban legend like Bloody Mary - you know, you look in the mirror and say three times "Snotty Iris", and my ghost appears and drowns you in snot.  So, it's now a no on the dairy.
  • Not gluten.  Gluten upsets my gut - gives me irritable bowel syndrome - wild, unpredictable, swings between constipation and diarrhoea. It's most unpleasant, and can be very embarrassing.
  • Not much fat or alcohol.  Lupus has been messing with my liver for years.  My liver enzymes are always off at every blood test.  (Sometimes too high, sometimes too low, totally unpredictable.)  I need to be gentle on my liver.  So I eat low fat food mostly, and limit to alcohol to the occasional glass of wine at Christmas or a birthday.
  • Low GI carbohydrates.  This is the newest thing.  My pancreas is struggling, so my blood sugar is now not being properly regulated.  Yes, the name for that is diabetes.  (Because I didn't have enough health issues already.)  So now I have to be aware of the Glycaemic Index of the carbohydrates I eat, and not over-eat carbs in general.
What can I eat?  Well, it's complicated, and it gets more complicated all the time.

Related Posts: 

Saturday, 7 April 2018

Flare Ongoing

Image: Sad dog, with toy crocodile leaning over arm of lounge.
My dog, missing out on her walk.
I'm still struggling with that flare that came up after my trip to my brother's funeral, but I'm slowly seeing signs of things improving.

There are signs of hope.  A couple of times, I've managed my morning walk with my dog.  That's the basis of the exercise program I was working on with the exercise physiologist before this flare started.

The whole program was the ten minute walk every morning, tai chi on two days per week, hydrotherapy once per week, and some strength exercises with an exercise band on the same days as the extra exercise.

Using the morning walk as a basis for the exercise program is a great idea, because I have someone to go with who really misses it when I can't go.  She's my incentive when I just don't feel like a walk.  I have to be really sick to disappoint her.

Image: dog, lying on her back with her legs up in the air, with toy crocodile also on its back with legs in the air.
My dog, after a walk.
So far, each time I've had a morning walk, I've been unable to do it again the next day, but one walk is better than no walk.

Eventually, I will be able have a walk every morning again, then I can start to introduce the rest of my exercise program - slowly, one part at a time, just the same way I did it last time around.

One of the ongoing frustrations of life with lupus is having to establish the "normal" routine over again each time a flare passes.

Saturday, 3 March 2018

The Funeral, the Flare, and the Feet

Just under a fortnight ago, my mother rang with horrible news. My younger brother had been killed in a horrible road accident.

I knew that the effort of travelling to the funeral would probably cause a flare, but if I didn't go, the stress and upset would probably cause a flare anyway. So of course I went.

Now, a little tip for pensioners travelling in Queensland.  Queensland Rail charged me $25 each way to travel from Brisbane to Rockhampton on the Tilt Train.  (You need your pension card when you book with them.) With a letter from my doctor saying I needed a carer with me, my son got his ticket free.

The actual trip involved about an hour on a city train to get from Ipswich to  Brisbane.  Then it was eight and a half hours on the travel train.

To help with the pain of sitting so long, I wore the portable tens machine attached to my hips and back the whole time.

I chose to stay at a hotel for the air-conditioning, instead of with family or friends. Because this trip was not planned ahead of time, with no time to save up, I could only afford two nights in the hotel.  So we arrived the night before the funeral,  stayed for the day of the funeral, and left the morning after.

By the time we arrived home, neither my mind nor my body wanted to function at all. To be fair my healthy son was in a similar state.

Two days later, however, he was back to normal, and I was sleeping on the couch all day.  I've been fatigued, in pain and brain-fogged for a week.

With this flare, something new is happening.  Not the crying, that's about my brother.  No, there's something weird happening with my feet.

When the rest of me is hot and pouring sweat (even in the air-conditioning), my feet are freezing cold.  I've been lying on the couch, under the air-conditioner with my feet wrapped in a blanket. Then occasionally I get horrible pains in the soles of my feet.

I suspect it's a circulatory problem.  One of the tests on my brain ages ago showed lupus had caused some vascular changes, so it's not beyond the realms of probability that the same thing is happening to my feet.

So I'm making sure I use the big tens machine at home each day - the one that does the base of the feet as well as having the electrodes for sore spots on the body.

My hope is this flare will burn out quickly, so I can get back to the exercise program the exercise physiologist worked out for me.  But all lupies know a flare will last as long as it lasts.

Sunday, 18 February 2018

Lupies Will Understand

I'm sure lupies will understand these things, healthy people might not.


  • Having to do something important, that involves speaking, when you have a massive ulcer on the tip of your tongue.
  • Going on a short trip, and having to take an extra bag for your medication.
  • When you have a choice between going out and having fun, and having a nap, choosing the nap.
  • Writing absolutely everything down, because otherwise you will forget 90% of it.
  • Checking your pill case five times in an hour because you keep forgetting if you took your pills.
  • Drinking coffee by the litre because otherwise you'll fall asleep, then not being able to sleep when you need to.
  • Postponing dealing with a crisis because you have a doctor's appointment.
  • Getting exhausted doing nothing
  • Not knowing if something new is a symptom or a side-effect.
  • Doing things you know you shouldn't because you're just so sick and tired of being sick and tired.