Sunday, 4 July 2021

This is what it's like

 This is what life with lupus is like:

  • I bought a book on how to keep a house clean in 15 minutes per day.  What takes the person in the book 15 minutes takes me five hours and major pain relief.
  • One morning per week is assigned to sort my week's pills.
  • Everyone at the pharmacy knows my name.
  • Many people who aren't my doctor tell me my medications are dangerous (they are, but lupus and now diabetes are both even more dangerous), that they know better, natural, ways to cure things that medical science can only manage.  These people fail to acknowledge that before medical science came up with these tools to at least manage my illnesses, people like me weren't "cured"; they died.
  • I go for a walk with my daughter and the dog.  They're walking as slow as they possibly can, and I am struggling to keep up, pain increasing constantly. I won't yell at them to stop and wait for me, because a) I'm too proud, not wanting to admit I can't do it and b) they, also need some exercise.
  • The same torn up dog toy has been on the floor for a week.  At least three times a day I tell myself I will pick it up when my body lets me reach the floor.  After a week, I get my reacher tool and pick it up.  I don't ask my daughter to do it because, once again, I'm too proud to admit I can't do it.
  • I sweep the floor, because again, I want to prove I can do it without asking for help.  I trip on something (ironically, on the frame from around the toilet, that's supposed to help me get up), and find myself stuck on the floor, tangled in the frame, unable to get up and in extreme pain.  On this occasion, I do call my daughter for help.  It seems she would have rather swept the floor than pick me up off it.
  • My daughter is officially my carer.  Since I want to try to do everything for myself, she has very little work until I either fall over and can't get up, or am actually physically incapable of doing anything for myself.  I still push myself until I have flares and can't do anything, rather than say I need her to do xyz, because I persist in thinking I can do those things with no ill-consequences. Sometimes, I do get away with doing those things without consequences, and insist that proves me right in my delusion.
  • My house always looks like a disaster area, because I am really bad at housework (weak sore joints will do that), but I don't get my daughter to do it for me, because I want to do it myself.

  • I am told I now have diabetes, I have to learn to do finger prick tests, manage new medication, will probably have to change my diet and exercise regime again, etc. I just think: "I adapted to lupus, how hard can it be?" (But my daughter does come to all my appointments to make sure we both know what I'm supposed to do now.)
  • I still really resent that a number of years ago, my rheumatologist told me to: "Stop trying to prove you can have a normal life."

Thursday, 31 December 2020

More on the Anti Inflammatory Diet

 About a fortnight ago, I told you about Dr Donald Thomas' Anti-inflammatory Diet.

I've been following it since then, and so far, I've been finding it quite easy.

I have not yet shown any signs of losing any weight. (I still weigh in at 101kg.) I don't know about how seriously we need to take that warning that the diet should only be followed by people who can afford to lose weight.

The major challenge I think many people will have is only eating during an eight hour period of the day - fasting for 16 hours.  I'm delaying breakfast until 10am, and making sure I eat a light dinner shortly before 6pm.  I'm making lunch, any time between midday and 2pm, my main meal of the day.

I was already gluten free (to relieve irritable bowel symptoms), so that didn't phase me at all.  The recommended cheeses, yoghurt, etc, I've found in lactose free variations so I can eat them without causing reflux. I do still get some sniffle and blocked nose issues eating lactose-free dairy products, but that's nothing an antihistamine can't fix.

I didn't give up nightshade vegetables (tomatoes, potatoes, etc), because they don't seem to cause me any issues, and Dr Thomas' diet post only said to avoid them if you flare after eating them.

Giving up red meat hasn't really bothered me much. I did eat some at Christmas - and gave myself permission to eat pretty much whatever I wanted out of what was on offer at Christmas.  (It was a lot - my daughter and her partner cooked, and they made sure to make gluten free and lactose free variations of most things for me.) Otherwise, I pretty much just went back to the foods I was eating when I was vegetarian.  Strangely enough, I had gone back to eating meat when my GP told me to stop eating gluten, because I was afraid of running out of things I could eat - but now I'm used to being gluten free - going back to a mostly plant-based diet isn't really that bad.

Keeping chicken/turkey to two meals a week isn't that difficult, and I haven't eaten either at all in the past week, in the previous week I had a couple of meals out and opted for chicken then.

In case you're trying this, and having trouble knowing what to eat, here's a couple of suggestions.

Meatless bolognaise (no set measurements, go with your taste - I just chuck stuff in):

  • A handful of dried red lentils washed (put them in a strainer and run the tap over them),
  • A little bit of olive oil (a teaspoon or two is enough)
  • Onion
  • Your choice of any (or all) of the following vegetables; finely diced: capsicum, carrot, celery, mushroom, tomato, garlic, broccoli, cauliflower, olives
  • Red wine (optional)
  • Passata (tomato puree), or you could use a can of crushed tomatoes
  • Your choice of any (or all) of these herbs; chives, oregano, parsley, basil, chilli
  1. Cook onion (and fresh garlic if using), with olive oil over a low heat until onion is translucent.
  2. Add all the other ingredients, bring to the boil, then simmer slowly until lentils and vegetables are tender and sauce is thick.
  3. Serve with your favourite gluten free pasta, and a topping with grated parmesian.
  4. If making lasagne - layer the bolognaise between lasagne sheets, then top with cottage cheese, sprinkle with black pepper and a little nutmeg, and then a layer of grated cheese.  Bake in a medium oven for half a hour.

Ways to serve a cold potato

The whole cooked, then chilled, potato not sounding great? Try one of these:

  • Make potato salad. Mix your diced cold potatoes with mayonnaise, chopped hard boiled egg, perhaps some cold peas, parsley, spring onion, whatever takes your fancy.
  • Cook potato in the jacket, cut in half and chill. Serve potato halves topped with a mix of cottage cheese and tuna, or cottage cheese and finely cut gherkin.
  • Minted potatoes.  Add a sprig of mint to the water when you boil diced potatoes.  Once cooked, drain the potatoes, and pour over them a dressing of: half a cup of boiling water, half a cup of white spirit vinegar, a teaspoon of sugar and a teaspoon of dried mint.  Chill, and serve with a salad.

Want a really quick meal?
  • Drain, then wash a can of four-bean mix. (Empty the can into a strainer, then run under a tap until the water stops foaming.) This is your protein.  Finely chop a carrot, a stick of celery, a gherkin. Dress with a teaspoon each of olive oil and balsamic vinegar.  Serves 1-2, depending how hungry you are.
  • Toast a couple of slices of mixed grain gluten free bread. (Mixed grain GF breads will almost always have linseed in them, you don't need to go looking specifically for ones that say they have linseed.) Spread with avocado, and top with tomato and cheese (any type of cheese from the diet will do).

OK.  I'll give you some other recipes over the next few weeks.

So far, this diet hasn't changed my pain and fatigue, but I'm going to stick with it, to give it a proper go, and I admit I haven't added in exercise yet.  I'm trying to decide if I'm brave enough to go back to a pubic pool for hydrotherapy - COVID is very much under control here in Queensland, so the risk is minimal, but even minimal risks bother me to some extent.

Tuesday, 15 December 2020

Anti-inflammatory Diet

 For years, I've been hearing about various anti-inflammatory diets, and even seen a list of foods graded on an inflammatory scale.  I haven't shared any of them with you because, I haven't been able to find any research backing any of it.

Well, here's the holy grail.  It's an anti-inflammatory diet that's based on the latest research.

Dr Donald Thomas, the rheumatologist who brought us the Lupus Encyclopedia (review here), has shared the diet he shares with his own patients, which is based on research. He cites his sources, so you can check them out for yourself.

You can find it on his blog, here:

He does warn it's only for people who can afford to lose weight.  So it's no help for anyone who is underweight.  (Although I am always struggling with being overweight, I know lupies come in all shapes and sizes.)

I looked at it and thought, I will start on it in the new year.  Then I looked again, realised how easy it would be to make those adjustments to my diet, and decided to do it now.  It's really not greatly different from my current diet, except that I eat far more meat.  I've been vegetarian before, so I can handle the reduction in meat. 

There are some foods in my kitchen that are incompatible with this diet, and I will use them over time.  I will allow myself the occasional deviation so I'm not wasting food I already have in my freezer, or so that I can enjoy whatever is available when I'm out.

So lovely lupies, even though I'm only two days in to trying it for myself, I recommend you have a look. As always, if you're unsure, your best advisers are your own GP and your rheumatologist, immunologist or other specialist.

I also recommend keeping an eye on Dr Thomas' blog,

Saturday, 5 December 2020

Autoimmune Research and Resource Centre Fundraiser Raffle

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Friday, 4 December 2020

Tips for Pills

Break the foil with a fingernail
 I've always been one of those people who has problems with blister packs of pills.

Theoretically, I should be able to push on the bubble side of the blister pack, and have the pill just pop out of the foil side.  That's what manufacturers would have me believe is possible.

What actually happens is that I push and push, and nothing happens.  I keep trying, and throw my whole body into the effort and almost find myself rolling on the floor wrestling with the packaging.  When I finally do get the pill out, I am more than likely to cut myself on the foil.  Of course, if it's a capsule, by this time, it's flattened, and I'm amazed it hasn't exploded and let all the powder out.

Just recently something miraculous has happened.

I've recently started to grow fingernails.  Well, I've always grown fingernails, but they've been thin, weak and constantly split and broken off.  Since the doctor has been checking vitamin and mineral levels on my regular blood tests, and getting me to take supplements on the things I was low on, I've grown thick, strong fingernails of the type I've only ever dreamed of.  They're so strong, that instead of breaking off, I've actually had to cut them!

Did you know the round edge of a fingernail is just the right shape to fit around the edge of a pill in a blister pack? Now I puncture the edge of the foil beside the pill, and suddenly it really is easy to just pop the pill out of the pack!

Cut the plastic band.
I've also had endless hours of fun trying to access pills in bottles. I'm sure someone in a pharmaceutical somewhere earns a huge bonus every time they think of a new way to make medications inaccessible to people who need them.

You know those plastic bottles that have the band just under the lid that make them impossible to open the first time? I eventually found the solution to that as well. The trick is to carefully run a knife between the lid and the plastic band. There's a weak spot that's supposed to break when you twist the lid, but it never does.  That's what you need to cut. That breaks the seal and makes it so much easier to get the bottle open.

By the way, it's also important to cut through that plastic band before putting the empty bottle in the recycling bin.  That way, if the band somehow goes astray from the recycling system and ends up in the environment, it can't strangle animals.

Tuesday, 4 August 2020

Good News, Bad News

I had the appointment with the gerontologist who looks after my cognitive issues. (See previous post.)  Because the government is allowing telehealth appointments under Medicare  now, I was able to see her over FaceTime and not have to go into Brisbane.

Here's the good news:  I don't have dementia, just still the mild cognitive dysfunction of lupus.  That huge thing I freaked out about forgetting, she said, was just my brain responding to extreme trauma. Apparently my brain just decided to deal with it by not dealing with it. She's sending me to a psychologist to deal with that.

The bad news: my cognition is such that she wants to limit my driving to just my local area and just during daylight hours.  Which means, while it's not dementia, it's still nothing fantastic, and my world is getting smaller.

The other news: she's changing a number of my medications to ones that are more memory-friendly, including one that's not on the PBS (ie not government-subsidised), so I'll have to pay full price.  It's going to take a few weeks to wean off one medication and go on to the replacement, which is always an adventure.

She also says it's about time for me to do a new sleep study. I don't know if things like sleep studies are still going on right now, but some time in the future, that needs to happen.

Note for overseas readers: Medicare is the Australian Government's universal healthcare system.  The PBS (Pharmaceutical Benefits Scheme) is the Australian Government's medication-subsidy scheme.

Tuesday, 28 July 2020

Time for a Temper Tantrum

I've had issues with cognitive dysfunction for years.  I've had brain scans and other tests, and the only thing of any real note was some vascular changes, which were put down to "normal lupus."

For a couple of years, my GP had me going for regular check-ups with a gerontologist/neurologist, who would monitor my cognitive function.  It was only ever a little bit off, and wasn't getting any worse, so when I forgot to make the next appointment, my GP and I both just shrugged it off and said it probably wasn't worth going back anyway.

A couple of weeks ago, I needed to see my GP for new prescriptions, and found that my GP had left the practice, and I had to see a new doctor. It was the typical lupie first appointment with a new GP, she looked at my record on the computer and said I was down for a lot of medications, some of those must be old things I wasn't taking anymore. I gave her my list of medications (and what they're all for), and yes, I'm still on all those meds.

Fast forward to this week.

Someone mentioned an incident to me, that was the kind of thing no sane person could possibly forget.  It was something huge. I had absolutely no recollection of it whatsoever.

I freaked out.  If I have forgotten that, what else could I have forgotten? How much of my memory have I actually lost?

I set up a phone appointment with the new GP, for this Friday. (It's the earliest appointment I could get.)  I was planning to ask for a referral to a neurologist.

Then yesterday, I started shaking uncontrollably.  It started about midday, and continued until I went to bed.  Weird, I thought, but it was a very cold day, and even though I had a jacket on, the air-conditioner set to heat and a blanket wrapped around me, it sort of still made sense.

Today is not so cold.  Today around midday, I've started shivering uncontrollably.  If I hold my teeth shut tight together so they don't chatter, my whole head shakes wildly.  The only time anything like this has happened to me in the past, I had a raging fever.  I don't have a fever now.

I still have an appointment for the doctor on Friday.  I should just add this weird new symptom to my list of things to talk about with her.

But, and it's a big but:  I'm not just looking at this weird new symptom as some kind of curiosity.  Combined with the big, big issue of what I've forgotten, I'm actually scared.

What I really, really want to do, is lay on the floor and kick and scream and yell, that I don't want the new doctor! I want my doctor! The one I've been seeing for years.

Unfortunately, that kind of behaviour is frowned upon in people over the age of two.

So I'm going to do what I have to do.  Deal with it.  I'm going to talk as calmly as I can with the new doctor and hope she knows what to do about all of this. If all else fails, I'll try to get an extra appointment with my rheumatologist. In the meantime, I'm going to try to keep busy and avoid thinking about what I don't know or don't remember.

Thursday, 9 July 2020

Best Blogs and Other Bits

Hello lovely lupies,
Healthline's Best Lupus Blogs 2020.

Did you miss me?

I had intended to stay with you through the entire pandemic, but things happened.  First was the incident mentioned in my previous post, and then some family stuff including my mother being hospitalised repeatedly.  The stress from all of it combined led to a flare, so I've spent a couple of months in the flare, moving between lying on the couch, and sitting on the couch.

In the meantime, the first wave of Covid has come and gone, and a second wave is starting down in Victoria.  Even Queensland's state borders have reopened, to an extent. People from interstate can come here, under some conditions, with a border pass they have to apply for in advance.  At the moment people from Victoria can't come here at all.  We don't want any of those diseased southerners here thank you.  (Sorry to readers from Victoria.  You know I love you, I just prefer to love you from a safe distance right now.)
I've made face masks.

Preparing for the second wave, just in case it does get here, I've made some new face masks, for myself and for some other vulnerable family members.

Really, however, things here seem to be getting "back to normal".  (If someone knows what normal actually is, please let me know.) I have been out to physical shops, not just buying  things online. The church building is going to reopen, and I am going to miss going to church in my lounge room with coffee and wearing my pyjamas. My granddaughter is on school holidays, having had a term back at her physical school.

Aside from Covid-related matters, the news is that Sometimes, it is Lupus has made Healthline's Best Lupus Blogs for the year again. It's always lovely to realise that not only has someone read what I've written, but apparently liked it.

Hopefully, I will be with you now for whatever else 2020 is going to throw at us.

Sunday, 26 April 2020

My Biggest Mistake

I made my biggest mistake in my 11 years of blogging today.

I shared, on the Sometimes it is Lupus Facebook Pate,  an article about misinformation (that people with lupus don't catch COVID-19) a prominent person in a foreign country said.

My main purpose was to warn lupies that if they'd heard this it was inaccurate.  We have weird immune systems,  that doesn't protect us from other diseases, in fact, anecdotally, many of us catch anything that is going around.

I admit I was also having a bit of a laugh at the person who had announced the misinformation.  In my defence, I'm Australian.  We make a national sport of laughing at all politicians, of whatever party, whether we support them or not.

What I was not prepared for was the response.

Instead of a discussion of how to protect ourselves from this horrible pandemic, it immediately became a massive political argument.

I had no idea of just how strongly people from this particular foreign country feel about their politicians.

I promise I will not be making that mistake again.

So, as always, get your medical advice from your doctor, not from celebrities, politicians or anyone else.

Saturday, 25 April 2020

Facebook Understands

Facebook gave me this helpful recommendation.
I really appreciate online support from others with lupus.  It feels less horrible when I am reminded others are facing the same issues I am.

So, as well as the Sometimes, it is Lupus Facebook page, I'm also part of a couple of lupus support Facebook groups. It helps me stay connected.

I have to say, I was very surprised when Facebook gave me recommendations for groups which it said had similar topics and activity to one of the groups I am part of.

Apparently groups based on department stores and hardware stores also discuss living with lupus, or at least Facebook thinks they do.

Or perhaps, Facebook and other platforms don't understand us at all.

That's OK.  As long as we are here for each other, it doesn't really matter if anyone else "gets it".

Hang in there lovely lupies.  These are strange times, but we'll get through them together (while physically apart.)