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:
http://www.healthline.com/health/best-health-blogs-contest

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: http://www.med.monash.edu.au/scs/nutrition-dietetics/short-courses/food-as-med.html

Wednesday, 19 October 2016

My Memory's Getting ... What Was I Saying?

lupus.cheezburger.com
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

lupus.cheezburger.com
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 methotrexate (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.

Saturday, 10 September 2016

Not Going Back

lupus.cheezburger.com
I was walking around the Ipswich Mall today, and discovered a lovely little shop I'd never seen before.

It sold craft items, which looked lovely.

I asked, and was told that yes, they were all locally made.

The shop assistant said local craftspeople left items with them on consignment.

Seeing an opportunity, I asked if they could take my books on consignment.  She wasn't sure and said to come and see the boss during the week.

She asked my name, and was sure she recognised it from somewhere.  I said if she followed the mayor on Facebook, she might have seen him sharing lupus catch-ups I'd organised.

That was a mistake.

She launched into a long story of how she'd cured someone's lupus.  The woman had a terrible rash, and these products a Malaysian nurse had told her about fixed it right up. The shop assistant herself had been taking these treatments and she hadn't seen a doctor for 20 years, even though she used to sometimes get headaches.  I really should think about trying it.

Regular readers know what I think of unsolicited and unqualified medical advice.  (In short, if I didn't ask you and you're not my doctor, I don't want medical advice from you.)

I could have explained the rash isn't the bit of lupus that can kill us.  I could have pointed out that there is no known cure.  I could have done any number of things.

What I did was smile nicely, leave, and decide to never go back there. (Not even if they could sell books for me.)

Wednesday, 31 August 2016

Trying Not To Be a Wonky Donkey

Hee-haw! I'm a donkey.
Lately, my "normal" bed time is 7pm.  Add to that, the issues with nausea I've been having, going out at night is not something I really do much of.

But last night, I did go out.  I even drove.

I went to an function for all the Toastmasters' clubs in the area.  There was a nursery rhyme theme, and my club went as Old McDonald's Farm.

I made animal ears for team members as our costumes.  Because I had a couple of week's notice, the sewing and craft work was easy to do in time.  

It was actually going out at night time that I was afraid might go all wrong.

I went as a donkey.  I was very drugged up on anti-nausea medications because I was very afraid of being a seriously wonky donkey.

I also slept for several hours through the day, and had a similar nap today as well for recovery.

Despite my fear that I'd end up having to rush out and throw up through the evening, or be unable to handle driving, it all worked out well, and I had a good night.

The days of just going and doing things on impulse are long gone.  But with a bit of care and preparation, I can still make the most of an opportunity to go out.

Thursday, 25 August 2016

I'm Adapting

lupus.cheezburger.com
Earlier in the month, I posted about an issue I was having with constant vomiting.  My GP added a number of anti-nausea drugs into my cocktail.

Then I started having abdominal pains, and she added a laxative.  It helped.

So now, I've got lots of drugs to keep everything moving in the right direction.

But I still have an issue with nausea.

Yep,  the medication's helped, but the problem hasn't gone away.

It's like morning sickness (and I am definitely not pregnant.)

With my first child, I lost weight in the first few months of pregnancy because of morning sickness, so when I say it feels like morning sickness, I mean it's pretty awful.

For the first few days of this, I lived on Ensure (it's the only meal replacement I could find that appeared from the ingredients list to be free from lactose and gluten.)

After a while, I added some solid food back, in the middle of the day.  A couple of times I tried eating in the evening as well, but found I was really sick while I was trying to sleep.

Today, I tried eating breakfast for the first time since this all started.  It was a big mistake, and I won't do that again.

What's causing the problem?  I have no idea, and my GP doesn't seem to have any idea, except that I have always had gut problems.  This just seems to be my normal reflux and irritable bowel just asserting themselves quite a bit more than usual.

Right now, I'm just trying to be very kind to my gut, being very careful about lactose and gluten, trying not to eat too much when I eat, and being careful to eat plenty of fibre.

One thing that lupies learn to do very well is to adapt to whatever lupus throws at us.

I'm adapting.



Related post: Keeping the Bucket Close

Tuesday, 23 August 2016

What AUST R and AUST L on your Medicines Mean.

Image: section of two labels one with an AUST R number and one with and AUST L number.  Text: Pharmaceuticals in Australia will be labelled either AUST R or AUST L.A while ago, I did a post about the Therapeutic Goods Administration, and how it assesses the safety of therapeutic Goods.

Today, I want to talk a little more about the work of the TGA.

Any legally-available medications in Australia, will have somewhere on their packages either AUST R with a number or AUST L with a number.

You can take the number and search the TGA website to get details of the medication, and its makers and suppliers.

So what do these mean?

AUST R means the product is registered with the TGA.  This category includes all prescription medications and a lot of over-the-counter medications, and therapeutic devices.  These are drugs that can be dangerous if used incorrectly, and the manufacturers have had to prove to the TGA that the drugs work for the purpose they're intended for, and that the benefit of using them outweighs the risks involved. Extensive independent studies have to be produced to support the case for having a product registered.

AUST L means the product is listed with the TGA.  Listed products have to be made up of ingredients that have been proven to be basically harmless.  The TGA doesn't require manufacturers to provide evidence of what the drugs do in the particular combination of ingredients.  There is a caveats with AUST L being completely harmless - some things that on their own are safe, can react in bad ways with other things (eg your other medications). It's important to make sure you talk with your doctor or pharmacist about everything you're taking, in case two things really are dangerous together.  AUST L medications are not allowed to claim to be appropriate to treat major health issues (eg lupus, migraine, or anything else you would see a doctor for, unless it's an obvious thing, like a vitamin to treat a vitamin deficiency.)

When your doctor prescribes medication to treat lupus, they will be AUST R medications.

When you get a pain reliever or an antihistamine over the counter from your pharmacist, that will be an AUST R medication.

If your blood tests show you're deficient in a vitamin or mineral, eg B12 or calcium, your doctor might advise you to take those.  They will be AUST L medications.  Vitamins and minerals can be great for treating vitamin and mineral deficiencies.

You will probably find a mix of both AUST R and AUST L medications in your medicine drawer or cupboard.

If you find an AUST L medication that's listed as curing or treating lupus, or cancer, etc, contact the TGA - because that's going way beyond what they're allowed to say and way beyond what they are proven to do.

If you find a "medication" that doesn't have either AUST R or AUST L on it, inform the TGA, and do not under any circumstances use the product. It will be illegal, unproven, and possibly unsafe.



Reference: Therapeutic Goods Administration - Registered and Listed Medicines
Related Post: Assessing the Safety of Therapeutic Goods

Sunday, 21 August 2016

No Fuss Nutrition: Salsa Plus

Salsa plus with rice.
I love to cook, really I do.  But I don't always have the energy to cook a proper meal. So I keep looking for ways to get healthy and tasty food, with minimal effort.

One of the ingredients I really love is canned beans.  They have all the nutrition of dried beans, but without the preparation work involved in pre-soaking.

That brings me to my Salsa Plus.  What's that you say?  Well it's a simple mix of a drained and washed can of four bean mix or five bean mix, a drained can of corn kernels, and a jar of tomato salsa (I use mild - but go as spicy as you like.) Just put them all in a dish and stir them together. It will last in a sealed container in the fridge for a few days.

I started making this to go with corn chips (obvious choice), but I discovered that it's also great mixed through rice, or served with a garden salad. It's quick, cheap, tasty, healthy, and requires very little effort or planning - pretty much all the boxes ticked for me.