Tuesday, 30 May 2017

While I feel well, part 3

I'm continuing my project, while I'm feeling especially well, to get my body in the best possible shape to handle the next flare. (Because all lupies know, feeling well is a temporary state and there'll always be another flare at an unknown future time.)

So, step one was exercise.  I'm now exercising most days.  (Not every day,  I won't claim to be that virtuous, but most days.) I either do the the Lupus Exercise video exercise routine, or I go for a walk.  Some days, I even manage both.  And some days I over-do it and end up going to bed at 3pm.  But I am exercising regularly.

Step two was to bring my vegetable intake up to the five serves a day level, recommended in the Australian Guide to Healthy Eating. I've got that under control, again most days. I've done it in the simplest possible way.  I buy pre-packed bags of salad, and divide them four ways into containers for lunches with a little meat or boiled eggs, and that's four days lunches.  A large stock pot of vegetables, with some canned tomatoes, stock and rice and lentils added makes up a very good vegetable soup - and again I can prepare several days' serves at once.  A salad for lunch, and soup with dinner brings up my vegetable intake nicely.

Now, I'm ready to focus on something new.  I'm looking at the two and a half milk serves the Guide to Healthy Eating recommends for me. Being lactose intolerant, I don't have regular milk, but use lactose-free milk instead. (That is milk, with lactase enzyme added to break down the lactose.)  Non-dairy substitutes are available for people who don't like animal products or can't handle the protein in milk, but it's best to go for calcium-fortified versions dairy substitutes.

At the moment, I have milk with my breakfast cereal.  I really need to intentionally have a second serve of milk, cheese or yoghurt at another time of day as well. I'm thinking of a few options: cheese added to my lunch salad, or a warm milk before bed, or perhaps yoghurt and fruit for dessert.

There was a time when I would have created an exciting, varied, menu for my meals throughout the week.  I really don't have the energy for that now.  It's just easier to have a routine that works for most days, and then I only have to plan occasionally.

So that's my task for the next few days, to intentionally add a little more dairy into my diet.

How about the rest of you lovely lupies out there?  When you're able, what do you do to try to improve your health? Do you find it easier to have a routine that's the same most days, or do you like variety?

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Wednesday, 24 May 2017

While I feel well, part 2

So, I'm exercising almost every day.

The next step in improving my overall health is looking at my diet.

So I have been looking at the Australian Guide to Healthy Eating. The diagram below gives the overview of what a healthy diet should look like.

source: www.eatforhealth.gov.au
The guide gives a breakdown of actual number of serves recommended from each food group, for people on the basis of sex and age.

Looking at it, there are a lot of changes I need to make.  The biggest will be to get five serves of vegetables into my diet each day.  But a few weeks ago, getting exercise into every day seemed a major challenge, so I'll do this the same way - work up to it.  I'm going to look for ways to include more vegetables in my diet day by day, until it eventually becomes a habit.

Once I get that under control, I'll start looking at how well I balance the other food groups.

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Saturday, 20 May 2017

While I Feel Well

I mentioned my visit with my rheumatologist the other day, talking about costs.

I didn't share my good news.  Not only have I been feeling well most of the time lately, but my test results bear it out.  There's a very small amount of gut inflammation, and my liver function's not perfect, but all of my lupus markers are negative.

So I have a plan to make the most of lupus being inactive.  I'm going to work on my overall health as much as possible to be stronger and better able to cope when the next flare hits.

The first step is I'm exercising every day.  It took a while to build up to it, but I'm doing the Care for Lupus Lupus Exercise Program every day.  I'm also going for short walks with the dog on days when it doesn't rain.

Next, I'm going to try to get back in control of my diet.

Tuesday, 16 May 2017

Glad To Be Australian

I had an interesting conversation with my rheumatologist yesterday about the cost of managing lupus.

In Australia, as a pensioner, I pay about $6 for my methotrexate.  That's what it costs under the Pharmaceutical Benefits Scheme.  When I've paid a certain amount on medications for the year, they're free from then on.  Overall, including what I pay, and what the government pays, the methotrexate actually costs about $120, because it's a drug that's been around a long time and it's quite cheap.

Dr K asked me to guess what it cost in the USA.  I guessed about $2000, because the US is notorious for the high cost of healthcare. I was way off.
It's about $5,500. (Health insurance companies would pay some of that, if the patient has health insurance.) The government there isn't involved in purchasing drugs, and doesn't negotiate the price.

I'm sure America's a much better country to be a drug company - but as a patient I'm really glad I live here.

So my rheumatologist tells me that American patients can find it cheaper to fly here to see a specialist and buy medications, than to have their treatment there. (If you're not covered by the PBS, that methotrexate would be $120 here.)

I'm finding myself wondering how to start a drug smuggling ring - to smuggle methotrexate, prednisone, plaquenil, pyralin, all the usual lupus meds to people who really need them.

Wednesday, 10 May 2017

World Lupus Day 2017

It's World Lupus Day lovely lupies!

Since last WLD, some lupies have fallen in the battle, and some newly-diagnosed lupies have joined the fight.

One day this disease will be beaten. But until then, we will be here for each other. We will offer whatever support we can.  We will share whatever resources we have access to, and we will get through this together.

To mark World Lupus Day, the Lupus Knows No Boundaries e-report is now available on the World Lupus Day website.

(While you're on the World Lupus Day website, you might sign the petition for the World Health Organisation to give more attention to lupus.)

And on a much smaller scale, here on Sometimes, it is Lupus, our new resource for newly diagnosed lupies has just been published. A big thank-you to the lupies who contributed their advice to that.

Tuesday, 9 May 2017

Best Lupus Blogs of 2017

Sometimes, it is Lupus has made it to Healthline's list of the Best Lupus Blogs of the Year.

You've already found this blog, want to see what else is on on the list?  Here's the link: http://www.healthline.com/health/lupus/best-blogs-of-the-year#2



lupus best blogs badge
Healthline

Tomorrow is World Lupus Day, so this is your last chance to be part of the Sometimes, it is Lupus World Lupus Day event.  Email iris@sometimesitislupus.com with you first name, country, and what you would say to someone newly diagnosed with lupus. Tomorrow, I will be publishing a new resource for people newly diagnosed.

Want to support this blog? You can become a patron for $1 a month.  (Patrons receive a free electronic copy of each new book I produce.)  Become a patron here: https://www.patreon.com/IrisCarden.

Friday, 5 May 2017

Lavender Lunch



The Autoimmune Research and Resource Centre is holding a Lavender Lunch
for World Lupus Day in Lambton, New South Wales.

For more information email www.autoimmune.org.au 


The Tooth, the Hole Tooth, and Nothing...

It should have been a good thing. My son and I went to the movies to see the new Guardians of the Galaxy movie.  It was great - especially Baby Groot.

What was not great was the popcorn - I bit on a hard an unpopped corn kernel.  I felt a filling in my tooth crack.  Because it was a busy week, I thought dealing with it could wait.

Two days later, the filling simply fell out. So I called the dentist.

It wasn't good news.  It wasn't just the filling that cracked, it was the whole tooth, down to the bone.  After a couple of needles, and lot of pushing and pulling it was good-bye tooth.

So now I'm recovering with a stitch in my mouth, and apparently my options going forward are to leave a gap or get an implant.  In the back of my mind I see dollar signs flying around.

The lesson?  I'm never eating popcorn in the dark again.

Look after your teeth lovely lupies.  We have enough health issues without dental issues as well.


I've received a few tips for the World Lupus Day project, would love to have lots more.

Just email me, iris@sometimeitislupus.com, with your name, country, and what you would say to someone newly diagnosed with lupus. I'll put everyone's comments in together for a resource for people newly diagnosed.


Want to support this blog? (And maybe help with my tooth situation?)  You can become a sponsor for a dollar a month. www.patreon.com/IrisCarden

Tuesday, 2 May 2017

Some Days

Some days things don't go right. Some days, I can't even go for a blood test and have it go right.

This story begins almost a year ago, when my rheumatologist wrote out the pathology requests for tests to do before I see him again this month.

It should be straightforward - a set of blood tests that require fasting, and a poo test.

Fast forward about six months, and I went to the doctors for a fresh prescription. My usual gp was away, and the one I saw decided I should probably have a cholesterol test.  She said not to worry about an extra trip to pathology. She said not to worry, save it until May when I was doing my other tests.

So today came. I skipped breakfast, just drank warm water to try to get things moving.

Normally, I have breakfast, and need to poo almost as soon as I've finished.

No breakfast, no poo.

So, it was 11.20am before I could go to the pathology collection place. Then I had to wait my turn.  It was 11.50am before I got in.

First issue.  Medicare rules don't allow pathology orders from two doctors on the same day.  So I said skip the one from the fill-in GP, just do my specialist's ones.

Second issue: Have I been fasting? Yes, I have.

When did I last eat? Well, I went to bed about 7pm, so it was a bit before that.

She can't do my tests.

Why?

I've fasted too long. All the results will be messed up.  I can't fast more than 16 hours.

What am I doing tomorrow?

Seeing my GP.

What time? 8.15am. I could do the test after that.

Could I go to bed later than 7pm?  Not if I want to get up in the morning.

Then I'd do the test before the doctor. I can stop in at 8am and do my blood tests on the way there, she'll make sure I'm the first patient through so I can get to the doctor in time.

All of which means I didn't get to eat until lunchtime today, and tomorrow's not shaping up to give me the chance to eat before lunchtime either.
Want to be part of the World Lupus Day activity on Sometimes, it is Lupus?  Email iris@sometimesitislupus.com with your first name, your country, and the advice you would give someone who has just been diagnosed with lupus.  I'll put everyone's advice together.

Wednesday, 26 April 2017

Flu Season's Coming

Yesterday was ANZAC Day, which means a few things. (No, I'm not talking about the ANZACs or the families who would have preferred their sons and husbands to be coming home, rather than becoming legends.)

It means we're about midway through autumn, so the weather is about to get colder.

It also means it's time to get a flu shot.

The flu shot won't give you protection against every sniff and sniffle going around, but it will give you some resistance to the most kill-ey versions of the flu that are expected to come around this flu season.

For lupus patients (and patients with other immune-compromising diseases) can go to our doctors to get the flu vaccine for free, under the National Immunisation Program.

It's worth asking family to consider getting a flu shot as well.  Them being protected also helps us to be protected.  For family members who aren't covered by the Program, it's possible to get a flu shot fairly inexpensively from a pharmacy or a doctor's surgery.



Want to be part of the World Lupus Day activity on Sometimes, it is Lupus? Email iris@sometimesitislupus.com your first name, your country and the advice you would give someone newly diagnosed with lupus.

I'll put all of the advice together in a resource to be published on this blog on World Lupus Day, 10 May 2017.





Would you give $1 a month to support this blog?  You can become a patron for as little as $1 a month (up to any amount you choose.)  As a thank-you gift, I'll send you a free electronic copy of each new book I release.