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.

Saturday, 22 April 2017

When Lupus is Unbearable

Trigger warning: discussion of suicide.


Lupus is a horrible disease, which makes life thoroughly miserable at times.

So when I found out that a lovely lupie I've had a fair bit of online contact with  chose to end her life recently, I fully understood that choice. Lupus caused her death, even though that's not what will be listed on the death certificate.

There have been times I have considered a half-formed plan in case lupus became unbearable. I've talked to other people with chronic illnesses who have had similar ideas. Strangely, having the reassurance that there's a way to stop things being unbearable, makes things easier to bear.

Lupus takes so much away from us: health, the ability to work, the ability to rely on our own bodies and minds, and replaces those things with fatigue, physical pain, and a sense of guilt about all the things we can't do.  That's aside from the risk of organ failure, the constant blood tests, visits to multiple types of doctor, a whole life that at times seems to be built around a disease.

When lupus is really bad, and organs do fail, and pain is worse than usual, just opting out of everything can seem to be a solution.

The discussion of voluntary euthanasia has been going on in Australia for years. Years ago, I was totally against it.  Now, after a few years of living with lupus, I get it.  Now, I think with some proper safeguards, it could be a good option. There would need to be a way to ensure that people weren't pressured by others into making the choice, and to ensure that it wasn't a result of depression.  (Depression is bad, I know from experience, and when you're at the bottom of the pit, it can seem like the pit is all that there is; but with support, medication, counselling and plain old determination, people can and do climb out of the pit and back into the light.)

What keeps us from all taking the option of ending our lupus and everything else? There's a few things:

  • Hope.  One day some scientist is going to work out that this tiny change to that tiny gene or whatever is the solution. Lupus is going to be cured and we're all going to go back to normal lives. We want to be around to see that happen.
  • Love.  Each of us, no matter what lupus has done to us, have people we love and who love us.  Those people would be devastated if we died. When we have a choice, we live for them.
  • Faith. Viktor Frankl observed as an inmate of Auschwitz, that those who found meaning despite their suffering coped far better than those who did not find meaning. Whatever or whoever we have faith in, wherever we find our meaning, helps us get through things that would otherwise be unbearable.
  • Future. Sure, things could get worse.  But they could also get better.  I can hold out a bit longer and find out which.
  • Present.  Is this a "right now" thing, that will improve tomorrow or next week?
  • Past.  I've been through bad things before.  If I could get through those, I can get through this bad thing that's happening now.
  • Community. None of us is alone in this.  We belong to a community of people with lupus. Whatever we are going through, there's someone else who has been there and done that.  
  • Stubbornness.  The simple determination to not let this dumb disease win.
  • Support. Sometimes talking things out with someone, or having a friend or family member come in and catch up the washing we've been too sick to do, is all it takes to make the situation bearable after all.
Suicide is an understandable, and even in some cases reasonable, response to an incurable illness, but if you're considering it, I'd ask you not to take the decision lightly.  First step back, and look at the whole picture of your life and the network of the people your life impacts on.  Talk about it, with fellow lupies, with your doctor, with your family, with a counsellor. Don't make this decision hastily, or alone, or in the pit of depression.

If this post has raised issues for you, and you need to talk about it, you can call Lifeline on 131114 from anywhere in Australia.



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.

Friday, 21 April 2017

World Lupus Day Event - Please Be a Part of It

World Lupus Day is coming up.

Here's what I'd like to do as our WLD event on sometimeisitslupus.com.

I'd like all you lovely lupies to send me your best advice to someone newly diagnosed with lupus.  So email me iris@sometimesitislupus.com with your first name, the country you are from, and the thing you would most want to tell someone who's just been diagnosed.  (Oh, and write in the email that you give me permission to publish that information.)

Think of the things you wish someone had told you when you were diagnosed.  Let's see if we can put those things in a resource that will help someone else.

Please try to get your email to me by 9 May (Australian time - so that would be 8 May US time) so that I can have it collated and ready to go on World Lupus Day - 10 May.

(Oh, and it's yet to be confirmed, but I may have something nice to give to the person who gives the piece of advice I like the best.)

The novel I'm writing at the moment has everything: zombies, romance, a mad scientist and a sinister mystery.  Patrons of my writing will get an electronic version of the book, before it is released to market. You can become a patron of my writing; my books and blogs, for as little as $1 a month.  Just follow the link below.