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.


Thursday, 20 April 2017

Out Of Order

I've been utterly useless for almost any purpose for at least a week now.

I've been sleeping at least 18 hours a day, and been exhausted for the time I've been awake.

I've missed things I wanted to do - I didn't get to church for Good Friday, or Easter Sunday.  Last night I was woken by a phone call - because I just hadn't turned up at a trivia night I had been going to with friends from my Toastmasters' Club.  (I completely forgot - and couldn't gather the energy to go if I'd remembered.)

I've moved from the bed to the couch and back, and done very little else.

Right now, I think it's time to stick an "Out of Order" sign on my head until further notice.

My brain's not functioning.  I've sent text messages to the wrong person, and been totally confused about basic things.

I regularly warn people how unreliable I am.  However, when they know functioning Iris, they don't really understand just how bad zombie lupie Iris can be, not until they meet me in this state.
My dog understands.

My dog, however, always understands. Whether I'm functioning properly or not, she's always happy to just be with me whether I'm doing things or just lying around.

Hopefully, in a few days, I'll start to get some energy back, because there's lots of things I'd rather do than just sleep all day.

Until then, I'm putting the tv on and lying on the couch.



Have you ever envisioned yourself as a patron of the arts, but don't have the money of a Medici? Patreon is the 21st century way of sponsoring artists of all types. You can be a patron of my writing for as little as $1 a month.  Patrons will receive electronic copies of each new book I write. 

Tuesday, 18 April 2017

Give Aways - Lupus Care Packs

The contents of the lupus care packs.
A couple of weeks ago, I told you about lovely Corry Ang who brought lovely Lupus Care Packs to Lupus 2017.

It was an absolutely lovely gift for all of us.

I've received a message from Corry, who tells me you could have one if you like, too.

She has about fifty packs left over.

If you would like one, email your address to:
lupuscarecommunity@gmail.com or visit the her website for more information: www.lupuscarecommunity.wordpress.com.

(Remember, Corry is in Australia.  I don't know if she is able to send overseas.)

Of course, if you know a lupie who really needs a lift, you could email their address to Corry as well.

Corry has put a lot work, time, money, and organisation into these beautiful packs, to show some love and support to the lupus community.


Have you ever envisioned yourself as a patron of the arts, but don't have the money of a Medici? Patreon is the 21st century way of sponsoring artists of all types. You can be a patron of my writing for as little as $1 a month.  Patrons will receive electronic copies of each new book I write. 

Thursday, 13 April 2017

Dry Mouth is Not Just An Inconvenience

How's your mouth? Any ulcers, teeth hurting, dry feeling, always thirsty, just plain uncomfortable?

Dry mouth is annoying, and distracting, making it hard to concentrate on pretty much anything else, but it can cause serious issues too.

If you like having teeth, don't want infections,  of just don't like pain, you really need to do something about it. I treated it as just a nuisance, until I read a post about it by Dr Donald Thomas (the Rheumatologist who wrote The Lupus Encyclopaedia.) He made it more than clear that dry mouth is something we really need to treat seriously.

Now, I'm getting serious.  I talked to my dentist, and have gone from annual to twice-yearly dental check-ups.  I use a dry mouth toothpaste and mouthwash.  I also carry a dry mouth spray in my handbag, and keep a tube of dry mouth gel by my bed.  (The gel is squeezed on the tongue, and the tongue used to coat the mouth with goo.)

Specialist dry mouth toothpastes and mouthwashes are more expensive than the standard ones, of course. But on the other hand, I haven't had mouth ulcers since I started using them. I'm still bothered by the dry feeling in my mouth, but the pain isn't such a nuisance.

I tried using sugar-free gum for a while.  That does help with dry mouth, but there's a limit to how much I can use.  Sugar-free gum is sweetened with a product that acts as a laxative, and I already have gut issues.  So it's good, but needs to be used sparingly.

Have you ever envisioned yourself as a patron of the arts, but don't have the money of a Medici? I'm told Patreon is the 21st century way of sponsoring artists of all types. You can be a patron of my writing for as little as $1 a month.  Patrons will receive electronic copies of each new book I write. 

Wednesday, 12 April 2017

Good News/Bad News

Last week I posted about the weight and health check station at the pharmacy, and how, after the initial weight loss when I stopped taking steroids, it's going to start being work to get my weight under control.

I did another check in today, and it was one of those good news/bad news stories.  The good news is I lost about 5kg last week. The bad news is my overall health score dropped from 3.6 to 2.5.

That happened because my blood pressure and pulse rate had gone up. I can explain that.  Last week I was using my scooter at the shopping centre.  This week, I tried walking.  That's what increased my blood pressure and pulse rate: exercise. With the pain and exhaustion that followed from being on my feet for about two hours doing the weekly shopping and odd jobs, I think next week I'll go back to the scooter. So next week my blood pressure and heart rate will be my resting rate again.

I will keep my exercise to the Lupus Exercise workout a couple of times a week, and a bit of pottering in my garden.

Really, the balancing act between doing enough to care for my health, and over-doing things and making myself sick, is a challenge I struggle with every day. I know other lupies struggle with this too.  It's a tightrope we all have to walk, and the consequences of doing too much or too little can be greater for us than they are for healthy people.

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.

Tuesday, 11 April 2017

Patreon

You've probably noticed the Patreon link appearing on the end of each post.  If you haven't
encountered it before, Patreon is a system for people to support writers and other artists.  It's kind of like a continuing kickstarter or gofundme.

Patrons pay creators of blogs, art, music, etc, a set amount per post or per month.

So why would you become a patron of my writing? Here's a few reasons:
  • You love to read one or more of my blogs, and you think $1 or even more per month is good value for the information or entertainment you get out of them.
  • You want the rewards: for $1 per month, you will receive a copy of the electronic version of each new novel I write.  
  • More rewards: for $10 per month, you can be a Beta reader - you can read early drafts, and have the opportunity to give feedback and comments, as well as the $1 reward.  
  • Even more rewards: For $100 per month, you get to be a Gold Star Patron, and will be acknowledged on my blogs, and in future novels (as well as the $1 and $10 rewards).
  • You just think it would be cool to be able to call yourself a patron of the arts.
  • You can spare $1 or so a month, and think my writing is as good as anything to spend it on.
  • You adore the mrbumpycat.com animals, and would like to help fund their adventures.
  • You have lupus and sometimesitislupus.com helps you feel less isolated.
  • You enjoy short fiction, and like to read storiesontherun.com.
  • You find worship-services.blogspot.com is of value to you.
  • You really want to be the first to read my next novel.

For whatever reason.  If you want to sign up as a patron of my work, you can do so here: www.patreon.com/IrisCarden.

Don't Say It!

There are some things you should just never say to someone with lupus.


  1. Everyone gets tired. Lupus fatigue is far more than just being tired. Imagine having heavy weights hanging off your legs, feet, hands, arms and head - all day every day.  That's what dragging our bodies through life feels like.
  2. At least it's not cancer. I have a horrible illness that may kill me, and means I will take toxic drugs (some of which are the same ones given to cancer patients) probably for the rest of my life, can attack any organ without warning, and makes me sick each and every day.  No, it's not cancer.  People with cancer have a rotten time, but so do people with chronic illnesses.  
  3. You should put more effort in. Some days, just getting out of bed takes all the strength I can manage. I do my best, and I already feel guilty for all the things I can't do.  I don't need your judgement as well.
  4. You need to take something to boost your immune system.  My immune system is what's killing me. It doesn't need any help.
  5. I know someone who can cure it. No, you don't. You know someone who wants to sell me snake oil - who wants to take advantage of me, because they think I might be desperate enough to be vulnerable.
  6. A friend of mine had that but they were cured. So far there is no cure. Your friend is either in remission, or was misdiagnosed.
  7. Why don't you try... My life is in danger here.  I don't have to justify to you why I choose to do as my doctors say.
  8. You need to get out in the sun more. Sunlight makes lupus worse.  Think of me as the vampire you know.  I'll stay out of the ultraviolet light as much as possible, thanks.
  9. All those drugs you take are dangerous. I know. They're horrible. The only thing worse than taking them, is not taking them.
  10. You should get more exercise. I have a limited amount of energy for the day, once I've used it it's gone.  I will use my precious little bit of energy on whatever seems most important to me.
  11. You don't look disabled, you don't need a disabled parking space. You don't look like an idiot either. I guess there's some things you just can't see.
  12. You don't look sick. I'm so awesome, I can look well, while my whole body is falling apart.  That's my superpower. What's yours?

Monday, 10 April 2017

Lupus Fatigue

You know what it's like, a healthy person complains of being tired, and you wish that "tired" could be a temporary thing for you, the way it is for them.

Chronic illness fatigue just isn't like any other kind of being tired.

It's more like Sisyphus would feel after an eternity of pushing a boulder up a mountain.  (Of course, according to the myth, he earned his punishment.  We didn't do anything to deserve this.)

We wake up tired and go to bed exhausted, and in between we fumble through life as best we can.

Sometimes, we manage to fight the fatigue and get things done.  But that usually catches up with us in the end.


Have you ever envisioned yourself as a patron of the arts, but don't have the money of a Medici? I'm told Patreon is the 21st century way of sponsoring artists of all types. You can be a patron of my writing for as little as $1 a month.  (Only if you can afford $1 a month.)  Patrons will receive electronic copies of each new book I write.