Love this Blog? Endorse Me!

Sometimes, It Is Lupus has been nominated for a Wego Health Award.

The specific award nominated this time around is Best in Show: Blog.

If you love this blog, please endorse (vote for) me, by clicking below or on the badge on the right-hand column.



Find my nominee profile here: https://awards.wegohealth.com/nominees/14081.

Recognition

Here's some news for Sometimes, It Is Lupus:

One of my earlier posts has been republished as an article in iPain Living Magazine.
The original post is This Little Lupie Went Wee Wee Wee.

And it's also made Healthline's list of Best Blogs for 2018.

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.

15 Lupus Blogs You Should be Reading in 2016

Health Listed has come up with a list of 15 Lupus blogs they think you should be reading.

You can find out who the other 14 are here.

Five Years of Sometimes, it is Lupus

Sometimes, it is Lupus is five years old today.

Yes, five years ago today, I wrote my first, hesitant, post, not knowing if anyone would read it.

I don't know that I expected it to last this long. I don't even know that I expected to last this long myself.

One of the initial reasons I started blogging was to make money, in five years, I've made less than $200.  So that's not funding a big party to celebrate five years in business.

Another reason was to tell people who didn't know about lupus about this disease.  It turns out that almost all my readers actually have lupus or are personally touched by it in some way (a family member or close friend has it.) So actually I'm not telling anyone anything new.

Looking at its original goals, this blog's been an abject failure.

I keep writing, because I've discovered those goals were second best.



I've gained something much better than money, however.  I've gained a community.  The people who read this blog, who make comments, who speak with me on social media, remind me constantly that I'm not facing this rotten disease alone.  Whatever happens to me has happened to someone else, and will happen to yet another person.  We're all in it together. And for me, that's important, because one thing chronic illness is really good at is making me feel alone.

So dear readers, thank you for the five years of ups and downs that we've shared.  Hopefully, we'll have many more years to share as well.

And if you were thinking of a birthday gift?  Can you spare a fiver?  On the right-hand column of this blog, you'll find a couple of organisations that are busy doing lupus research.  Choose one and send them five dollars in honour of five years of this blog. If each of the  4000+ people on the Sometimes, it is Lupus Facebook page sent five dollars to lupus research that would be .... not nearly enough .... better all send ten.

Healthline's Best Lupus Blogs 2016

Healthline

Sometimes, it is Lupus has made it to Healthline's list of top lupus blogs again for 2016.

To check out the other blogs that made the listing follow the link here: http://www.healthline.com/health/lupus/best-blogs-of-the-year#2

Top Lupus Blogs of 2015

Healthline

You may have noticed the new badge on the right hand side of this blog. (There's a copy of it above, in case you missed it.)

For the third year in a row, Sometimes, it is Lupus made it to Healthline's list of best blogs.

I think it is the only Australian blog on the list.

According to the email they sent me, that's judged on quality, frequency of updates, and contribution to the community. 

So given the many ways lupies who read this blog also contribute, and form a community, thank you for making this something that was considered worthy of the list.

Oh, and if you haven't already, why not take a look at the other blogs listed?  

Apology, if needed

This message (sender's name deleted) was sent to the Sometimes, it is Lupus Facebook account....

I can't believe you people call yourself christian and you denying other religion into your group telling them they make you sick the fact that they practice another religion ill like to know what kind of bible you own I tought this was a free religion country telling people tey make you sick because they pagan a real christian would try to convert you are out. Of respect sickness has nothing to do with religion, or gender, or color I hope you get hit so God doesn't preach that you are fully ignoran and stupid and you certainly not preaching the bible you are holy mother...

Now, while I don't make a secret of my personal faith, I certainly don't intend to disrespect anyone of any other faith.

The only thing I tend to censor as it comes into the Sometimes, it is Lupus social media pages or in comments on the blog, is when people give "advice" that suggests lupies should abandon their medical treatment (especially without consulting their doctors.)

While I was in hospital chaplaincy, I worked as part of a multifaith chaplaincy department, and I would hate to think I have disrespected anyone's strongly held faith.

If I have done so, I apologize unreservedly.

Well, Bloggone It!

Why do I blog about lupus? Isn't just living with it bad enough? Why write about it as well?

(Yes, this is a meta-post, I'm blogging about blogging.)

When I was diagnosed with lupus all I knew about it was what I'd learned from watching House on tv.

Despite what you might think from House, however,  lupus is quite common.  Knowing about it isn't so common.

So I set out to learn about my condition, then decided to find a way to share what I was learning to help   raise awareness of a disease that although common, is not very well understood by the community.

What the blog has developed into, however, is something different.

I found that the people reading it weren't generally people who were wanting to find out something about a condition they'd just heard of.  Most of my readers were people with lupus, or a similar chronic condition, or people who had friends and family members with lupus.

Readers started saying things like "you say what I was trying to say."

That's when I took Sometimes, it is Lupus into other social media as well as the blog, as a chance to interact more with readers.

I realized that what was really needed was a chance for lupies to know they were not alone, and to be able to express what life was like for them.

Now the blog is still about my life with lupus, but it has an added dimension.  Through social media, I'm also  listening to other lupies, and trying to bring their experience into the blog as well.

Now, Sometimes, it is Lupus, isn't just there trying to tell the healthy population what lupus is, and it isn't just me saying "this is what this disease is doing to me", although it still does both of those things.  It's also an opportunity to give a voice, if only a small one, to a community of people who might otherwise feel isolated and alone.

Want to join in the conversation?
Find Sometimes, it is Lupus on Facebook, Twitter, and Google+.


This post written as part of a blog carnival hosted by Restoring Quality of Life. If you'd like to see how other bloggers responded to the same topic, the blog carnival is here.

Blogiversary

I totally missed it. I blame brain fog for that.  But I had a blogiversary this month. As of the 16th of May, sometimesitislupus.com is two years old.

There are times when it feels as if this site has been part of my life forever, and times when it seems like I only started out yesterday.

For all those lovely lupies, and supporters, who have been part of Sometimes, it is Lupus in any way over these two years, through reading and commenting on the blog, or being part of the community on Facebook or Google+, sharing on the Warriors' Wall, or the Business Directory, thank you. It's  been a great privilege to share these last two years (or parts of the last two years) with you.

Something New

My birthday present.

This is my first post from my new computer!

The old one was slowing down incredibly, and struggling to do basic things.  So my birthday gift from each of my kids was money towards this new one.

That may not be especially exciting for you reading this, but I can assure you that writing is much easier if the letters are appearing on the screen as I type them, and not 30 seconds later (and often in a different order. I was beginning to think I'd forgotten how to type, but no, it was just the old computer struggling to keep up.)

But that's not all that's new this week.  On Friday, which is World Lupus Day, the Warriors' Wall goes live.  Lupies from all over the world, in their own words, get to share what they want the world to know about living with lupus.  (This is an ongoing project, so if you have something to share, you can still submit it, now, or even after the page goes live.)

And that's still not all.  (Is this starting to sound like a bad informercial yet?)

Did you see last Friday's Towards A Cure post? (If you haven't read it, you really should. It's the most exciting post I've done.) I've just had an email from the John Curtin School of Medical Research. By the end of the week (so hopefully, to go live by World Lupus Day as well) they will have the link ready so you will be able to donate money directly to their Lupus research.  Wouldn't it be cool, when we finally get a cure, to be able to say: "I helped on that project." (And let's face it, if you give them a couple of dollars, you will really have helped.)

It's Not Just The Patient

lupus.cheezburger.com

I was meant to do a comment on someone else's post as my HAWMC topic for today.

Well, you can guess what happened, I started reading other blogs, and continued reading other blogs, and
that took up all the morning....

So getting back to this in the early evening, I still haven't found a post about lupus to put a comment on as such, but this post has been bothering me all day....

It shows just how far-reaching the effects of a chronic illness can be.

I found this in Dr Shashank Akerkar's blog (he's a rheumatologist, whose blog actually covers two websites Arthritis Support Board and Arthritis Support Board 2.

Take a look at this post of his:  Help Me Help This Lady with Ankolysing Spondylitis. Go on, I'll wait here until you get back.....

Pretty awful situation, huh?  My heart just breaks for this woman.

It's a very different culture from mine, and AS isn't the same as lupus, but do you know what? There's some things that are the same no matter where you are and no matter which horrible chronic illness you're dealing with.

A chronic illness doesn't just affect the patient.  It affects our families, our friends, everyone who is close to us. And it can destroy relationships and marriages, if the healthy partner is not willing to accept the other's limitations.

There's no going into a new relationship and keeping an illness a "secret" - it will become obvious with the next flare anyway, and then it looks like we've been trying to con the other person.

From personal experience, I can tell you that long before my lupus was diagnosed, my ex-husband was simply convinced that I was lazy. When I tried dating for a while, I ensured I was always up-front about my condition, so as not to have unpleasant surprises for anyone. (And certainly didn't need to go through all the attempts to try to do more so as not to look lazy.)

I've reached the point where I've realised that it's just easier for me to not be in a relationship. No boyfriend/husband means I'm not letting someone down and not irritating them by the  things I can't do. And I'm not risking my health trying to please someone else.

The story hasn't been the same for everyone I know with a chronic illness. I know of some lupus patients who have married, and whose partners are incredibly loving, supportive and understanding. Having a successful relationship is clearly possible, but it does take work, and it takes a lot of grace from the healthy partner.

This post written as part of Wego Health's Health Activist Writers' Month Challenge.

And the Award Goes To....

Have you seen those blogging "awards" given by one blogger to another? They're a nice idea, and it is nice to know that another blogger thinks you're worthy of an award, but there's so many strings attached - you have to answer a set of questions, acknowledge where you got the award from, and forward it on to so many more bloggers. It's kind of like a chain letter or email.

Today, I'm inventing my own blogging (well, on-line advocacy/awareness) award for lupus.

There's no catch to this one.  The recipients don't have to formally accept it, they don't have to pass it on, they don't even have to tell anyone they got it if they don't feel like it.

The judging criteria for the award is simple: I'm impressed with something you've done. (That's nice and objective isn't it?) It will be awarded on an irregular basis, whenever I feel like it.

Without further ado, the Inaugural Too Many Pills Awards for Lupus Leadership go to.....

For keeping lupies entertained and informed simultaneously, an award has to go to Atlanta Titus at World According to Lupus on Facebook and on Twitter and Pinterest.

For encouraging people to advocate for all kinds of Chronic Illness through her Chronically Awesome Facebook page and the Blog Support Daily, and award ought to go Jules Shapiro.

And for always being there whenever a lupie needs someone on Twitter, I think I'd give an award to Sheri (Lupus Diva)  @osaxy on Twitter.

There's lots more I'd like to give an award to, so maybe the Too Many Pills Award for Lupus Leadership will become a regular feature of sometimesitislupus.com .

This post written as part of Wego Health's Health Activist Writer's Month Challenge.

The Big, Bad Wolf

Teeshirt design available from
Iris' Shirt Shop

Today's Health Activist Writer's Month Challenge topic asks what animal would represent my condition.

This question's come up in the HAWMC or the National Health Blog Post Month once or twice before.  If you don't remember, check out these posts:

Sometimes It Is Lupus: Fighting The Wolf

Nov 16, 2022

And regularly, far too regularly, we find that the wolf taken down another of our number. A post on social media, a conversation with another lupus patient, and we find out that the wolf has killed again.

Sometimes It Is Lupus: Health Writer's Month: Facing the Wolf - Alone

Apr 23, 2022

Health Writer's Month: Facing the Wolf - Alone. Today's topic is: Health Activist Choice Day 2! Write about whatever you like. I'm having coffee tonight, with my ex-boyfriend. That's got me thinking, OK crying, about what I'm ...

Sometimes It Is Lupus: Health Blogging Month Day 24: My Mascot

Nov 24, 2022

But, we're also taught, through the adventures of Red Riding Hood, Peter and the Wolf, and the Three Little Pigs, that if you're smart, hardworking, have someone strong on your side, or just plain lucky, you can beat the wolf.

Health Writer's Month: Who's Afraid of the Big, Bad, Wolf?

Apr 24, 2022

But we read our fairy tales, and we know the big, bad, wolf can be beaten, eventually. Sooner or later the woodsman with the axe will come and rescue us - of course the woodsman is wearing a white coat in a lab somewhere.

Sometimes It Is Lupus: Health Writer's Month: LUPUS BITES!

Apr 26, 2022

This goes back to the history of where lupus got its name - people thought one of the rashes often involved in lupus looked like a wolf bite. But it's also what lupus is like to live with. It's savage and painful. It totally bites.

The wolf also features on one of my favourite teeshirt designs at the Shirt Shop: the Lupus Bites design.

So, guess which animal I would use to represent lupus? Yep, the big, bad, wolf.  Not a normal, actual, wolf, but the big scary, nightmare, wolf from fairy tales, the one who eats grandmas, and hunts down children and little pigs who build insecure houses. 

Every now and then he seems to give up the hunt for a while, but then he comes back to try to huff and puff and blow my house down. The sound of his voice, and those huge sharp teeth, are very very frightening, but his bite is far worse than his bark.

This post written as part of Wego Health's Health Activist Writers' Month Challenge.

Vote for Me

You may have noticed the Best Australian Blogs competition logo that appeared on this site a little while ago.

It's just changed to a "Vote for Me" logo, because the nominations have now closed, and voting has begun for the "People's Choice" award.

Any readers (anywhere in the world) can vote.

To vote, you either click the "Vote for Me" badge, or follow this link. You need to click through the form to find Sometimes, it is Lupus.

You can click on as many blog titles as you want to vote for, but can only do this once.  You'll be asked for your name and email at the end of the form.