Never Take a Good Day for Granted

It's confession time.  I may not be quite as well as I've been telling you (and myself) lately.  With my effort at eating properly and exercising almost daily,  I don't seem to have the energy to do much else.  I'm not writing much, and I'm sleeping 12 to 14 hours a night.

What I have been feeling is less pain.  And less pain is good, extremely good.

So while I can I'm going to make the most of the low pain days.

I'm going to keep exercising, and I'm going to keep being a careful to try to eat properly.

You see, lupus has taught me a lot.  One of those things is that a good day is a rare and precious thing.  It should never be taken for granted.

So while the good days last, even if I end up going to bed at 5pm, I'm going to continue trying to get my health into the best possible state before my next flare.

I recently asked on Facebook what lessons other lupies had learned from lupus, a lot are things I have also learned. I'm going to share those over the next few days. Lupus has taught us all a great deal - mostly things none of us ever wanted to know.

Doing it all wrong

Given that I've been writing this blog for more than five years,  I recently found it very disappointing to discover I'd been doing it all wrong.

I frequently get emails from people who tell me that if I hire them, they could improve my blog significantly,  one today made it very clear that it didn't just need improvement, it was a total disaster.

Here's what my correspondent said:

Dear sometimesitislupus.com Team,

Have you ever checked for sometimesitislupus.com position in Search Engine Result Pages?  If not do it TODAY! Being a contemplating Digital Marketing professional, I found some major issues with your website which are the sole causes for making hurdle to achieve your desired business goal. 

I found some major issues with your website:

·         Poor visibility Of Important and competitive keywords in SERPs

·         Stumpy image optimization

·         Unfocussed and low quality website content

·         Wrong steps followed for Social Media campaign


Our ethical Digital Marketing services with an excellent team of experts are here to assist your business and at the same time, we will fix all the above issues. Having years of experience and incorporate with latest techniques, our experts will deliver you a great result despite of Google’s latest Algorithm Updates such as Penguin and Panda.

If you want, we can send you more details regarding your present website status; we would be glad to share PRE SEO REPORT or WEBSITE ANALYSIS REPORT of sometimesitislupus.com Without any Cost.

Being at the top left of Google (Top 10 organic positions) is the best thing we can do for your company's website traffic and online reputation and there is a saying “More Traffic Leads Better Business”.  You will be happy to know that, our team is willing to guarantee you 1st page Google ranking for most of your targeted keywords in our six months ongoing campaigning period. 

If you are getting satisfaction with these proposals for your business objective, feel free to email me, or can provide me with your phone number and also the best time to call you. I am also available for online meeting to present you this website audit report.

I look forward to hearing from you.

Warm Regards,

Garry (SURNAME DELETED)

Sales Advisor

PSI:  I am not spamming. I have studied your website and believe I can help with your business promotion. If you still want us to not contact you, you can ignore this email or ask to remove and I will not contact again.

PS II: I found your site using Google search and after having a look over your website I recommend you to implement future technologies such as HTML5 and Responsive Design to make your site more accessible in mobile phone, tablets, desktop etc.

Clearly, as this expert points out, I just don't know what I'm doing.  And the mobile version of the site must not have worked for him.  Garry didn't name the organisation he was a sales adviser for. In fact his business doesn't seem to have a name at all.

What could I possibly say to this?  (Frequent readers would know I just couldn't leave this alone.) So this is what I said:

Hello Garry,

Can I make a suggestion?  When you want to convince someone you’ve read their blog, you might want to mention specifics from that, instead of generalisations?  Alternately, you could at least notice when a blog is in fact a personal blog, and neither a business, nor a company. You may even want to acquaint yourself with the “about” page that clarifies that the blog is written by one person, not a team. (Most of the offers I receive for SEO at least get that last part right.)

Oh, could I also suggest that you would appear more professional if you had a business email address, rather than a gmail address?

As a matter of note, my blog's so poorly visible, it’s amazing that you, who are clearly not a part of the niche I write for, even found it.

No, I will not be hiring you. I wish you well in your attempts to gain some employment.  

Regards
Iris Carden
www.sometimesitislupus.com

Was I too harsh? Possibly.

But do you know what?  Even feeling relatively well, at the end of the day I'm tired and in pain, and not in the mood to suffer fools gladly.  I've discovered that ignoring people soliciting for SEO (that's search engine optimisation) doesn't stop them emailing.

And if you're with Garry and find that my images are stumpy and my content is unfocussed and of poor quality, that's OK.  I wish you well as you go and find what you're actually looking for elsewhere on this big world wide web.

If you actually find that me posting random things about my struggles living with chronic illness helps you feel less alone in your struggle with chronic illness, then you are the person I'm writing for.  Yours is the opinion that actually matters.

Back Away From The Sandwich

Well, that's a big fat fail on the 30 posts in 30 days Health Activist Writers' Month Challenge.

Where have I been?  Well, mostly in the loo, and otherwise I've been on the couch, utterly exhausted, sleeping in front of the tv.

There's something really perverse about lupus.  I've spent days and days hoping I have a really bad case of gastroenteritis, or maybe dysentery.

I've also been waiting for a retest on my latest bad liver function test.  The result of the retest is that yes, it is improving, but still not great. (I was kind of expecting that, my liver function tests are always fluctuating.) There was just this nagging doubt that because I felt so incredibly sick, maybe this time it wasn't going to improve.

So that was my Easter. I didn't even get to church.

Of course, there's a glaringly obvious cause for my abdominal disturbance.  I've been eating gluten.  Not just sneaking a tiny bit now and then, but eating like a normal person.  I keep saying I'm not celiac, just gluten intolerant. It won't kill me.  Right now, it feels like it is killing me, which is probably a good reason to go back to my strict gluten-free diet.

Yes, I hear you yelling at your screen, "Who does she think she is, trying to get away with doing anything like a normal person?"

What can I say?  I'll just put this sandwich down, and back away slowly.

(Oh, a little note to those people who choose not to eat gluten, even though they aren't celiac or gluten intolerant:  Are you insane?  Do you know how much I would like to be able just to eat anything I felt like without getting sick? Having said that, thank you for making gluten free products popular enough that I can get them easily.)

Bad Habits

I have one very bad habit.  OK, I've probably got lots of bad habits. But I'm only going to tell you about one.

I bite off more than I can chew.  I have a habit of starting to do things, that I just can't get finished, because I just don't have the energy.

By now, I should know my own limitations enough to know how much I really can and can't do.

I always want to do more that I know I can.  So I frequently get started on projects I have no hope of ever







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

Today's topic: What good habits, (health or otherwise,) do you have? Do you have a routine that you follow every morning? Are there any bad habits you wish you could break? #HAWMC

Health Bloggers/Activists out there, if you want to join in the fun, find the details here.

Try a Little Kindness

It's Good Friday.  In the Christian faith, it's a time to look at love, and the cost of loving.  It's about how God loves us, even when we are completely unlovely.

Lots of lupies I have contact with have experienced terrible treatment from people who don't understand their pain and fatigue; family members who have been judgemental, strangers who have been intolerant.

I have not really had that.

I have a family who are loving, and supportive, a real joy.

I have friends who are understanding of my limits, and who are caring.

I have recently moved from one loving supportive church community, to another which so far seems it will also be loving and supportive.

Even strangers are nice to me, usually.

Special delights have been: to receive in the mail vouchers for massages - a farewell gift from my last church congregation; my daughter's partner cooking dinner for me; a stranger in a shop reaching things down from the shelf for me.

These might seem little things.  But really they are big things.

Little acts of kindness, little glimpses of love, can make the biggest difference.




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

Today's topic: We love random acts of kindness. Write about a time that you benefitted from the kindness of a stranger, or a time when you were the one extending a helping hand. How did you feel?

Health Bloggers/Activists out there, if you want to join in the fun, find the details here.

Always Look on the Bright Side of Life

No matter how bad the day is, these two little princesses
can make me smile.

It could be easy to fall into despair with all the things lupus has taken away. Sometimes I do get depressed and sometimes I am afraid of what lupus might be doing to me.

Most of the time, I aim to be happy despite the things that lupus is doing to me.

The big thing that helps is my family. My children and grandchild, and my crazy pets, make me smile no matter how sick I am. I am so proud of my wonderful family, who have been through a lot, but still support each other and me.

I could be upset about having to give up my profession because of lupus.  But I have gained something incredibly precious - I have more time with my grandchild than I could possibly have had if I'd been working. I can have playtime or story time pretty much any time I have the energy. Very few grandparents are able to enjoy all that I have.

Friends also make a huge difference.  I confess to being a lousy friend.  I've had three people I want to contact on my "to do list" for a couple of weeks, and just not found the energy.  But I know that my friends are among the most caring, loving people in the world.  Even if I don't get to see them and talk to them, I watch for their news on social media, and they are always with me in my memory.

I was baking today, and it made me think of the wonderful person who had given me the mixer I use to knead dough (can't do that with my hands anymore), the couple who made the sliding tray the mixer stands on so I can move it around the bench, and my lovely son giving me the smart watch with multiple timers for all the different things I was trying to keep track of.  Many of the things in my home have some relationship to people I care about, and everyday tasks remind me of the amazing amount of love I have been shown.

I also try to laugh at lupus.  You might have noticed that from the number of blog posts about the stupid things I've done during bouts of brain fog and fatigue.

And I use the little energy I do have for things I love doing; sewing, baking, writing, arts and crafts. Yes, I do write quite apart from blogs: you can do an author search for Iris Carden on Amazon or iBooks and find some of the things I've done.

I guess I have always believed it's possible to find happiness in any circumstance.  It goes with my Christian faith, the belief that whatever happens, I'm not dealing with it alone, Jesus is with me.  Knowing that, in Christ, love is stronger than anything lupus, or life in general, can throw at me, is a great source of happiness.

So, if I were to summarise it, love, a sense of humour and focussing on the things I can still do, are the things that get me through and help me to find happiness.






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

Today's topic: What do you think is the key to happiness? Is it being able to overcome a hard time? Laughter? Maintaining a positive attitude? Tell us what you think and why. #HAWMC

Health Bloggers/Activists out there, if you want to join in the fun, find the details here.

Wordless Wednesday

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

Today's topic: Wordless Wednesday! Since this is the start of HAWMC, post a picture that shows how excited you are for the next 30 days. We always love a good Health Activist selfie! #HAWMC

Health Bloggers/Activists out there, if you want to join in the fun, find the details here.

Lupie Cats

The HAWMC post prompt for today was to give three things I love about myself or do well.

Well, how is that going to raise lupus awareness? These prompts are getting quite ridiculous.  So glad tomorrow is the last day and I can go back to just writing whatever I feel like.

Here are some pictures of cats from lupus.cheezburger.com.

If you liked those, there's lots more lupie cats over on lupus.cheezburger.com.

I'm off to make sugar paste flowers for my lovely daughter's wedding cake. 

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

Great Lupus Facebook Pages

A while ago, I invented an "award" for on-line lupus support and advocacy.

Today, I'm sharing with you five lupus-related Facebook pages which are well worth following, and which definitely deserve an award.

1. World According to Lupus (OK, I already gave Atlanta this award, but I made up the award, I can make the rules for it.)
2. Lupus and Me 
3. The Lupus Effect
4. Mrs Lupus
5. Teens With Lupus

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

By The Book

Books I've written.
Available from Lulu, iBookstore and Amazon.

As regular readers know, I've written a book to help lupies manage our medications, medical appointments, etc.

I'm starting to think about writing another book related to lupus.  I have a few ideas.

• Butterfly Kisses would be a fictional story, about a lupus patient's attempts at romance and to live life in general around lupus.
• Fighting the Wolf would an actual look at my life and experiences, etc, pretty much based on this blog.
• The Big, Bad, Wolf would be a fairy tale, but would have one chapter of fairy tale, followed by a chapter explaining how that relates to real life with lupus.
• It's Lupus, What Now? Would be a factual, hopefully reassuring, book of information specifically for people newly-diagnosed. 
• What I Wish You Knew would be for friends and family of people with lupus, telling them the things lupies wish they understood.

OK, there's some ideas. (Please, no-one else steal them.) 

What do you think I should write first?

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

A Day Without Pain...

"What I want for my birthday?
A day without pain."

For healthy people, pain means there's something wrong.

For lupies, pain means it's just another normal day.

I'd like to think that if I had a day completely without pain, I'd spend it doing something fun, exciting, and completely out of my normal routine. But, really, I don't think I would.

Lupus has conditioned me to know that if I do too much on any one day, I will pay for it the next day.  So if I had a pain-free day, I'd probably still not do anything much different - but I would definitely savour being able to stick to my normal routine without everything hurting. I wouldn't do anything out of the ordinary, but I would enjoy the ordinary much, much, more.

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

If Only There Was A.....

After my post about abandoning the Health Activist Writers' Month Challenge, because I'd lost the topics, lovely Lorna from lifewithraisapain.com sent me a copy of them. So I guess I'm back in the game.

Lupus Book

One of the prompts I missed asks about what app, gadget or whatever you'd like someone to invent for your condition.

I actually faced this issue last year. I wanted some way to keep all my information about lupus in one place. Somewhere I could easily note questions for the next appointment with whichever doctor, could track what I had to do before the next appointment, etc.

Because I kind of grew up with the idea that if you see a need, you're elected, I did something about it.  I don't have the skills to make a phone app, so I wrote a book.

You can see the layout in my earlier post Lupus Book.

This first edition has sections for keeping a schedule of medications; emergency contact information; doctors' contact information; questions, changed symptoms, notes, etc for doctor's visits. Mine has post-it notes sticking out of it everywhere - one  post-it for each doctor, as I put a new appointment in the book, I move that doctor's post-it to that page where the next appointment is listed.

I've been looking at changes for the next edition to include a more detailed medication section (sufficient to allow someone else to do the pill sorting if need be) - which was suggested by a pharmacist. I'm also thinking of doing a shopping list section, for trips to the pharmacy.

It's a bit bulkier to carry around than a phone app, but I can paperclip referral letters, prescriptions, etc to the relevant pages (which I couldn't have done with a phone app.)

It works for me.  I haven't heard back from any of the people who have bought it, but would love to know if it works well for other people, and what they'd like to see different in the second edition.

If you think it might work for you, it's only available on the internet, and is cheapest directly from the publisher.  Find it at http://www.lulu.com/spotlight/IrisCarden.

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

Close Enough

lupus.cheezburger.com

Well, I don't know whether to blame brain fog or a psychotic computer, but I've lost the prompts for the
Health Activist Writers' Month Challenge. It wasn't on my computer any more when I turned it on yesterday.

So this time around, I'm not finishing the whole challenge, but hey, I made it three-quarters of the way through.

There was a time that not finishing something would have bothered me. That was back when I was a perfectionist, and always expected the best from myself.

Lupus has taught me to accept a lot.

I now know that:

• It's better to find the easy way to do things.
• Close enough is usually quite good enough.
• If the worst consequence of a mistake doesn't actually maim anyone, the mistake wasn't that bad.
• Procrastination is sometimes a survival mechanism.
• Not all problems have solutions. So I'm not a failure if I can't solve everything.
• Plates, cups, etc, even the ones marketed as unbreakable, will break when they randomly attack me. It's just stuff. It doesn't matter.
• If I can find one good thing about a day - it's a good day.
• I don't have to be the best at anything I do. It's OK just to be me.
• Little things are worth being happy about, but not worth getting upset over.
• Housework is never actually finished, so there's no point in feeling guilty about not getting it all done.
• I need to find ways to enjoy the life I have now, because any wonderful future I plan might not happen.
• Even if I don't get out much, the internet enables me to have a social life, and to know some wonderful people.

The Little Things

Yesterday, I posted about depression, so it makes sense that today should be a little more positive.

Mr Woof - the old dog who just likes to be wherever I am.

There are some things that do make me feel especially good.  Not just the big things, like the amazing friends who gave me money and loaned me money for the move. (Which would have been pretty much impossible without them.)

Sometimes, it's a little thing that really makes my day. Sometimes, it's just the old dog who likes to be with me wherever I am, or a text message from my daughter. It's sitting with my son having a coffee and talking about what's on the news. It's my wonderful friend/upstairs neighbour/landlady bringing me a week's supply of vegetable soup because I have a cold. It's practicing the art of being a cat bed. It's getting a royalty payment of $8 for the month from my publisher, and realising someone has thought enough of something I've written to actually buy it. It's another lupie sending me a supportive message or saying they appreciate something I've done.

I could spend my life miserable about being in pain, being tired all the time, not knowing what the future will hold. But there's too much good in  my life to be miserable. And often it's the little things that make me happiest.

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

Blooming Adversity

Today's #HAWMC topic was a quote from Mulan about flowers blooming in adversity....

lupus.cheezburger.com

Do you know what I do in adversity? I go back to bed.

Seriously.

Lupus is bad enough.  I don't need to push myself when it's flaring, because that would make it even worse.

And if I have something like, a head cold, and push myself through that, it could bring on a major flare.

Right now I have a head cold. I'm rather glad I had a flu shot, because I can tell you a head cold is quite bad enough.

So I'm going back to bed.

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

Lassie, Get Help

Let's talk about a serious issue today.

Depression is a pretty common experience for people with chronic illnesses.

I've heard there's a difference between clinical depression - caused by unbalanced brain chemicals, and reactive depression - caused by a reaction to overwhelming circumstances.  From experience, I think it's probably usually a bit of both.

There is an element of "this is the circumstance I'm in, and if I look at it in another way and use CBT (cognitive behavioural therapy) skills, I can work my way out of it."  But there's also, for me at least, often a need for the medication as well.  I know there was once a stigma about taking anti-depressant medication, but honestly, I can't see depression as all that different from any of my other symptoms and I take medication for them, so why not this one as well?

For me, depression is something I can visualise as like being at the bottom of a deep pit or well. There's daylight up there, but it's just so far away. (And the worse things seem, the further away it is. ) When I'm in the bottom of the pit, I can understand how some people can give up and decide it's all too much.

I can't give up. Too many people would be hurt if I did.

So, I have to climb, no matter how hard it is, to drag myself out of the pit.

The tools I use are prayer, medication, and cognitive therapy.

Cognitive therapy works on the idea that how we think about a thing affects how we feel about it. Sometimes we have to look at our thoughts and assumptions and realise that they're faulty, before we can feel better about them.  One of the best resources I have found for an introduction to cognitive therapy is Dr David Burns' book Feeling Good: The New Mood Therapy.

Here's a quick summary of the kinds of faulty thinking that lead to depression:

1. All or nothing thinking.  This is the thought that if I'm not perfect, I'm no good at all. Or one bad thing happened today so the whole day is a disaster. I messed up on my diet at lunchtime, so I may as well just chuck it in for the whole day, week, month, for ever....  It's faulty thinking because the real world isn't usually black and white. It's shades of grey.  And close enough is very often  good enough.
2. Overgeneralization. This is the thought that this one little example is the whole of everything. An example might be: the cat is always puking on my bed.  In reality, he's seven years old, and he's done it probably three or four times. If I'm going to look at the reality of the situation, that's far from "always" happening. This is the thought process that takes one person saying something mean to me and turns it into "everybody hates me".  If you step back and look at it, it's obviously not true. In the real world, one little thing (or even one big thing), is just that one thing, it's not everything.
3. Mental filter.  It's possible to get into the mindset of just seeing everything as bad, or that something not living up to your expectations is a disaster. Take the student who usually gets High Distinctions, who discovers they have a Distinction on a subject.  For a person with a mental filter which says if they are smart they will always get High Distinctions, that is a disaster and they are dumb.  For the student who always gets by on Passes, that Distinction is an amazing thing to be coveted. Sometimes, we can't see the truth because of our filters. In the real world, we sometimes have to ask ourselves if this really is the way we're seeing it, or if we're applying some unrealistic filter.
4. Disqualifying the positive.  This is the faulty thinking that says none of the good stuff matters because this bad thing happened. For an example I'd like to tell you about a small boy I babysat recently.  He had been in trouble for some naughtiness just before I took over, and was crying about it. When I asked him what good things had happened that day he said, "Nothing good happened. Mum yelled at me."  Then I asked about specific things I knew his family had done. He agreed that he'd gone to the playground and had a great time, and had lunch at McDonalds and enjoyed that, and then been for a ride on his scooter, etc, etc.  He'd had a great day. But until he was specifically asked about it, all he could think of was the one bad thing that happened. In the real world, if what happens to us is 90% good and 10% bad, we're doing pretty well. 
5. Jumping to conclusions. There's two parts to this: Mind reading and Fortune telling. Mind reading is when someone does something and I think this is about me. You can identify mind reading when you find yourself thinking "they're doing this to me".  Most of the time, they're actually just doing what suits them and may not even have any knowledge or interest in how their actions affect me.  In the real world, I am not so important to other people that all their actions are designed specifically to affect me. Fortune telling is when we decide we can predict the future. (In depression, we predict the worst possible). Fortune telling will say something like this: this flare is going to go on for ever and never get any better, I'm just going to get sicker and sicker and more and more miserable. It ignores that flares are unpredictable, and decides the worst possible scenario is what will happen.  In the real world, we don't know what tomorrow brings. Things, both good and bad, can happen unexpectedly. 
6. Magnification and minimization. In a depressed mindset, it's easier to make bad things bigger than they are and good things smaller than they are, especially things about ourselves. Magnification is when your own faults or fears are bigger than anyone else's and they overpower everything else, it's when I don't deserve friends because I let one down and couldn't go out because I was sick. Minimisation is when we make our good qualities small and unimportant, it's when I spend days working on something for someone, but it's no big deal, it's not like it was anything special. In the real world, most of us are no better or worse than anyone else. We have good qualities and bad, and unless we're serial killers or something like that, we're probably more good than bad.
7. Emotional reasoning.  This is the thinking that goes "I feel therefore I am..." I feel embarrassed, therefore I've done something wrong and the whole world must be watching me and judging me.  I feel guilty, therefore I must have done a really bad thing. I feel like a failure, therefore I am a failure.  In the real world, feelings aren't the best evidence of reality, especially when we're depressed to start with. 
8. Should statements. Another chaplain I used to work with used to often say, "Don't should on yourself." When we give ourselves a list of shoulds: I should lose weight, I should get the dishes done, I should be more efficient, etc, we end up just feeling frustrated at all the things we should be and do and just never quite get there with the whole list. This leads to us feeling guilty and resenting all the things we "should" do, and often means none of it gets done.  When we apply "should" to someone else, we usually find other people aren't perfect and end up angry or resentful that they don't do everything they should do.  In the real world, human beings aren't perfect. We won't always meet our own, or others' expectations. We need to allow room for people (including ourselves) to fail once in a while, without that being a failure of everything.
9. Labelling and mislabelling. Labelling is great in the kitchen when we want to know the difference between the plain flour and self raising flour canisters. It's not such a good idea when we apply labels to ourselves or each other.  If I call myself a "loser" or a "failure", that's how I'm going to come to see myself. In the real world, if I make a mistake, I made a mistake, I'm not a "failure".  I am more than the things I do right or wrong. And everyone else is more than the things they do right or wrong as well.
10. Personalisation. This is when everything is about me. It's all my fault (even if I had no actual control over any of it.) My son missed the bus because I didn't wake him up (even though he's now an adult, he has an alarm and has been waking himself up for years). Personalisation leads to heaps of unnecessary and inappropriate guilt.  In the real world I am not omnipotent, and I don't control everything. I'm not responsible for all those things that are beyond my control.

A lot of depression can be tracked back to these faulty thought patterns. Sometimes, just doing the work of thinking through all the things that have happened lately and how I have thought about them and how that has led me to how I am feeling, can be all I need to do to climb out of the pit.

Sometimes, I realise that the "depression" isn't really "depression" at all. I'm just "feeling lousy" because I'm physically in a lupus flare, and the best thing to do about it is to go back to bed until I feel better. That happens in the real world, too.


Reference: BURNS, David MD.  Feeling Good: The New Mood Therapy. HarperCollins e-books.



Depressed? Need someone to talk to?  From anywhere in Australia call Lifeline on 131114.

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

The Bomb Began to Tick...

This is me, 23 years ago and 1800km away.

It was long, long before my lupus was diagnosed, but even then I had been through health problems that most people don't encounter.  I'd had surgery four times by then. I'd had rashes whenever I went out in the sun for about 13 years by then. And I'd had my knees just give out on me after climbing multiple flights of stairs for at least 10 years by then (I'd found out when I went to a high school that that multiple flights of stairs.) Right from childhood, I'd gone through mysterious pains in odd places, that my parents simply believed I was making up - so I hadn't been to a doctor for them. 

My body was a time bomb, and I didn't know it. 

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

A Little Short of Brain Power

lupus.cheezburger.com

I took a look at the HAWMC topic for today, realised I just don't have the brain power for it, and am posting off-topic.

I don't have the brain power for much today - I'm suffering a bit from the dreaded lupus brain fog.

About 80% of people with lupus will get some cognitive dysfunction. So I'm far from alone in having days when I just can't think straight.

Brain fog can lead to lots of amusing stories, like how I locked up the house for the night, but left the keys in the door from when I'd come in, so any burglar could just have turned the key and walked in. (But I have a back-up security system. A burglar would have tripped over the dog and the cat and been seriously injured.) I've also had the smoke detector remind me I've got something on the stove.

It's funny after the event.  And it's not such a big problem when it just happens now and then.

When it happens consistently, it can be frightening.  I had an extended bout of brain fog a few months back that left me wondering if perhaps I was suffering from early-onset dementia.  I became terrified that I would do something incredibly dangerous and not even know it.

For most of us, brain fog is often frustrating, sometimes frightening, and only occasionally funny.

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

Word Art Wednesday

done by tagxedo.com

done by wordle.net

done by imagechef.com

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

True or False?

How much do you know about lupus? Answer these ten true or false questions, then scroll down past the pictures to see if you have the answers right.

1. If it's diagnosed early, lupus can be cured.
2. Lupus is more common than breast cancer.
3. Lupus is never fatal.
4. Lupus can be prevented.
5. You can't tell how sick a lupus patient is by looking at them.
6. Only women get lupus.
7. Children can get lupus.
8. Some of the drugs prescribed for lupus are actually chemotherapy drugs used for cancer, and antimalarial drugs.
9. Lupus patients should stay out of the sun.
10. Improving nutrition will cure lupus.

1 - False. Lupus is (so far) incurable. Hopefully, medical research will eventually reach a point where lupus can be cured. 2 - True. Lupus is far more common than many people realise. 3 - False, lupus can cause organ failure, causing death. 4 - False. The cause of lupus is still unknown, so there is no way to prevent it. 5 - True. Most of the symptoms of lupus are invisible. False - 10% of people with lupus are men.  7 - True.  Lupus does not begin at particular age. 8 - True. Very few lupus drugs were specifically developed for lupus. 9 - True. Many lupus patients are photosensitive and can get rashes or full-blown lupus flares from sunlight. The ultraviolet light in fluorescent lighting can also affect lupus patients, so sun protection is even important inside and at night. 10 - False. Good nutrition is always a good idea, but it will not cure lupus.

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