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

Avascular Necrosis of the Bone

I had a question from a lovely lupie yesterday, that sent me searching for an answer.

She had recently been diagnosed with avascular necrosis in her knee, and hadn't heard of it before.

I went to Dr Donald Thomas' The Lupus Encyclopaedia for answers, and it turned out he had a whole chapter on it.

I'm not going to give you his entire chapter here (because that would get me into a whole lot of trouble with copyright laws), but I'll give you a quick summary, and if you want more you can go to the book.

Let's start with definitions: "avascular" means there's no blood supply getting to the area; "necrosis" means death.  Avascular necrosis of the bone can also be referred to as AVN or osteonecrosis. ("Osteo" means bone.)

AVN isn't all that common. About 5% to 10% of lupies will develop it, and those will usually, but not always, be people who've been taking high-dose steroids.  (Yet another element to add to our love-hate relationship with our steroids.)

It's most likely to be in the femur (thigh bone) at the hips, or in knees or shoulders. Many people who get it, will get it on both sides of the body.  If it is in your hip, you would be most likely to feel the pain in your groin.

There are three ways AVN can be treated:

1. For stage 0 and 1 AVN, joint protection is an option.  Use a walking stick when walking, only do low impact exercises. Lose weight if you need to. See a physiotherapist to develop an exercise routine that protects the damaged area.
2. Conservative management involves pain control: non-steroidal anti-inflammatories, etc, possibly even opioids, if necessary. Alendronate (an osteoporosis treatment) may also help.  Pain control alone does not stop the AVN spreading. 
3. For stage 2, 3 or 4 AVN, surgery is the only real option. An orthopaedic surgeon will be needed, to replace the affected joint.

As I said, there's a lot more information in The Lupus Encyclopaedia.  As with everything, don't panic, and please don't just stop taking your steroids just because you read this. This affects very few lupies, and for many of us the benefits of steroids will outweigh the risk. If you are worried, talk about it with your GP or your Rheumatologist.




  Kindle version           Paperback             Hard Cover

Consequences

I'm tired, really, really, incredibly, beyond words, tired. It's my own fault, of course.

Another "medically interesting" friend has been for quite some time asking me to go jet skiing with her.

All sorts of things have interfered with getting out, but finally, on Saturday, we managed to do it.

Despite my slipping on the riverbank and having an unexpected swimming lesson, it was a great day.

I covered up, doused myself in sunscreen, and did everything I reasonably could to minimise the damage.  But really, there's no way to go out and do something like that with no consequences.

We had about 40 minutes on the water.  By that time, my back, hips and knees couldn't have stayed in that position any longer.  But it was starting to rain anyway.

On Saturday night everything hurt so much I needed a sleeping pill to get to sleep.  I haven't had any trouble getting to sleep since. Staying awake? That's another matter.

On Sunday I did get to church.  I had four cups of coffee beforehand, and took another with me to help me stay awake through the service, then had an extra cup before I drove home and went to sleep.

On Monday, I managed to get up, and with the help of rather a lot of coffee I did a load of wash, played with my granddaughter for about ten minutes and did some work on the current novel I'm writing for about a quarter of an hour.  Then I went to sleep until my son woke me to tell me to take my lunchtime tablets.  After lunch and tablets I found some appropriate television for sleeping in front of, and slept on the couch for the rest of the day.

It's Tuesday now.  I've been up for two hours.  If I make it to lunch time, I'll consider it a great achievement, because I'm utterly exhausted.

If I told this story to my rheumatologist I'd get his "stop trying to prove you can have a normal life" lecture.  But do you know something?  I think that once in a while, going out and doing something that's fun and is totally outside my normal routine is worth the consequences.  This time the consequence is a few days (OK it might yet turn out to be a couple of weeks) of increased fatigue - which surprised me because I thought I might end up with a lot of extra pain and rashes as well.

I did it.
I thoroughly enjoyed it.
I don't regret it.
I might even do it again one day.
But right now, I need a nap.

Do you have a story to share about life with Lupus?  Throughout May, I want to feature stories by lupies.  Please tell me your story.  (Details are here:http://www.sometimesitislupus.com/2016/01/tell-me-your-story.html)

Autoimmune Research & Resource Centre World Lupus Day Events

The Autoimmune Research and Resource Centre is sponsoring these events in New South Wales for World Lupus Day 2016:

(World Lupus Day is 10 May each year.)

Autoimmune Resource & Research Centre - ARRC

Level 2 Pathology North Bldg, John Hunter Hospital, Locked Bag 1, Hunter Region MC 2310 Australia

P 04249 214095      E  HNELHD-ARRC@health.nsw.gov.au

W www.autoimmune.org.au  | CFN 22223  | Quality of life through education, support & research

  www.facebook.com/AutoimmuneAustralia   

Are you organising a World Lupus Day Event anywhere in Australia? Email me the details if you want them shared on www.sometimesitislupus.com.  (If you want to send me photos to publish after the event, just be sure that everyone in the photo is OK with it being published.)

Isolation

Being sick can be an isolating experience.

Gathering the energy to go out at all can be hard work.

If we're not working, that's a lot of time that we're no longer spending around other people.

Friends might continue to invite us to take part in things, but if we've had to cancel at the last minute for health reasons too many times, they tend to stop asking.

I'm better off than many lupies, because I'm sharing a house with family members.  Even so, I get lonely at times, when everyone else is busy or out.

For lupies who live alone,  it's much harder.

I've handled the situation by putting a lot of energy into getting out to church, to writers group and to toastmasters.  It gives me an opportunity to meet people, and to start to make friends.

What I've found easier than actually getting out, is inviting people to come to visit me.  Putting out a nice table cloth and the good china helps me feel like it's as good as going out, even though it takes less energy. (Although not all that long ago, I ended up lying on the couch while my son talked with visitors - it doesn't always work so well.)

The internet has made it easier to keep some connection with people, but occasionally everyone would rather have an actual human being around.

What we can do about  being isolated will vary from person to person.  If at all possible, getting out and getting involved in something is great - but it takes a lot of energy and not everyone's able to do it.

Keeping in contact with friends over email or phone is better than nothing.  Inviting friends around for low-key activities like a movie and a pizza can be a great thing.

For family and friends of lupies (or other people who could become isolated because of illness):

• Don't give up inviting them to join in things you're doing.  Even if they've cancelled on you a dozen times, it's not them it's the illness. They're as frustrated as you are.
• Offer to drive when you go out together. (It really does make a massive difference.)
• Offer to pick up something nice to eat and come over for a meal together.
• If you go to visit and the housework's not done, ignore it and give your attention to your friend. (Or offer to help, but still make time to give your full attention to your friend.)

Like Squeezing a Sponge

One of the (very many) things about having lupus is that it's possible to have seemingly opposing symptoms at the same time.

Take, for example, last night when I couldn't sleep.

My eyes were so dry they were agonising. You might know what it's like - when your eyes get so dry that any moisture - drops, water, even your own tears when they finally appear - actually burn.

That's the stage my eyes were at.  I'd put in polygel eye gel, and it had hurt and then been absorbed.  (An optometrist once had fun getting my kids to watch as she put drops in my eyes that were absorbed immediately, leaving my eyes still incredibly dry.)

At the same time my mouth was dry.  I felt like my tongue was glued in place.

It wasn't my eyes and mouth that were keeping me awake, however.  My feet and legs were so swollen with retained fluid that they were turning purple and causing agony.

Eventually, I knew I just had to get up and take a fluid tablet, otherwise I'd get the horrible headache I get from fluid retention (that's next after the swelling for me.)

I got the pill and went to swallow it without water, because that's just something I normally do, except it got stuck on the back of my dry mouth.  (Which was more than mildly uncomfortable.)  The stuck pill was unstuck with a drink of water.

After a while, I felt the tingling in my legs that lets me know the fluid's going and the swelling's going down.

Another thing happened, something I've noticed before and asked my rheumatologist about, but he can't explain it.  I started to produce saliva and tears.

I don't know what is happening - perhaps when my body is retaining fluid, it's retaining it everywhere, and when I take the fluid tablet, it just gets squeezed out like squeezing a sponge.

That seems silly, but it's the only explanation I can come up with.  Bodies don't work like that, or do they?

I still didn't get much sleep, I spent most of the night running to the loo. By morning I was about 3kg lighter and felt a whole lot better.

Hey lovely lupies, while you're here, why not fill in the Lupus Survey.  Hopefully by World Lupus Day, we'll have discovered some interesting things about people with lupus.

Can You Help the ANU?

Hey lovely lupies, is there anyone who lives (or happens to for some other reason be) in the
Australian Capital Territory, who might like to help out the Australian National University with a lupus awareness campaign?

Here's the details:

Overview:

My name is Jimmy and I am from the Marketing and Communications Services of the Joint Colleges of Science, Australian National University. Our team is working with ANU Lupus researchers to raise the profile of the disease and increase funding for research. 

We are currently planning a campaign to coincide with World Lupus Day. Our campaign will publish real stories from patients and researchers to inform people about the illness and encourage donations. 

An important aspect of our campaign is to inform the public and potential donors about Lupus and how it affects patients. We are interviewing researchers and people affected by Lupus and creating short videos. These videos will provide insights into the disease and the research taking place at ANU. 

What would be expected of you?

If you choose to participate, we would ask for you to speak on camera about how Lupus affects you. We would not ask you to speak about anything that would make you uncomfortable. We would consult with you beforehand to ascertain how you would like your story to be presented. 

How long will it take?

The filming would take no longer than an hour of your time. We would also ask for a brief meeting beforehand to discuss the interview.

Where would your story be published?

Your story may be published in a number of places. This could include:

The science.anu.edu.au website

The Science at ANU Facebook page. 

The ScienceANU Twitter account. 

What if you are unhappy with your interview?

If you decide you’re unhappy with the interview, we will be happy to leave your interview unpublished. 

Cheers,

James Walsh

Deputy Manager, Communication (Acting)

ANU College of Medicine, Biology & Environment
ANU College of Physical and Mathematical Sciences

Building 42, ACTON ACT, 2601, Australia
The Australian National University
T: +61 2 6125 4375

Hey "Big Pharma"

There's been a movement over relatively recent years, to reject mainstream medicine, and substitute with "alternative medicine."

The alternative's become so popular that much of it is covered by health insurance nowadays.  In fact, the last time the cost of my health insurance went up, I looked at what my cover included, and went in to the storefront.  I asked if there was perhaps a cheaper option that didn't cover all of the "alternative" treatments.  Their answer, such a cover doesn't exist.

I am not going to use:  naturopathy, acupuncture,  reflexology, kinesiology, Chinese & Western herbalism, shiatsu, aromatherapy, homeopathy, Bowen therapy, Alexander technique and Feldenkrais, but I'm covered for all of them. All of those are included in a basic extras cover - the one I need if I want cover for the dentist, optometrist, and physiotherapist.

As all of the "alternative" treatments have become more popular, it has also become quite fashionable to complain about and suspect the motives of "Big Pharma".  (This despite the fact that prescription medication is subject to far more stringent government controls than the "alternative medicines", which can often also be multi-million dollar businesses.)

I understand - "Big Pharma" is a set of  corporations just like "Big Electronics" or "Big Cars" or "Big Airlines" or  "Big Supermarkets" or even "Big Herbal Medicine." Big corporations exist to make money, and don't have any real feeling for ordinary people. But do you know what? All businesses, big or small, exist to make money.

So let me be the person to come out in favour of "Big Pharma" along with the rest of evidence-based medicine.  Thanks to pharmaceutical companies, my doctors, medical researchers and my local pharmacist, I am alive and my symptoms are mostly quite well controlled.

Thank you: thank you pharmaceutical companies, thank you doctors, thank you pharmacists, and thank you medical researchers. May God bless you all, and may you all continue to help keep lupus under control.

As for "Big Health Insurance"?  I'm starting to wonder if maybe I'd be better served by parting ways with them, and just trusting the government won't destroy Medicare and the Pharmaceutical Benefits Scheme.

Do you own a blog, or other resource on the web to support people with lupus?  Want your site shared on Sometimes, it is Lupus on World Lupus Day?  Add your details here: http://www.sometimesitislupus.com/2016/04/lupies-on-net-where-are-you.html

Tired

When a lupie complains of fatigue, I wonder if healthy people understand what that means?

Unlike most people "tired" is a baseline for us.  We're always tired. We don't complain about that usually, because that's "normal".

We wake up tired - even if we've actually slept well - even if we've taken medication to ensure we've slept really well.

There's degrees of tired, however.  Most days I can make my zombie-like way to the kitchen to fuel up on caffeine so I can actually do something with my day.  Some days, I don't make it that far, I get half-way out of bed and go back for a nap.

Why is that?  Well some days, right from the start, "tired" feels like I've been dragging a load five times my own weight across a desert for the last 48 hours.

However I start the day - tired just gets worse from there.

For anyone who doesn't know, these are the basic stages of "tired" in lupus.

1. Simply tired.  I can function, but I could do with a cup of coffee.
2. Moderately tired.  That coffee is getting urgent.
3. Very tired.  I'm struggling to stay awake.  Coffee's no longer helping much.
4. Extremely tired: I'm binge eating, drinking anything I can find with caffeine, and shaking, trying to get the energy to keep going when every cell of my body just wants to sleep. 
5. Fatigue: I'm not making sense when I talk, I keep forgetting basic things,  my co-ordination's shot and I'm dropping things and falling over.  I'm getting frustrated that my brain and body just aren't working any more.
6. Severe fatigue:  Not only are my brain and body malfunctioning, but my emotions are all over the place. I'm just going to sit down here and throw a toddler tantrum until I get my milk and bikkies, and my blankie and nap.
7. Exhaustion: I'm going to sleep.  I may be standing up.  I may be in a meeting.  I may be in a movie theatre. I may be standing in a line at the bank.  I may be shopping in the supermarket.  It doesn't matter.  I am going to just stop here and sleep.

I can remember (vaguely) days when I was healthy, that I really didn't even get to a 1 until late afternoon.  Now I can hit a 7 as I'm getting out of bed. An incredibly good day is one when I don't get past a 3.  On a regular day, I'm moving back and forwards over all points from about 3 to 6. 

Well, that's just fatigue.  When you add pain into the mix, that's when it gets really interesting.

Hey lovely lupies, have you thought about writing your story for me?  All through May, I want to feature posts about lupies sharing their story of life with lupus.  I just need your photo, your name, and your story.  

Full details are here: Tell Me Your Story http://www.sometimesitislupus.com/2016/01/tell-me-your-story.html (Note: if you have a lupus-related website or social media page, feel free to include the link with your story.)

I'm looking forward to hearing from you.

Lupies on the Net: Where are You?

Another project for World Lupus Day.


If you have a website (blog, Facebook page, Twitter, Google+ page, etc, etc) that gives information about lupus, or aims to support the lupus community, please add your link here.

Submissions close on 8 May, and on 10 May, World Lupus Day, all of the links will be shared on a post here on Sometimes, it is Lupus.

Help people find you who might not have done so already.

The Cat, the Mat, and the Lupie

A while ago, I told you about how one of our cats ran away and we couldn't catch him for ages, and I was so stressed out I had a flare.

That's not the cat in this story. This is the other one.

Since those fateful events, we've had an "air lock" system in our house.  Both the little entry hall has both the front door and the door to the rest of the house closed - only one can ever be opened at a time so as to make sure no cat can get out.  We have the same system with the laundry and the back door - the door between the laundry and the rest of the house has to be closed before the back door is open.

This has left us with two cats who have begrudgingly accepted becoming "inside cats", but who still look enviously at a dog who is regularly taken outside.

Another piece of background to this story is that on good days, I try to do many of the things that I would leave for my son/carer on bad days.

So it happened that on Wednesday, I was taking my washing out to the clothesline.  It was late in the day and I was a little tired, so a little brain fogged, and I didn't properly close the door to the laundry before I opened the back door to go outside.  Out of nowhere the older cat appeared, and disappeared through the gazebo and into the trees before I had a chance to catch him.  (He may be getting on, but you wouldn't know it.)

I called for my son, who failed to catch the miscreant, but did give me a lecture.  (Whose job is it to make sure I close doors, turn off the stove, etc anyway?)

As I said this cat isn't the one who stayed away for ages.  This one will always come home, the issue is just how much mayhem he will cause and what injuries he will come home with.

I finished hanging out my washing, and came inside.

A little later it was getting dark, and I thought it might be time to check if Mr Bumpy Cat were back home.  I went to the front door, making sure to shut the other door behind me.  I didn't think to turn on the entryway light, I wasn't going to be there long. Just outside the front door was said cat.  He'd apparently been considering coming home.

Trying not to scare him away, I squatted down to try to coax him in.  I had one foot on the doormat and one on the tiled floor.

Mr Bumpy took one or two steps in, but once he was half-way through the door he turned to go back out again.

I grabbed for the cat, not wanting him to run off into the darkness.

The next thing I knew I was lying on the tiled floor in a tangled mess of arms, legs, cat and doormat, with my bad hip and shoulder both making their pained objections quite clear.

There was only one thing I was certain of:  if I let go of the cat before I got that front door closed,  I wouldn't be able to catch him for hours.

I thought of calling for help, but my son was in his room at the back of the house, and if I called too loudly, I would wake my toddler grand-daughter upstairs.

I lay there for a moment, trying to gather my thoughts, and discovered they were as hard to catch as the cat had been.  Eventually, I rolled the entire ball of cat, me and mat fully inside so I could lean on the door to close it.  Done.  I could let go of the cat.

Now, I was in the dark, on the floor and in pain.  I slowly rolled over on to my hands and knees.  Sadly, my left hand was on the corner of the mat, which was now upside down (so the stuff to make it stay in place was on top, not on the tiles), and it shot out from under me.  Have I mentioned that my bad shoulder is the left one?  I almost screamed.

I made it back to my hands and knees, making sure no part of me was on the mat.  I stopped for a moment to recover and make sure nothing was actually broken, before I got completely to my feet.

I opened the door back into the rest of the house.  Just at that moment, the cat darted under my feet, and I fell against the wall. (It was my left shoulder that hit the wall.)  At least I stayed basically upright.

There were no real consequences, other than that my bad hip and shoulder hurt a bit more than usual.  But I can tell you, fatigue, brain fog and basic clumsiness are a very bad combination.

Oh, the washing machine's just finished.  I have to go and hang out another load.

You can read the same story, from the point-of-view of the cat here: http://www.mrbumpycat.com/2016/04/mr-bumpys-version-of-certain-events.html

Be Healed!

I was approached by a teenager in a shopping centre the other day,  boy who wanted to pray for me so I could be healed.

Now, I put that up there with "if you had enough faith, you'd be healed", or the non-religious version that says "a positive attitude, more exercise, etc, is all you need."  What both the religious (and it's not just Christians, I have to say in defence of my own faith), and the non-religious versions are both basically saying is that if you're sick, it's your fault.

I don't buy into that. I told the kid I'd been a hospital chaplain for over a decade and was well aware that lots of people could be healed, and most often, God chose to work through doctors.

The kid said he knew doctors were great for people who didn't have faith. (He also told me he'd already cured one person, he prayed for her and then she could see without her glasses.)

Do you see something here that looks like waving a red flag in front of a bull?

No, I didn't rip the kid apart.  I told him he could pray all he liked, but already knew the answer would be no.  God's not a puppet, and if God really wanted to miraculously cure me, God could just do it.

Before I managed to ditch the kid, who hung on like a limpet, he did ask one sensible question: "Why would God say no?"

Actually, you've got to turn the question around a bit to make it sensible: "Why would God say yes?"  Why would God create a complicated set of natural laws and then just throw them out the window for me?  Well, God didn't, hasn't and won't.  And if I had to be honest, that's fine by me.  If God kept suspending the rules of nature here and there, for one person or another, can you imagine what the world would be like?  Oh we'll just interrupt gravity so this person falling off a cliff won't get hurt. We'll run time backwards for a while in response to that person's prayer. We'll cancel all disease, and then there'll be no reason for people on this already-overcrowded planet to die.

Really, I like the laws of nature, just as designed. They work.  (OK, climate change is showing us we can mess them up, but in that case it really is our fault.  I'm pretty sure that verse in Genesis that gets translated as "subdue" the earth, meant "I'm putting humans in charge, you're responsible for this world," not "Go and destroy everything.")

For a healthy teenaged kid, being sick, old, or disabled must seem like the worst thing that could possibly happen.  Of course the kid would have to have limited imagination and pay no attention whatsoever to the news.

Sure I have bad days. I can be in varying amounts of pain. I can go through varying amounts of fatigue.  I can have scary bouts of confusion and forgetfulness.

But even with all of that, there are good things.

The best thing is I have lived long enough to see my children become adults, that's all I really asked for and hoped for. There's lots of amazing, incredibly strong, wonderful people all around the world I've come to know because we share this battle.  And all of those people are well worth knowing.  I have time to write, to sew, to do art, to drink coffee with friends, and play nonsense games with my granddaughter. I have a home that's perfect for my needs, and my family's needs.  I have a doofy dog who makes me laugh, and a smoochy soft rag doll cat.  When all else fails, I have quite a comfortable couch to sleep on in front of the TV and try to sleep off the worst of the fatigue.

And I have good days.  On good days I can do absolutely anything,  even tolerate a kid who thinks he can heal the sick in the marketplace.

Doing Things and Overdoing Things

I have a very bad habit, and I know I'm not the only lupie guilty of this.  I overdo things.

Sometimes I just miscalculate what I can and can't do.  Sometimes I know it's too much, but I do it anyway because it's something I really, really, want to do. Sometimes, I feel I need to do something for someone else.  Sometimes I do things because I feel guilty about all the things I can't do.

It doesn't really matter why.  The fact is that I overdo things, and I do it by choice.

Take, for example, the Toastmasters Club I recently joined.

On Monday this week, I had my first turn as the toastmaster - that's basically a master of ceremonies.  My job was to make sure the meeting was following the agenda, going to the anticipated time on the agenda, introduce people (who we all knew anyway), and have something interesting or semi-interesting to say to fill in gaps.

It required some preparation, a lot of concentration, and a lot of getting up and sitting down and getting up and sitting down.

Immediately prior to the meeting starting I was asked by some of the older members if I would be willing to be nominated as VPE (Vice President Education) when we have to elect officers again soon. I hummed and haa-ed, but was persuaded to give it a go.

After the meeting, my daughter and I stopped off at a supermarket. I had friends visiting for pizza and a movie later in the day, and wanted to get some pizza ingredients.  Firstly, I couldn't find my way around a supermarket that I know really well. Then, I had no idea what goes on a pizza, and had to ask my daughter to sort it out for me.

At that point, my daughter pointed out, that if I was that tired and brain-fogged after just being toastmaster, I really shouldn't be VPE.

I had to agree she was right.

A short nap later, I managed to be vaguely human and enjoy my friends' visit. On Tuesday, however, all I did was sleep.  It was all I could do.

That's making me a little concerned.  You see, recently I told the minister at the local church that I was sure I was well enough to lead worship from time to time - a task which also takes a lot of standing, a lot of preparation, and concentration.

I love leading worship so much, that I really, really do want the opportunity to continue to do it. But if I do, it looks like I need to plan my time so that I can have a day or two out to rest afterwards.

It's always a matter of balance, is the thing I'm presented with the opportunity to do worth the amount of time it will take me to recover?  Like many of you, I have to carefully work out the pros and cons of the activity, and the exhaustion, confusion and physical pain to follow.

While I'm here, I must mention, that if you don't hear from me much next week, it's because a friend is taking me jetskiing on Monday. That will definitely be worth it.

And while you're here, why don't you hope over to the Lupus Survey and fill it out if you haven't already?  There's no identifying information requested, and next month we can have a look at the results maybe learn more about ourselves as a group.