Wednesday, 3 February 2016

Crossing The Line

Image: yellow marigold.  Text: I wish I could actually see the fine line between doing things and overdoing things.There is a fine, very fine, microscopic even, line between doing things when I feel fairly well, and over-doing things and making myself unwell again.  I may have crossed the line a little.  Hopefully, only a little and I will get back on track after a day or two of rest.

What did I do wrong?  I broke my own rule of only doing one "big" thing a day.  For me a "big" thing is pretty much anything I have to leave the house for.

On Monday,  I walked my dog (one "big" thing), and because I was feeling quite good, and because she was really having a great time, we went quite a bit further than usual.  We must have been out at least 15 or 20 minutes.

Then I went to my first ever Toastmasters' meeting.  (Well, feeling relatively well made it a good time to further my plans to get out and meet people, but this was a second "big" thing.) From there, I went to coffee with some of the Toastmasters' members ("big" thing number three).

When I came home I crashed.  It was a very long sleep, and I still didn't feel quite right.

On Tuesday,  I had a Writers' Circle meeting.  Which I went to, and thoroughly enjoyed.

For my dog's exercise, we played our version of fetch.  It involves her running around madly with a squeaky toy for five or ten minutes, letting me get the toy to throw, lolloping off after it with a dumb grin, running around with it for another five or ten minutes before I throw it again.  It's good, she gets half an hour's cardio, while I only have to throw a squeaky toy three times.

By Tuesday afternoon, I had taken extra pain pills, and my son suggested that for our grocery day (Wednesday/today) maybe we should just order on-line to have our groceries delivered, instead of me going out again. I assured him I would be fine, after all I do seem to be just about over this flare.

This morning?  I got up, ordered the groceries on-line, and the dog and I went back to bed.  My son graciously refrained from saying he told me so.

If anyone's looking for me today, if I happen to actually be awake, I'll be in the studio, writing or sewing, anything that's relaxing and doesn't take any real physical effort. Oh, and at some stage, I'll probably toss a squeaky dog toy down the hallway a couple of times (at least one of us should get some exercise.)

Sunday, 31 January 2016

Movies of our Lives

Image: orange flower. Text: when they make a movie of my life, it wll be called Tales of the Unexpected.If there was a movie made of my life, I think the title might be either "Tales of the Unexpected"
(stolen from Roald Dahl) or "Oh No, Not Again" (stolen from a line from Douglas Adams).

It would be about all the times that I just get used to life being a certain way, and lupus suddenly changes everything in an instant.

There would be the "hey I think this flare's over" followed immediately by "I don't think I can get out of bed."

There would be diagnosis, re-diagnosis, un-diagnosis, re-re-diagnosis.

There would be pills started, pills replaced, pills started, pills stopped, pills started ad infinitum.

And in the midst of it all, there would be me, trying to find ways to have a life that seems to me worthwhile despite all the weird things my body and my medications are doing.

I hope it would be a positive story, despite all the setbacks.

I asked some other lupies what the movies of their lives would be called, here's what they said:

  • " A life half lived" - Julie
  • "The Battle Inside" or "I'm Killin' Me!" - Renee
  • "LU?US"  L.ets U.ndo P.eoples U.ndesereved S.uffering.. because  ......L.upus U.nfairly P.unishes U.s S.everely. -Randall
  • "Life with the Butterfly" - Patricia
  • "Is There Life Out There?" - Jeannine
  • "Lupie, Purple Butterfly"  or "Purple Butterfly, Battle Within" - Myra
  • "Lupus Living Nightmare" -Maria
  • "Rebellion: Attacking Lupus" - Maggie
  • "Counting the Spoons!" - Garnet
  • "The Invisible Battle" - Melinda
  • "Death Becomes Her" - Courtney
  • "Duel in the Sunshine!" - Judy
  • "Carry On Regardless" - Julie
  • "The Rage Inside" - Kimberly
  • "I Know I Look Well!" - Christel
  • "The Daily Struggle" - Kathleen
  • "Here We Go Lupty Lu" - Suzie
  • "Pyjama Day Again" - Amy
  • "No Pain No Gain" - Anne
  • "Girl Interrupted" - Rose
  • "Lupie Madness!" - Michele
  • "Living Dead" - Angie
  • "Fatigue" - Char-less
  • "Miserable Me" - Rolinda
  • "Mayhem" - Di
  • "Oh Loopy" - Sal
  • "Lucky Me" - Kim
  • "El Transformó Mi Vida" - Monchy
  • "Hard Times" - Rena
  • "Fearless" - Sheri
  • "YES it is Lupus!" - Karen
  • "Lupus Warrior" - Lisa
Some of these movies would be epic stories of battling against the odds.  Some would be sad but sweet stories of people putting on a brave face for the people they love.  Some would be dramas about someone juggling all the elements of life, with an extra set of challenges that no-one else suspects. Some might even be madcap comedies about brain fog and practically living in the doctor's surgery.  Every one of them would be different, unique.  Everyone experiences this disease differently, and everyone handles the challenges it presents differently.  Every story is worth telling.

Wednesday, 27 January 2016

Coming Out of a Flare (Hopefully)

Image: Purple flowers. Text: Either I'm coming out of a flare, or I'm deluding myself.Something's changed just in these past couple of days.  Maybe longer, but I've actually noticed it the past couple of days.

I've been getting more done before becoming exhausted.

At first, I started having the energy to post more frequently on this blog.  It had been more and more sporadic as I found myself more and more fatigued and sleeping most of the day.

I started finding the energy to take the dog for a short walk some days, and to face my overgrown garden and start to work on it again some days.  To start with, I was alternating, ten minutes gardening one day, ten minutes walking the other. I also started work on a sewing project for my granddaughter that I'd been putting off.

Yesterday, I stunned myself.  I did both.  I took my dog for her walk and I planted out some new things in the garden.  I could barely believe it.  It's been months and months and months since I was able to do anything so incredible.

Last night I realised that I was probably coming out of a flare I'd been in.

Then I realised I was so exhausted I was no longer communicating coherently, and went to bed.  The pain was so bad that after lying there trying to go to sleep for a couple of hours, I ended up getting up for some endone (oxycodone) and a sleeping pill.  At that point, I thought maybe I'd been kidding myself and I wasn't really coming out of a flare, just pushing myself too far.

What happened next was a miracle.  I got up this morning and stayed up.  It's after 5pm and I haven't had, or needed, a nap.  If this continues I can see all sorts of wonderful things happening, for example I might actually be able to go to church.  It's been ages, but when I've managed to drag myself there, I've either slept through the service or been shaking with the effort of keeping myself awake.

I'm starting to get tired now, but I went grocery shopping today, and, as I said, I didn't have my four-hour nap after breakfast.  Even if it proves to be a very early night, I think I'll still celebrate what seems like a siginficant improvement.

Monday, 25 January 2016

It Could Have Been Me

Image: pink rose. Text: Every now and then, the wolf takes one of us. And the rest of us can't avoid thinking, "That could have been me."Every now and then I hear about another person who has died in the fight against lupus. Sometimes, it's someone I've come to know through my online networks, sometimes it's a name and a face that sparks a vague recollection, sometimes it's someone I don't think I've encountered at all.

While I only really grieve over those I've had some interaction with, reading about a lupie's death always pulls me up short, and leaves me in shock for a few hours.

Today, as news was shared and reshared about another death, someone gave words to that shock I always feel.  She posted: "That could have been me."

"Lupus" means "wolf", the disease got its name from rashes that looked, to someone anyway, like wolf bites.

This wolf is no tame little lap dog.  No-one gets to control it.  It's a creature of pure malevolent evil. It stalks us constantly. If it's not actively attacking us, it's planning the next attack.

We fight back with drugs with trying to keep to a basically healthy lifestyle, by trying to avoid things we know are triggers.

But the wolf is unpredictable, and we never know where the next attack is coming from.  As hard as we fight, it's determined to fight harder.

So when one of us falls, we all pause for a bit, and recognise, that could have been us. And we look around at family, friends, things we want to achieve, all the reasons we have to live, and we determine to fight even harder.

Then we complete the thought: "That could have been me, but today it wasn't.  I'm still in the fight, and I'm going to give it everything I've got, because I plan to win."

Sunday, 24 January 2016

Looking on the Bright Side

Image: sunflower. Text: Lupus cna mess with my memory,c ause me pain, and drain me of energy. It can't take away my determination to be happy with my life.The limited energy I have means I have to make choices every day.

I could take my dog for a ten minute walk, or I could do ten minutes work in the garden.  I don't have the energy to do both those things.  (Thankfully, my dog loves playing in the yard and "helping" me garden.)

I could spend an hour or so writing, or spend an hour or so on art or sewing.  Again, it's only one of those things, and then I need to rest.

If I go shopping, I can walk for a short while and get into places that are awkward for mobility scooter,  or I could take the scooter and go further, do more, and stay out longer, but I can't get into places that have limited accessibility.

Every day I make lots of choices, deciding how to use my limited energy each day.

There's another, equally important choice I have to make every day.

I can look at my draw full of medication, and be dismayed. Or I can look at it and be glad that these drugs have made it possible to have a quality of life that I wouldn't have if they weren't available.

I can be miserable about not being able to do a job I loved any more, or I can do other things I love, reading, writing, arts and crafts, being with people I love.

I can be annoyed that I don't go out very much, or I can be appreciative that I have a house that so perfectly meets my needs, and also provides shelter for my family.

I'm not minimising depression that can go with chronic illnesses.  I'm first to confess that I do get overwhelmed at times, especially when brain fog makes me vague and confused.  That drawer of medications includes an anti-depressant.

What I'm saying is that the story is bigger than that.  I can't, and I don't expect you can, force myself to be ecstatic when everything's bleak.  And I know if I'm in the pit of depression, getting out is a long, slow, process. I don't want to go back there. What I can do, is choose the way I look at whatever's right in front of me.

There's at least two sides to every story, every day we choose which side to focus on.

Saturday, 23 January 2016

Worth A Check

Image:  bone density results. Text: Life with chronic illness: my whole body's been texted, examined, scanned, sampled, measured and studied.  My doctors know my body better than I do.I went for a bone density test recently.

Normally, that's something you start to do a couple of years after menopause.  I'm only starting on that particular delight now.

I went because I've been on steroids for almost a decade.

My results are, OK, and I wasn't worried they would be, because I've been careful.

I've known for quite a while that prednisone depletes vitamin D from the body.  (My rheumatologist knew that as well, which is why he told me to take vitamin D supplements, and checks my levels along with my blood test from time to time.)

I also know that the natural way we get vitamin D is through exposure to ultraviolet light, such as sunlight.  Sunlight's never agreed with me, so I've been quite dutiful about taking the vitamin D supplements.

Vitamin D and calcium are necessary for strong bones , to prevent osteoporosis. So as well as taking the supplements, I'm careful to eat lactose-free dairy products so I have sufficient calcium.

Despite the care, my gerontologist (who I see because my brain acts old, not because I'm actually old) suggested it would be a good idea to do the test, so we can see where things are now, and have a baseline to see if things change over time.

It was no big deal, but just another thing to add to the pile of scans, xrays, etc, and a good reminder as to why I need to be careful of taking vitamin D and eating calcium. After all, with gravity and inanimate objects constantly attacking me and making me fall over,  I really don't want bones that would break easily.

Friday, 22 January 2016

If It Doesn't Come From Someone Who Is Qualified, It's Not Real Medical Advice

Image orange flowers. Text: unless you're my doctor, please don't give me medical advice.I recently saw an article being shared around Facebook.  It said people with lupus shouldn't take
chemotherapy drugs.  Who was the person who had the expertise to write this? Was it a world-renowned rheumatologist? A medical researcher?

 The author's name tugged at my memory.  He was featured on an episode of The Checkout not all that long ago. His job was selling blenders on an infomercial.  He did claim some medical expertise on the basis that his parents were doctors. My father was an electrician, but that doesn't qualify me to rewire your house.

Hopefully, most lupies didn't fall for that.

I fell for something similar a few years back.

I went for a regular eye test, and filled in a form for a new optometrist which included all my medication (plaquenil being one medication I was taking.)

The optometrist told me I the plaquenil was damaging my macula and I should stop taking it immediately.  I said I had an appointment with my rheumatologist in a couple of weeks, I'd talk to him about it.  The optometrist said something along the lines of: "You could wait that long, but only if being able to see isn't all that important to you."

I stopped my plaquenil. By the time I saw my rheumatologist, my lupus was flaring.

The rheumatologist sent me to am opthalmologist.

The opthalmologist (eye specialist) told me two important things: firstly, I did not have a macular problem at all, and secondly, plaquenil maculopathy was so rare that most optometrists wouldn't recognise it if they saw it.

I never went back to that optometrist again. I did, however, see the opthalmologist every year while I took plaquenil, just in case.

So that's general advice from someone who doesn't know, specific advice from someone who didn't know,  what other advice do we get?

There's always the friendly advice:  "Don't let lupus control you, just get out and do what you want to do."  Fine, but right now I'm in agony and exhausted and all I want to do is take some pain relief and go to bed.  "You need something to boost your immune system."  Yes, well my immune system's trying to kill me, so I don't want to give it any help.  "You just need to get out in the sun more." Do you have any idea what happens to me when I go out in the sun? "You need more exercise."  Exercise causes me a lot of pain and can trigger a flare, I do what I can, but I can't push it further. "You should take some B12." If it shows up lacking on my blood tests, my doctor will tell me and then I'll take it.

Then there's TV doctor advice.  Some of the people who play doctors on TV talk shows might actually be qualified as doctors, but there's no guarantee. If they give general advice, even if it might be good for some people, no two people are the same, and lupies find we all have different experiences and different medications that help.  General advice is not a replacement for your own doctor's advice.

I'm not saying there's no reliable information around.  There's rheumatologists who blog, there's really good reference books, like Dr Donald Thomas' Lupus Encyclopaedia. Check who's giving the information, and what their qualifications are.  A practicing rheumatologist should have a current working knowledge of treating lupus.  But these are for general information.  I'm sure rheumatologists who blog or write books would be the first to say that reading their work  is not a substitute for seeing your own rheumatologist.  Rheumatologists writing on the net and in books can give you information, tell you about what tests mean, warn you about the side effects of medication, but they haven't seen you and they haven't looked at your test results and they don't know what is the best treatment personally for you.

So what I'm saying is, accept information from informed sources (but check that those sources are informed), but when it comes to actual medical advice about your actual treatment, check with your doctor.

Thursday, 21 January 2016

The Adventures of Lupie in the Fog

Image: purple daisy.  Text: Brain fog: when you start something and forget toI could do with a coffee. I'll make one. Oh wait, I've already made one.  It's right here, and still warm. I just forgot to drink it.

Yuk!  How many times did I sweeten that? Maybe I haven't drunk it because it was too sweet?

I seem to have read this same paragraph a dozen times or more, and I still can't make sense of it.

Maybe I should make a coffee.  Oh look, there's one right here and it's still warm, I must have forgotten to drink it.  Ergh! Too sweet.  I must have forgotten I'd already sweetened it, and done it again.

I've read this paragraph before, I think.  It seems familiar, but it still doesn't make sense.

Maybe I need a coffee...

Monday, 18 January 2016

Lupus Research at Australian National University

Text Lupus research: The job's not finished, but someone's putting the pieces together.I think I've mentioned before, probably a number of times, that my super-heroes don't wear tights and capes. They wear lab coats.  They're working on saving my life, and the life of other lupies around the world.

We haven't got a cure yet, but we haven't been forgotten, either.  There's lots of people working on trying to piece this problem together.

The Centre for Personalised Immunology at the Australian National University has given me this explanation of the amazing work that they're doing at the moment, to share with you all.

I know everyone and their dog is always after you for money, but if you have some to spare, you can donate to the Centre's work here.

Lupus research at the Centre for Personalised Immunology

The global prevalence of lupus is about 10 per 100,000. Lupus is much more common in women (by about 9: 1). Many patients present between 20 and 45 years of age, but lupus can affect men and women of any age. Sometimes, even children are affected.

Lupus can affect the body in many different ways. Most typically, patients present with a butterfly rash across their cheeks, joint aches and pains, mouth ulcers and chest pains. Other significant problems include inflammation in the kidneys (lupus nephritis), inflammation in the nervous system (cerebral lupus), and problems with the blood count (haemolytic anaemia and immune-mediated thrombotyopenic purpura (or ITP). At the moment, lupus is a chronic condition because there is no cure. Lupus disease activity often fluctuates over time, with patients experiencing flare-ups and then periods of disease remission. 

We know that lupus is an autoimmune disease. This means that in patients with lupus, the immune system goes awry and recognises elements of the body as if they were microbes. In other words, the immune system treats otherwise healthy parts of the body as if there were a serious infection present, and this leads to chronic inflammation and tissue damage.

There are other autoimmune diseases besides lupus. These include autoimmune thyroid disease (Hashimoto’s thyroiditis and Graves’ disease), pernicious anaemia, Sjogren’s syndrome, rheumatoid arthritis). Sometimes, these other conditions also occur in patient with lupus, or in their close relatives. Clustering of autoimmune diseases within families provides evidence that lupus, and indeed all autoimmune diseases, have a significant genetic component.

All current treatments for lupus are aimed at reducing inflammation and suppressing the immune response. Most of these treatments, however, are quite non-specific and suppress the immune responses that contribute to lupus, but at the cost of suppressing the immune responses necessary for fighting infections. Ultimately, we need to find more specific treatments, which depends on a better understanding of the mechanisms of lupus.

Our research strategy
The immune system is extremely complicated and therefore even once we have narrowed the cause of lupus down to a problem with immunity, it remains an enormous challenge to understand the precise nature of the abnormality. We are taking several different approaches to this problem.

In general, we are seeking to understand the genetic specification of abnormalities in immunity that lead to lupus. The technical challenges for performing this sort of research are substantial. We have been working on these questions for quite some time and have established significant research infrastructure to perform state-of-the-art genomics analysis, which enables us to identify single genetic variants anywhere within the 3 billion bases that make up the human genome. Analysis of genomes from patients with lupus or other immune disorders provides the first step in the discovery pathway. Each individual harbors thousands of genetic variants and the difficult task is to understand how these might alter normal immune function. This is where our efforts are concentrated. In order to accelerate this process, we also stratify our discovery based on the knowledge that:

  1. Severe cases of immune-mediated disease sometimes yield answers more readily than milder cases. For lupus, severity can be assessed by early age of onset, unusually severe or refractory manifestations. Detailed analysis of patients with severe cases can then provide signatures of genetic and immune abnormalities that are more obvious. Once we have identified these signatures, we can then proceed to look for the same abnormalities in patients with milder disease.
  2. Genetic predisposition would predict an increased incidence in relatives with lupus. We are investigating families in which more than one person is affected by lupus or autoimmune disease.

How is this work funded?
Our progress in the area was recently recognized by the award of a Centre of Research Excellence grant from the National Health and Medical Research Council of Australia. This is a highly prestigious grant and recognition of consistently high quality work. It also represents acknowledgement of the potential for our approach to make important progress in understanding diseases, including sarcoidosis. More information about the centre can be found here:

How do I get involved?
Patients provide written informed consent to participate. After this, we proceed to extensive gene sequencing (whole exome or whole genome sequencing). Once candidate genes are identified, then detailed laboratory analysis is performed to try and identify which genetic abnormalities are instrumental in causing disease. Some of this work is performed on patient lymphocytes obtained from a blood test.

Friday, 15 January 2016

Good News - Well, Eventually

I had a talk with someone from Australian National University today, and I'm really excited about the work they're doing on ways to treat a specific individual patient.

As most of us have experienced, up until now, lupus treatment is often hit and miss.  We try one medication, if it doesn't work we try another, our our doctors have us try again and again, until we find a cocktail that keeps everything under control.

The research into personalised treatment sounds like it could, eventually, change all of that. It's sort of like, give them your genes, and they'll give you the right treatment for you.  But, of course, it's more complicated than that.

I'm hoping one of the researchers will be able to do a post for this blog, to explain, far better than I could, what they're doing.  I really think this is some of the good news we've all been waiting for.

While you wait to read all about it, maybe you'd like to help them out.  Here's the link to their donation page.