Lupus Nephritis Survey

Click here to take part in the survey.

British research organisation Opinion Health is looking for Lupus Nephritis Patients in both the USA  and Australia to take part in a survey aimed at improving the patient experience.

If you want to take part, click on the link to give your information.  This will be followed up with a telephone interview.  The phone interview will take 60 minutes, and will take place before the 24th of October.  So if you are interested, you don't have much time to sign up.

Participants will be rewarded with an Amazon voucher ($US 160 for US participants, $AU 220 for Australian participants.)

Quick Health Risk Check

For a quick check of you risk for heart disease,
kidney disease and diabetes, go to the
Health Direct Risk Checker.

OK lovely lupies, I know we all spend too much time at the doctor, and far too much time worrying about our health.

If you want to quickly eliminate some worries, check out the Health Direct Risk Checker. You fill out a five-minute survey, and get an assessment for your risk for heart disease, kidney disease and diabetes, and some personalised advice on reducing risk factors.

Health Direct is an Australian Government funded site, which provides reliable information on a number of health matters, including medication information sheets, and a symptom checker.

More useful information from Health Direct:

• Autoimmune diseases:https://www.healthdirect.gov.au/autoimmune-diseases
• Lupus: https://www.healthdirect.gov.au/lupus
• Living with Lupus:https://www.healthdirect.gov.au/living-with-lupus
• Lupus Treatment: https://www.healthdirect.gov.au/lupus-treatment
• What causes lupus?https://www.healthdirect.gov.au/what-causes-lupus
• Lupus Symptoms:https://www.healthdirect.gov.au/lupus-symptoms
• Lupus Diagnosis: https://www.healthdirect.gov.au/lupus-diagnosis

Exhaustion

When lupies talk about fatigue and exhaustion, healthy people tend to say something like, "I get tired, too."

Let me tell you what fatigue for a lupie is like.

I'm in the process of painting our front room.  It's a long, slow job, because I can only use a paint roller for about five to ten minutes before I become exhausted and have to stop.

What does exhausted feel like?

Stage one: Everything starts to hurt, I'm unbelievably tired, and anyone looking at me will notice the redness appearing across my nose and cheeks (the infamous lupus butterfly rash.)

Stage two: I'm weak all over. My arms are so heavy I can hardly hold them up. My legs and gut feel like wobbly jelly.

At stage two, I have to sit down and have a cool drink.  After about ten minutes' rest, I am able to clean up, then go and sit in the shower for a while.

Now, I know some people will say, things like, "Just push through it, you'll get your second wind."

I used to think that.  Then I tried "just pushing through it" while doing a couple of other basic household  tasks. I've tried it a couple of times because, clearly, I'm a slow learner.  

Guess what happens next after the jelly wobbles?

Stage three is pretty gross.  It comes on quickly (only a minute or two) after stage two. It is simultaneous vomiting, and loss of bowel and bladder control. That's right.  All at once.  At the same times, my legs tend to buckle underneath me, and I find myself sitting on the ground totally incapable of helping myself.

I don't push myself past stage two any more.

Lupus in Australian Indigenous communities will be the focus of a new research project

Dr Fabien Vincent

Sometimes when we're dealing with a condition like lupus, it seems like we're in it on our own, and no-one else is doing anything about it.

Actually, someone is doing something about it.  I keep saying that my heroes wear lab-coats.  These are the people who are quietly working to improve the lives, and even save the lives, of lupies around the world.  (With six million of us world-wide, every step forward in lupus research means a lot to a lot of people.)

One of those heroes is Dr Fabien Vincent from the Rheumatology Research Group at Monash University.

Dr Vincent was recently awarded a Rebecca L Cooper Medical Research Foundation Grant for identifying molecular signatures in Indigenous Australians with lupus. 

He said, "We ultimately aim to improve our understanding of treatment of lupus to develop a more targeted and personalised medicine for patients, and help to close the health gap between Indigenous and non-Indigenous Australian lupus sufferers."

You can find more information about this project here

He has provided a list of some of the recent publications related to his and the Monash team's lupus research.  Here's the list:

Vincent FB, Kandane-Rathnayake R, Hoi AY, Slavin L, Godsell JD, Kitching AR, Harris J, Nelson CL, Jenkins AJ, Chrysostomou A, Hibbs ML, Kerr PG, Rischmueller M, Mackay F and Morand EF. Urinary B Cell-Activating Factor of the Tumor Necrosis Factor Family (BAFF) in Systemic Lupus Erythematosus. Lupus 2018; 27:2029-40
 
Mende R†, Vincent FB†, Kandane-Rathnayake R, Koelmeyer R, Lin E, Chang J, Hoi A, Morand EF, Harris J† and Lang T†. Analysis of Serum Interleukin (IL)-1b and IL-18 in Systemic LupusErythematosus. Front Immunol 2018; 9:1250
† Equal contributors

Vincent FB, Slavin L, Hoi AY, Kitching AR, Mackay F, Harris J, Kandane-Rathnayake R and Morand EF. Analysis of urinary macrophage migration inhibitory factor in systemic lupus erythematosus. Lupus Sci Med 2018; doi: 10.1136/lupus-2018-000277
 
Vincent FB†, Lin E†, Sahhar J, Ngian GS, Kandane-Rathnayake R, Mende R, Hoi AY, Morand EF, Lang T†, Harris J†. Analysis of serum macrophage migration inhibitory factor and D-dopachrome tautomerase in systemic sclerosis. Clin Transl Immunology 2018; 7:e1042
† Equal contributors
 
Vincent FB†, Nim H†, Thomas JPW, Morand EF† and Harris J†. Effect of storage duration on cytokine stability in human serum and plasma. Cytokine 2019; 113:453-7
† Equal contributors

Vincent FB, Bubicich M, Downie-Doyle S, Mackay F, Morand EF and Rischmueller M. Serum soluble Fas and Fas ligand(FasL) in Primary Sjögren’s Syndrome. Clin Exp Rheumatol 2019 

 Vincent FB, Kandane-Rathnayake R, Hoi AY, Slavin L, Godsell JD, Kitching AR, Harris J, Nelson CL, Jenkins AJ, Chrysostomou A, Hibbs ML, Kerr PG, Rischmueller M, Mackay F and Morand EF. Urinary B Cell-Activating Factor of the TumorNecrosis Factor Family (BAFF) in Systemic LupusErythematosus. Lupus 2018; 27:2029-40
 
Mende R†, Vincent FB†, Kandane-Rathnayake R, Koelmeyer R, Lin E, Chang J, Hoi A, Morand EF, Harris J† and Lang T†. Analysis of Serum Interleukin (IL)-1b and IL-18 in Systemic LupusErythematosus. Front Immunol 2018; 9:1250
† Equal contributors

Vincent FB, Slavin L, Hoi AY, Kitching AR, Mackay F, Harris J, Kandane-Rathnayake R and Morand EF. Analysis of urinary macrophage migration inhibitory factor in systemic lupuserythematosus. Lupus Sci Med 2018; doi: 10.1136/lupus-2018-000277
 
Vincent FB†, Lin E†, Sahhar J, Ngian GS, Kandane-Rathnayake R, Mende R, Hoi AY, Morand EF, Lang T†, Harris J†. Analysis of serum macrophage migration inhibitory factor and D-dopachrome tautomerase in systemic sclerosis. Clin Transl Immunology 2018; 7:e1042
† Equal contributors
 
Vincent FB†, Nim H†, Thomas JPW, Morand EF† and Harris J†. Effect of storage duration on cytokine stability in human serum and plasma. Cytokine 2019; 113:453-7
† Equal contributors

Vincent FB, Bubicich M, Downie-Doyle S, Mackay F, Morand EF and Rischmueller M. Serum soluble Fas and Fas ligand(FasL) in Primary Sjögren’s Syndrome. Clin Exp Rheumatol 2019 

Vincent FB, Kandane-Rathnayake R, Koelmeyer R, Hoi AY, Harris J, Mackay F and Morand EF. Analysisof serum B cell-activating factor from the tumor necrosis factor family (BAFF)and its soluble receptors in systemic lupus erythematosus. Clin Transl Immunology 2019; 8:e01047

I have to admit some of those articles are over my head (right, I admit it, all of them are over my head, my degrees are in a very different field) - but that's OK  - I don't have to understand the details, I just appreciate that someone who does understand is doing the work.

If you want to read something of Dr Vincent's that is easier for non-scientists to read, here are some of his articles (originally from The Conversation) that have been republished here at sometimesitislupus.com : 

Explainer: What is the Immune System?

Why 'It's Never Lupus': Television, Illness and the Making of a Meme

Addressing Lupus in Australian Indigenous Communities

The tenth of May is World Lupus Day - if you want to mark the day by doing something positive to help people with lupus, you might want to donate to lupus research at Monash or other Australian Universities. You can find donation links in the right-hand column of this blog.

NDIS

I am overwhelmed at the moment.

A while ago, I applied for the National Disability Insurance Scheme.  I have no expectation whatsoever of being approved, but the agency that supplies the little bit of home help I get under a state government scheme has told me I have to apply because the current scheme is ending.

So I dutifully took the form to my GP, she filled it out, and I dutifully posted it.

Now, I've received the same form from the NDIS, with a letter requesting I have my GP fill it out (again).

Of course, I range the NDIS, and asked if they didn't get the form I already sent.

They got it.  But they want more details - (and apparently the exact same questions should get different, or more detailed, answers) - and they want to know how many days each month I will have a bad day.

Apparently, they think there is a typical month to go by. (Yes, lovely lupies, I can hear you laughing.)

Can I tell you how many days in a typical month I will be sick?  No.  Because I have lupus. (Yes, I'm yelling, and belting my head on the wall simultaneously.)  There is no such thing as a typical month.  I don't know if and when I'm going to have a bad week, a bad day, a bad month, or a bad year. Lupus is completely unpredictable!  How can someone dealing with disability services in any way not know that?

If I don't get help, and have to do the things that I currently have someone else do for me, I will have more bad days - I can predict that, because right now someone does all the heavy work around the house, stuff that will overwork my joints and leave me in serious pain.

If I do get the help, I'll have fewer bad days, because I won't be overstressing my joints.

So I'll probably be more qualified to get help if I don't have help.

Now, apparently the federal government's budget surplus is built at least partly on the slow uptake of consumers using the NDIS. NDIS funds aren't being distributed to support people with disabilities, but just going back into government coffers to be reused for other things. For some reason, disability advocates are complaining about that. (Gee, I wonder what their problem is.)

I can see why.  If you ask the same questions over and over again, expecting to get different answers, then you're never going to get anywhere.  I've barely started the process and I'm considering giving up, because I can't answer their nonsensical questions, and my doctor won't be able to either. (Oh, and because my GP is so popular, I have to wait five weeks for an appointment, but that's another whinge.)


Related Post:
Good Days and Bad Days

I'm a Loser (In a Good Way)

As I've said before,  I'm feeling really well right now.  There's no fatigue, no pain (apart from a sinus infection and a pain in my chest from a persistent cough.)  Really, I am feeling the best I have in years. Even my gut is behaving like a normal person's.

Feeling so well has given me the energy to address some issues that have been bothering me for years.

So (drumroll) I have lost five percent of my bodyweight so far this year.

I know feeling good won't last for ever, but my hope is that the changes I make now will continue to work when the days come that I'm too sore and fatigued to do anything or care about anything.

Discounts

As I mentioned in an earlier post, I'm taking advantage of feeling well at the moment, losing weight with Weight Watchers, and  sewing new clothes in smaller sizes so I have something to wear as I get thinner.

Always on the lookout for a cheaper way to do anything, I've picked up a couple of discount codes, which I'm going to share with you.

Weight Watchers:  If you sign up with a new plan, this link will get you a month free. https://www.weightwatchers.com.au/au/checkout/iaf/?iaftoken=5130021D00

Super Cheap Fabrics.  This is a great place to get sewing fabrics at a good price. If you spend more than $100 they will give you free postage as well - which makes it an even better deal.  This link gives you 15% off on your purchase. http://supercheapfabrics.refr.cc/iriscarden

Note: this is not a paid or sponsored post, however if you use these discount links, I will also receive a discount on my purchases.

Good Days and Bad Days

For some time now, I've had help at home with the heavy cleaning tasks.  This was under a state
government program.

Last week, I had a phone call from the agency which employs the cleaner.  The program was ending soon, and I needed to apply for the National Disability Insurance Scheme if I want the support to continue.

The NDIS is actually for people with far more severe disabilities, and not really tailored for people who need the kind of low-level support that I do.

I don't anticipate being approved for NDIS support at all.

Despite that, I dutifully took the forms to my doctor.  Because the forms are not designed for episodic conditions like lupus that are really debilitating some of the time, but merely annoying at other times, the doctor filled out the form in terms of how things are on my worst days.

If you read my previous post, you would realise that at the moment, I'm really well. I'm pretty much as well as I ever get.  The last thing I want to think about at the moment is what my worst day is like.

So we went through questions and answers:

• On my worst day do I need help to shower?  On my worst day, I don't shower.
• On my worst day can I drive? On my worst day, my son drives for me, neither of us think it's a good idea for me to drive when I'm distracted by pain and fatigue, and my cognitive function is awful.
• On my worst day can I do my own shopping?  I mostly shop on line.
• On my worst day am I able to get around without help?  Even on a good day I use the mobility scooter if I have to go any distance.  On a really bad day I tend not to get out of bed.
• On my worst day, can I write?  It depends which joints are hurting - when it's my hands, holding a pen is painful.

You get the idea.  Here I am, feeling great, having to go back over the the absolute worst lupus does to me.  

What I end up with is a description of a decrepit woman who can't do anything for herself.  That person isn't me - well, it's occasionally me, but it's far from the whole story.

I know the NDIS is a great thing for people who have major impairments. I just wish we still had a system to help people who need lower levels of support as well. And I wish government forms and systems could take episodic conditions into account.

Taking Something Back

A few things led up to it.

Firstly, because my blood sugar had been bad in recent blood tests, I had been watching what I ate and particularly been eating low glycemic index carbohydrates. I didn't realise I was losing weight, until I had to choose something to wear to my daughter's PhD graduation.  There was an outfit in my wardrobe that I made some time ago, but accidentally made a size too small. I tried it on, and it fit.  This was a particularly (to my mind anyway) stylish outfit with a matching coat and bag.

I loved being that bit thinner, and I loved wearing something I thought looked so good.

Secondly,  I finally started to feel better after all the stress and fatigue involved in the travelling to my brother's funeral.

Thirdly, I joined University of the Third Age, so I could be part of their writers' group.  (I had to quit the group I'd been in since I first moved to Ipswich because another member of the group kept harassing me, refusing to take "no" for an answer, because he thought he could heal lupus.  He wasn't a doctor, but claimed to be some kind of herbalist.)  The U3A writing group is great, and I am thriving in it.

Fourthly, late last year, I discovered the Ipswich Art Society and joined. So I began going to the Art Society to paint with other people who also loved art.

Fifthly,  I've always wanted an embroidery machine.  At last one has become available within my price range.  I have the new Elna Air Artist machine, that is cheaper than the older-style machine, because it's controlled from an iPad app.

That was background.

I got to the start of January, and was planning to make my usual resolution to not make any New Year's resolutions.

Then something just snapped inside me. I guess all of those background things came together and I realised something.  Lupus has taken a huge chunk of my life, but I had already started,  without thinking about it too much, to take back some things for me. 

I decided to intentionally take back some more.

My Weight Watchers goal weight and
lifetime membership pins from
30 years ago.

So, I've signed up to do yoga with U3A as well as writing.  I've been to yoga a couple of times, and must confess that I've had to take a fair bit of extra pain relief afterwards.  But, the second time took less pain relief than the first time. Not only that, but I've noticed I'm already walking better: my limp isn't as pronounced. I am feeling good about this.  So I'm going to keep going to yoga, and I'm going to keep taking as much pain relief as it takes to do so.  I spoke to my GP today and she's with me on that - she says that over time, I will probably find I need less and less pain relief.

I also re-joined Weight Watchers.  Thirty years ago, I was a Weight Watchers success story.  A lot has happened since then.  I found a special deal, where I could do the program online for half price for three months.  When I joined, I thought that would be long enough to find out if I could stick to the program, and if I would lose weight despite my lupus medication.  In my first four weeks, I've lost 3.9kg.  The program is much, much easier to stick to than it used to be, and the Weight Watchers app links in with Apple Health so my morning walk, and my yoga session are automatically counted on WW.

I've bought embroidery threads, zips and other materials in bulk on ebay, so that they were cheap.  I

Princess kitten is helping me make
my new clothes.

can now use the $2 a metre poplin from Spotlight, to make clothes that don't look cheap, and I am just going to sew stylish new clothes in smaller and smaller sizes until I get to my goal weight.  I'm making bags and even hats to co-ordinate with my new clothes.  I have decided that from now on, I am going to feel good about the things I wear.

Clothes from my wardrobe that I didn't like, that I'd bought because they were cheap and I didn't care how I looked because I felt awful anyway, have either been put in bags for charity if they were in very good condition, or cut up to make cleaning cloths.  Cutting up clothes that are too big or look ugly is a very therapeutic way to dispose of them, and I won't new cleaning cloths for a very, very long time.

Art Society is about to resume after the Christmas break, and I'm stocked up with both oils and watercolours, and am looking forward to Tuesday morning painting sessions.

And because, I feel well, and because I really really miss my ministry work, I've told the local church that I'm available to preach as often as I'm needed for the forseeable future.

I'm not in denial here.  I know I'm not going back to full-time work.  I know I'm never going back to taequando - my days of breaking boards are well and truly over.  But I can make the most of what I am able to do, and I can choose to do, to wear, and to eat the things that make me feel good about being me.

And lupus can kiss my fat (but diminishing) behind.