Tuesday, 31 May 2016

Not Just Annoying

I've been struggling a lot with dry eyes and dry mouth.

I use polygel eye gel for my eyes - an optometrist put me on to it ages ago.  It doesn't fix it, but it does make it bearable, and I've never found anything any better.

For my mouth, I had been chewing my way through endless sugar-free gum, because I'd read somewhere that stimulates saliva production.  It helped a little, but not all that much.

Although my mouth was getting sore a lot of the time, I treated this just as a nuisance, rather than something serious.

Then I read a post about dry mouth by Dr Donald Thomas. (The rheumatologist who wrote The Lupus Encyclopaedia.)  Dry mouth can cause all kinds of dental problems, including loss of teeth. It's actually a serious problem.

I'm kind of attached to my teeth (well not the wisdom teeth, we parted company on unfriendly terms a while ago.) So, I've started taking my mouth a little more seriously.

I bought a moisturising toothpaste and mouth wash.  I was a bit concerned before I used them, because I've been using "sensitive" toothpaste for years because my teeth hurt. It was with great pleasure I discovered the moisturising toothpaste also helped with the pain in my teeth.

On Monday, I have my rheumatologist appointment.  On top of my list now is my dry mouth and dry eye issues.

Thursday, 26 May 2016

What would you ask a politician?

OK Lovely lupies, we have a Federal Election coming up on the second of July (oh you knew that?)

If you could ask any questions of the main political parties in the lead-up to the election, what would they be?  (I checked the AEC's list of current political parties and there's no way I'm going to try to contact all 20 or 30 of them.)

So here's the deal:

If you lovely lupies give me questions or issues you want to know what the parties plan to do if they get control, I will forward a list of questions to the major parties. (Every party would receive exactly the same questions, so that would hopefully help you compare answers.)

If they send me answers, I'll publish them ahead of the elections.

There's a couple of big "ifs" there.

So my question for you at the moment is, what questions do you have for them?

Issues I think might be of interest to people with chronic illness might include Medicare, the Pharmaceutical Benefit Scheme, the Disability Support Pension, just as a starting point to get you thinking.

You can give me your questions in the comments here or on social media.

Dr Irwin Lim - A Blogging Rheumatologist Worth Following.

I love that there are rheumatologists who blog, and share useful information with people like me who want to stay well informed about our condition. Taking time out of a busy practice to keep us all informed is a pretty awesome thing to do.

One of the rheumatologists who has a blog I find well worth following is Dr Irwin Lim.  You can find his blog here

The following article is reposted from his blog (original is here) about his appearance on the cover of a magazine for Australian doctors.

BJC Health in Best Practice magazine.

I feature in an article in Best Practice magazine, produced by BOQ Specialist, a finance company which deals with the health industry. BJC Health funded our recent expansions at our Chatswood and Parramatta clinics with BOQ Specialist's help.

They then kindly profiled our clinic and yours truly.

Given my mission this year is to keep sharing the narrative of our clinic, why we do what we do, and why we aim to keep improving, I thought I'd share with you the article:

'From the start rheumatologist Dr Irwin Lim was in no doubt as to the type of practice he wanted to lead. He didn't have to look far to find others willing to support his vision.

It began with a broad mind and a grand plan. It resulted in a unique arthritis and rheumatology centre that operates across three separate Sydney locations, with over 40 staff and servicing a 50,000-strong client base.

Father-of-three Dr Irwin Lim completed his rheumatology training at Sydney’s Westmead Hospital in early 2004, joining Parramatta’s two-year-old The Bone and Joint Clinic shortly after.  The clinic, which had been started by another rheumatologist and exercise physiologist, involved a group of individuals working towards a team approach in the treatment of musculoskeletal disease.

“My brother, Errol, who is conveniently a top physiotherapist, owned a successful practice in Chatswood called Help St Physiotherapy and Sports Injuries Clinic. Between 2002 and 2008 Errol steadily built up that clinic, introducing remedial massage and gym services, as well as employing additional physiotherapists.

 “It made sense for the two clinics to join.” But the brothers were worried about mixing business and family. However in 2008 the temptation grew too great and the two clinics merged, with Errol joining as director.

Having evolved to incorporate endocrinology, psychology, geriatric medicine and dermatology to its list of services the duo felt a change of name was in order, so the clinics relaunched as BJC Health.

The year 2010 was a big year for the group, commencing an in-house ultrasound service and pathology collection at its Parramatta site. In May the same year, BJC Health opened its third clinic at Brookvale while a third director was invited into the fold—rheumatologist Dr Rob Russo. Another rheumatology colleague, Dr Herman Lau, joined as director in July 2013.

Dr Lim says while expansion has always been on the cards, the group took its time to develop its offering so that everything fit with BJC Health’s vision.

“There is a key theme of patient convenience and communication. We recognised that the way forward in improving the treatment of acute and chronic musculoskeletal injury would involve a coordinated, comprehensive service that no one doctor or allied health professional could reasonably provide. So we’ve set out to recruit practitioners who, under the right working environment, will come together as a team.”

Technological advancements have seen the group welcome arthritis patients from all over the state, drawn to BJC Health’s unique positioning as a world-class arthritis clinic.

Dr Lim says the group has moved beyond standard consulting rooms to better assist its patients. Clients have direct access to the practitioners via email, can call between appointments and can interact with them online.  Client files are kept on remote servers that the doctors can access at any time, and a recent upgrade has seen the group set up a system for online appointment booking.

Its physiotherapy team use an online exercise portal called MedBridge. Clients are able to watch video links or have handouts printed with pictures. All of which has been done, Dr Lim says, to engage, motivate and empower patients.

“For our patients with inflammatory arthritis, our rheumatology care coordinator can email them videos detailing aspects of the condition as well as the medications to be used. There are hyperlinks to access more patient information on our website and blogs.”

“We want to enhance the conversation and empower our clients. While we are proud of what we have achieved, there is so much more we want to do.”'

Wednesday, 25 May 2016

Tell Me Your Story: Suzanne Sagester

Suzanne Sagester
First time I heard that phrase, I was sitting in my doctor's office yet again because I was sick and flaring.  I have Lupus.  Diagnosed in 2008 and this way of life was my new normal.

I've always been energetic, "go for the gusto", "fun-loving", "life of the party"....you get the picture.  After years of being a legal assistant and an Assistant Property Manager/Office Administrator, I finally decided to go for my dream job.  At the age of 45, I went back to college and graduated cum laude with a Bachelor's Degree in Nursing.  All through school, I was tired...bone tired.  My first job out of college was being a nurse in the Surgical/Trauma Intensive Care Unit.  I had to work 12-hour shifts (NEVER just 12 hours) and a lot of overnight shifts.  That is when I began to get sick. The first major illness I had was pleurisy and I was out of work a week.  I just never seemed to recover.  I was always exhausted and catching everything coming down the pike.  Doctors all diagnosed me with "my age" and "work" being the culprits.

I ended up having to leave my dream job because I just could not do the overnights and it was required.  I got a job as a RN for a gastrointestinal group, ending up as Charge Nurse for them.  A highly stressful job.  I was repeatedly sick.  Always upper respiratory infections, colds and viruses...saw my PCP and pulmonologists and gastro docs, etc.  After one particularly bad illness, my body was in awful pain and I felt like I was made out of lead.  My PCP took blood work again and this time he called me to tell me he thought I had Lupus and sent me to a rheumatologist.  That was the beginning of my knowing about my new normal.  I was beyond shocked and very scared because this disease can invade your brain, kidneys, lungs, skin and even the gastrointestinal system.  It can be fatal.

I ended up having to leave my job after a three month absence due to illness.  I lost many friends because they got tired of asking me places and I was either sick or too tired.  The people in my family who have not researched Lupus don't understand and, even though they mean well, they offer advice such as "don't let it rule you", "exercise", "force yourself to get out more", "you don't look sick", and on and on.  Everything has changed for me and there have been many times when I thought about suicide.  I am a Christian so it is not an option; but I did and have seriously considered it.

Lupus is a big lie.  It will allow you to feel good a day or two and you find yourself cramming everything into that one or two days, which overdoes it and then you're sick for a week or more.  The symptoms go from headaches to your body feeling like it's been punched for hours to hair falling out to nose and mouth sores, to skin lesions that leave scars, to weight gain and high blood pressure because of all the meds you have to take...or all of them together.  Making plans is almost impossible because you NEVER know when the wolf will strike.

This is my new normal.  Every.  Single.  Day.  And lots of my Lupie friends have it worse.  Their organs have been attacked.  I have had numerous CT scans of my abdomen and lungs because of problems.  The fear of this and the depression is overwhelming.  That is the New Normal and it is hard and sad.  Hopefully, new and better medicines will become available to cure Lupus.  Maybe my Lupus will go into remission and not come back.  That is my prayer for us all.  Until then, we will just continue to live our New Normal lives the best we can.

Suzanne Sagester

Image: gingerbread men with differing outfits.  Text: Every story of life with lupus is unique. For World Lupus Day 2016, we're taking the whole month of May to share our stories.

This post was part of World Lupus Day activities throughout May on Sometimes, it is Lupus.  

Tuesday, 24 May 2016

Assessing the Safety of Therapeutic Goods

Do you ever wonder who is responsible for making sure medications and other therapeutic goods are safe?

This is a brief video by the Therapeutic Goods Administration on how they assess the therapeutic products they will approve for use in Australia.

Every therapeutic product (including the "natural" ones) is meant to cause changes in the body - which means that they all have risks as well as benefits.

When the TGA approves a product, that does not mean the product is "harmless" or is safe for non-approved uses.  It means that the benefits outweigh the risks for the particular purpose the product's been approved for.

The TGA keeps a register of every product it has approved for use in Australia, you can go to their website and search medications you are taking (both prescription and non-prescription) and find information about the product, including any recalls or other press releases, and often consumer safety information.

The internet's made the world a much smaller place, but beware of where you buy any medicines. If you buy from outside Australia, you may get a product the TGA hasn't approved, or may not be made to the specifications the TGA's approved, and it may even be an illegal import. (So it's possible to buy a medication that can both make you sick and make you party to an illegal activity.)

Oh, and if you do have a problem with a regulated product, make sure you (or your doctor on your behalf) report it to the TGA - that's vital information the TGA needs to keep doing its job properly.

Sunday, 22 May 2016


The content of this post has been removed, after a check with the Pharmaceutical Goods Administration confirmed that the product is not approved for use.

There are legal implications in anything that could be seen as promoting a non-approved therapeutic product.

Comments have also been removed, and no further comments will be published.

Monday, 16 May 2016

Five Years of Sometimes, it is Lupus

Image three toy polar bears. Text: It's easier to bear, because we're facing it together.

Sometimes, it is Lupus is five years old today.

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

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

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

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

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

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

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

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

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

Sunday, 15 May 2016

Tell Me Your Story: Robyn Duffield

Lovely Lupie Robyn Duffield,
with her husband Stephen who
has Parkinson's
A parky and a lupie

We sit and ponder the future
what will it be...
as a parky and a lupie we laugh and cry
as our future is not what we thought it would be

We know we need to exercise
and the lupie is good at that
while the parky would just like the arm to swing
rather than acting like a brat

We both struggle with fatigue and get tired
the parky has a nanna-nap
the lupie crashes early in the night
while the parky moves all night like a flap

The pain we have is different
sometimes we feel like two stones
the parky has stiffness and freezing
the lupie just wishes the body joints don’t moan

There is no cure the doctors state
but together we will cope
as the parky and the lupie
now have a shared single vision to elope

Stress is not good for us
so we are lucky to be together
to help us through the challenges
that we will face every day forever

If you like Robyn's poetry, you can find more (along with her husband's poetry about living with Parkinson's)  here: http://www.parkypoems.invictaprojects.com.au/blog/?p=10

This post was part of the World Lupus Day activities, being held throughout May on Sometimes, it is Lupus.

Saturday, 14 May 2016

Pathology Will Continue to be Bulk Billed

The Don't Kill Bulk Bill petition has
It's amazing what can happen in an election campaign.

The campaign's barely begun, and Prime Minister Malcolm Turnbull has announced that the Government's come to an agreement with pathology providers to allow pathology services to continue to be bulk billed, and no costs passed on to those of us who rely on the services.

The current government clearly didn't want this to become a major election issue.

I watched the announcement with interest, as it came in the middle of the first leaders' debate. The agreement was the pathologists was that the pathologists would absorb the extra cost, and in return the government would act to protect them from unfair rises in rent on pathology collection centres.

It's definitely a win for patients.

The government has said the cuts to the bulk billing incentive would save up to $650 million over four years.

Because of the agreement between the Government and Pathology Australia, the Don't Kill Bulk Bill petition has been closed.

Tuesday, 10 May 2016

Lupus Survey Results - A Picture of Us

Image: orange ribbon. Text: World Lupus Day 10th May
If you filled out the lupus survey, thank you very much.
The results are below - you may find you have to scroll side to side to see everything.
There are some issues with the reliability of the survey - there was only one male respondent, and since ten percent of lupies are men, that's a bit of an under-representation.  Apart from that it was only a sample of 99 people, which is a very small sample, and of course it was self-selected (people chose for themselves to fill it in), rather than a true random sample. Even with all that taken into account, I still think it gives us a good picture of ourselves:
We're of a wide variety of ages, and most of us had a significant time lapse between our first symptoms and our diagnosis.  For a quarter of us that time lapse was ten years or more.  (I'm sure it would be very interesting for someone to research at some time, just what happened in those ten years, and why so many diagnoses took so long.)
In the general population, about 1 in 68 children is diagnosed with an autistic spectrum disorder. Of the 70 lupie parents who responded to the ASD question, 12 had a child or children diagnosed with an ASD.  That is clearly well above the amount that would be expected. This fits with other studies which have indicated that children of mothers with lupus might have an increased risk of autism. Again, those studies are few and science is only at the very beginnings of understanding why this might be the case, but we have borne it out in our own little survey.

The survey looked at another pet issue of mine - people with invisible illnesses being criticised for using disabled parking spaces.  The vast majority of respondents didn't have disabled parking permits.  Of those who did, about half used their permit and never had any problems.  Of the other half, a small number were afraid to use their permits, and a significant number had received criticism.
On the question of the pain experienced by lupies - no-one claimed to be completely pain-free even on a good day.  For most people, pain on a good day ranged from 3 to 5 on a ten scale.  On a bad day, most lupies reported a pain scale from 8 to 10, with no-one having a pain level below four.
The vast majority of us are chronic liars, admitting on the survey that we do lie to family and friends and say we are "fine" when we most certainly are not.  (Only 11 respondents claimed that they did not do so.)
Most of us have gut symptoms.  About half of us have gut symptoms that are affected by gluten, lactose, or both.  A quarter have gut symptoms that aren't affected by either of those. Lactose came off as causing issues for far more people than gluten did, and the majority affected by gluten were also affected by lactose.
Brain fog (cognitive dysfunction) is a problem for all except one of us.  That one person, I salute you.  Most had relatively mild to moderate brain fog problems. About a third were had a more serious issue, regularly forgetting important things or being confused, or even at the point of wondering if they had dementia.
There were no surprises in the question of who diagnosed us.  The vast majority were diagnosed by a rheumatologist with a GP being the next most common doctor to do the diagnosis.
More than half of us took steroids and felt they had caused us to gain weight. About a quarter of us don't take steroids.  Eleven people took steroids but didn't notice an effect on their weight.
As for the impact on everyday life, more than half of us reported that lupus changed everything. Of the rest of us, most said it had a moderate to serious effect. None of us said there was no change.

Summary of responses

Are you female or male?


What is your age range?

Under 2033%
21 to 3099.1%
31 to 402727.3%
41 to 502626.3%
51 to 601919.2%
Over 601515.2%

How long was it between when you first had symptoms and when you were diagnosed?

I don't remember88.1%
less than 1 year1414.1%
1-2 years1414.1%
2-3 years1313.1%
4-5 years1313.1%
6 -7 years66.1%
8 - 9 years66.1%
10 years or more2525.3%

Do you have children diagnosed with Asperger's or another Autism Spectrum Disorder?

I don't have children.2828.6%
I have children, but don't have any diagnosed with an ASD.5859.2%
I have one or more children diagnosed with an ASD.1212.2%

Have you been criticised for using a disabled parking spot?

I don't have a disabled parking permit.8080.8%
I have a permit, but don't use it, because I don't want to be criticised.33%
I have a permit, but don't use it for other reasons.00%
I have a permit, and have been criticised for using it.77.1%
I have a permit and use it, and have never had a problem.99.1%

Using a scale of 1-10 (1 is no pain, 10 is the worst pain imaginable), what is your level of pain on a "good" day?


Using a scale of 1-10 (1 is no pain, 10 is the worst pain imaginable), what is your level of pain on a "bad" day?


Do you regularly lie to family and friends, and say you are OK or "fine", when you are in pain, fatigued, or suffering other symptoms?


Do you have gut symptoms that are made worse by gluten or lactose?

I have no gut symptoms.1515.2%
I have gut symptoms, but they are not affected by gluten or lactose.2727.3%
I have gut symptoms which are affected by both gluten and lactose.2727.3%
I have gut symptoms that are affected by gluten, but not lactose.88.1%
I have gut symptoms that are affected by lactose, but not gluten.2222.2%

Do you have "brain fog"?

I never get brain fog.11%
I sometimes forget small things.2626.3%
I regularly forget small things.2222.2%
I sometimes forget more important things, and find myself a little confused.2222.2%
I regularly forget more important things and find myself confused.1515.2%
I sometimes worry I might have dementia.1313.1%

Who diagnosed your lupus?

General Practitioner2323.2%
Another specialist99.1%

Have you found steroids (eg prednisone) have caused you to gain weight?

I don't take steroids.2727.3%
I take steroids, but haven't noticed an effect on my weight.1111.1%
I take steroids, and believe they have caused me to gain weight.5454.5%
I have steroids and believe they have made it harder for me to lose weight I already had.77.1%

How has lupus affected your day-to-day life?

No effect at all.00%
Little effect44%
Moderate effect2121.2%
Serious effect.1515.2%
Lupus has changed everything.5959.6%

Number of daily responses

January 10, 20166
January 11, 201628
January 12, 20163
January 14, 20164
February 21, 20162
March 7, 20163
March 8, 20162
March 14, 20161
March 17, 20163
March 31, 20161
April 3, 20161
April 5, 20161
April 6, 20166
April 7, 20162
April 10, 20161
April 11, 20161
April 12, 20161
April 16, 20162
April 17, 20162
April 22, 20162