World Lupus Day 2017

It's World Lupus Day lovely lupies!

Since last WLD, some lupies have fallen in the battle, and some newly-diagnosed lupies have joined the fight.

One day this disease will be beaten. But until then, we will be here for each other. We will offer whatever support we can.  We will share whatever resources we have access to, and we will get through this together.

To mark World Lupus Day, the Lupus Knows No Boundaries e-report is now available on the World Lupus Day website.

(While you're on the World Lupus Day website, you might sign the petition for the World Health Organisation to give more attention to lupus.)

And on a much smaller scale, here on Sometimes, it is Lupus, our new resource for newly diagnosed lupies has just been published. A big thank-you to the lupies who contributed their advice to that.

Lavender Lunch

The Autoimmune Research and Resource Centre is holding a Lavender Lunch

for World Lupus Day in Lambton, New South Wales.

For more information email www.autoimmune.org.au 

World Lupus Day Event - Please Be a Part of It

World Lupus Day is coming up.

Here's what I'd like to do as our WLD event on sometimeisitslupus.com.

I'd like all you lovely lupies to send me your best advice to someone newly diagnosed with lupus.  So email me iris@sometimesitislupus.com with your first name, the country you are from, and the thing you would most want to tell someone who's just been diagnosed.  (Oh, and write in the email that you give me permission to publish that information.)

Think of the things you wish someone had told you when you were diagnosed.  Let's see if we can put those things in a resource that will help someone else.

Please try to get your email to me by 9 May (Australian time - so that would be 8 May US time) so that I can have it collated and ready to go on World Lupus Day - 10 May.

(Oh, and it's yet to be confirmed, but I may have something nice to give to the person who gives the piece of advice I like the best.)

The novel I'm writing at the moment has everything: zombies, romance, a mad scientist and a sinister mystery.  Patrons of my writing will get an electronic version of the book, before it is released to market. You can become a patron of my writing; my books and blogs, for as little as $1 a month.  Just follow the link below.

www.patreon.com/IrisCarden

Plans for World Lupus Day

Lupus support group leaders from around the world
met in Melbourne the day before Lupus 2017 Patient
Information Day.

One of the things we talked about in Melbourne, when representatives of lupus support groups from around the world met, was the plans the World Lupus Federation has for World Lupus Day.

World Lupus Day on 10 May this year, will have the theme "Lupus Knows No Boundaries."

I'm sure we can relate to that - it doesn't follow the boundaries of geography or race. There's no boundaries on the "surprises" we can get from it either.

But you know what, lovely lupies? There's no limits or boundaries on the number of times we can get up and fight on when this stupid disease knocks us down, either.

Look out for a global study on the impact of lupus that's coming up. The report will be posted on the World Lupus Day Website.

And keep an eye on Twitter.  If you don't already follow @TiffanyAndLupus  and #LupusChat yet, now is the time to do so.  Tiffany and the team are hosting a discussion every Sunday in May, at 3pm American Eastern Standard time. (I think that's GMT -5.) This year will be the fifth anniversary for #LupusChat - so wish Tiffany and the team a happy birthday when you join them.

That's the big, world-wide stuff.

If your local organisation has something planned you'd like to tell the world about, please let me know.  In the lead-up to World Lupus Day, I'll publish whatever events I hear about.

I don't yet know what we're doing here on Sometimes, it is Lupus.  I'm open to suggestions.  Last year, we had our own survey, before that we established the Warriors Wall, and before that the Lupus Business Directory.  If any lovely lupies out there have any ideas, on what to do next, you know what to do: comment on the blog here, or on social media.  Oh, and now that I'm on Patreon, I've decided that if I can get $500 per month from patrons, I'm going to sponsor the local World Lupus Day lunch.  Otherwise, I'll just organise one and everyone can pay their own way, as usual.

Would you give $1 a month to support this blog?  You can become a patron for as little as $1 a month (up to any amount you choose.)  As a thank-you gift, I'll send you a free electronic copy of each new book I release.

www.patreon.com/IrisCarden

Patient Education Conference - Melbourne

The World Lupus Federation is having it's 2017 conference here in Australia, and it includes a Patient Education Conference, which looks really good.

When I say "here" it's in Melbourne, I'm in Ipswich (just near Brisbane).  So that means flights and accommodation, and I am going to have to look hard to find the funds for those. Right now, I'm looking at bank accounts, under the mattress, etc, because this looks like a great opportunity, if I can get there.

On the other hand, registration for patients is only $50, (oops, looked again, that's US dollars, so a bit more than $50) and once registered, patients are allowed to attend all of the scientific conference as well.

If you happen to be closer to Melbourne than me, or have the funds available to get there,  here is the link for more information: http://www.lupus2017.org/program-information/lupus-2017-patient-education-conference#.WKa0eRJ95-U

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

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

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.

Lupus Survey Results - A Picture of Us

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?

Female	98
Male	1

Female	98	99%
Male	1	1%

What is your age range?

Under 20	3
21 to 30	9
31 to 40	27
41 to 50	26
51 to 60	19
Over 60	15

Under 20	3	3%
21 to 30	9	9.1%
31 to 40	27	27.3%
41 to 50	26	26.3%
51 to 60	19	19.2%
Over 60	15	15.2%

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

I don't remember	8
less than 1 year	14
1-2 years	14
2-3 years	13
4-5 years	13
6 -7 years	6
8 - 9 years	6
10 years or more	25

I don't remember	8	8.1%
less than 1 year	14	14.1%
1-2 years	14	14.1%
2-3 years	13	13.1%
4-5 years	13	13.1%
6 -7 years	6	6.1%
8 - 9 years	6	6.1%
10 years or more	25	25.3%

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

I don't have children.	28
I have children, but don't have any diagnosed with an ASD.	58
I have one or more children diagnosed with an ASD.	12

I don't have children.	28	28.6%
I have children, but don't have any diagnosed with an ASD.	58	59.2%
I have one or more children diagnosed with an ASD.	12	12.2%

Have you been criticised for using a disabled parking spot?

I don't have a disabled parking permit.	80
I have a permit, but don't use it, because I don't want to be criticised.	3
I have a permit, but don't use it for other reasons.	0
I have a permit, and have been criticised for using it.	7
I have a permit and use it, and have never had a problem.	9

I don't have a disabled parking permit.	80	80.8%
I have a permit, but don't use it, because I don't want to be criticised.	3	3%
I have a permit, but don't use it for other reasons.	0	0%
I have a permit, and have been criticised for using it.	7	7.1%
I have a permit and use it, and have never had a problem.	9	9.1%

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?

1	6
2	19
3	20
4	22
5	18
6	8
7	3
8	3
9	0
10	0

1	6	6.1%
2	19	19.2%
3	20	20.2%
4	22	22.2%
5	18	18.2%
6	8	8.1%
7	3	3%
8	3	3%
9	0	0%
10	0	0%

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?

1	0
2	0
3	0
4	2
5	4
6	3
7	10
8	29
9	24
10	27

1	0	0%
2	0	0%
3	0	0%
4	2	2%
5	4	4%
6	3	3%
7	10	10.1%
8	29	29.3%
9	24	24.2%
10	27	27.3%

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?

Yes	88
No	11

Yes	88	88.9%
No	11	11.1%

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

I have no gut symptoms.	15
I have gut symptoms, but they are not affected by gluten or lactose.	27
I have gut symptoms which are affected by both gluten and lactose.	27
I have gut symptoms that are affected by gluten, but not lactose.	8
I have gut symptoms that are affected by lactose, but not gluten.	22

I have no gut symptoms.	15	15.2%
I have gut symptoms, but they are not affected by gluten or lactose.	27	27.3%
I have gut symptoms which are affected by both gluten and lactose.	27	27.3%
I have gut symptoms that are affected by gluten, but not lactose.	8	8.1%
I have gut symptoms that are affected by lactose, but not gluten.	22	22.2%

Do you have "brain fog"?

I never get brain fog.	1
I sometimes forget small things.	26
I regularly forget small things.	22
I sometimes forget more important things, and find myself a little confused.	22
I regularly forget more important things and find myself confused.	15
I sometimes worry I might have dementia.	13

I never get brain fog.	1	1%
I sometimes forget small things.	26	26.3%
I regularly forget small things.	22	22.2%
I sometimes forget more important things, and find myself a little confused.	22	22.2%
I regularly forget more important things and find myself confused.	15	15.2%
I sometimes worry I might have dementia.	13	13.1%

Who diagnosed your lupus?

General Practitioner	23
Rheumatologist	65
Immunologist	2
Another specialist	9

General Practitioner	23	23.2%
Rheumatologist	65	65.7%
Immunologist	2	2%
Another specialist	9	9.1%

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

I don't take steroids.	27
I take steroids, but haven't noticed an effect on my weight.	11
I take steroids, and believe they have caused me to gain weight.	54
I have steroids and believe they have made it harder for me to lose weight I already had.	7

I don't take steroids.	27	27.3%
I take steroids, but haven't noticed an effect on my weight.	11	11.1%
I take steroids, and believe they have caused me to gain weight.	54	54.5%
I have steroids and believe they have made it harder for me to lose weight I already had.	7	7.1%

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

No effect at all.	0
Little effect	4
Moderate effect	21
Serious effect.	15
Lupus has changed everything.	59

No effect at all.	0	0%
Little effect	4	4%
Moderate effect	21	21.2%
Serious effect.	15	15.2%
Lupus has changed everything.	59	59.6%

Number of daily responses

Jan 10, 2022	6
Jan 11, 2022	28
Jan 12, 2022	3
Jan 13, 2022	1
Jan 14, 2022	4
Jan 15, 2022	1
Jan 16, 2022	0
Jan 17, 2022	1
Jan 18, 2022	1
Jan 19, 2022	1
Jan 20, 2022	1
Jan 21, 2022	1
Jan 22, 2022	1
Jan 23, 2022	1
Jan 24, 2022	1
Jan 25, 2022	0
Jan 26, 2022	0
Jan 27, 2022	0
Jan 28, 2022	0
Jan 29, 2022	0
Jan 30, 2022	0
Jan 31, 2022	0
Feb 1, 2022	0
Feb 2, 2022	0
Feb 3, 2022	0
Feb 4, 2022	0
Feb 5, 2022	0
Feb 6, 2022	0
Feb 7, 2022	0
Feb 8, 2022	1
Feb 9, 2022	0
Feb 10, 2022	1
Feb 11, 2022	0
Feb 12, 2022	1
Feb 13, 2022	0
Feb 14, 2022	0
Feb 15, 2022	1
Feb 16, 2022	0
Feb 17, 2022	0
Feb 18, 2022	0
Feb 19, 2022	0
Feb 20, 2022	1
Feb 21, 2022	2
Feb 22, 2022	1
Feb 23, 2022	0
Feb 24, 2022	0
Feb 25, 2022	1
Feb 26, 2022	1
Feb 27, 2022	0
Feb 28, 2022	1
Feb 29, 2022	0
Mar 1, 2022	0
Mar 2, 2022	0
Mar 3, 2022	1
Mar 4, 2022	0
Mar 5, 2022	0
Mar 6, 2022	0
Mar 7, 2022	3
Mar 8, 2022	2
Mar 9, 2022	0
Mar 10, 2022	0
Mar 11, 2022	0
Mar 12, 2022	0
Mar 13, 2022	1
Mar 14, 2022	1
Mar 15, 2022	0
Mar 16, 2022	0
Mar 17, 2022	3
Mar 18, 2022	0
Mar 19, 2022	0
Mar 20, 2022	0
Mar 21, 2022	0
Mar 22, 2022	0
Mar 23, 2022	0
Mar 24, 2022	0
Mar 25, 2022	0
Mar 26, 2022	0
Mar 27, 2022	0
Mar 28, 2022	0
Mar 29, 2022	0
Mar 30, 2022	0
Mar 31, 2022	1
Apr 1, 2022	0
Apr 2, 2022	0
Apr 3, 2022	1
Apr 4, 2022	0
Apr 5, 2022	1
Apr 6, 2022	6
Apr 7, 2022	2
Apr 8, 2022	0
Apr 9, 2022	0
Apr 10, 2022	1
Apr 11, 2022	1
Apr 12, 2022	1
Apr 13, 2022	1
Apr 14, 2022	0
Apr 15, 2022	1
Apr 16, 2022	2
Apr 17, 2022	2
Apr 18, 2022	0
Apr 19, 2022	0
Apr 20, 2022	0
Apr 21, 2022	0
Apr 22, 2022	2
Apr 23, 2022	0
Apr 24, 2022	0
Apr 25, 2022	1
Apr 26, 2022	0
Apr 27, 2022	1
Apr 28, 2022	1
Apr 29, 2022	0
Apr 30, 2022	0
May 1, 2022	0
May 2, 2022	0
May 3, 2022	0
May 4, 2022	0
May 5, 2022	0
May 6, 2022	0
May 7, 2022	0
May 8, 2022	1
May 9, 2022	1

Date	Count
January 10, 2022	6
January 11, 2022	28
January 12, 2022	3
January 14, 2022	4
February 21, 2022	2
March 7, 2022	3
March 8, 2022	2
March 14, 2022	1
March 17, 2022	3
March 31, 2022	1
April 3, 2022	1
April 5, 2022	1
April 6, 2022	6
April 7, 2022	2
April 10, 2022	1
April 11, 2022	1
April 12, 2022	1
April 16, 2022	2
April 17, 2022	2
April 22, 2022	2