Finding Support

When I was first diagnosed with lupus, I didn't know where to turn for support.

Our get-together today.

That's not unusual.  In some places there are great, well-established support groups, in other places, there isn't.  Support groups have to be started by someone.

I eventually found the Lupus Association of Queensland, not because there was some big, organised entity with that name.  No. It exists because a lovely lupie named Gail couldn't find any support when she was diagnosed, and took the initiative to find some other people in the same situation.  She found Annie, and between them, they have organised informal get-togethers on a fairly regular basis for quite a long time now.

There are a lot of lupies who owe a great debt of gratitude to these two ladies who, despite their own health problems, went out of their way to create a community. Although ALQ has a name that sounds like some big official organisation, it really is a community, a network of lupies who are there for each other on-line, with an occasional get-together.  

As people living further away from Brisbane have joined the group online, it's been spreading.  There have been get-togethers over a bigger area, as other lupies have realised we can continue what Gail and Annie have started. 

I had hoped to be able to keep going to Brisbane for get-togethers after I moved, but have found that the drive is getting far too much for me.  So I offered to organise a get-together locally.  It was a great success, with about eight people there today.  

Now I have to say I have great support from family and friends, but there is something special about being able to spend time with other people who are going through the same things.  It makes a difference to be able to feel like a "normal" member of the group (even if this group's "normal" is a little different to everyone else's.)

We had a great morning, and before we left, we booked the cafe again for six weeks' time. (We weren't going to risk that I would forget to do it.) 

A special thank-you to Wray Organic Cafe and Market in Ipswich, for wonderful food, and great service, and for little extra touches (like putting apples for us in each of the place settings) that made us feel very welcome.

Thank you to Ipswich Mayor Paul Pisasale, who shared the event on his Facebook page, to help us connect with other lupies in the are who might not have already found us online. 

How to Show a Lupie Some Love

Tomorrow is Valentine's Day.

I don't have a romantic relationship at the moment, although I did buy a present for a "special someone". (I bought cute shoes for my grand-daughter.) I do have people in my life who I love very much, and I don't think love really needs to be limited to romantic relationships.

Saint Valentine's message was about God's love, rather than romantic love. It's bigger than just one other person.

So, if you have a lupie in your life, and you want to show them a little extra love for Valentine's Day (or any other day, for that matter), what can you do?

I asked lupies on social media.

Believe it or not, we don't all want flowers and chocolate (although, I'm sure those would be nice, too.)

There were two main themes for answers.

The first was: help with the everyday work. Lovely lupie Twyla pretty much summed this up: Some help cleaning my house would be an amazing gift, it's causing me so much anxiety. I've always had a tidy house even battling lupus for 24yrs. But the last couple of months I have no strength or energy. 

Along similar lines, lupies said they'd love premade meals, the washing caught up, and pretty much anything else that would ease the burden of the necessary activities of daily life. Lovely lupie Sarah specified wash, dry AND put away 55 loads of washing.

Cooking a nice meal at home (without the crowds of a restaurant) also got the thumbs up.

The other big theme was a spa day, or similar.  Some suggested massage, one lovely lupie would love a heating pad. There were lupies in favour of manicures and pedicures. (Pedicures are especially valued by those of us who can't reach our own feet anymore.) This doesn't have to be expensive: as lovely lupie Megan said she just wanted chocolate and a hot bubble bath.

There are some lupies who would be grateful just for your time, just to have you turn up and watch a movie or whatever.  There's some who would just love a nice card, and to know you thought of them.

Of course, there's always someone who has different plans. Lovely lupie Pamela's story was unique: I have lupus and heart failure, caused by the lupus, but my husband, in 2007, had a rare tumour in his neck removed. He was the seventh person ever in the world to have had this thing, and was only 36 at the time. He almost died. Luckily he recovered. He was in and out of the hospital the whole year of 2007, and the strain that caused me was unbelievable, especially with a six year old son at home and dealing with my own health issues. His carotid artery burst 10 days post op and we thought we had lost him. But he and I rallied through it and thankfully he's OK now.  His first surgery was on Valentine's Day. So since that day we instead celebrate Happy Tumour Removal Day on February 14th and I make some tumour themed dessert that we then hack into with fiendish delight.  We've had tumour chocolate candies, a tumour cake (with red oozing pudding in the middle), and my favourite... catastrophic haemorrhage over ice cream (with fake, tasty blood  - corn syrup, red dye, and chocolate sauce.) I haven't decided which tumour delight to make this year. 

Of course, what we all most want is a cure.  You can't buy that.  But there are lots of institutions working on it, who would be happy for you to donate to them.  And we'd all feel loved, if we had a cure.

Global Warming? No, It's Just My Own Personal Climate Zone

Every now and then a topic comes up on the Sometimes, it is Lupus Facebook Page, that starts a major discussion.

Yesterday, a lovely lupie asked about suffering from being hot and sweating.

Lots of people have answered to say they have the same issue.

No matter what the ambient temperature, they are hot and sweaty.

Some attribute it to lupus, some to prednisone, and some suspect they might be entering menopause.

There were one or two who are like me.

I have my own personal climate zone.  Global warming won't touch me.  (OK, it might cause cyclones, floods, droughts, etc that could all affect me, but the temperature bit won't bother me.) I've got it all wrapped up.

I can be freezing when everyone around me is hot, and I can be hot and sweating when everyone around me is cold.

Now, I often do suffer aches and pains from the cold in winter, and extra fatigue in the heat of summer.  But I also often am just of doing my own thermal thing, with no relationship whatsoever to the ambient temperature.

I can be cold and shivering on a hot day, or hot and sweating on a cold day.  At times, out of curiosity, I've taken my temperature, and found it quite normal, despite me suffering from the opposite extreme of temperature to what everyone else is experiencing.

Is it lupus?

Is it medication?

Is it just my body being slightly ridiculous?

I don't know.  I don't know if anyone else knows.

All I know is if I'm going away for a couple of days, I need to pack clothes for every possible (or even impossible) weather eventuality.

Anyone want the gold standard treatment for their arthritis?

Gold nanoparticles could be used to build a new class of anti-arthritic drugs that are more effective and have fewer side- effects, according to new research from UOW. 

The researchers, led by PhD chemistry student Lloyd James, tested the efficacy of gold nanoparticles in a type of immune cell or white blood cell, called macrophages, which play a significant role in the autoimmune disease, rheumatoid arthritis.

Gold compounds have been used for the treatment of rheumatoid arthritis for approximately 80 years, and are usually given via intramuscular injection. Its use tapered off in the 1990s due to limited efficacy, slow onset of action and numerous side effects, including kidney damage and skin rashes.

However, this latest research shows new promise for the glittery compound.  In their study, recently published in the Journal of Inorganic Biochemisty, the researchers found that by reducing gold into tiny nanoparticles (50 nanometres or 1000 times smaller than the width of a human hair), more gold was absorbed into the cells, with much less toxicity.

“We found that gold nanoparticles were taken up by more cells and in greater quantities than the traditional gold drugs, but without any toxicity which is often associated with negative side effects in clinical therapy,” Lloyd said.

“Effectively, our study found gold nanoparticles didn’t kill immune cells. While cell death is something that you look for, for example in cancer therapies, when it comes to rheumatoid arthritis, cell death can be associated with negative side effects,”  

So why does shrinking the size of gold particles boost effectiveness and decrease side effects?

“That’s the million-dollar question,” Lloyd said. 

Lloyd and his supervisors think that it may be partially due to there being more gold available in the cell - thousands of tiny nanoparticles compared to just a handful of traditionally sized particles. However this is a question their research is now trying to answer, along with the specifics on just how small the nanoparticles need to be.

The Wollongong-born chemist, who started his undergraduate degree with UOW seven years ago and is hoping to finish his PhD this year, said that while this research is in its early stages, it may eventually show promise for the estimated 445,000 Australians who suffer from rheumatoid arthritis, a painful and incurable condition in which the body starts attacking its own joints. 

“It’s very much a possibility that gold nanoparticles could become a potential treatment for rheumatoid arthritis,” Lloyd said, adding that it may be given orally in the future.  

“I find that very interesting because gold was one of the early success stories for treating rheumatoid arthritis. And now it’s coming full circle.” 

The use of metals for medicinal purposes in actually more common than most people think. Colloidal silver has been used for centuries as an antiseptic, a bismuth compound has been used to quell stomach problems and a platinum drug called cisplatin has been a great success story for chemotherapy.

“Cisplatin is used in the vast majority of testicular cancer cases and has some very successful remission rates. It is now used as a comparison for a lot of other drugs,” Lloyd said.

“I think there is a lot of untapped potential in the medicinal properties of metals.”

This research project also involves Associate Professor Stephen Ralph, Dr Carolyn Dillon, Professor Jenny Beck and Professor Nick Dixon from the School of Chemistry and Dr Ron Sluyter from the School of Biological Sciences. 

Reprinted with permission from University of Wollongong. 

Original story here.

Fibromyalgia

A new rheumatologist has meant a new look at my condition.

There was good news and bad news.

Let's start with the bad news.

I don't just have lupus. I also have fibromyalgia and osteo arthritis.

Is anyone surprised?  Lots of lupies have other conditions, especially autoimmune conditions, as well.  Frequently, it's not just lupus, it's lupus and some other stuff. It's just a part of the whole package.

Now for the good news.

My lupus is actually inactive at the moment.  My current symptoms are all fibro and osteo. (Except for the dry eyes and mouth - those are sjogren's symptoms.)

That means, over the next few months, my lupus drugs can be reduced.  First to go will be sulfasalazine.  Then, over several months, my methotrexate will be reduced to about two-fifths of my current dose.

A bonus is that the methotrexate may be contributing to my brain fog, so I might have a clearer head as the dosage is reduced.

To treat the fibro, I need to increase my exercise.  So, I now need to have a 20 minute walk each day. I also need to get re-started on hydrotherapy. (I haven't been to a pool since my move.  Time to get moving.)

Meeting People

I moved to Ipswich about eight months ago.  Time really does fly.

I've learned where to shop, and all the basics of survival.

Of course, a major part of being part of a community is to build relationships with the people around.

That's where I've fallen down.  I live in a house with my family.  Until recently, I've been going back to my previous community for church.  What I have not made the effort to do is to meet new people.

It is an effort to meet people. It's an effort partly because I'm an introvert, but also because I really do have to find energy to get out.

I'm starting.  Near the end of last year, I joined a Writers' Circle, which has given me the chance to meet other people who love writing.  I have started to go to the local church in the past few weeks, and have been a couple of times with my granddaughter to the playgroup at the church.

Tomorrow is a Presbytery meeting, (Presbytery is the bigger group, that the church congregations in the area belong to), so I can go along, and meet some other people.  It's a whole-day meeting, but as a retired minister, who is sick, I'm fairly sure I can get away with leaving early if I run out of energy. I don't really have to go, but I was invited, and it's a great chance to find out who else is in the area.

At the end of the month, Lupus Association Queensland is having a get-together here in Ipswich.  I booked the restaurant.  That's something I'm really looking forward to, as I hope I will meet other lupies who live in my area.

There's a Friends of the Library group I'd like to join as well, and also arts and crafts groups.  But there's a limit to how many groups I can join.  There's so much I'd love to be a part of, and which could help me find a place in the community, but at the same time, I still need to find the energy for basics as well.  I came home from Writers' Circle the other day, and promptly went to sleep, waking up, still exhausted, about three hours later.

It's like walking a tightrope.  I really do need to get out, meet people, make new friends, have interests outside my home and family.  But I also need the energy for home and family.  And energy is very hard to come by.

I'm sure there's lots of other lupies out there who are struggling with the same issues. Even if you can't work, there are still things you need to do or want to do.  One can't become a hermit, no matter how appealing that may seem on a bad day.  There's always a good day coming up some time, and it would be great to have a friend, or even a couple of friends, around to enjoy it with.

Curses on Carpark Vigilantes

Yesterday, I saw a rather disturbing news story about a "carpark vigilante" leaving a nasty note on the car of people who had a valid disabled parking perming.

I asked on the Sometimes, it is Lupus Facebook page if any lupies had similar experiences.

A disturbing number of people responded that they had been verbally abused, given strange looks, challenged about their right to use a disabled parking space, etc.

I realise "carpark vigilantes" think they are doing the right thing.  They think people are taking disabled parking spots without needing to.

The trouble is, they don't understand a simple, basic, truth.  You can't always tell if people have disabilities. Many are not obvious. Many are not even visible.

Lupus, like many other chronic illnesses, is not obvious to the casual observer, yet it can make mobility a painful, fatiguing nightmare.

To get permits, we need doctors to agree that we need them.  It's not automatic.  Despite the popular myth, they are not "too easy to get".

Permits are issued to people who genuinely need them, whether or not that need is obvious to a random stranger in a carpark.

So to all potential "carpark vigilantes" out there, on behalf of all people with invisible, disabling, conditions:

I curse you "carpark vigilante"
I curse you, 
and beg God to give you 
my symptoms
just for a few weeks.
May you feel like you are dragging
tonnes of weight with every step.
May being awake be enough
to make you feel you have run a marathon.
May every joint of your body
give you agony.
May you constantly need to urgently 
find the facilities,
May your stomach churn and
grumble ominously,
And may you meet someone like
yourself in the carpark.

I only want this for you for a few weeks,
because no-one,
not even you,
deserves it for a lifetime.





Reference: http://www.news.com.au/national/northern-territory/abusive-note-left-on-car-of-darwin-couple-with-valid-handicap-parking-permit/story-fnn3gfdo-1227204133934