Wednesday, 30 December 2015

Resolving To Not Have Resolutions

Image: sleeping cat.  Text; New year. Same lupus. Same me. Resolution? Survive.Tomorrow is New Year's Eve.

By tradition I should be thinking about all the ways I could instantly become a better person the day after tomorrow and thereby change my entire life for Earth's next circuit of the Sun.

In case I'd forgotten it was my duty to mark the planet's progress by becoming a better person, Amazon just sent me an email with numerous suggestions for self-improvement books.

I've had New Year's resolutions before.  In fact, I've recycled quite a few from one year to the next, or even from one decade to the next.

This coming New Year, I am resolved that I will not have a resolution.

Yes, you read it right here. I am not going to become a better person for 2016.

I'm going into the next circuit of the Sun with all the same faults, foibles and failings as I've had all through the previous one.

Oh I know, there's lots of ways I could improve.   I also know that if I were seriously going to work on them, I could start any time, not just save it all up for one day of the year.

So what am I going to do in 2016? The same as I did in 2015. I'm going to make the most of good days, while trying not to over-do it, and I'm going to take a rest and care for myself as best I can on the bad days. I'm going to thoroughly enjoy having my family and my animals around me. I'm going to take my medication, do my blood tests and see my doctors.  I'm going to keep in contact with friends through Facebook and wish I had the energy to go and see them face to face.

In short, I'm going to live the life I have, and not beat myself up over my imperfections.

I hope and pray that 2016 will be a good year for all my readers, whether or not you're planning to become a better person.

Thursday, 24 December 2015

Christmas Past, Christmas Present

Image: My dog in santa hat and tutu. Text: may peace, hope, love and joy be yours this Christmas... and may lupus give you a break.When I was a teenager, I would watch my mother on Christmas Day,  spending hours in the kitchen to produce a hot roast meal.  She would sit at the end of the table in the summer heat, pouring sweat after hours in the kitchen, and I would say to myself, "I am never, ever, going to put myself through that."

When I was first married, I went to the opposite extreme.  Christmas lunch was cold ham, and cold vegetables (even canned vegetables), and for the very first year I even used disposable plates so I wasn't caught in the kitchen doing dishes either.  I had done baking beforehand and did have home-made cake, pudding and other treats.  I just wasn't spending Christmas Day in the kitchen.

Over the years, as the kids arrived and grew, I found myself spending more and more time in the kitchen for Christmas.  Anything that could be baked in advance, I still did in the days and weeks leading up to Christmas.  But it was still a heavy day of work. (Especially as, in ministry, I often had at least two Christmas Day worship services to lead first thing in the morning.)  Somewhere along the way we began to start Christmas with a cooked breakfast as well, so I would cook breakfast for the family, then rush out to do the services and then come back to cook lunch.

I've toned things down quite a bit since I first got sick.  For a couple of years the kids and I had Christmas with a friend of mine.  It was much simpler than I'd been used to - and honestly, I think we all enjoyed ourselves more.

For years now, I've been paring things back, simplifying, so that I didn't work myself into having a lupus flare.

This year, I'm doing nothing. Seriously.  My daughter's hosting Christmas, and she and her partner are doing all the work.  They've told me to just show up.  This year, my only job is to enjoy the time with my family (and perhaps spoil my grandchild.)

Can I encourage you to not work yourself into a flare, either?  However you celebrate Christmas, remember it's not about how much work you do or what you achieve.  Christmas is about love.  It's about God's love for the world, and it's about our love for each other.  Please, save as much energy as you can, just to enjoy being with the people you love. (And if you can spend the day somewhere air conditioned, all the better.)

I hope and pray all you lovely lupies out there have a wonderful, peaceful, Christmas, full of love and joy, and without pain.

Thursday, 17 December 2015

Ask And You May Receive

Image: red rose on black background. Text: Asking for help is never easy, but sometimes it is necessary.It's hard to ask for help.

I like to think I will eventually get to that whatever it is I hope to do. Unfortunately, incomplete projects are building up and building up all over the house and yard, and in my computer memory.

When we first moved here, my son had been taking time out from study, reassessing what he wanted to do.  He went with me to buy my mobility scooter, and he is the person who assembles it, and pulls it apart, to put it in and out of the car.  He brings the scooter battery in from the car to charge it up for me. He goes with me to doctors' appointments and remembers what things I have to do to follow-up when my brain fog's at its worst.  He makes sure I take my tablets on time.

But of course, he couldn't just stay home all the time, unless there was a way for him to have an income to do it.  As it turned out, there was.  With help from my GP, we applied for him to have a carer's payment. (There's a link below to help you find information on carer's payments at the Centrelink site.)

Sometimes I worry that it would be better for him to be studying or working, doing "normal" things for a young man, instead of spending all his time with his Mum.  But, at least for now, he's happy for helping me to be his "job".

Strangers in the shopping centre have told him how much they respect the work he does when he helps me out in the shops.  It may not been a career he would have chosen, but for now it's what he does, and he does it well.

I still potter around and do what I can, but anything that requires lifting or stretching, or anything I'm just too fatigued for, he takes over.

To top that off, we also applied for help from the state government's community care services.  I've been approved for one and a half hours per fortnight for help around the house.  That means we have someone come in and do the vacuuming and cleaning the bathroom and kitchen.  After the state government subsidy, I pay $5 per hour for that extra help.

(There's a link below to information for Queensland, but a quick web search should help you find your own state's equivalent.)

Because my daughter and her partner live upstairs, I was assessed as not needing help with the yard, because there are other able-bodied adults who could do the work.  If they weren't there, more help could have been provided for yard work as well.

There's a basic lesson here.

Managing with lupus can be hard.  It can be challenging, and just trying to do everyday things can be overwhelming. But you don't have to assume you have to do everything alone.

It's worth investigating what help is available in your area.  If you don't know where else to start looking, ask your GP what she (or he) can suggest.

Remember, you may not get approved for everything, but you won't get approved for anything if you never apply.  Ask, and you might just get the help you need.  





Further information:

Centrelink Carer Payment: http://www.humanservices.gov.au/customer/services/centrelink/carer-payment

Queensland Government Community Care Services: http://www.qld.gov.au/community/getting-support-health-social-issue/community-care-program/

Thursday, 3 December 2015

Once Upon A Time

Yes, these really are my taekwondo medals.
(Taekwondo ended for me about the  time I needed
a hysterectomy for unexplained symptoms.)
There was a time, before I was diagnosed, when I had enough stamina for an hour and a half training session.

There was a time, before steroids, when I didn't weigh twice my healthy weight.

There was a time, when cooking a meal didn't leave me exhausted.

There was a time when my shoulders (and hips) were right and left, not good and bad.

There was a time when I could not only work full time, but also be involved in sporting and community activities after work.

There was a time when I could drive for hours on end, without needing rest breaks.

There was a time when I could go shopping without ending up exhausted and in agony.

There was a time when I could deal with hot days without starting out completely exhausted.

There was a time when I could deal with cold days without all of my joints being in absolute agony.

There was a time when I donated blood, and didn't just have it constantly taken for tests.

There was a time when I could start writing something and get to the end and still remember what the point of what I was writing was...

Um sorry. I think this was meant to go somewhere, but brain fog.



Wednesday, 2 December 2015

Bloody Tests!

I had my blood tests today.  It's a normal thing I do quite regularly.

I do it so often, I know which is my best vein.

Hardly anyone has ever found a vein in my left arm, so I always present my right.  (Even though it's my dominant arm, and the one I use to hold the walking stick, so it's guaranteed to bruise.)

It took the phlebotomist a while to find the vein - the good vein.

I looked where she was working, and realised, I can actually see some little pinprick scars from previous needles.

According to the phlebotomist, my "good" vein isn't really very good at all any more.

I still have nightmares about all the years I used to give blood, before anyone worked out that there were better veins in my dominant arm.  It was awful, taking three or four goes and a couple of changes of blood taker before the blood flow actually started, and then often it would stop flowing before the bag was full.

So here we go lupies, give me advice.

How do I get my veins to be more accessible?

Do I drink a couple of litres of water before the test?

Do I put hot or cold packs on my arm before the test?

Do I stand on my head for half an hour? (Actually, forget that, I physically can't do it.)

How do you get big, strong, full veins for tests?

(Or am I the only one who ever has this problem?)




Friday, 20 November 2015

Being Prepared

Image: salad with chick pea patties
Pre-cut vegetables, with tomato, chick pea patties and
salad dressing.
I struggle at times to eat properly.  I get to the end of the day, and I just don't have the energy to
prepare a meal.

I'm trying something new - a way to make preparing a meal much easier.

I'm pre-cutting my vegetables.

For the past couple of weeks, I've set aside a day (the day after grocery day) to do two things - to bake something as "treats" for the week, such as biscuits or cupcakes, and to put a week's worth of vegetables through the shredder attachment on the Kenwood Chef.

The idea is that I save energy by only cleaning up my Kenwood Chef once a week, and by reducing the amount of preparation for meals throughout the week.

What I've shredded is a mix of cabbage, carrot, onion, capsicum and celery.  Left dry and in a sealed container in the fridge, this will easily last all week.

It's a good mix, because it's versatile.

Used with a mayonaise style dressing, it's a coleslaw.

Cooked with some lean beef mince, canned tomatoes, a couple of herbs and some olives, it's a bolognese.

Cooked with some lean meat strips and soy sauce, it's a stirfry to go over rice.

Add some tomato and possibly a lettuce leaf or a slice or two of cucumber, along with a fat-free salad dressing, it's a basic salad to have with just about anything.  (In the picture I have chick pea patties:  a can of chickpeas, drained in a colander and then washed under running water, mashed.  Mixed with some garlic sesame seeds and whatever herbs I feel like.  Then formed into patties and cooked in a pan that's been sprayed with canola oil spray.)

Add canned beans, canned tomato, herbs and stock (or tomato paste), it can make a minestrone-style soup.

The effect of preparing my vegetables in advance has been that I've made myself healthy meals now for a week and a half.  I've been looking forward to meals again, rather than just eating whatever is easiest or not bothering to eat.

That little bit of saved effort in preparation and clean-up really has made a huge difference for me. Between meals I mostly have fresh fruit, but I also have small treats I have baked so I don't feel any need or even want of any other "junk food".


Tuesday, 17 November 2015

ARRC Holding Its First Queensland Event

The Autoimmune Resource & Research Centre is holding its first Queensland event on the 6th of December.


It's a "Summer Soiree for Lupus", and here are the details:

6th December 11:30am - 2:30pm The Terrace Cafe The Gardens Club 75 Gardens Pt Rd Botanical Gardens Brisbane CBD QLD.

RSVP essential 25/11 ph. 0249 214095 or HNELHD-ARRC@health.nsw.gov.au  
Enjoy lunch and discussion with Dr Marline Squance.

I'm going, but am not yet sure how I will get there.  It might be a train trip.  I find the drive to Brisbane exhausting, and driving in the Brisbane CBD incredibly stressful. (And I have to be in the Brisbane CBD again the next day to see my rheumatologist.)

Any other lupies from the Ipswich area who are planning to go, please contact me, maybe we can travel together.

I hope I see lots of you lovely lupies there.


Monday, 9 November 2015

Please Help A Fellow Lupie Update

If you wish to help lovely lupie Ruby from the previous post, here is her gofundme link https://www.gofundme.com/py95k69h.

Here's Ruby's story in her own words:

Never in my lifetime have I been this destitute or in this much dire need. After moving out here in the middle of the southern California high desert my health began to decline, I have systemic lupus and it is trying to overfix existing back issues so that I ended up in a wheelchair from disc deterioration and herniation. I can't work and am fighting to get disability. My landlord has carried me as long as he can and now needs the rent I am down to the only utility left, the electric. Water has been off almost four months and I no longer can fill gallon jugs from the neighbours as they are gone now. I have made due but now I need help. Asking is out of character for me and not because of pride, but shame. A dear friend who is a fellow lupus sufferer encouraged me to set up an avenue for help, so here I am. I look to God as my source and am extremely grateful and humbled by whatever assistance I receive. Thank you

Saturday, 7 November 2015

Please Help A Fellow Lupie

Image: coins and pills.  Text: The economics of illness: increased expense, decreased capacity to earn.Most lupies find the economics of illness kicks in at some time.  We have decreased capacity to work and earn income, and increased expenses with doctors, medications, etc.

A few years ago, just as I went from employment to a disability pension, my rent was increased to an amount more than my income. I didn't know how I was going to survive or how I could provide a home for my children.  Some wonderful friends helped me out. I still don't know what I would have done without them.

Now, I'd like to ask you to help me help someone else who is in a dire situation.

Lovely lupie Ruby is in the USA (where doctors and medications are not subsidised by the government in the way they are here.)

I've been talking with Ruby on line for a while now, and I really don't know how this amazing lady keeps going.

As I write this, she has not had running water for four months. She's been collecting water from a neighbour's place, and the taking it home.  The neighbour has now moved, and she just has the water she's already got stored.

She needs a water pipe fixed, and to pay for reconnection. She has a number of other needs to care for herself and her children, but this one is both very important, and urgent.

I think if everyone who reads this blog could give five dollars, we could get Ruby running water again. (If you're also in a terrible financial position, don't make it worse by contributing - only give money if you can.)

Because it's urgent, let's make the cut-off for this really soon.

So send me a fiver if you can, and whatever money I've collected by the 10th of November, I will pass on to Ruby. Let's see what we can achieve in three days.

UPDATE: 

It's just been pointed out to me that this counts as a fundraising appeal under Queensland law, which means I can't ask you for money for me to give Ruby.  I will give her the $30(Aus)  I've already received, and a gift from myself, and suggest she set up a page on gofundme or something similar.  If she does, I will share the link with you.

I had been thinking in terms of a group of people just getting together to give someone a gift they really needed - but it's clearly not that simple.

To the two people who have already given money thank you so much and I have passed that on to Ruby now.

New update:   Ruby's gofundme campaign.  https://www.gofundme.com/py95k69h

Wednesday, 28 October 2015

Now That's Scary

www.lupus.cheezburger.com
This coming Saturday is Halloween.  That's not something we traditionally celebrate here, but I know all about it from American movies.

Halloween is a time for little kids to put on fancy dress and eat lots of lollies, and for teenagers to be murdered in extremely gruesome ways by masked serial killers.  And there's something about pumpkins being used as decorations instead of as vegetables. (Clearly American parents don't freak out about wasting food, or teenagers. Perhaps there's an over-supply of both.)

I have to admit, I don't think the whole Halloween thing is all that scary.  (Maybe if we did the teenager-murdering thing here, I would have been scared when my kids were in their teens.)

Here are some things that really are scary (at least for people with lupus):

  1. Waking up each day and finding you still have lupus.
  2. Reading the information sheets that go with your medications.
  3. A new symptom you've never had before, and haven't even heard of.
  4. Knowing that someone really is trying to murder you - and it's your own body.
  5. Getting the bill for your month's drugs at the pharmacy.
  6. Finding you're not well enough to work, and you have to live on a Disability Pension.
  7. Comparing what you could do a couple of years ago to what you can do now, and wondering about what you will be able to do in a couple of years' time.
  8. When brain fog hits, and you don't know where you are, what you are doing, or even what day it is.
  9. When your pain levels are so high, the strongest medication you have doesn't make a difference.
  10. Hallucinations.
  11. Realising you are out of pain meds.
  12. Catching a cold and just knowing it will lead to infections - because everything does.


Monday, 26 October 2015

Bruises

text: bruises: I have lots. I have been fighting, with my own body.
I always have bruises.

The other day, I had a fall while doing a little gardening.

When I say "a little", I was closing the door of the garden shed, so the stuff inside wouldn't get wet when I turned on the sprinkler.

I fell into the shed and onto the lawnmower.

I think I've mentioned before that inanimate objects are always lying in wait to attack people with lupus.  They attack me more when I'm fatigued and sore.

It turns out, it's not just inanimate objects, it's also natural forces like gravity.

Gravity likes to pull things towards the Earth.

Gravity likes me especially.  It just loves to pull me towards the Earth.

So I end up covered in bruises.

It's the result of attacks from inanimate objects, and the love of Gravity, but mostly it's the result of being in a constant fight - with my own body. (That's the nature of an autoimmune disease - I'm always fighting with myself.)




Saturday, 17 October 2015

It Makes No Sense

Image, Purple flowers. Text: Lupus: it's a little different for everyone who has it.Sometimes, things that happen make no logical sense.

I read yesterday about an issue medical researchers are having with placebos.  Apparently, the placebo effect is becoming stronger, making it harder to test new drugs properly.

A placebo is an important part of testing any new medication.  People in medical trials are either given the actual drug or a placebo (fake - that shouldn't do anything).  If more people get better using the actual drug than using the placebo, it indicates the drug's doing something worthwhile.

There's always been an issue with the placebo working for some patients, even though it really shouldn't.  Now, at least over in America, the placebo is working for more and more patients, affecting the results of medical trials.

It has me wondering about other things I know work for some people, but probably shouldn't.

For example, there's no reason the Paleo Diet should make people healthier.  It's been criticised by nutritionists and scientists.  But I know someone who has lots heaps of weight using it, and her lupus is far better controlled than it was before she started using the diet.  She feels good. (And this particular lovely lupie had been extremely sick.)  For her, it clearly worked, whether there was any reason it should have or not. That doesn't necessarily mean it will work for everyone else, or even anyone else.  But it works for her, and for her that's fantastic.

Again, I frequently hear from someone who tells me how great low dose naltrexone is.  For that person it apparently worked.  It's not an approved treatment, and there doesn't seem to be any actual clinical studies to back it up.  But there's anecdotal evidence that for some people, it apparently works.

The one I most struggle to believe is the woman I heard of who "cured" lupus by giving up coffee.  I would never, ever try that.  It's a sacrifice I just am not willing to make.

So where does that leave us?

We all constantly hear about alternative treatments, diets, "cures", whatever else.  A lot of it is snake oil.  And much of it none of us would ever want to try.  But if you hear of one that does make sense to you, talk about it with your doctor.  (Remember, sometimes alternative treatments can have bad interactions with the medications you're already taking.)

If it's not got any way of making things worse,  maybe some of it is worth a try.  Who knows? You might be one of those people that something works for, even if there's no known reason why it should.

We're all different.  The medications that work for some lupies don't seem to work for others.

Maybe if the placebo effect keeps getting stronger, none of us will need actual drugs one day.  I suspect that day is a very, very, long way off.

Until then, I'll just stick to what my doctors have told me to do and to take, and not ask about trying anything else.  This is more than enough for me to handle.



Reference: Science Alert, The 'placebo effect' is getting stronger with time. http://www.sciencealert.com/the-placebo-effect-is-somehow-getting-even-better-at-fooling-patients-study-finds

Science-based Medicine: Low Dose Naltrexone: Bogus or Cutting Edge Science? https://www.sciencebasedmedicine.org/low-dose-naltrexone-bogus-or-cutting-edge-science/

ABC Science, Paleolithic diet doesn't weigh up. http://www.abc.net.au/science/articles/2013/09/10/3842158.htm

Wednesday, 7 October 2015

Facebook Lupus Chat


Want to be part of a Facebook discussion of lupus, with some of the leaders in lupus research and treatment in the USA?




Hospital for special surgery: Lupus Chat. In partnership with the Alliance for Lupus Research, SLE Lupus Foundation & the Lupus Institute, get answers to your questions! Wednesday, October 14 5.30-6.30 ET Like HSS and join the conversation on Facebook.
https://www.facebook.com/hspecialsurgery?fref=ts

For Australian Eastern Standard Time (Brisbane Time), this is at 7.30am Thursday, 15 October.

(Now that has me thinking, what would it take to organise something similar with Australian researchers and rheumatologists?  Watch this space, when I recover from the adventure of the fleeing feline and have some energy, I'll see if I can manage it.)


Tuesday, 6 October 2015

Fleeing Feline Causes Flare

Photo of Percy, white long-haired cat.
Percy, feline escape artist.
I'm not sleeping very well at night time at the moment.

It's not caused by lupus, it's caused by a cat.  But it has results that affect my lupus.

You see, a couple of weeks ago, I bought another cat. He was a rescue cat, and looked lovely, and I felt I just had to give him a home.

That surely couldn't make me sick, right?  After all, I already had a cat and a dog.

Well, Percy turned out to be a challenge.

He's an escape artist, and has no intention of being recaptured.

The first time he escaped, I managed to get him back late that same night.

The second time he escaped - well - it's been over a week and he's still not home.

I leave out food for him, and the food goes.  I bought a cat trap, and the bait out of the trap goes, but the trap is never sprung.

I've been for walks in the evening and caught sight of him.  Family members and neighbours have chased him and been unable to catch him.

A neighbour tells me he spends his day in the stormwater drain, darting down through a grate on the other side of the road.

So I stay awake all night, listening for the sound of his bell, that tells me he's come to the front yard at least to have a meal, even if he won't come home, and if he's too smart for me to catch him.

(I keep experimenting with loading the bait in the trap in different ways, in hopes that I will trick him into tripping the trap, but he's clearly smarter than I am at the moment.)

Then, because I'm exhausted, I'm both in severe pain, and fatigued. My gut symptoms are flaring up and my rashes are worse than usual.  So I guess I could say an innocent little kitty cat is causing a flare.

Pain means it's harder to get to sleep, but when I do get to sleep during the day,  I sleep really soundly and wake up feeling groggy and disoriented.

Theoretically, when I finally get Percy home, I will be able to go to sleep at a reasonable time and eventually get back to "normal". (Or "normal for me".)  I may need some sleeping pills and some heavy-duty pain relief for a couple of nights to reset the pattern, but hopefully all will be good.

Oh, and I'm getting the fence in the back yard cat-proofed.






Thursday, 10 September 2015

Brain Fog Alert

For a while now, my family's been working on assembling a gazebo in our yard.

Everyone's had a go at it at different times, whenever they've had a the time and energy.

Once we put our outdoor furniture in it, it's going to be a great place to go out and read, and enjoy the herb garden I keep trying to win back from the weeds. (Sadly, the weeds put a lot more energy into the battle than I do.)

It's also right next to an existing shade cover over my grand-daughter's play equipment and sand pit.  So it will be a nice place to sit and keep an eye on her as well.

You may notice that as well as insect screens on all sides, it's got a curtain on one corner, that can be moved back or forward to manage sun and shade.

Actually, it came with curtains for all four corners.

When I finally got around to putting up the curtains, there was only one.

Where are the other three?  I've looked in all the logical places, garden sheds, etc.

No-one else has any idea, none have moved them.

The working theory here is that, in a brain fogged state, I put them somewhere that seemed perfectly sensible in the fog, but which no reasonable person would ever consider.

Perhaps, on another "foggy day", I might stumble across them again.  It seems that there's no hope of finding them while clear-headed.


Update: 
I found them, in the packaging.  I thought I'd already checked there, so maybe I wasn't as clear-headed as I thought when I was searching.

Wednesday, 9 September 2015

Temazapam Dreams

Lately, I've been struggling with fatigue all day.  I've been drinking excess coffee to combat it, so at
Super Grover
Source: http://muppet.wikia.com/wiki/Super_Grover
night, I'm stuck with being awake feeling every little ache or pain and being aware that I'm going to be super-fatigued again in during the day.

To try to get everything back under control, I've taken temazapam (sleeping pills) for the last two nights.

That means I've slept really soundly during the night, but it also means I've been having really weird dreams.

Last night, I was in the world of one of those really gritty modern super-hero movies.  It should have been a Batman film.  But the superhero was Super Grover from Sesame Street. (The guy who couldn't fly because a kitten was on the end of his cape.)

Did it work?

As I said, I've slept really soundly of a night-time.

During the day?  I'm still exhausted.



Friday, 28 August 2015

Anti-Arthritis Packaging.

Image, packaging of product designed to make it easy to pull weeds, with arrow pointing to a screw holding the packaging to the product..  Text New level of hell in anti-arthritis packaging.I'm having a little rant about an everyday problem suffered not only by lupies, but by everyone with
weak or sore joints in their hands - anti-arthritis packaging.

You know what I mean.

Even people who don't have weak or sore hands struggle with it.

It's the pill bottle for your sore joints, that you can't get the lid off because of your sore joints.

It's the five thousand cable ties  pulled so tight you can't get a pair of scissors into them to cut them.

It's the completely sealed ultra plastic that you need a knife, scissors, scalpel, chainsaw, lightsabre and atomic bomb to open.

Today, I discovered a new level of hell in packaging.

I ordered a gizmo to help me pull weeds out of the garden.  If it works, I hope to be able to, over time, get the mass of weeds out of my herb and rose gardens. It doesn't require bending or much strength to get the weeds out roots and all.

You might think that the manufacturers of such a product would stop to think that the type of people who might want to buy it could be people who can't bend much and maybe don't have a lot of strength - maybe people with arthritis.

If you were selling this and wanted to be kind to your customers, you might want to consider that in your packaging.

You might.  Or then again, you might make the packaging of a plastic and cardboard combination that you can't cut or tear and then screw it, very securely, to the product itself.

Now I have a product I bought to make me a little more independent, and before I can use it, I have to ask my son to open it for me.

Wednesday, 26 August 2015

Anatomy of a Lupie

Image:  Picture of painting model.  Text Anatomy of a Lupie.  With arrows, and handwritten notes (copied in text below)


Time for an anatomy lesson.  This is a Lupie's body, and what each part does.

Let's start from the top of the illustration.

Face - for butterfly rash.

Head - for headaches, brain fog, forgetfulness.

Back and neck - for mystery pains.

Joints - for pain.

Gut - for IBS, intolerances, general discomfort.

Skin - for random rashes.

Hands - for dropping things.

Feet - for tripping over on flat surfaces.


If I Only Had A Brain

Image: Information brochures and stressball "brain" from Fresh Futures Market.
I picked up information about the NDIS rollout in Queensland.
Today, I went to the Fresh Futures Market at the Ipswich Showgrounds.

It was designed to showcase services in the local area for people with disabilities or mental illnesses.

Much of it was targeted for families with children who had disabilities, and for mental illnesses.

There wasn't a stand that promoted itself specifically for adults with a chronic illness who cope fairly well with most things but could do with a little help around the house and garden at times.

Maybe I was hoping for something too specific. Or maybe, it's available on a state government's internet site here, with extra things like home modifications here.

Perhaps there wasn't any need for the information to be there at all, as I know how to use the internet.

What there was a lot of, was information about preparing for the roll-out of the National Disability Insurance Scheme, which finally comes to Queensland in the middle of next year.

A quick look through tells me I know most of this information from the email newsletter the NDIS sends out, that I signed up for right at the beginning.  If you need information about the NDIS, and how it may or may not apply to you, try www.ndis.gov.au, sign up for the newsletter, and see what organisations in your area are helping people prepare for the roll-out.

Image: My desk, including brain.
Keeping a brain on my desk, just in case I need one.
The final thing, I wanted to mention, for those of you who've followed my adventures in brain fog, is that a nice lady at the Anglicare stand gave me a brain.  It's a stressball type thing. My son and I both found it very funny, a brain frequently being the thing I most wish I had. (And to tell the truth, most of the stress in my life comes from my brain not functioning at times when I most need it.)

So now, there's a brain sitting on my desk.  Just in case I ever need one.



Monday, 24 August 2015

Lupus Fatigue is Cumulative

Image: Dog hiding under a blanket.  Text: I know I could do it last week, but I can't do it again today, because I did something else yesterday.  That's how lupus fatigue works.I've had a hectic week.

There was nothing wrong.  In fact it was really good.  The British section of the family was visiting.

That meant a dinner out in Brisbane one night, a visit to a Gold Coast theme park, a trip to the little local zoo, an evening of playing a card game, Friday night jazz, and a trip to the airport, apart from normal life.

People with lupus will know what all that adds up to:  fatigue getting worse and worse throughout the week.

Some people can get tired after a busy day, have a good night's sleep, and then be back to normal the next morning.

For those of us with chronic illnesses like lupus,  a good night's sleep, even 12 hours or more, is not enough to recover from one tiring day.  So another tiring day on top of not fully recovering from the day before adds up.

A week with lots of "extra" things, no matter how wonderful those things are, can really add up.

Once I'm already fatigued, I can't just do things I normally could do.

So, for example, I had to drive to the Gold Coast for one of our outings.  It's about an hour and a half drive.  On a really good day I could do it, as long as I had a good rest before coming back.

On a day when I started out tired, I had to stop for a break part way.

I'm told that when I texted to tell everyone else I would be a little late because I needed a rest, someone said I was being "overly dramatic."  I must say I was very proud of my sister who heard this and managed to restrain herself from doing anything that could get her charged with assault.

Did it seem dramatic?  Maybe.  After all, on a really good day, I could probably drive that trip.

On the other hand, the place my son and I stopped was a very, very familiar rest stop.  I definitely go there most times I do the trip to the Gold Coast for any reason.  In fact, I can't actually remember going past that point without stopping.

At the end of the week, driving back from dropping my sister at the airport in Brisbane, I took advantage of the emergency stopping bays on the motorway for a brief recovery time. It's the first time I've really paid attention to them, but now I realise they're hardly ever more than half a kilometre apart.  At the end of a long, exhausting week, just knowing that somewhere I can stop and rest is never more than 500m away, is the most reassuring thing.

Yesterday, I slept. Today I woke with a massive lupus headache that just hasn't gone away.  It might take a few more days before I get back to "normal".  (My "normal" may not be the same as someone else's "normal".)

Some time this week, I'm going to try to gather enough energy to go for a massage.

All in all, it was a great week.  The week or so to recover might not be so great, but some things are just worth the cost.

Wednesday, 12 August 2015

Want to Help Medical Research?

I've heard about a couple of studies that lupies may possibly be interested in helping with.

Firstly a local one (well, Brisbane, which is close to local).

Medical Photographer Kara Burns at the Queensland University of Technology is doing a study on medical selfies, and how taking photos of rashes, moles and other oddities could help with patients medical treatment.

If you have an interesting rash to share, Kara would love to hear from you.

You can find out more about her research here: http://www.abc.net.au/news/2015-08-12/could-a-medical-selfie-save-your-life/6691832 

If you  are interested in being part of her study, her email is kara.burns@hdr.qut.edu.au.



The other is a study taking place in the USA to test a new lupus nephritis drug.

Chris Lovelace from The Patient Recruiting Agency said:

Aurinia Pharmaceuticals Inc. is developing Voclosporin, an immunosuppressant, for the treatment of lupus nephritis, and is conducting this study to demonstrate its efficacy and safety when taken orally twice daily when compared to placebo.  The study will last about twelve months and consist of about 13 visits to the study clinic during that time.


Volunteers who participate may or may not benefit from taking the study drug, but will be contributing to research that may well help those suffering from lupus nephritis in the future. Also, they will have more tests and clinic assessments through the study than they would normally have in the course of their treatment, which may allow their own doctors to more thoroughly assess their condition.  As I’ve seen you note in your blog, the costs associated with chronic disease management can be dangerously burdensome, so this may be a way for some patients to receive more attention than they would otherwise have.

If you are interested in taking part, you can find further information at:  https://www.yourlupusstudy.com/.

Lupie Goes to Sleep

Brain: I'm so exhausted I can't fire another synapse.  Righto team.  This is it.  Lungs, a few deep relaxing breaths if you will, muscles, just relax and release everything.  It's all good.

Left Shoulder:  Sorry to interrupt, but I'm hurting.

Brain: Muscles around left shoulder, try tensing and then relaxing.  Better?

Left Shoulder: No.  Hurting. Pain pain pain pain pain.

Brain: Sorry, team, let's try moving to position B.

Lupie rolls over.

Brain: OK lungs a couple of more deep relaxing breaths and...

Left Shoulder: Pain pain pain pain pain.  Did I mention I'm in pain!

Brain: Sorry team, it looks like a trip to the medicine cabinet.

Right Eye: While we're there can we get some eye gel?  My lid feels like it's glued on.

Left Eye: Same here, and I'm all gritty and sore.

Nose: If we're doing all that, can I have a bit of nasal spray?  I'm all blocky, and if I don't get some help I'll be dripping down Throat soon and causing all kinds of trouble.

Brain: OK. Anyone else need anything from the medicine cupboard?  Right, lets go get pain pills, eye gel and nasal spray. Everyone up.

Right Ankle: Ouch

Left Ankle: Ouch

Right Ankle: Ouch

Left Ankle: Ouch

Brain: Are you guys going to do that the whole way to the medicine cupboard!

Right Ankle: Sorry. Ouch!

Left Ankle: Didn't mean to cause a bother. Ouch!

Brain:  You'll get some of the pain pill.

Right Ankle: Didn't want to complain, but Ouch!

Fully medicated, Lupie returns to bed.

Gut: Grumble, rumble, roll! Grrrrrrrrowwwwwwllllllllll! Hey Brain, did you authorise this chicken sandwich from lunchtime?

Brain: Yes but, they didn't have any gluten free options.

Gut:  Gurgle.  Sclurgle. Groan.  If there's nothing gluten free, we don't eat.

Brain: I know you don't like it, but it was time for pills, and we have to have food with pills.

Gut: Rrrrruruuuummmmmbbbbbbbbllllllleeeeee.  Weren't you going to keep an apple in the handbag for times like that?

Brain: Yes, that was the plan.  But I keep forgetting to do it.  I forget lots of things.

Gut: Glurge, gurgle.  Well, I can't process this.  I'm ejecting the lot, now.

Brain:  Brown alert! Brown alert!  Toilet now.  Move team, move!

Right Ankle: Ouch

Left Ankle: Ouch

Right Ankle: Ouch

Left Ankle: Ouch

Right Ankle: Ouch

Left Ankle: Ouch

Right Ankle: Ouch

Left Ankle: Ouch

Lupie makes it to the toilet in time, and half an hour later, much paler and shaking, returns to bed.

Brain:  OK Team, that was close, but we made it.  Gut, are you sure you're OK?

Gut:  A bit wobbly, but OK.  Just be careful at breakfast time.

Brain: Left Shoulder?

Left Shoulder:  It's kind of bearable. Pain scale maybe five out of ten.  Pretty good really.

Brain:  OK anyone else got anything to say?

Left Hip:  Well, I didn't want to mention it, and I know I didn't say anything earlier, but that painkiller hasn't helped me much at all.

Left Thumb: Yeah, I've got a bit of pain going on here as well.

Left Wrist:  Same here.

Right Big Toe:  Yeah, I'm   ....  crunch!  .... Oh no, I'm OK now.  Go ahead.

Brain: So we've got a bit of breakthrough pain.  We've slept through that before, we can do it tonight.  Lungs, deep relaxing breaths, if you will....

Saturday, 8 August 2015

Defiance

Me: I've ordered a purple wig for my next lupus get-together.

My daughter: You treat lupus get-togethers like a party.

Me: It's a show of defiance against lupus. (And anyway, I don't get out much.)

Monday, 3 August 2015

Living in a Temporal Anomoly

Today is Monday.

That's a surprise, because I was expecting Tuesday.

You see, I had a Monday yesterday, when everyone else was having Sunday.  Not that I did any particular "Monday" activity - I just had it in my head that it was Monday.

I insisted my son take the bins out to the foothpath (which has to be done on Monday.)

It was only this morning, as I was about to yell through my son's bedroom door that he was going to be late for his Tuesday class, that I looked at my watch and my temporal distortion became obvious even to my foggy brain.

It's not the first time I've been living in an individualised time zone, and it probably won't be the last.

Temporal anomalies are just part of life with lupus brain fog.

Wednesday, 22 July 2015

Howling At The Moon

Painting of tree silhouetted against the full moon.
"Moon" by Iris Carden 2015.
For the past couple of weeks, I've been sleeping about 14 hours a night.  I've still been so tired, I've still napped through the day.

I've had no energy while I've been awake, and have managed to watch (read 'snooze in front of') nine seasons of Supernatural.  That's how many are available on Netflix here in Australia.

In my brief waking moments, it's occurred to me that life with lupus is a bit like an episode of Supernatural.

There's definitely something sinister going on.  There's a big, bad wolf loose, and it's not satisfied with just howling at the moon.

The wolf might be just injuring most of us, but it's also killing lupies. It's vicious, unpredictable, and not a part of most people's normal experience.


Image: Sam and Dean from Supernatural. Text "Not silver, you need methotrexate bullets for this big bad wolf."
lupus.cheezburger.com

There's no miracle cure.  In fact, no non-miraculous cure.

Image: Castiel and Dean from Supernatural.  Text: "Can you cure lupus or not?"
lupus.cheezburger.com

We use medication to ease the effects, but there's no guaranteed way to prevent the wolf attacking at will.

Image: Dean from Supernatural talking on phone. Text: "Lupus? Try a protective circle of prednisone."
lupus.cheezburger.com

We have some symptoms that just don't make sense to anyone.

Image: Sam and Dean from Superatural.  Text: "You're saying they're allergic to sunlight, but they're not vampires?"
lupus.cheezburger.com

And sometimes the symptoms can affect how we feel about ourselves and how we present ourselves to others, as well as our physical health.

Image: Sam and Dean from Supernatural looking horrified.  Text: Oh! That rash is awful!
lupus.cheezburger.com
Unlike Supernatural,  a couple of guys armed with silver bullets, rock salt and holy water won't come to rescue us.  We count on people like our doctors.

Image: Sam? from Supernatural summoning crossroads demon.  Text: I'd sell my soul for a good rheumatologist.
lupus.cheezburger.com

And we rely for support on other lupies, people we know have been to hell and back, and are still working on being their own heroes, and ours.

Image. Sam and Lucifer from Supernatural.  Text: Lupus? Welcome to Hell.
lupus.cheezburger.com
Many of us find our best source of strength in our families and our friends.

image: Sam, Dean, Ellen and Jo from Supernatural.  Text: I'm glad we're not doing this alone.
lupus.cheezburger.com


But when it comes down to it, we frequently have to stand up to the wolf ourselves, and be our own heroes.



I guess this post is what happens when I spend the best part of a fortnight sleeping in front of the same television show. It probably could have been worse (though I'm not sure how.)  Anyway, it's 7.30pm and I'm exhausted.  Good night world.

Thursday, 25 June 2015

Money, Money, Money

Image: coins and pills. text: Chronic illness lesson: A diagnosis doesn't mean you're automatically getting better. It means you're going to spend a lot of money on things you wish you didn't need.

My little granddaughter has just discovered money.

She just got a little purse, and her mother and I searched our own purses for 50c pieces (being big enough that a toddler can't swallow them) and found seven of them for her.

For days, she's been getting out her purse and asking for people to count her "monies" for her.

I'm fairly sure no-one else could feel as rich with $3.50 as she does.

I've been thinking a bit about money these days, money and how it relates to chronic illness.

It's not just how it affects me, but others with chronic illness as well.

Being sick costs money.  Even here in Australia, where we have Medicare, the Pharmaceutical Benefits Scheme and Health Care Cards provided by the government as safety nets for people with lower incomes, being sick is still expensive.   The more medications someone's on, the worse it is.

A lot of our disposable income gets disposed into the healthcare industry.  That often leaves people short in other areas.

At the same time, many of us can't work, or can only work part-time, so incomes are low.

One of the fastest growing groups of homeless in Australia is middle-aged women, and a number are homeless partly because of the cost of managing chronic illness.  (There's also an issue with rents being unmanageable.)

Lately, I've been more and more aware of things I wish I had money for.  There's a couple of modifications I'd make to my home to make things easier.  But there's also lots of other things, I've noticed.

You see, my network of friends, and social media friends, includes an increasing number of people with chronic illnesses.

I know some people who can't afford their medications, and it breaks my heart I don't have money to help out.

Someone else I know urgently needs some home repairs.

Others are struggling to raise young children on their own, while coping with illness.

These things aren't my problem. Not really.  And none of these people have asked for my help. But now that I at last have what I actually need (if not everything I would like to have), it really bothers me how many other people still don't have that much.

Money could never solve everything.  What we really most need is a cure.  I know that. But I still wish I could help with these obvious and important needs I see everyday.






Sunday, 21 June 2015

The News You Were Waiting For

Image: dog stretched out, asleep. Text: I found a joint that doesn't hurt! What a great day!My ankles don't hurt.

You were just desperately holding out, waiting for that news, weren't you? It's made your whole day just to know about it.

Well, it really has made my day.

Far too much of my life is influenced by fatigue and pain.  If I have an improvement in one or the other, it's worth celebrating.

Since my "new" now "ex" rheumatologist reduced my medications, I've had a lot of bad pain and fatigue days.  (I haven't got my appointment with my original rheumatologist yet.  Yes, I will do something about it soon.)

I've been looking for other ways to help control pain.  I have used tens machines for a while now.  I have one large one that plugs into the wall, and a smaller (less powerful) battery operated one I can use while I'm out.

I recently bought a heated massager that goes on the couch (I couldn't afford the actual massage chair.)  That helps a little - it's certainly a little better than just a hot water bottle.

Today, I tried my new foot spa for the first time.  Why soaking my feet in bubbly water for an hour makes a difference, I don't know.  What I do know is that my ankles stopped hurting, and were pain-free for the next two hours after the foot spa.

As I write, the pain is coming back, but that's OK.  I got two good hours of being able to play fetch with the dog, and do some washing and dishes, without the standing making my ankles scream in agony.

Two hours pain-free (well in that joint), with only an hour of preparation to make it happen?  I'll accept that as a good deal.

Now, I need to work out how to get my bad shoulder into the foot spa.



Do you have favourite methods for temporary pain relief?  Tell me about it in the comments.


Tuesday, 16 June 2015

Review: League of Mortals, by Duncan Cross

Wesley Peary is a normal high-schooler, with the normal high school issues: school, part-time job,
friends, girlfriends, one teacher with an irrational hatred for him.

And one day, at his birthday pool party, he suffers from diarrhoea, and suddenly, he's thrown into a world that is definitely not normal for a teenager.

Suddenly, in addition to the normal teenager things, he has to face chronic illness, doctors (good, bad, and downright abusive), a girl with Munchausen's, changing diagnoses, fatigue, life and death.

Duncan Cross draws on his own experience of life with chronic illness in this semi-biographical work of fiction (or is it a semi-fictional autobiography?) He opens up the world of Wesley Peary, a normal teenager, thrust into an abnormal world.

Through Wesley's story, Duncan Cross highlights major issues facing people with chronic illness: the varying competencies of doctors, the desire to do "normal" things, the cost of medical treatment and the situation of people who can't pay, the choice to end a life prematurely.

It's a highly believable, highly readable story, with some pain, some humour, and a lot of poo.

People with chronic illnesses will recognise parts of ourselves in Wesley.  People who don't have chronic illnesses may get a window to our world through him.

I loved this book. I had trouble putting it down - in the end I read it in two sessions.  It would have been one, but I needed to sleep.  I saw a lot of myself in Wesley, someone just trying to live their life, and being constantly interrupted by a body that just won't do what it's supposed to do.






For more about Duncan Cross, visit his blog: Duncan Cross.

Have you read this book?  Tell us what you think of it in the comments below.

Saturday, 13 June 2015

Holiday

Meeting a red panda.
Photo credit:
Queensland Zoo, Big Pineapple.
I've just been on a week's holiday with my daughter and granddaughter.

For a week, I've pushed my limits, but I've done it carefully.

I've walked a lot, but I've also taken rest breaks.  I've been out to all the touristy spots on the Sunshine Coast (or a number of them), but I've also spent time soaking in a warm spa at the resort.

I've been to bed relatively early each night. (Sharing a room with a toddler, means everyone's bed time is toddler bed time.) That has helped with my fatigue levels.

I've managed my medication, taking anti-inflammatory medication each morning, before I started the walking.

I've been careful to stay in the shade most of the time; and my daughter did all the driving.

I also took a tens machine for the aches and pains.

The big thing was that I was with someone who understands there are times I just need to stop for a rest. (As much as stopping for a rest is possible with an 18 month old.) And my daughter also understands that if I'm walking anywhere, it's going to take me significantly longer than most people, and waiting for me will just be a part of the deal.

A couple of times I was too stiff and sore to manage putting on my own shoes - but that can happen at home from time to time as well.

All in all, it was a great week.

I probably couldn't keep up that pace for more than a week or so.  But that's OK, a holiday's an exception.

Now I'm home, I'm going to rest a bit before I finish unpacking.

I know lupus has "dis-abled" me to some extent.  But with a bit of care and forethought, it's quite amazing what I can be able to do.


Monday, 25 May 2015

Having "That" Talk

Have you had "that" talk with your family?

I don't mean the one about where babies come from.

I mean the other one.  The one that people with chronic illnesses are forced to think about, but sometimes try to avoid talking about.


It's national Palliative Care Week, which is as good a reason as any to have the talk with your family and loved ones.

I'm not saying that just because you have lupus you need to think about how you want to handle your own death.  I'm saying that because you're a human being you need to think about how you want to handle your own death.  As well as thinking about it, you need to talk about it, specifically talk about it to the people who are most likely to be left making decisions when the time comes.

One of the things I noticed in hospital chaplaincy is that there is a lot of guilt around death, that just doesn't need to be there.

A family doesn't know whether Mum wanted the machines turned off or not.  Either they decide to turn it off, and feel guilty because their decision ended her life prematurely and she might not have wanted that; or they don't turn it off and feel guilty because they're unnecessarily prolonging her death and she might not have wanted that.  It's much easier for the family who knows exactly what the patient wants.

If you had the choice where would you die? In the hospital? In a dedicated hospice? At home with your loved ones?

Would you want to fight to the last?  Do you want to be resuscitated, even when there's no hope continuing to any quality of life? Or would you rather turn the machines off once recovery was considered impossible (or as close to impossible as can be measured?)

Are you burial with a big monument type of person, or a scattered ashes at the beach person?

What do you believe about life and death?

Me? As a human being? As someone with a particular theological perspective on life and death? As someone who has worked around people dying and their families? As a mother?

Here's my thoughts, such as they are.  For me, human life is a sacred gift.  But that doesn't mean it's necessary to prolong it unnecessarily. I'm OK with turning of the life support machines, and I'm OK with not being resuscitated when the time comes.  For me, extreme measures to keep a body alive unnecessarily is just prolonging death.  I'm not afraid of death (although I admit to being afraid of pain.)

I've always thought that, because of my belief in the value of human life, I would oppose any form euthanasia.  I've been rethinking that, in general, and even for myself. In general, people don't all believe the same things I do.  I can't impose my beliefs on them.  Perhaps there is a case for euthanasia, as long as there are strong safeguards in place to ensure the patient has chosen it freely.  I can see a situation where I might choose it - a point at which caring for me is putting an unreasonable strain on my family.  I couldn't cope with seeing my family not coping. I think God would understand, dying to protect someone else.

I'm not so worried about where I die, but would like any useable organs to be donated. I won't be using them any more; and my understanding of resurrection doesn't require all of my bits to be kept together. (I believe God isn't limited by our physical situation.) So for me, giving away organs to people who need them, is just finishing off this life by showing love to my neighbour, as I have tried to do throughout my life.

And I want to be cremated, and my ashes poured over a rose garden.  In fact, we're planting the roses now; so they'll be well-established when the time comes.

That's me.  Your thoughts might be totally different.  That's the good thing about thinking about this stuff before anyone has to make any decisions.

Talk with your family.  It might be uncomfortable, a bit awkward.  But, when the time comes to make the decisions, they will know what you want, which will save them a whole lot of unnecessary guilt on top of the necessary grief they will deal with.



Reference:http://palliativecare.org.au/national-palliative-care-week/

Tuesday, 19 May 2015

Better, Safer, Lupus Drugs on the Way

Researchers at Australia's Monash University have made a breakthrough which could eventually lead to much better lupus drugs - which would attack lupus, not the entire immune system.

One in 1000 Australians is affected by lupus.  That's a lot of people on drugs which are aimed to switch off the immune system.  Immunosuppressant drugs mean people with lupus are more likely to catch infections, and have more trouble fighting infections once caught.

From the report (see reference below):

In healthy people, B cells attack diseases by producing antibodies that destroy invading pathogens. In lupus sufferers, B cells are misdirected to produce autoantibodies – cells that destroy the patient's own healthy tissue. Most commonly, lupus affects the skin and joints, but it can also strike the brain, kidneys and almost anywhere in the body.

In order to survive, B cells rely on a particular protein – called B cell Activating Factor of the TNF Family (BAFF), however too much BAFF causes lupus to develop. Each B cell carries three different kinds of receptor that detect BAFF in the blood stream. The receptors are known as BAFF-R, BCMA, and TACI. It is the TACI receptor that responds to excesses of BAFF, becoming overstimulated and triggering production of even stronger autoantibodies to attack healthy tissue.

Researchers found that if the TACI receptor is deleted, the B cells remain intact but lupus doesn't develop no matter how much BAFF is in the blood.

Dr (Will) Figgett (from Monash Immunology Department) said that while B cells are vital to a healthy immune system, the TACI receptor itself is not crucial - the cell can fight most diseases without it.

This breakthrough means researchers developing lupus drugs have a very specific target.  If future medications could turn off that receptor, without turning off the rest of the immune system, then if not a cure, we could have a treatment with far fewer side effects.



Reference: http://medicalxpress.com/news/2015-05-breakthrough-door-safer-lupus-drugs.html

Donate to lupus research at Monash here:  http://www.med.monash.edu.au/immunology/fundraising/lupus.html

Lupus Patients Suffer More Than We Say

I don't think anyone's going to be surprised about this.

GSK has released the results of a  "global" survey ("global" here meaning North America, Brazil and three European countries) which found patients only told their doctors about the symptoms that annoyed them most.  Things that patients responding to the survey said were real problems, doctors had seen as minor because patients under-reported.

It also found that carers thought lupus patients could do more than they actually could, and that carers did not realise the affect lupus had on confidence, social life, and many other areas.

And the blame for all of this? It's on us, the patients.  We're all too nice.  We try to protect our families and carers. We don't want to dump everything on our doctors.  Surprise, surprise. They don't know what we don't tell them.

So perhaps what we can learn from this piece of research which has told us what most of us already knew, is that we really need to be honest with our family, friends and carers; and we need to make a list of everything when we go to the doctor.


Reference: Survey find lupus patients suffer more than physicians perceive

Thursday, 14 May 2015

Wait? What?

Image: me with sensors for sleep study attached.
Yes, I have done a sleep study.
I don't know if you recall, but I had to make a choice about travelling to Brisbane regularly to see the rheumatologist who diagnosed my lupus and has been my specialist ever since, or to go to someone local.

I opted for the local specialist, rather than the train trip.

Right now, I'm wondering if I made the right choice.

On my first visit, the new rheumatologist looked at my blood test results, poked and prodded my sore spots and told me my lupus was inactive, but I had fibromyalgia.

This week, I had my second appointment with him.

He advised me I don't have lupus.

This would be good news. It would be really, really good news.  But for it to be true, a number of other specialists would have to be wrong, and I would need several other diagnoses to cover all the symptoms that one diagnosis currently covers.

So what's he basing this on? I think my blood tests.  Lupus doesn't always show up on blood tests.  When it's not flaring, or is controlled by medication, it's even less likely to show up.  So my blood test looks healthy. (Well, not quite.)

Last visit, this specialist started on weaning me off my drugs.  He started by reducing my methotrexate (for lupus), but also decided I didn't need my cholesterol drugs because my blood test showed my cholesterol was good (with the drugs). He also took me off sulfasalazine (for lupus, but specifically for my gut symptoms.)

This visit, he put me back on the cholesterol drugs.  Why?  Well, because even though my cholesterol looked fine on the blood test while I was taking them, it's terrible when I don't take them.

I reported that without sulfasalazine, I can't even get away with a tiny bit of gluten occasionally.  He said I am coeliac.  Actually, I've had several gastroenterologists over the years check and recheck that. I've had gastroscopies and colonoscopies.  You name it, I've had a camera look at it.  I'm not coeliac.  The new rheumatologist said they're probably wrong, and if they didn't take a biopsy, they wouldn't know.  (Biopsy of what? They didn't find anything abnormal to test.)

I also told him the results of the tests the gerontologist had done, that the only physical thing she'd found was vascular changes in my brain, which she said was "just normal lupus" and would be throughout my body. The new rheumatologist said she was also wrong, and that it would be migraine.

He suggested I probably had sleep apnea, which would explain my fatigue. I'm fat, I must snore. I do snore. I don't have sleep apnea.  Have I had a sleep study done?  Why yes I have. Well, fibromyalgia can cause fatigue as well.

(He didn't mention my frequently fluctuating liver function. Maybe he thinks I drink.  I don't.)

The next drug he wants to wean me off is prednisone. I'm on five milligrams a day. He wants to take it down to four a day for a month, then three a day for a month, and so on until I'm off it completely. I've tried this before.  A previous doctor helped me get from 25mg a day to 5mg a day.  When we tried to get lower than that, I got sick.  I got very, very sick.  I mentioned this to the new rheumatologist.  He said: "People with fibromyalgia feel fantastic on steroids, they don't like to come off them."

My photosensitivity, he didn't attribute to any particular cause, just noted I'd had it for a very long time.

My big fear is that the same thing will happen with the lupus drugs as happened with the cholesterol drugs: that he will take me off them until a blood test proves I need them.  For me, by the time lupus shows up in a blood test I'm in agony, unable to move, too exhausted to get out of bed, and pretty much helpless.  Worse than that, lupus, out of control, can damage any organ of the body. I had a hysterectomy because of unexplained, horrible symptoms.  Who knows if the next organ to go nuts might be one I actually need (like the liver that's frequently iffy anyway)?  Do I really want to take that risk just to prove a point?

I haven't taken my latest list of medication changes to the pharmacy.  Instead, I've made an appointment to see my GP.

The way I see it, I have three options:

  1. I continue with this rheumatologist and have to accept that every other specialist I have ever seen is wrong and that my one diagnosis should be replaced with several.
  2. I see a different, local, rheumatologist. One that other local lupies have said is good.
  3. I take the train trip to Brisbane every few months, and accept I'll need a week or so to recover.
If you're wondering, I'm really only seriously considering options 2 and 3.  I'm going to discuss it with my GP before I make my final decision.


Oh, now another minor point.  Comparing notes on experiences with rheumatologists, another lupie who tried this one and then changed, said this one doesn't actually believe in lupus. I hope that's not really true.  A rheumatologist who doesn't believe in lupus? That's as crazy as a climate scientist who doesn't believe in climate change.


Related Posts:
Fibromyalgia
Not All In My Head
To Sleep, Perchance to Dream
Vampire Life

lupus.cheezburger.com



Monday, 11 May 2015

World Lupus Day Message From Julian Lennon

I received the following email overnight, and I know the writer would like it shared:










World Lupus Day


Link to Know Lupus Card Game



Dear Friend,

As the Global Ambassador for the Lupus Foundation of America, I am proud to join all of you to raise awareness today on World Lupus Day

In honour of the estimated 5 million people around the world living with lupus, I hope you will challenge your friends and family to KNOW LUPUS so we can create future with NO LUPUS

Play the new online KNOW LUPUS card game and then challenge 10 of your friends and family to beat your score. We have already reached our first milestone and raised $50,000 for lupus research! You can also further our impact by making your own donation to lupus research today.  

Together, we can solve the cruel mystery of lupus and end its devastating impact on millions of families.


Your friend, 
Julian Lennon
Lupus Foundation of America Global Ambassador