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.