Tuesday, 4 August 2020

Good News, Bad News

I had the appointment with the gerontologist who looks after my cognitive issues. (See previous post.)  Because the government is allowing telehealth appointments under Medicare  now, I was able to see her over FaceTime and not have to go into Brisbane.

Here's the good news:  I don't have dementia, just still the mild cognitive dysfunction of lupus.  That huge thing I freaked out about forgetting, she said, was just my brain responding to extreme trauma. Apparently my brain just decided to deal with it by not dealing with it. She's sending me to a psychologist to deal with that.

The bad news: my cognition is such that she wants to limit my driving to just my local area and just during daylight hours.  Which means, while it's not dementia, it's still nothing fantastic, and my world is getting smaller.

The other news: she's changing a number of my medications to ones that are more memory-friendly, including one that's not on the PBS (ie not government-subsidised), so I'll have to pay full price.  It's going to take a few weeks to wean off one medication and go on to the replacement, which is always an adventure.

She also says it's about time for me to do a new sleep study. I don't know if things like sleep studies are still going on right now, but some time in the future, that needs to happen.

Note for overseas readers: Medicare is the Australian Government's universal healthcare system.  The PBS (Pharmaceutical Benefits Scheme) is the Australian Government's medication-subsidy scheme.

Tuesday, 28 July 2020

Time for a Temper Tantrum

I've had issues with cognitive dysfunction for years.  I've had brain scans and other tests, and the only thing of any real note was some vascular changes, which were put down to "normal lupus."

For a couple of years, my GP had me going for regular check-ups with a gerontologist/neurologist, who would monitor my cognitive function.  It was only ever a little bit off, and wasn't getting any worse, so when I forgot to make the next appointment, my GP and I both just shrugged it off and said it probably wasn't worth going back anyway.

A couple of weeks ago, I needed to see my GP for new prescriptions, and found that my GP had left the practice, and I had to see a new doctor. It was the typical lupie first appointment with a new GP, she looked at my record on the computer and said I was down for a lot of medications, some of those must be old things I wasn't taking anymore. I gave her my list of medications (and what they're all for), and yes, I'm still on all those meds.

Fast forward to this week.

Someone mentioned an incident to me, that was the kind of thing no sane person could possibly forget.  It was something huge. I had absolutely no recollection of it whatsoever.

I freaked out.  If I have forgotten that, what else could I have forgotten? How much of my memory have I actually lost?

I set up a phone appointment with the new GP, for this Friday. (It's the earliest appointment I could get.)  I was planning to ask for a referral to a neurologist.

Then yesterday, I started shaking uncontrollably.  It started about midday, and continued until I went to bed.  Weird, I thought, but it was a very cold day, and even though I had a jacket on, the air-conditioner set to heat and a blanket wrapped around me, it sort of still made sense.

Today is not so cold.  Today around midday, I've started shivering uncontrollably.  If I hold my teeth shut tight together so they don't chatter, my whole head shakes wildly.  The only time anything like this has happened to me in the past, I had a raging fever.  I don't have a fever now.

I still have an appointment for the doctor on Friday.  I should just add this weird new symptom to my list of things to talk about with her.

But, and it's a big but:  I'm not just looking at this weird new symptom as some kind of curiosity.  Combined with the big, big issue of what I've forgotten, I'm actually scared.

What I really, really want to do, is lay on the floor and kick and scream and yell, that I don't want the new doctor! I want my doctor! The one I've been seeing for years.

Unfortunately, that kind of behaviour is frowned upon in people over the age of two.

So I'm going to do what I have to do.  Deal with it.  I'm going to talk as calmly as I can with the new doctor and hope she knows what to do about all of this. If all else fails, I'll try to get an extra appointment with my rheumatologist. In the meantime, I'm going to try to keep busy and avoid thinking about what I don't know or don't remember.

Thursday, 9 July 2020

Best Blogs and Other Bits

Hello lovely lupies,
Healthline's Best Lupus Blogs 2020.

Did you miss me?

I had intended to stay with you through the entire pandemic, but things happened.  First was the incident mentioned in my previous post, and then some family stuff including my mother being hospitalised repeatedly.  The stress from all of it combined led to a flare, so I've spent a couple of months in the flare, moving between lying on the couch, and sitting on the couch.

In the meantime, the first wave of Covid has come and gone, and a second wave is starting down in Victoria.  Even Queensland's state borders have reopened, to an extent. People from interstate can come here, under some conditions, with a border pass they have to apply for in advance.  At the moment people from Victoria can't come here at all.  We don't want any of those diseased southerners here thank you.  (Sorry to readers from Victoria.  You know I love you, I just prefer to love you from a safe distance right now.)
I've made face masks.

Preparing for the second wave, just in case it does get here, I've made some new face masks, for myself and for some other vulnerable family members.

Really, however, things here seem to be getting "back to normal".  (If someone knows what normal actually is, please let me know.) I have been out to physical shops, not just buying  things online. The church building is going to reopen, and I am going to miss going to church in my lounge room with coffee and wearing my pyjamas. My granddaughter is on school holidays, having had a term back at her physical school.

Aside from Covid-related matters, the news is that Sometimes, it is Lupus has made Healthline's Best Lupus Blogs for the year again. It's always lovely to realise that not only has someone read what I've written, but apparently liked it.

Hopefully, I will be with you now for whatever else 2020 is going to throw at us.

Sunday, 26 April 2020

My Biggest Mistake

I made my biggest mistake in my 11 years of blogging today.

I shared, on the Sometimes it is Lupus Facebook Pate,  an article about misinformation (that people with lupus don't catch COVID-19) a prominent person in a foreign country said.

My main purpose was to warn lupies that if they'd heard this it was inaccurate.  We have weird immune systems,  that doesn't protect us from other diseases, in fact, anecdotally, many of us catch anything that is going around.

I admit I was also having a bit of a laugh at the person who had announced the misinformation.  In my defence, I'm Australian.  We make a national sport of laughing at all politicians, of whatever party, whether we support them or not.

What I was not prepared for was the response.

Instead of a discussion of how to protect ourselves from this horrible pandemic, it immediately became a massive political argument.

I had no idea of just how strongly people from this particular foreign country feel about their politicians.

I promise I will not be making that mistake again.

So, as always, get your medical advice from your doctor, not from celebrities, politicians or anyone else.

Saturday, 25 April 2020

Facebook Understands

Facebook gave me this helpful recommendation.
I really appreciate online support from others with lupus.  It feels less horrible when I am reminded others are facing the same issues I am.

So, as well as the Sometimes, it is Lupus Facebook page, I'm also part of a couple of lupus support Facebook groups. It helps me stay connected.

I have to say, I was very surprised when Facebook gave me recommendations for groups which it said had similar topics and activity to one of the groups I am part of.

Apparently groups based on department stores and hardware stores also discuss living with lupus, or at least Facebook thinks they do.

Or perhaps, Facebook and other platforms don't understand us at all.

That's OK.  As long as we are here for each other, it doesn't really matter if anyone else "gets it".

Hang in there lovely lupies.  These are strange times, but we'll get through them together (while physically apart.)

Friday, 24 April 2020

Life in the Social Distance

Next to the front door.
Sign available for download
 from Chronically Awesone.
I've been social distancing since about a week before the Australian Government told us to do so.  It's
not hard, if you don't normally go out much anyway.

The only regular outings I had were for groceries, church, writers group and the occasional catch up with family and friends.

I'm talking with family over phone and FaceTime, and with friends over Zoom.

Writers' group has been cancelled, and church is now on YouTube.

Even the pharmacy now has an app, which lets me order medication for delivery without having to leave the house.

I've been to my rheumatologist, because he still does things the old way.  I've been to the GP's surgery for my flu shot, but otherwise, GP appointments have been by telehealth (technical term for her phoning me at my appointment time.)

I order groceries and pretty much everything else I want online. I've found a lot of Australian businesses have gone online, including those wineries that used to only have cellar door sales, jerky and lolly manufacturers, and businesses that used to only supply bulk products to restaurants, etc but are now home delivering bulk groceries..

New weatherproof box for deliveries.
I've put out a sign on the front door, explaining my desire to avoid contact with people. (These signs are available for download from Chronically Awesome in the UK.

One thing I don't want is for the postie or other delivery people to decide there's no safe place to leave a parcel, and to take it back to a post office or depot for me to go and collect it.

To deal with that issue I've bought a large weatherproof box, and placed it beside the front door.  So whatever the weather, there's a suitable place to leave parcels.

The box is behind some trees, so while it's kind of visible,  it's still not really obvious from the street.

Some delivery companies still like to actually see me and confirm I'm the intended recipient, but now the delivery people are signing the paperwork on my behalf.

So, I'm learning to adapt.  It's not a big adaptation, after all.  I'm sure the changes are far more challenging for people who actually do spend a lot of time away from home normally.

How are the rest of you lovely lupies adapting to our new situation? Leave a comment on this post or on the Sometimes, It Is Lupus Facebook page.

Before I finish this post, I want to say a big thank  you, to the people who are making it possible for the rest of us to stay safely home.

Thank You
Doctors, Nurses,
Supermarket staff,
Staff at all other shops and businesses,
Delivery People,
Australia Post Staff
Garbage Collectors,
Cleaners (especially Hospital Cleaners),
Teachers and other Educators who have moved online in minimal time,
All of the Artists of all types who have made their work available online to keep us from going nuts while we socially distance,
Everyone who has helped out an elderly or chronically ill friend or neighbour,
Everyone who has chosen to stay home over doing something they would rather do,
The Clergy of all faiths who've adapted to online worship and finding other ways to support their communities,
Everyone who has had to change the way they work and live their day-to-day lives,
The Politicians who have looked past ideological issues to work together in this crisis.

The Biggest Thank You of All
To all members of the online chronic illness community, for helping each other to get through this crisis, in the best way we possibly can. You are amazing. 

Saturday, 4 April 2020

Hand Sanitiser

I made my own hand sanitiser.
In the annals of things never expected to do, today I made hand sanitiser.

You see, I've been looking for some for weeks, but everywhere is always sold out, or are charging something like $60 a bottle.

So I looked up a lot of recipes online, and came up with my own variation.  I only wanted a small amount, to carry with me when I'm away from soap and water.  I don't go away from home much, but do have to go to the pharmacy, specialist's appointment, etc.

So here's what I used:

3 tablespoons isopropyl alcohol
1 tablespoon aloe vera gel (purchased - I have fresh aloe vera growing, but suspect the gel might go off if not refrigerated.)
a drizzle of rosewater so it doesn't smell so alcoholic.

That's it, just all mixed together.  If I did it again, I would probably also add a drizzle of glycerine to help stop skin from drying out.

It's a liquid, rather than a gel, but to make it thick enough to be a gel, would reduce the quantity of alcohol.  It needs to be 60-80% alcohol to work.

I noticed that the World Health Organisation approved recipe also has peroxide, and I would probably add some of that if I had it, but I don't, and I'm not going to make a special trip out to get it.

The main ingredient is, of course, the alcohol.  Everything else is to make it more gentle on skin, and to make it smell slightly better.

Monday, 23 March 2020

How to access medicines during COVID-19

Coronavirus: how to access the medicines you and your family need

Nial Wheate, University of Sydney and Andrew Bartlett, University of Sydney
Panic buying of toilet paper, no meat or soap on supermarket shelves, and now an apparent run on medicines such as asthma puffers and children’s paracetamol.
The COVID-19 pandemic is affecting us in ways we’ve never had to deal with before. So Australia has announced measures to help people access their medicines.
These include limiting the number of medications people can buy, dispensing only a month’s worth of supply at a time, and placing some behind the counter.
And, of course, pharmacies are essential services so they will remain open during the forthcoming shutdown period.

Read more: Can coronavirus spread through food? Can anti-inflammatories like ibuprofen make it worse? Coronavirus claims checked by experts

There are also ways people who are self-isolating or at risk can access their medicines, from using apps, to government-funded free home delivery.
Here are some of your options for the weeks and months ahead.

Purchase limits on essential medicines

There are now purchase limits on certain medicines.
Customers in pharmacies are now limited to one of the following per person (or one month’s supply, if relevant):
  • asthma puffers (Ventolin) and other medicines used for the treatment of chronic obstructive pulmonary disease (COPD)
  • paracetamol
  • Epipen, to manage severe allergic reactions
  • some heart medicines, such as glyceryl trinitrate
  • some diabetes medicines, including insulin
  • some anti-epileptic medicines.
Purchasing limits have also been placed on many other prescriptions.
Pharmacists have been directed to only dispense one month’s supply for more than 50 different medicines used to treat a range of conditions, including: cancer, Parkinson’s, chronic pain, blood pressure, and contraceptives.
Children’s paracetamol will now be kept behind the counter.

Read more: Ibuprofen and COVID-19 symptoms – here's what you need to know

What to do if you can’t get to your local pharmacy

If you have been directed to self-isolate or if it’s risky for you to shop at a pharmacy, there are still options.
If you are in isolation, are over the age of 70, of Aboriginal or Torres Strait Islander descent, or have a compromised immune systems or chronic health condition, you may be eligible for a free service to deliver medicines to your home.
This scheme only covers the costs of delivery for Pharmaceutical Benefits Scheme (PBS) medicines. The scheme does not include everyday products like hand sanitiser or regular over-the-counter medicines.

Read more: Why are older people more at risk of coronavirus?

If you’re not eligible for the home medicines service, one way to get your prescription and non-prescription medicines delivered to your home is via an app like mymedkit.
This Australian-based company allows you to take a photo of your prescription and upload it into the app, where the script is then filled by your local pharmacy.
You can choose what day and time you want it delivered so you can be there when it arrives. And if you don’t need prescription medicines, they can also deliver other products like vitamins, skincare creams, first aid kits, baby wipes and nappies.

Read more: Instant prescriptions might be the way of our digital future, but we need to manage the risks first The Conversation

Nial Wheate, Associate Professor | Program Director, Undergraduate Pharmacy, University of Sydney and Andrew Bartlett, Associate Lecturer Pharmacy Practice, University of Sydney
This article is republished from The Conversation under a Creative Commons license. Read the original article.

Saturday, 21 March 2020

Face Masks

As things heat up with the pandemic, some lupies are using face masks when they have to go out in public.

I tried to find out if any health authorities are actually recommending that. The closest I could find is the World Health Organisation which says people with COVID-19 should wear them, and healthy people in contact with people with COVID-19 should wear them. I can't find any mention of people with chronic illness.

Therefore, that's a definite I don't know.

So as always, check with your doctor if you have the opportunity, and make whatever you feel is the best choice for your health.

I do know that using a mask incorrectly can increase the risk of infection.  If the virus is on the mask, that is rubbing against your face, that's a risk factor.  If you're using one, be careful to do it correctly.

Here's the WHO's advice on who should wear a mask.

And, importantly,  here is how to use one properly.

If you need to make your own,  and can sew, you'll find a pattern here: https://freesewing.org/fu-facemask-freesewing.org.a4.pdf.  The instructions to go with the pattern, if needed, are here: https://freesewing.org/docs/patterns/fu/

Remember if you're using a reusable mask, it will need to be washed or, soaked in disinfectant prior to washing, as soon as it comes off. Be careful how you handle it until it's clean, and wash your hands.

Stay safe out there lovely lupies.  We're going to get through this.


Just saw this video from the Lupus Foundation of America, in which Duane Peters from the Foundation asks Rheumatologist Dr Blazer about safety going out, and she recommends masks and gloves.

Friday, 20 March 2020

Things to Do While Being Physically Distant

Well, lovely lupies,  we were already super-careful about infectious diseases, then COVID-19 came along and ramped the risks up.  If, like me, you're avoiding going out unless you absolutely have to, you might want something to keep you occupied at home. And if, like me, you have no money, you might want those things to be free (or dirt cheap.)

So here's some suggestions:

  • Visit the some of the world's best art galleries (virtually) at Google Arts and Culture
  • Catch some live London Theatre at What's on Stage.
  • Other live theatre is  available at Filmed on Stage.
  • Go to the ballet.  Here's 12 Ballet Performances you can Watch Right Now.
  • Watch some of Europe's best Opera performances at OperaVision.
  • Read a free ebook from Project Guttenberg. If there's not enough choices there, go to Nothing in the Rulebook, for a list of 45 places you can download free ebooks.
  • If you prefer to have someone read a book to you, listen to an audio book from LibriVox.
  • Learn something new with one of 1,500 free online courses at Open Culture.  This one also has free courses for kids K-12 (which could be helpful if the schools close), as well as movies and ebooks.
  • Learn to paint. Monte Mart has free online lessons.
  • Plant a vegetable garden.  (I'm doing this - it's going to take a while, because I manage about five minutes of physical labour before I'm exhausted and have to rest for the rest of the day.) You can buy seeds cheaply online, or here are 25 Foods you Can Regrow Yourself from Kitchen Scraps.
  • Want to join in the Adult Colouring craze?  Just Colour has 1,500 free colouring pages.
  • If you like my writing, I have made my published books available for free download for the duration of the pandemic.  Of course, if you like my writing and would like to pay for one of my books, you're welcome to buy from any online bookshop, or direct from the publisher.
  • Write your own book. Paint, sew, do some craft, catch up on all the odd jobs you've been putting off around the house or garden.
  • Tired of being inside? Grab your hat and sunblock and go for a walk. Just choose somewhere that's quiet, and keep your distance from other people you see on the path.
  • Go for a drive.  When my kids were younger, we'd go for drives in the bush, and every time we saw cattle, we'd yell "Cow!". The kids called it "cowing".  It may not suit everyone's taste, but we used to laugh ourselves silly. A variation is the "bear hunt" that's being shared on Facebook.  People put teddy bears in their windows, so families can drive around looking for bears.
  • Have a family picnic - again, just choose somewhere quiet, away from other people. As the social distancing gets more serious, I suggest your own back yard.
  • Keep in contact with your family and friends, use telephone, Face Time, social media, mail, email, or carrier pigeon.  Do whatever it takes to be socially close with your loved ones, while being physically distant from everyone.
  • Missing going to church?  The Uniting Church has a list of its congregations which are live streaming services.  If you're not UCA, your denomination may have something similar. Check their social media postings for information.
  • You can go to the zoo, with Mangolink Live Animal Cams and Videos, or Zoos Victoria.

Note: I will update this post from time to time, as I find or think of other things.