Showing posts with label business. Show all posts
Showing posts with label business. Show all posts

Saturday, 6 August 2022

My Dream

Image: Orange flowers.  Text: I have a dream that one day ... uh oh. Brain fog.You might have noticed I've added a "buy me a coffee" link on the right hand side of the blog. That's not to make you feel guilty if you read the blog all the time and don't have money to spare.  It's also not meant to be a limiter if you read this blog and would love to give me heaps of money you do have spare.  It's just another way to try to make a little bit out of the blog.

You see I have a dream.  It's not as grand or exciting as the dream of the person who first said that.  In fact it probably doesn't come close. But it's my dream and it's special to me.

My dream is that one day my writing will earn me enough money to be able to support myself, and not need a government pension.  Further, I dream of being able to help other people with lupus who are in need, and to help support lupus researchers.

I'm a long way from reaching my dream.  But I'm also only 50.  I've probably got a few years yet to get there (depending on what lupus has planned). Maybe one day I will feel that I'm doing something worthwhile to support myself and help others.

(I also dream that one day the baby fruit trees in the back yard will help feed my family and me.  So far, that's looking like a distant dream as well.)

Tuesday, 19 July 2022

The Business Directory

I've just been making some changes to the Business Directory.  It's now arranged in categories.

While I've been updating it, I also deleted the links that no longer work, or took me to shopfronts with no stock.

If I left your business out, please let me know when you're back in business, and I'll add you back in.

If you have a chronic illness and run a small or micro business on-line please contact me with the name of your business, your link, your name, your chronic condition and what your business does.  I'll add you to the directory for free.

Saturday, 9 July 2022

New Book Coming Soon

I've been busily working on my new book Patchwork.

The first proof copy is coming soon for me to do final edits on, and then it should start appearing in all the online bookshops soon.

It's a book of short stories and poetry, and I've had some fun compiling some things I'd already written and writing some completely new stories as well.

Given the difference in price between eBooks and print books, I've decided to add an extra story to the print version that's not in the electronic version.

The extra story's a humorous look at an aspect of life with lupus. I'm not telling you any more - you have to buy the book.

Keep an eye out for it, the cover design might change in the final version, but the name won't. The artwork will still feature the great quilt made by my friend Rhonnie. (It might just be placed differently to make the title easier to read.)

Sunday, 25 January 2022

Revisiting The Business Directory

My necklace and earrings made
by Annie at Bracelets Beads and Bling.
When did you last look at the  Lupus Business Directory?

It's worth checking it out when you're looking for unique handcrafted gifts, from jewelry to artworks, to scarves, to toys, and the range keeps increasing.

All of the businesses listed have one important thing in common: each is owned/run by someone with a chronic illness.

Aside from the obvious physical issues that come with having a chronic illness, we also face a serious financial issue - our capacity to earn a living is reduced along with our physical abilities, while the costs of medication and doctors increases our expenses.
My grand-daughter's "ugly
duckling" made by Anne
at Miniature Monkey Creations.

So when you buy from a business listed in the directory, you don't just get some amazing products you couldn't get anywhere else. You also get to help someone with a chronic illness to pay the bills, buy the pills,  have a just that little bit extra financial freedom.

Our little small and micro-businesses won't make any of us rich, but every time someone buys something we produce, it does make a difference.

So if you haven't looked at the directory for a while, why not take a look now? I'm sure you know someone having a birthday some time soon, who would just love something they can't find in the local shops.







Saturday, 31 August 2022

More from Aviva

Remember Aviva, the little lupie with big plans to provide something wonderful for other visually impaired children?

Her first "Mind Theatre" story, has been produced and is actually ready to be distributed.

Here's the latest in her story.


Happy 13th birthday Aviva.

Friday, 21 June 2022

Business Directory

Image: silky terrier. Text: Life can be ruff for people who have a chronic illness. Many people with chronic illnesses have small or micro businesses. If you buy from them, you help them out, and get a good product.
When was the last time you looked at the Lupus Business Directory?

It's a great place to go to if you're looking for gifts, or something a little out of the ordinary.

These small or micro businesses are run by people with chronic illnesses, so when you buy from them, as well as getting something unique, you help out someone who really needs it.

Sunday, 2 June 2022

Keeping Track

One of the big issues with lupus is trying to keep track of everything: symptoms, medications, doctor's appointments, etc.  It gets especially complicated when we're suffering the dreaded brain fog, and would be lucky to remember how to put our shoes on.

So here's two alternative tools you could try to help you manage the barrage of information you need to keep track of to manage your lupus:

Purple lupus awareness ribbon

 The Lupus App

You can find this on Android and iPhone.

It's developed by super-awesome rheumatologist Dr Shashank Akerkar.  (What makes him so super-awesome, you ask?  Unlike the rheumatologist who charges me $160 per visit, Dr Akerkar actually believes in giving patients information.  And he doesn't just give information to his own patients, but puts it out there on the internet for the rest of us as well - for free.)
Main menu of the Lupus App.

What you'll find on this app is:

  • General information about managing lupus.
  • A glossary of the terms your rheumatologist and other doctors are likely to use.
  • A place to track all your medications
  • A place to track all your doctors' appointments
  • A place to keep a summary of your medical history.
  • Useful links (including Arthritis Support Board - Dr Akerkar's own site.)
  • A place to note symptoms and health concerns to discuss with your rheumatologist.
  • An option to email your rheumatologist (if your rheumatologist is the kind that would accept patient emails.)

The "Doctor" page on the menu is about Dr Akerkar, and how to make appointments with him.  This bit I'm not likely to use, because he's in Mumbai, which is a fairly long way to travel from Brisbane for a rheumatology appointment. It does give the
Picture of Dr Akerkar
Dr Akerkar
option to contact Dr Akerkar on Facebook, Twitter or email, and I know a number of lupies from all around the world do contact him for information from time to time. (Let's not overwhelm him, though, he does have his own patients to take care of as well.)


Oh, did I mention you can get the app for free? That's another big plus.


Lupus Book

If you prefer to keep track of things on paper, the Lupus Book may be more your style.

I wrote this to track things for myself. The disadvantage with the book, as opposed to the app, is that it's bigger and bulkier and you need to remember to carry it.  The advantage is that you can tuck referral letters, prescription repeats, etc in between the pages, so everything stays together.

page has columns for drug/dosage/frequency and notes
Medication section of the book.
There are pages for medical history, contact details of doctors, next of kin.

There is plenty of space for tracking medication, so that as it changes, one line can be crossed out and a new one written in at the end.  It's not as neat as changing a line in an app, but you see what changes have happened over time.

The largest section of the book is for appointments.

Each appointment fits on a double page, allowing space for details of which doctor/therapist you are seeing, time and place, as well as things you need to do before the
Page includes details of appointments, things you need to do to prepare, new prescriptions needed, questions, changes in symptoms, etc.
Appointments page.
appointment, questions you have and things that have changed since your last appointment. It also has the all-important section for prescriptions you need.

The idea is to fill in things as the occur to you between appointments.  If you notice you're running low on repeats for a medication, write it in the book when you notice, so it's there when you go to your appointment.  If you notice a new symptom, write it in the book when it happens, so you don't forget to mention it next visit.

Because it's a book on paper, the publisher would have some problems with it being free, but I can tell you the cheapest place to get it.

You can buy direct from the publisher here: http://www.lulu.com/spotlight/IrisCarden. It costs $12.60 (Australian) plus postage.  Because Lulu is a print-on-demand publisher, they usually get the book printed for you in your own country to minimise postage costs and to save the environment the effort of shipping things huge distances.

Monday, 27 May 2022

Business of the Week: Levity Layne

This week's Lupus Business Directory Business of the Week is:






Levity Layne
Bamboo Fabric Breastfeeding Covers
Owner/Manager Kerri Bryson (Lupus)




Kerri explains the reason for making her breast feeding covers in this excerpt from her site.....
item
LEVITY LAYNE

HI TO ALL!

I have two fantastic sons and a wonderful husband. I’m a working mum and after breastfeeding both of my boys I found there were a few obstacles feeding in public. There were no covers around at the time I was breastfeeding my boys so I used baby blankets and throws to try to cover up while I was feeding as I was not confident to feed in public with no cover up. The frustrating thing was trying to keep the blanket over me so I wasn’t exposed but trying to pull my top down at the back to cover up. Then years later I was working in a baby store and listened to a lot of frustrated mums with the same problems as I had all those years before. So with a bit of thought I came up with my breastfeeding cover. I started selling at markets and had a great response. So with a little bit more thought and research I found that the best fabric for my covers was the Eco Friendly BAMBOO fabric. Now we have just launched our covers at the 2011 Perth-PBC Expo with a great response.

Thanks for you time.
Kind Regards
Kerri Bryson

Monday, 13 May 2022

Business of the Week - KenWeal

This week's Lupus Business Directory Business of the Week is:








KenWeal
Clothing designs by Kenneth Weal (Lupus)











Here are a couple of the products he has available:





Monday, 6 May 2022

Business of the Week: JuJuBeads

This week's Lupus Business Directory Business of the Week is:



JuJuBeads 
Beads by Judy Adolph (Lupus)




Here's a sample of what you'll find in Julie's store:


  • Black & White Crystal Ring, Size 7, REDUCED
    Black & White Crystal Ring, Size 7, REDUCED
    JuJuBeader
    $39.82 AUD
  • Turquoise Ankle Bracelet, Silver Peace Anklet, Peace Sign Charm
    Turquoise Ankle Bracelet, Silver Peace Anklet, Peace Sign Charm
    JuJuBeader
    $39.82 AUD
  • Bridal Pearl Earrings, Black Tie Jewelry, Garden Party
    Bridal Pearl Earrings, Black Tie Jewelry, Garden Party
    JuJuBeader


  • Purple Crystal Ring, Lupus Awareness Jewelry, SIZE 8, Amethyst, Lavender, Tanzanite, REDUCED
    Purple Crystal Ring, Lupus Awareness Jewelry, SIZE 8, Amethyst, Lavend...
    JuJuBeader
    $39.82 AUD
  • Silver Hammered Earrings, Teardrop Crystal Earrings, Sterling Silver Earrings
    Silver Hammered Earrings, Teardrop Crystal Earrings, Sterling Silver E...
    JuJuBeader
    $44.80 AUD
  • Turquoise Triple Strand Bracelet, Turquoise and Silver Bracelet, Triple-Strand Bracelet
    Turquoise Triple Strand Bracelet, Turquoise and Silver Bracelet, Tripl...
    JuJuBeader

Saturday, 27 April 2022

By The Book

Books I've written.
Available from Lulu, iBookstore and Amazon.
As regular readers know, I've written a book to help lupies manage our medications, medical appointments, etc.

I'm starting to think about writing another book related to lupus.  I have a few ideas.


  • Butterfly Kisses would be a fictional story, about a lupus patient's attempts at romance and to live life in general around lupus.
  • Fighting the Wolf would an actual look at my life and experiences, etc, pretty much based on this blog.
  • The Big, Bad, Wolf would be a fairy tale, but would have one chapter of fairy tale, followed by a chapter explaining how that relates to real life with lupus.
  • It's Lupus, What Now? Would be a factual, hopefully reassuring, book of information specifically for people newly-diagnosed. 
  • What I Wish You Knew would be for friends and family of people with lupus, telling them the things lupies wish they understood.
OK, there's some ideas. (Please, no-one else steal them.) 

What do you think I should write first?

This post written as part of Wego Health's Health Activist Writers' Month Challenge.

Thursday, 25 April 2022

If Only There Was A.....

After my post about abandoning the Health Activist Writers' Month Challenge, because I'd lost the topics, lovely Lorna from lifewithraisapain.com sent me a copy of them. So I guess I'm back in the game.

Lupus Book
One of the prompts I missed asks about what app, gadget or whatever you'd like someone to invent for your condition.

I actually faced this issue last year. I wanted some way to keep all my information about lupus in one place. Somewhere I could easily note questions for the next appointment with whichever doctor, could track what I had to do before the next appointment, etc.

Because I kind of grew up with the idea that if you see a need, you're elected, I did something about it.  I don't have the skills to make a phone app, so I wrote a book.

You can see the layout in my earlier post Lupus Book.

This first edition has sections for keeping a schedule of medications; emergency contact information; doctors' contact information; questions, changed symptoms, notes, etc for doctor's visits. Mine has post-it notes sticking out of it everywhere - one  post-it for each doctor, as I put a new appointment in the book, I move that doctor's post-it to that page where the next appointment is listed.

I've been looking at changes for the next edition to include a more detailed medication section (sufficient to allow someone else to do the pill sorting if need be) - which was suggested by a pharmacist. I'm also thinking of doing a shopping list section, for trips to the pharmacy.

It's a bit bulkier to carry around than a phone app, but I can paperclip referral letters, prescriptions, etc to the relevant pages (which I couldn't have done with a phone app.)

It works for me.  I haven't heard back from any of the people who have bought it, but would love to know if it works well for other people, and what they'd like to see different in the second edition.

If you think it might work for you, it's only available on the internet, and is cheapest directly from the publisher.  Find it at http://www.lulu.com/spotlight/IrisCarden.

This post written as part of Wego Health's Health Activist Writers' Month Challenge.

Monday, 22 April 2022

Business of the Week: JulieYarnDesigns

This weeks Lupus Business Directory Business of the Week is:




JulieYarnDesigns
Handcrafted scarves, etc by Julie (multiple autoimmune conditions)


Julie says:

I love to be outdoors, but when I'm stuck inside, a pair of needles and some yarn are the way to go. I'll knit on the train, in the car (when I'm not driving!), while reading a book, or while watching a movie. Friends tease me that I can't just sit and do nothing. What can I say? I love to keep my hands busy. (Taken from her site.)

Remember, when you buy products from businesses in the Lupus Business Directory, you are helping people with a chronic illness towards financial independence.

Monday, 8 April 2022

The Big, Bad Wolf

Teeshirt design available from
Iris' Shirt Shop
Today's Health Activist Writer's Month Challenge topic asks what animal would represent my condition.

This question's come up in the HAWMC or the National Health Blog Post Month once or twice before.  If you don't remember, check out these posts:


Nov 16, 2022
And regularly, far too regularly, we find that the wolf taken down another of our number. A post on social media, a conversation with another lupus patient, and we find out that the wolf has killed again.
Apr 23, 2022
Health Writer's Month: Facing the Wolf - Alone. Today's topic is: Health Activist Choice Day 2! Write about whatever you like. I'm having coffee tonight, with my ex-boyfriend. That's got me thinking, OK crying, about what I'm ...
Nov 24, 2022
But, we're also taught, through the adventures of Red Riding Hood, Peter and the Wolf, and the Three Little Pigs, that if you're smart, hardworking, have someone strong on your side, or just plain lucky, you can beat the wolf.
Apr 24, 2022
But we read our fairy tales, and we know the big, bad, wolf can be beaten, eventually. Sooner or later the woodsman with the axe will come and rescue us - of course the woodsman is wearing a white coat in a lab somewhere.

Apr 26, 2022
This goes back to the history of where lupus got its name - people thought one of the rashes often involved in lupus looked like a wolf bite. But it's also what lupus is like to live with. It's savage and painful. It totally bites.



The wolf also features on one of my favourite teeshirt designs at the Shirt Shop: the Lupus Bites design.

So, guess which animal I would use to represent lupus? Yep, the big, bad, wolf.  Not a normal, actual, wolf, but the big scary, nightmare, wolf from fairy tales, the one who eats grandmas, and hunts down children and little pigs who build insecure houses. 

Every now and then he seems to give up the hunt for a while, but then he comes back to try to huff and puff and blow my house down. The sound of his voice, and those huge sharp teeth, are very very frightening, but his bite is far worse than his bark.

This post written as part of Wego Health's Health Activist Writers' Month Challenge.


Business of the Week - My Stuff

I wasn't sure whether or not to do this, but finally decided to treat myself the same as everyone else, so this week's Lupus Business Directory Business of the Week, is my books and teeshirts.



Iris' Books
Books written by Iris Carden, who has lupus, and runs the Sometimes,  it is Lupus site.

Alternately, some of my books are also available from Amazon. (Including Kindle editions)







Iris' Shirt Shop
Sells printed T-shirts, Mugs, etc.
(Lupus themed and general)
Original designs, by Iris Carden,, who has lupus, and runs the Sometimes, It Is Lupus site.





OK, I realise that's two businesses, but you don't need my stuff featured two weeks in a row. 

Remember, whenever you buy anything from any business listed in the Lupus Business Directory, you are helping someone with a chronic illness to have the dignity of earning some of their own income. (For those of us who've had to stop our regular jobs, that is something very precious.)

If you have any chronic illness, and have a business you'd like listed in the directory, please email me the details.


Friday, 5 April 2022

If I Had Endless Resources....

lupus.cheezburger.com
If I had unlimited resources, time, energy, money.....

Well, clearly, if I had unlimited energy, I wouldn't have lupus, and maybe I wouldn't be aware enough of the problems for this to matter to me, but anyway, here's what I like to think I'd do with unlimited resources....

With unlimited resources, there are a couple of things I could do to help fellow lupies.

The first would be to fund the research that will hopefully, one day, give us a cure. That's what we need more than anything.

Next, well, you see the Lupus Business Directory? Well, that wouldn't be just one page on a blog the way it is now.  It would be huge.  It would be advertised everywhere. Lots of lupies lose our income or a large percentage of it when we're sick. I started the directory to help the people who have small (or micro) businesses. A lot of the time, what we sell is something we produced as therapy for our health conditions (not just lupus, but any chronic illnesses are represented in the directory). I write and do artwork, so that's what I have for sale (books and teeshirts).  Other people make jewellery or sew or knit.  Helping promote these businesses helps promote financial independence for people with chronic illnesses.

Another thing I'd love to do, if I had unlimited resources, is to set up a scheme for extra support for lupus patients - to provide money for things like house cleaners, transport to medical appointments, child care during flares, etc. It's the kind of thing people with lupus (and many other chronic illness) really need, but which health insurance and centrelink benefits, etc just don't help with.

Thinking about it, help with affordable, suitable, housing would also be a brilliant idea. (Just knowing what a blessing it is that I finally am living somewhere that is both affordable and suitable.)

But I don't have unlimited resources.  And I don't think Clive Palmer or Gina Reinhardt or any other multi-millionaires would be interested in these ideas because they don't really make money. They would, however, cost rather a lot.

Lupies, it's down to us to help ourselves and each other.  If you have lupus (or another chronic illness) and own/run a business, email me the details for the Lupus Business Directory, that way you can be listed in the directory that we do have.  (That's how you help yourself.)  To help each other, everyone share the link to the directory on social media, Facebook, Google+, Twitter, Pinterest, everything (even email it to friends.)  If there's no budget for advertising, there's still word-of-mouth.

This post written as part of Wego Health's Health Activist Writers Month Challenge.

(Any other lupus bloggers out there doing the HAWMC?  Please add the links to your post on this topic in the Comments. I'd love to read what everyone else dreams of doing.)

Monday, 1 April 2022

Business of the Week - Hope in Bracelets

This week's Lupus Business Directory Business of the Week is






Hope in Bracelets
Bracelets designed by Michelle Marie Eberwein
(multiple chronic conditions.)









Michelle talks about her work (copied from her site):

Hope in Bracelets is my way of  bringing awareness to the diseases and medical conditions that have no cure.

I suffer from Rheumatoid Arthritis, Fibromyalgia and Degenerative Disc Disease of the spine. Finding a cure is important to me. By wearing a Hope in Bracelets bracelet, you or a loved one can show your support. Together we can all hope for a cure! 


For every bracelet sold I donate 20% of the proceeds to the charity in which it represents.
  All bracelets are handmade by myself, are 7.5 inches and made with a stretchable material for comfort.  I can customize any bracelet with any color, size or words.

Monday, 25 March 2022

Business of the Week: Ginger Made That

This week's Lupus Business Directory Business of the week is Ginger Made That.



Ginger Made That
Ginger Lee (Lupus) has handmade crafts, painting and vintage items.
See also Ginger Made That on Facebook.


Here's some of the amazing things from Ginger's online store:










  • 1970's vintage amber Indiana Glass Company pattern Ing7 pressed 2 piece glass fairy lamp candle holder
    1970's vintage amber Indiana Glass Company pattern Ing7 pressed 2 ...
    missgingerlee
    $9.84 AUD
  • Vintage 1936 Edwin Knowles China large oval Fashion Pattern embossed serving platter with scalloped edges made in USA
    Vintage 1936 Edwin Knowles China large oval Fashion Pattern embossed s...
    missgingerlee
    $12.79 AUD
  • Large 1970s vintage round clear glass serving popcorn snack party bowl...
    missgingerlee














If you have a chronic illness, and have a business you'd like listed in the Directory, please email me the details.


Friday, 22 March 2022

Aviva

Lupus is a horrible disease that does horrible things to people.  I am constantly amazed by the things some lupies have been able to achieve when they could have been forgiven for just giving up.

I want you to meet an amazing little girl named Aviva.  She's 12, and been battling severe lupus half her life.  Lupus medication has taken the majority of her sight.

Instead of feeling sorry for herself, she's looking for ways to help other kids with vision impairment.

From there, I think I'll let her tell you her own story, and about her project, the Theatre of the Mind.



If you want to know more, you can find it the Aviva Productions page http://www.themercava.com/projects/mindtheater .

Monday, 18 March 2022

Business of the Week - Gemalytics

This week's Lupus Business Directory Business of the Week is Gemalytics.




Gemalytics LLC
Barbara Wheat (Lupus) provides PR and communications for the gem and jewellery industry.

Here's the description of Gemalytics does, taken from the company's website:


Our Services

Gemalytics LLC is dedicated to offering consulting services to a variety of industries on brand building, communications, green products, events, marketing, promotions, public relations, sustainability management, trade shows, and more.