- Having to do something important, that involves speaking, when you have a massive ulcer on the tip of your tongue.
- Going on a short trip, and having to take an extra bag for your medication.
- When you have a choice between going out and having fun, and having a nap, choosing the nap.
- Writing absolutely everything down, because otherwise you will forget 90% of it.
- Checking your pill case five times in an hour because you keep forgetting if you took your pills.
- Drinking coffee by the litre because otherwise you'll fall asleep, then not being able to sleep when you need to.
- Postponing dealing with a crisis because you have a doctor's appointment.
- Getting exhausted doing nothing
- Not knowing if something new is a symptom or a side-effect.
- Doing things you know you shouldn't because you're just so sick and tired of being sick and tired.
Showing posts with label lupus awareness. Show all posts
Showing posts with label lupus awareness. Show all posts
Sunday, 18 February 2022
Lupies Will Understand
I'm sure lupies will understand these things, healthy people might not.
Friday, 1 December 2022
Lupus is Sexy Too
This email I received was just so awesome in so many ways, I'm just going to give reprint the whole thing:
Hello!
My name is Genevieve Flati and I am the creator/director of a show called "(Wo)men Rule Broadway." The show is a musical theater review where women perform roles that were originally written for men. But, we perform them as women.The show went up last year, and we were super successful. We sold out every show, with a high demand for more. We had Tara Strong and Eg Daily as our featured celebrity guest performers. (Powerpuff girls, Rugrats, Harley Quinn, etc.)
The concept came from a lifetime of being in entertainment, and seeing that most of the "good" roles went to men, while the women were stuck with the boring songs, side romantic plots, and overall uselessness (except to be objectified and overly sexualized). There ARE amazing roles that express all parts of human nature (Alexander Hamilton, The Phantom, Elder Price, etc), and even though I am a wooooommmaaannnn, I am still a fully complex human with more to me than "O look at that man! I hope he notices me and rescues me from my predicament!"
I wanted to give opportunities to women that have been previously denied because of their gender and/or race. I was tired of waiting around, hoping that someone in a position of power would recognize all of this untapped talent in these women and POC. Eventually, I realized that I was someone, and decided to put myself in a position of power, so I could do just that for the women around me.
In April of 2017 I had a huge medical attack and was diagnosed with lupus. It's an autoimmune disease where your immune system is overactive and attacks your organs. Essentially, your body is trying to kill itself.
As there is no cure, they battle it by putting you on chemo. I have been on weekly chemo treatments every Friday since April, and still have a ways to go. (CHEMO FRIDAYS ARE EVERYBODY'S FAVORITE DAY, YO.)
I was unsure of what I wanted to do about this for a long time. I only told a few friends and family. But, as I am a sociopath, I was like.... "Ok, so what am I gonna do with this?" The answer, of course is... A FREAKING SHOW! YAS KWEEEEN!
So, my Co-Creator and I discussed it for a while, and I said that I wanted to do another Women Rule Broadway and we will donate a portion of our proceeds to a lupus research foundation. (Last year we donated to The Downtown Women's Center)
SO THIS YEAR WE ARE DOING...
(Wo)men Rule Broadway Presents: Lupus is Sexy Too!
https://www.youtube.com/watch?
Only this time, WE ARE ADDING MEN INTO THE CAST because feminism is about equality for everybody, and men have their own stereotypes/societal pressures to deal with as well.
Please please please help us spread the word about our Kickstarter and our show. We want to fight racial and gender stereotypes in Hollywood, society, and the media. We want to raise money for a disease that many people (including Selena Gomez, Nick Cannon, Michael Jackson, Lady Gaga, and more!)
So we are doing: (Wo)men Rule Broadway Presents: Lupus is Sexy Too!
The name comes from the fact that when you tell people that you are on chemo, they usually get all hot and bothered and say:
Them: "Oh my god, you are so brave and wonderful for being on chemotherapy..."
*heavy breathing*
"If you don't mind..."
*they stroke your hair, all turned on by your tragedy*
"what kind of cancer do you have?"
Me: "O, I don't have cancer, I have lupus, but I'm still on chemo-"
Them: *OUTRAGED* "YOu DoOnt have CANCER?!?! Who cares about your NONCanCER disease!?!?! GET OUT OF HERE YOU HOBO!"
SOOOOOOO....
I want people to know that LUPUS IS SEXY TOO. We want your pitty sex too. Give it to us.
OH, and, I want to help make the world a better, less racist, less sexist place for everybody. That would be great too.
I hope you can help me get the word out about our show!
Thank you for your time!
Genevieve Flati
What can I add to all of that except - is there some wealthy person out there who would sponsor my trip to America to review this? No? Never mind. I'll just be happy knowing this is going on...
Tuesday, 9 May 2022
Best Lupus Blogs of 2017
Sometimes, it is Lupus has made it to Healthline's list of the Best Lupus Blogs of the Year.
You've already found this blog, want to see what else is on on the list? Here's the link: http://www.healthline.com/health/lupus/best-blogs-of-the-year#2
Healthline
Tomorrow is World Lupus Day, so this is your last chance to be part of the Sometimes, it is Lupus World Lupus Day event. Email iris@sometimesitislupus.com with you first name, country, and what you would say to someone newly diagnosed with lupus. Tomorrow, I will be publishing a new resource for people newly diagnosed.
Want to support this blog? You can become a patron for $1 a month. (Patrons receive a free electronic copy of each new book I produce.) Become a patron here: https://www.patreon.com/IrisCarden.
You've already found this blog, want to see what else is on on the list? Here's the link: http://www.healthline.com/health/lupus/best-blogs-of-the-year#2
Healthline
Wednesday, 26 April 2022
Flu Season's Coming
Yesterday was ANZAC Day, which means a few things. (No, I'm not talking about the ANZACs or the families who would have preferred their sons and husbands to be coming home, rather than becoming legends.)
It means we're about midway through autumn, so the weather is about to get colder.
It also means it's time to get a flu shot.
The flu shot won't give you protection against every sniff and sniffle going around, but it will give you some resistance to the most kill-ey versions of the flu that are expected to come around this flu season.
For lupus patients (and patients with other immune-compromising diseases) can go to our doctors to get the flu vaccine for free, under the National Immunisation Program.
It's worth asking family to consider getting a flu shot as well. Them being protected also helps us to be protected. For family members who aren't covered by the Program, it's possible to get a flu shot fairly inexpensively from a pharmacy or a doctor's surgery.
Want to be part of the World Lupus Day activity on Sometimes, it is Lupus? Email iris@sometimesitislupus.com your first name, your country and the advice you would give someone newly diagnosed with lupus.
I'll put all of the advice together in a resource to be published on this blog on World Lupus Day, 10 May 2017.
It means we're about midway through autumn, so the weather is about to get colder.
It also means it's time to get a flu shot.
The flu shot won't give you protection against every sniff and sniffle going around, but it will give you some resistance to the most kill-ey versions of the flu that are expected to come around this flu season.
For lupus patients (and patients with other immune-compromising diseases) can go to our doctors to get the flu vaccine for free, under the National Immunisation Program.
It's worth asking family to consider getting a flu shot as well. Them being protected also helps us to be protected. For family members who aren't covered by the Program, it's possible to get a flu shot fairly inexpensively from a pharmacy or a doctor's surgery.
Want to be part of the World Lupus Day activity on Sometimes, it is Lupus? Email iris@sometimesitislupus.com your first name, your country and the advice you would give someone newly diagnosed with lupus.
I'll put all of the advice together in a resource to be published on this blog on World Lupus Day, 10 May 2017.
Would you
give $1 a month to support this blog?
You can become a patron for as little as $1 a month (up to any amount
you choose.) As a thank-you gift, I'll
send you a free electronic copy of each new book I release.
www.patreon.com/IrisCarden
Saturday, 22 April 2022
When Lupus is Unbearable
Trigger warning: discussion of suicide.
Lupus is a horrible disease, which makes life thoroughly miserable at times.
So when I found out that a lovely lupie I've had a fair bit of online contact with chose to end her life recently, I fully understood that choice. Lupus caused her death, even though that's not what will be listed on the death certificate.
There have been times I have considered a half-formed plan in case lupus became unbearable. I've talked to other people with chronic illnesses who have had similar ideas. Strangely, having the reassurance that there's a way to stop things being unbearable, makes things easier to bear.
Lupus takes so much away from us: health, the ability to work, the ability to rely on our own bodies and minds, and replaces those things with fatigue, physical pain, and a sense of guilt about all the things we can't do. That's aside from the risk of organ failure, the constant blood tests, visits to multiple types of doctor, a whole life that at times seems to be built around a disease.
When lupus is really bad, and organs do fail, and pain is worse than usual, just opting out of everything can seem to be a solution.
The discussion of voluntary euthanasia has been going on in Australia for years. Years ago, I was totally against it. Now, after a few years of living with lupus, I get it. Now, I think with some proper safeguards, it could be a good option. There would need to be a way to ensure that people weren't pressured by others into making the choice, and to ensure that it wasn't a result of depression. (Depression is bad, I know from experience, and when you're at the bottom of the pit, it can seem like the pit is all that there is; but with support, medication, counselling and plain old determination, people can and do climb out of the pit and back into the light.)
What keeps us from all taking the option of ending our lupus and everything else? There's a few things:
Lupus is a horrible disease, which makes life thoroughly miserable at times.
So when I found out that a lovely lupie I've had a fair bit of online contact with chose to end her life recently, I fully understood that choice. Lupus caused her death, even though that's not what will be listed on the death certificate.
There have been times I have considered a half-formed plan in case lupus became unbearable. I've talked to other people with chronic illnesses who have had similar ideas. Strangely, having the reassurance that there's a way to stop things being unbearable, makes things easier to bear.
Lupus takes so much away from us: health, the ability to work, the ability to rely on our own bodies and minds, and replaces those things with fatigue, physical pain, and a sense of guilt about all the things we can't do. That's aside from the risk of organ failure, the constant blood tests, visits to multiple types of doctor, a whole life that at times seems to be built around a disease.
When lupus is really bad, and organs do fail, and pain is worse than usual, just opting out of everything can seem to be a solution.
The discussion of voluntary euthanasia has been going on in Australia for years. Years ago, I was totally against it. Now, after a few years of living with lupus, I get it. Now, I think with some proper safeguards, it could be a good option. There would need to be a way to ensure that people weren't pressured by others into making the choice, and to ensure that it wasn't a result of depression. (Depression is bad, I know from experience, and when you're at the bottom of the pit, it can seem like the pit is all that there is; but with support, medication, counselling and plain old determination, people can and do climb out of the pit and back into the light.)
What keeps us from all taking the option of ending our lupus and everything else? There's a few things:
- Hope. One day some scientist is going to work out that this tiny change to that tiny gene or whatever is the solution. Lupus is going to be cured and we're all going to go back to normal lives. We want to be around to see that happen.
- Love. Each of us, no matter what lupus has done to us, have people we love and who love us. Those people would be devastated if we died. When we have a choice, we live for them.
- Faith. Viktor Frankl observed as an inmate of Auschwitz, that those who found meaning despite their suffering coped far better than those who did not find meaning. Whatever or whoever we have faith in, wherever we find our meaning, helps us get through things that would otherwise be unbearable.
- Future. Sure, things could get worse. But they could also get better. I can hold out a bit longer and find out which.
- Present. Is this a "right now" thing, that will improve tomorrow or next week?
- Past. I've been through bad things before. If I could get through those, I can get through this bad thing that's happening now.
- Community. None of us is alone in this. We belong to a community of people with lupus. Whatever we are going through, there's someone else who has been there and done that.
- Stubbornness. The simple determination to not let this dumb disease win.
- Support. Sometimes talking things out with someone, or having a friend or family member come in and catch up the washing we've been too sick to do, is all it takes to make the situation bearable after all.
Suicide is an understandable, and even in some cases reasonable, response to an incurable illness, but if you're considering it, I'd ask you not to take the decision lightly. First step back, and look at the whole picture of your life and the network of the people your life impacts on. Talk about it, with fellow lupies, with your doctor, with your family, with a counsellor. Don't make this decision hastily, or alone, or in the pit of depression.
If this post has raised issues for you, and you need to talk about it, you can call Lifeline on 131114 from anywhere in Australia.
Would you
give $1 a month to support this blog?
You can become a patron for as little as $1 a month (up to any amount
you choose.) As a thank-you gift, I'll
send you a free electronic copy of each new book I release.
www.patreon.com/IrisCarden
Tuesday, 4 April 2022
Want to be paid for talking about your experience of lupus?
Hey lovely lupies,
Would you like to make some money for talking about lupus?
I've just received the following email from Bright Bod:
Hello,
We at BrightBod.com are building our Patient Question and Answer Library. We have already interviewed a number of people with Fibromyalgia and many forms of Cancer and are now trying to build our Lupus community.
If you have Lupus (or a form of Cancer) and would like to earn $60 by participating in a Question and Answer session (without leaving your home, which can be conducted on computer or smart phone), please reply. The Q & A session should be about 15 to 20 minutes. We pay with PayPal, Venmo or check; the method of payment is up to you.
If you know someone who might be interested, please forward this email to them. Thank you.
Kind regards,
Joe
If you are interested in taking part, you can email Joe at Bright Bod on: brightbod1@gmail.com.
Would you
give $1 a month to support this blog?
You can become a patron for as little as $1 a month (up to any amount
you choose.) As a thank-you gift, I'll
send you a free electronic copy of each new book I release.
www.patreon.com/IrisCarden
Saturday, 1 April 2022
Lupus Care Packs
| Corry Ang (right) and Iris Carden,. |
Corry Ang who arrived with gifts for everyone.
Corry has put together Lupus Care Packs, which contain some of the things she has found most useful.
They include a heat pack, peppermint tea, epsom salts for soaking sore joints, and a stimulating shower gel.
She's been organised, raised funds and negotiated discounted prices on the products, to be able to give them away.
If you want to know more, check out her website Lupus Care Community.
Lupus affects us all differently, but we're all in it together. It's wonderful that there are so many people like Corry who are inspired to reach out and care for others who are finding our own ways to live with the wolf.
Thursday, 16 March 2022
A Busy Couple of Weeks
I just looked over my schedule for the next two weeks:
Tonight - I'm helping out my Toastmasters' club at the Mayor's speech contest. It's a public speaking contest for kids in grade 11.
Sunday - I'm preaching at church.
Monday - Toastmasters' Club meeting - I'm giving a speech on the Anthropocene.
Thursday - Mayor's speech contest.
Saturday - Toastmasters convention in Toowoomba - I'm in the humorous speech contest, with a description of life in an English village, based on what I've learned from watching Midsomer Murders.
Tuesday I fly to Melbourne. After checking into the hotel, I'll rush to represent Lupus Association Queensland, at a meeting of leaders of lupus groups. I'll be late, because I didn't know about the meeting when I booked the flights.
Wednesday all day is the Lupus 2017 Patient Education Conference. If you're there say "hello", I like to meet my readers. If you can't be there, I'll write about it over the next few weeks.
Thursday, fly back home.
Friday, I start writing stories from my Melbourne adventure. There should be lots of interesting and hopefully useful information for all of you lovely lupies out there. I hope what I write will make sense, because I'm going to be one sore, exhausted, and probably brain-fogged, lupie.
How did I manage to organise all of these things in such a short space of time? Did I forget that I need to take things slowly and not over-do anything? I think the answer is that I haven't been organising anything. I haven't been thinking well enough to be organised. Stuff just happens to me lately.
So, if you don't hear from me much until I get back from Melbourne, you'll know why.
Note registrations for Lupus 2017 Patient Education Conference are closing soon. If you're planning to go, it's time to book yourself in.
Tonight - I'm helping out my Toastmasters' club at the Mayor's speech contest. It's a public speaking contest for kids in grade 11.
Sunday - I'm preaching at church.
Monday - Toastmasters' Club meeting - I'm giving a speech on the Anthropocene.
Thursday - Mayor's speech contest.
Saturday - Toastmasters convention in Toowoomba - I'm in the humorous speech contest, with a description of life in an English village, based on what I've learned from watching Midsomer Murders.
Tuesday I fly to Melbourne. After checking into the hotel, I'll rush to represent Lupus Association Queensland, at a meeting of leaders of lupus groups. I'll be late, because I didn't know about the meeting when I booked the flights.
Wednesday all day is the Lupus 2017 Patient Education Conference. If you're there say "hello", I like to meet my readers. If you can't be there, I'll write about it over the next few weeks.
Thursday, fly back home.
Friday, I start writing stories from my Melbourne adventure. There should be lots of interesting and hopefully useful information for all of you lovely lupies out there. I hope what I write will make sense, because I'm going to be one sore, exhausted, and probably brain-fogged, lupie.
How did I manage to organise all of these things in such a short space of time? Did I forget that I need to take things slowly and not over-do anything? I think the answer is that I haven't been organising anything. I haven't been thinking well enough to be organised. Stuff just happens to me lately.
So, if you don't hear from me much until I get back from Melbourne, you'll know why.
Note registrations for Lupus 2017 Patient Education Conference are closing soon. If you're planning to go, it's time to book yourself in.
Tuesday, 7 March 2022
Yet Another "Cure"
Nothing, not pain, not fatigue, not anything lupus can throw at me, will ruin an otherwise good day for me faster than someone (not one of my doctors) offering me yet another "cure" for lupus.As if I hadn't already been offered a hundred thousand other (insert your favourite expletive here) "cures" already! Lupus has got to be one of the world's most "cured" incurable diseases!
I've heard them all; from the person who cured lupus by giving up coffee; to marijuana cures lupus and absolutely everything else; to lupus is my own fault and I either need to pray harder or have a better mental attitude; to any number of supplements that contain ingredients which are actually toxic in combination with lupus drugs; to all kinds of new age crystals and chants and tapping and touching; to lupus and other autoimmune diseases don't really exist; to eating special diets. You name it, I've heard it. If you have lupus, I'd be willing to bet you've heard more than your fair share of them, too. You might even have tried some of them (hopefully not any of the actually dangerous ones.)
I was offered another cure today, and almost hit someone I quite like. I know this person was only trying to be helpful, but I just can't cope with this same (again, insert favourite expletive here) all over again.
So why do people do this?
Well, there are lots of reasons.
The first reason is just plain evil. It's to exploit us. There are people who look around, see a group of people fighting for our lives and see a great way to make money. These are the people (often massive multinational companies, but also small solo operators) who sell things that you'll find listed, but not registered with the Therapeutic Goods Administration - or the equivalent in your country.
Things that are listed don't have to be proven to do anything, they just have to be proven to be basically harmless. (But that doesn't take into account whether they are harmless in conjunction with whatever actual medication you are taking.) Things registered with the TGA are the ones that have to have scientific evidence that the good they will do outweighs the potential harm of side effects. (See the related post listed below.)
The others are at least well-meaning.
There are the people who misunderstand science. Some people see early results of research, and think that's the whole story. Research has begun on X-Y-Z and early results are positive. People read this and think that's the solution, they have to tell everyone to do that and everything will be OK. But one early study is not the whole of the story. Science is done with trials and tests and experiments being repeated over and over again. One study doesn't tell you whether the results will be consistent over time, or what problems might arise with further studies. An experiment with rats might eventually lead to trials on humans - but an experiment just on rats doesn't guarantee exactly the same results in humans. Science takes time to test and retest, to be sure to get things right. Jumping the gun and acting as if early indicators are the final result can lead to disaster. Oh, and when the early tests are on a component of (something easily accessible), that doesn't mean that that easily accessible thing can cure it. There's a matter of dosage, and of whether that component works when it's in combination with all the other components of the same thing.
There are the people who want to believe every problem has a solution. Human beings have trouble with the idea that some problems don't have easy solutions, or don't have solutions at all. Some people will have such a great problem with it they will endeavour to come up with a very simple solution and then put their faith in it. (It's not just with chronic illness - look at the over-simplified political solutions people try to come up with for extremely complex social and political problems.)
There are the people who "got better". Some people who have lupus, or appear to have lupus get better. They assume that whatever they were doing when they got better has cured their lupus, and they are excited and want everyone else to get better too, and so try to encourage everyone to do the same thing. Sometimes those people were misdiagnosed and didn't have lupus at all. Sometimes they went into remission. Lupus flares and goes into remission at random times, for unknown reasons. Remission isn't a cure, it just means lupus is not active for now, and if we're lucky for a long time. (Some really lucky people have had lupus go into remission for 20 or more years.) Many of us work out over time some of the things we do that are guaranteed to cause a flare, but those are not the same for all of us. It stands to reason, then, that even if someone did find a way to force their lupus into remission, it wouldn't work for everyone.
So what do we do when we're told about a "cure"? Today, I lost my temper. I couldn't cope with this all over again. I've heard too many "cures" and been worn down too much by the snake oil merchants and well-meaning people who didn't even actually know what lupus was.
But you might be more patient when someone tells you about the cure they heard about or that worked for them. You might even be interested in trying it. I'd recommend discussing it with your doctor first, to check that whatever this is won't actually be dangerous. If you really want to try it, and your doctor can assure you it won't make your lupus worse, or do some other terrible thing to you, go with it and good luck to you.
If you do try some "cure" and it doesn't work for you, don't blame yourself or think you did something wrong. Lupus is an incredibly complex disease, which affects people differently. In life, very complex problems very rarely have simple solutions.
Related Post: What AUST R and AUST L on your medications mean.
Related Post: I'm not going back
Sunday, 19 February 2022
I'll Be There. Will You?
Well, I've sorted out how I get to the Lupus 2017 Patient Education Conference, which is being run in conjunction with the World Lupus Federation's International Conference on SLE.
It's happening in Melbourne on the 29th of March, this year.
I squeezed my financial budget to its last breath and managed to book flights and accommodation. Next, I have to watch the other budget - the energy budget, to make sure I can handle the flights to Melbourne and back. I've got another conference (not lupus-related) a couple of days earlier, so I am going to have to be very careful to not overdo things.
If you're wondering why I'm excited to go to this event, here is a copy of the agenda:
Preliminary Agenda
08:30-10:30 - Outcome measures and treatment targets in SLE
(in Hall Melbourne 1)
(This session is part of the International Congress on SLE & Asian Congress on Autoimmunity. Individuals registered for the Lupus Patient Conference may attend this session, if desired.)
1. Dafna Gladman - Measuring disease activity and damage in SLE
2. Andrea Doria - Remission as a treatment target in SLE
3. Mandana Nikpour - Low disease activity as a treatment target in SLE
10:30 - 11:00 - Coffee Break
11:00-12:30 - Patient Program Module 1: What we have learned about the lupus?
Chair: Barbara Ward
1. Eric Morand - Causes, Pathways and Progression of Lupus
2. Brad Rovin - Challenge and triumph of kidney disease in SLE
3. Ian Bruce - Cardiovascular risk in SLE
4. Susan Walker - Pregnancy journey
12:30 - 13:30 Patient Program Module 2: The changing outlook for treatment of lupus
Chair: Sandra Navarra
(A light boxed lunch will be provided to all registered participants.)
1. Joan Merrill - Current therapies and changing perspective on managing lupus
2. Richard Furie - Overview of new therapies in development for lupus
13:30-15:00 Patient Program Module 3: Living and coping with lupus
Chair: Michelle Leech
This session features a discussion forum among a panel of lupus medical experts and people living with lupus. The panel members will share stories and successful strategies for living and coping with lupus. Bring your questions, and let our experts help you answer them.
A/Prof Davinder Singh-Grewal - Pediatric rheumatologist, Westmead Children's Hospital
Dr. Peter Gowdie - Pediatric rheumatologist and general pediatrician, Monash Children's Hospital
Dr. Kathy Nicholls - Nephrologist, Royal Melbourne Hospital
15:00-15:30 - Break
15:30 - 17:00 - Patient Program Module 4: Resources for patients with lupus and their families
Co-Chairs: Barbara Ward and Duane Peters
1. Local resources for people with lupus featuring representatives of Australian groups
2. Self-help resources - Dian Syarief, Syamsi Dhuha Foundation presenting on Exercise DVD and App
3. Australian Lupus Group Collaboration - Discussion among representatives of Australian lupus about collaborative efforts to raise awareness of lupus and provide support services and advocacy to help individuals and families affected by lupus.
4. World Lupus Federation - Information about global efforts to address lupus around the world.
5. Closing remarks - Duane Peters & Barbara Ward
It looks interesting, doesn't it? I think it's going to be really informative. And it's going to be an adventure, because I'm going on an interstate trip totally unsupervised. There will be no-one making sure I take my pills, or checking that what I'm saying and doing makes sense.
So after the conference, I should have some great stories to tell you on this blog: either something really informative that I've learned at the conference, or some great adventure that brain fog has lead me on when no-one was checking up on me...
Unless I get lost in an airport or something, I will definitely be there. Will you?
Conference details and registration: http://www.lupus2017.org/registration-accommodation/register-here#.WKkWIxJ95-U
Friday, 17 February 2022
Patient Education Conference - Melbourne
The World Lupus Federation is having it's 2017 conference here in Australia, and it includes a Patient Education Conference, which looks really good.
When I say "here" it's in Melbourne, I'm in Ipswich (just near Brisbane). So that means flights and accommodation, and I am going to have to look hard to find the funds for those. Right now, I'm looking at bank accounts, under the mattress, etc, because this looks like a great opportunity, if I can get there.
On the other hand, registration for patients is only $50, (oops, looked again, that's US dollars, so a bit more than $50) and once registered, patients are allowed to attend all of the scientific conference as well.
If you happen to be closer to Melbourne than me, or have the funds available to get there, here is the link for more information: http://www.lupus2017.org/program-information/lupus-2017-patient-education-conference#.WKa0eRJ95-U
When I say "here" it's in Melbourne, I'm in Ipswich (just near Brisbane). So that means flights and accommodation, and I am going to have to look hard to find the funds for those. Right now, I'm looking at bank accounts, under the mattress, etc, because this looks like a great opportunity, if I can get there.
On the other hand, registration for patients is only $50, (oops, looked again, that's US dollars, so a bit more than $50) and once registered, patients are allowed to attend all of the scientific conference as well.
If you happen to be closer to Melbourne than me, or have the funds available to get there, here is the link for more information: http://www.lupus2017.org/program-information/lupus-2017-patient-education-conference#.WKa0eRJ95-U
Friday, 19 August 2022
Participation Award
Have you ever heard people complain about little kids getting "participation awards" when they don't win competitions?They'll say things like: "I never got an award for just turning up."
Well, I never got an award for just turning up either, and I really think some days I deserve one!
I think all lupies have those days, when just getting out of bed is an award-winning performance.
We all have times when if we manage to smile and say, "I'm fine," through all the physical pain we're in, we should get a Logie.
Some days, we deserve Olympic Gold, for walking down our own hallway.
Some days, we should get an ARIA award for opening our mouths and not screaming in pain.
Some days, the artwork involved in make-up to change a rash-covered death-mask into a "normal" face is deserving of an Archibald.
If you coaxed a sore, tired, complaining body out of bed this morning, you deserve an award.
If you took part in today in any way despite pain, fatigue, brain fog, depression and rashes, you should get a round of applause.
If you did something to care for someone else today, despite being barely able to care for yourself, you should be Australian of the Year.
Pat yourself on the back (or get someone else to do it - arthritic shoulders don't like to reach like that.) You deserve all the awards.
Hip! Hip! (The good hip, not the bad one.) Hooray for you!
You are amazing. Don't ever forget it.
(Note: for overseas readers - a Logie is an acting award, an ARIA award is a music award, and the Archibald is a portrait-painting prize.)
Friday, 12 August 2022
Wego Health Activist Awards
 |
| lupus.cheezburger.com |
Time to nominate your favourite on-line health activists for the Wego Health Activist Awards.
Now's the chance lovely lupies: let's try to get recognition for all the amazing lupus advocates out there. Think of people who have Facebook pages, blogs, Pinterest pages, etc. Everyone who tries to get information and understanding about our condition out there.
Please nominate now, all your favourite lupus advocates. And please let me know who you nominated - there might be some great resources out there I haven't caught up with yet.
Nominations are here: https://awards.wegohealth.com/
Saturday, 16 July 2022
Please Write to your Local MP
Take a deep breath. The election's over. Now I want to start a letter-writing campaign, to try to make the government aware of issues that affect those of us with lupus and other chronic illnesses. Let's do this with actual posted letters on paper, because they're a bit harder to ignore than emails and internet surveys.
Find your electorate in this list: http://www.aph.gov.au/Senators_and_Members/Members. Click on your electorate to find your local member. Then click on your local member to find their address.
What are you writing in your letter? Well feel free to put it in your own words, and add in any more information you feel is relevant, but this is a basic draft:
Dear .......,
Congratulations on your election (or re-election) to the seat of .......
As a member of the Australian Parliament, you may want to know about issues faced by Australians with serious chronic illnesses, such as lupus, fibromyalgia, and related conditions.
You may be aware that women are the fastest growing group of people becoming homeless, and one of the factors leading to homelessness in women is frequently chronic illness.
Lupus causes pain, fatigue, cognitive dysfunction, arthritis, and organ failure. It does not discriminate about which organs to attack. It is incurable, and eighty percent of the people who have it are women.
Many people who have lupus struggle on for years, trying to live a "normal" life, working full-time, providing for their families. There comes a time for many of us however, when that is no longer possible.
Chronic illness can place an inordinate pressure on relationships, and some marriages break up, leaving the patients being the only one supporting themselves, and sometimes children as well.
So what happens when the doctor says it's time to stop work? We apply for the Disability Support Pension. Very few people with lupus actually get it. Many keep working full time and end up with organs failing, multiple hospitalisations, etc.
In the lead up to the election, disabled pensioners were demonised as a "burden on the economy", and the pension was tightened up so that about eighty-five percent of applicants for the DSP were refused. That clearly means that even fewer people with serious chronic illnesses are being accepted.
What do you suppose happens to the lupus patients who are denied the DSP? Some struggle to continue to work full time - at great cost to their health. Some drop to part-time work and struggle to survive on insufficient income. Some will end up on Newstart Allowance, and will have to keep applying for jobs they are not physically able to do, while struggling to pay rent and survive on the income they receive. Some try to support themselves with whatever arts or crafts work they do as therapy at home. Whatever happens, their rent or house payments aren't reduced.
How can you help? You are one voice in the parliament that controls much of our lives. You can promote easing up on the DSP for people with severe chronic illness. Our doctors tell us to stop working for a reason. A test to see what we can do doesn't show the true picture. Any of us can do most things a healthy person can do. We can't do as many things in a day as a healthy person can do. Someone with lupus may be able to work or care for herself or himself and a home; but not be able to do both. Most of us prefer to work, and will work as long as possible, so when we apply for a DSP, it's necessary.
You can work towards reinstating the Chronic Illness Dental Scheme.
You can object when people on the DSP are called things like a "burden on the economy." We didn't choose to get sick, and we don't try to be a burden on anyone. (And remember parliamentarians don't have to be sick or at retirement age to get their pensions, so calling us a burden, when there are people quite able to work being paid much more is more than a little offensive.)
You can protect Medicare and the Pharmaceutical Benefits Scheme if they ever are under threat.
Thank you for your attention to this matter.
If you should want to know more about my condition, or how I manage to live with it, please contact me on .........
Yours faithfully,
.......
That's my version. Yours may be different.
The important thing is that our parliamentarians understand that living with a chronic illness is a major challenge, and those who can't work need to be supported.
Please write to your member of parliament, and please ask everyone you know to write as well. (Healthy people might need to change some of the wording.)The more people who do, the more likely politicians are to realise that this is important.
I'm sending to my local member, the Prime Minister, and all senators from my state. Please note in the comments who you've written to. (It doesn't matter if anyone gets several letters.)
Update: Important.
I've just discovered the list of senators on the Parliament House site was last updated before the election. Please leave it a week or two before writing to Senators, so that you get the right people. The Members of the House were updated since the election, so go ahead and contact them right now.
Find your electorate in this list: http://www.aph.gov.au/Senators_and_Members/Members. Click on your electorate to find your local member. Then click on your local member to find their address.
What are you writing in your letter? Well feel free to put it in your own words, and add in any more information you feel is relevant, but this is a basic draft:
Dear .......,
Congratulations on your election (or re-election) to the seat of .......
As a member of the Australian Parliament, you may want to know about issues faced by Australians with serious chronic illnesses, such as lupus, fibromyalgia, and related conditions.
You may be aware that women are the fastest growing group of people becoming homeless, and one of the factors leading to homelessness in women is frequently chronic illness.
Lupus causes pain, fatigue, cognitive dysfunction, arthritis, and organ failure. It does not discriminate about which organs to attack. It is incurable, and eighty percent of the people who have it are women.
Many people who have lupus struggle on for years, trying to live a "normal" life, working full-time, providing for their families. There comes a time for many of us however, when that is no longer possible.
Chronic illness can place an inordinate pressure on relationships, and some marriages break up, leaving the patients being the only one supporting themselves, and sometimes children as well.
So what happens when the doctor says it's time to stop work? We apply for the Disability Support Pension. Very few people with lupus actually get it. Many keep working full time and end up with organs failing, multiple hospitalisations, etc.
In the lead up to the election, disabled pensioners were demonised as a "burden on the economy", and the pension was tightened up so that about eighty-five percent of applicants for the DSP were refused. That clearly means that even fewer people with serious chronic illnesses are being accepted.
What do you suppose happens to the lupus patients who are denied the DSP? Some struggle to continue to work full time - at great cost to their health. Some drop to part-time work and struggle to survive on insufficient income. Some will end up on Newstart Allowance, and will have to keep applying for jobs they are not physically able to do, while struggling to pay rent and survive on the income they receive. Some try to support themselves with whatever arts or crafts work they do as therapy at home. Whatever happens, their rent or house payments aren't reduced.
How can you help? You are one voice in the parliament that controls much of our lives. You can promote easing up on the DSP for people with severe chronic illness. Our doctors tell us to stop working for a reason. A test to see what we can do doesn't show the true picture. Any of us can do most things a healthy person can do. We can't do as many things in a day as a healthy person can do. Someone with lupus may be able to work or care for herself or himself and a home; but not be able to do both. Most of us prefer to work, and will work as long as possible, so when we apply for a DSP, it's necessary.
You can work towards reinstating the Chronic Illness Dental Scheme.
You can object when people on the DSP are called things like a "burden on the economy." We didn't choose to get sick, and we don't try to be a burden on anyone. (And remember parliamentarians don't have to be sick or at retirement age to get their pensions, so calling us a burden, when there are people quite able to work being paid much more is more than a little offensive.)
You can protect Medicare and the Pharmaceutical Benefits Scheme if they ever are under threat.
Thank you for your attention to this matter.
If you should want to know more about my condition, or how I manage to live with it, please contact me on .........
Yours faithfully,
.......
That's my version. Yours may be different.
The important thing is that our parliamentarians understand that living with a chronic illness is a major challenge, and those who can't work need to be supported.
Please write to your member of parliament, and please ask everyone you know to write as well. (Healthy people might need to change some of the wording.)The more people who do, the more likely politicians are to realise that this is important.
I'm sending to my local member, the Prime Minister, and all senators from my state. Please note in the comments who you've written to. (It doesn't matter if anyone gets several letters.)
Update: Important.
I've just discovered the list of senators on the Parliament House site was last updated before the election. Please leave it a week or two before writing to Senators, so that you get the right people. The Members of the House were updated since the election, so go ahead and contact them right now.
Saturday, 4 June 2022
15 Lupus Blogs You Should be Reading in 2016
Health Listed has come up with a list of 15 Lupus blogs they think you should be reading.
You can find out who the other 14 are here.
You can find out who the other 14 are here.
Monday, 16 May 2022
Five Years of Sometimes, it is Lupus
 |
Yes, five years ago today, I wrote my first, hesitant, post, not knowing if anyone would read it.
I don't know that I expected it to last this long. I don't even know that I expected to last this long myself.
One of the initial reasons I started blogging was to make money, in five years, I've made less than $200. So that's not funding a big party to celebrate five years in business.
Another reason was to tell people who didn't know about lupus about this disease. It turns out that almost all my readers actually have lupus or are personally touched by it in some way (a family member or close friend has it.) So actually I'm not telling anyone anything new.
Looking at its original goals, this blog's been an abject failure.
I keep writing, because I've discovered those goals were second best.
I've gained something much better than money, however. I've gained a community. The people who read this blog, who make comments, who speak with me on social media, remind me constantly that I'm not facing this rotten disease alone. Whatever happens to me has happened to someone else, and will happen to yet another person. We're all in it together. And for me, that's important, because one thing chronic illness is really good at is making me feel alone.
So dear readers, thank you for the five years of ups and downs that we've shared. Hopefully, we'll have many more years to share as well.
And if you were thinking of a birthday gift? Can you spare a fiver? On the right-hand column of this blog, you'll find a couple of organisations that are busy doing lupus research. Choose one and send them five dollars in honour of five years of this blog. If each of the 4000+ people on the Sometimes, it is Lupus Facebook page sent five dollars to lupus research that would be .... not nearly enough .... better all send ten.
Tuesday, 10 May 2022
Lupus Survey Results - A Picture of Us
If you filled out the lupus survey, thank you very much.
The results are below - you may find you have to scroll side to side to see everything.
There are some issues with the reliability of the survey - there was only one male respondent, and since ten percent of lupies are men, that's a bit of an under-representation. Apart from that it was only a sample of 99 people, which is a very small sample, and of course it was self-selected (people chose for themselves to fill it in), rather than a true random sample. Even with all that taken into account, I still think it gives us a good picture of ourselves:
We're of a wide variety of ages, and most of us had a significant time lapse between our first symptoms and our diagnosis. For a quarter of us that time lapse was ten years or more. (I'm sure it would be very interesting for someone to research at some time, just what happened in those ten years, and why so many diagnoses took so long.)
In the general population, about 1 in 68 children is diagnosed with an autistic spectrum disorder. Of the 70 lupie parents who responded to the ASD question, 12 had a child or children diagnosed with an ASD. That is clearly well above the amount that would be expected. This fits with other studies which have indicated that children of mothers with lupus might have an increased risk of autism. Again, those studies are few and science is only at the very beginnings of understanding why this might be the case, but we have borne it out in our own little survey.
The survey looked at another pet issue of mine - people with invisible illnesses being criticised for using disabled parking spaces. The vast majority of respondents didn't have disabled parking permits. Of those who did, about half used their permit and never had any problems. Of the other half, a small number were afraid to use their permits, and a significant number had received criticism.
On the question of the pain experienced by lupies - no-one claimed to be completely pain-free even on a good day. For most people, pain on a good day ranged from 3 to 5 on a ten scale. On a bad day, most lupies reported a pain scale from 8 to 10, with no-one having a pain level below four.
The vast majority of us are chronic liars, admitting on the survey that we do lie to family and friends and say we are "fine" when we most certainly are not. (Only 11 respondents claimed that they did not do so.)
Most of us have gut symptoms. About half of us have gut symptoms that are affected by gluten, lactose, or both. A quarter have gut symptoms that aren't affected by either of those. Lactose came off as causing issues for far more people than gluten did, and the majority affected by gluten were also affected by lactose.
Brain fog (cognitive dysfunction) is a problem for all except one of us. That one person, I salute you. Most had relatively mild to moderate brain fog problems. About a third were had a more serious issue, regularly forgetting important things or being confused, or even at the point of wondering if they had dementia.
There were no surprises in the question of who diagnosed us. The vast majority were diagnosed by a rheumatologist with a GP being the next most common doctor to do the diagnosis.
More than half of us took steroids and felt they had caused us to gain weight. About a quarter of us don't take steroids. Eleven people took steroids but didn't notice an effect on their weight.
As for the impact on everyday life, more than half of us reported that lupus changed everything. Of the rest of us, most said it had a moderate to serious effect. None of us said there was no change.
Summary of responses
Are you female or male?
| Female | 98 | 99% |
| Male | 1 | 1% |
What is your age range?
| Under 20 | 3 | 3% |
| 21 to 30 | 9 | 9.1% |
| 31 to 40 | 27 | 27.3% |
| 41 to 50 | 26 | 26.3% |
| 51 to 60 | 19 | 19.2% |
| Over 60 | 15 | 15.2% |
How long was it between when you first had symptoms and when you were diagnosed?
| I don't remember | 8 | 8.1% |
| less than 1 year | 14 | 14.1% |
| 1-2 years | 14 | 14.1% |
| 2-3 years | 13 | 13.1% |
| 4-5 years | 13 | 13.1% |
| 6 -7 years | 6 | 6.1% |
| 8 - 9 years | 6 | 6.1% |
| 10 years or more | 25 | 25.3% |
Do you have children diagnosed with Asperger's or another Autism Spectrum Disorder?
| I don't have children. | 28 | 28.6% |
| I have children, but don't have any diagnosed with an ASD. | 58 | 59.2% |
| I have one or more children diagnosed with an ASD. | 12 | 12.2% |
Have you been criticised for using a disabled parking spot?
| I don't have a disabled parking permit. | 80 | 80.8% |
| I have a permit, but don't use it, because I don't want to be criticised. | 3 | 3% |
| I have a permit, but don't use it for other reasons. | 0 | 0% |
| I have a permit, and have been criticised for using it. | 7 | 7.1% |
| I have a permit and use it, and have never had a problem. | 9 | 9.1% |
Using a scale of 1-10 (1 is no pain, 10 is the worst pain imaginable), what is your level of pain on a "good" day?
| 1 | 6 | 6.1% |
| 2 | 19 | 19.2% |
| 3 | 20 | 20.2% |
| 4 | 22 | 22.2% |
| 5 | 18 | 18.2% |
| 6 | 8 | 8.1% |
| 7 | 3 | 3% |
| 8 | 3 | 3% |
| 9 | 0 | 0% |
| 10 | 0 | 0% |
Using a scale of 1-10 (1 is no pain, 10 is the worst pain imaginable), what is your level of pain on a "bad" day?
| 1 | 0 | 0% |
| 2 | 0 | 0% |
| 3 | 0 | 0% |
| 4 | 2 | 2% |
| 5 | 4 | 4% |
| 6 | 3 | 3% |
| 7 | 10 | 10.1% |
| 8 | 29 | 29.3% |
| 9 | 24 | 24.2% |
| 10 | 27 | 27.3% |
Do you regularly lie to family and friends, and say you are OK or "fine", when you are in pain, fatigued, or suffering other symptoms?
| Yes | 88 | 88.9% |
| No | 11 | 11.1% |
Do you have gut symptoms that are made worse by gluten or lactose?
| I have no gut symptoms. | 15 | 15.2% |
| I have gut symptoms, but they are not affected by gluten or lactose. | 27 | 27.3% |
| I have gut symptoms which are affected by both gluten and lactose. | 27 | 27.3% |
| I have gut symptoms that are affected by gluten, but not lactose. | 8 | 8.1% |
| I have gut symptoms that are affected by lactose, but not gluten. | 22 | 22.2% |
Do you have "brain fog"?
| I never get brain fog. | 1 | 1% |
| I sometimes forget small things. | 26 | 26.3% |
| I regularly forget small things. | 22 | 22.2% |
| I sometimes forget more important things, and find myself a little confused. | 22 | 22.2% |
| I regularly forget more important things and find myself confused. | 15 | 15.2% |
| I sometimes worry I might have dementia. | 13 | 13.1% |
Who diagnosed your lupus?
| General Practitioner | 23 | 23.2% |
| Rheumatologist | 65 | 65.7% |
| Immunologist | 2 | 2% |
| Another specialist | 9 | 9.1% |
Have you found steroids (eg prednisone) have caused you to gain weight?
| I don't take steroids. | 27 | 27.3% |
| I take steroids, but haven't noticed an effect on my weight. | 11 | 11.1% |
| I take steroids, and believe they have caused me to gain weight. | 54 | 54.5% |
| I have steroids and believe they have made it harder for me to lose weight I already had. | 7 | 7.1% |
How has lupus affected your day-to-day life?
| No effect at all. | 0 | 0% |
| Little effect | 4 | 4% |
| Moderate effect | 21 | 21.2% |
| Serious effect. | 15 | 15.2% |
| Lupus has changed everything. | 59 | 59.6% |
Number of daily responses
| Date | Count |
|---|---|
| January 10, 2022 | 6 |
| January 11, 2022 | 28 |
| January 12, 2022 | 3 |
| January 14, 2022 | 4 |
| February 21, 2022 | 2 |
| March 7, 2022 | 3 |
| March 8, 2022 | 2 |
| March 14, 2022 | 1 |
| March 17, 2022 | 3 |
| March 31, 2022 | 1 |
| April 3, 2022 | 1 |
| April 5, 2022 | 1 |
| April 6, 2022 | 6 |
| April 7, 2022 | 2 |
| April 10, 2022 | 1 |
| April 11, 2022 | 1 |
| April 12, 2022 | 1 |
| April 16, 2022 | 2 |
| April 17, 2022 | 2 |
| April 22, 2022 | 2 |
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