Saturday, 29 June 2013

Chronic Illness Lessons

Image: Pills and coins. Text: Chronic Illness lesson: A diagnosis doesn't mean you're going to get better. It means that for the rest of your life you're going to pay for thing you wish you didn't need.Living with a chronic illness has taught me a lot of things.  Here are some of them:


    Image a hand full of pills. Text: Chronic Illness Lesson: when you swallow a handful of pills and they get stuck half way, it hurts.
  1. It's faster to swallow a handful of pills at once than to swallow each pill individually.
  2. When you do (1) sometimes the pills will get stuck half-way down your oesophagus, and cause a horrible pain in your throat/chest that will not go away for hours, and nothing seems to be able to clear it.
  3. Even after experiencing (2), you will still do (1) because the amount of time you would spend taking pills individually is ridiculous.
  4. A diagnosis does not mean you're getting better. It does mean that you're going to spend the rest of your life paying money you don't want to spend on things you wish you didn't need.
  5. You are called a "patient" because you have to be patient while waiting at your GP's surgery, at your specialist's surgery, at the chemist, at pathology, at medical imaging, waiting for results, waiting for appointments....  Just learn to be patient. Because now, you're a patient.
  6. For most people a diagnosis of "lupus" is no longer a death sentence.  It's a life sentence.  Whatever you plan, you have to take into account the possibility that it will be a "bad" day.
  7. No matter how sick you are, someone will tell you how good you look. Sometimes, they're trying to be nice. Sometimes, they actually think you're not really sick and are making it all up.
  8. Simple tasks require long rests to recover.  Complex tasks need to be broken down into smaller, simple tasks, with long rests to recover.
  9. No matter what you used to do, your body is going to rebel if you try to do the same old things.
  10. Some people will walk slower so you can keep up with them.  Some will stop from time to time for you to catch up.  Others will just keep going and not even realise they've left you behind.  


Friday, 28 June 2013

Housework

Image: cat drinking out of dishes in sink.  Text: Lupus and housework every task is broken down into smaller tasks and each require a rest when they're done.

Housework seems to take up an inordinate amount of my time.... but if you saw my flat, you'd be forgiven for thinking I didn't ever do any of it.

Looking around, I can see why my ex-husband used to complain about my being lazy.

It's housework day today.  (Actually, every day is housework day, it's just that only very little bits get done each day.) So far, I've run the steam cleaner over the floors.

I'm having a rest to recover from that now.  When I build up some energy, I'll tackle the dishes that I confess to not having done for a couple of days.

Hopefully, I'll cook at least one proper meal today.

Tomorrow, I plan to get out the steam cleaner again, and do the shower and the rest of the bathroom. Maybe. If I've got the energy.

It's not that I wouldn't love to live in a perfectly organised, tidy, home.  It's just that I like to be able to function at some human level as well.  For me that means breaking every single task down into much, much smaller tasks, and having rests in between all of them.

I have to trust that, when it comes down to it, everything important will get done at some time.

Friday, 21 June 2013

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.

Thursday, 20 June 2013

Not Crazy, Just Lupie

I've had an ongoing problem with brain fog for ages.  About six months ago it got so bad I had to stop work. Then my GP referred me to the Neurology Clinic at the Royal Brisbane and Women's Hospital.

I was put on a waiting list.  Of course, I could have been seen by now if I went to a private neurologist. Having had to stop work, I couldn't afford to keep up my health insurance, so when I most need to see a doctor urgently, I can't.

But just last week a new symptom occurred, one that my GP says the Neurology Clinic will definitely find "interesting", and which might get me bumped up the waiting list a bit.

I had an hallucination.  There was a blonde woman, wearing a pink shirt, and white skirt, in my bedroom.  I came in from taking the dog out for his middle of the night toilet trip, and there she was, leaning over my bedside table, as if she were putting something down on it.  I realised it was an hallucination, not someone having broken in, when I saw she didn't have a face.  (Something of a give-away right there.)  Then she vanished, which is also something I think a burglar would be unlikely to do.

My GP tells me that visual hallucinations are very rare in mental illness, so it's very likely to be organic (translation to non-doctor-speak: I'm not crazy, just lupie.)

Lupus can affect any organ, including the brain. Other lupus patients have told me about having hallucinations, seizures, all kinds of neurological symptoms that I don't want.

This new symptom does mean my weaning off steroids has stopped. The GP's not making me go back up to the old level, just not reduce them any further, until I've seen a specialist. We're not interfering with any medication until I've seen a specialist.

In the meantime, I'm left wondering how much of what I see is real.

Tuesday, 18 June 2013

A Guide To A Second Medical Opinion

Another post republished from The Conversation, because it may be of relevance to people with lupus. We spend so much time with doctors, expert advice on when and how to get a second opinion may be quite useful to some of us.

A guide to a second medical opinion

By Michael Vagg, Barwon Health

How many dealers did you visit before you last bought a car?

Were you happy with the first quote you got for a painting job or kitchen renovation?

When it comes to your finances, your house and your belongings, it makes sense to do your research, shop around and make sure you’re getting the best advice.

But it seems few Australians take such a rigorous approach when it comes to their health.

In order to get the best outcome from a second opinion, it’s important to first negotiate the issues of power and autonomy in your relationship with your treating health professional. As a patient, it is your absolute right to seek advice and to be in charge of what happens to your body.

Respect for autonomy is drummed into health professionals, because the power balance in the clinician-patient relationship is generally with the clinician. Too little autonomy, and you will feel like you are being patronised or given no say. You should expect to be treated as a partner and collaborator in the process. And your opinions and preferences should be respected and honoured, regardless of the option you choose to take.

How do doctors respond?

Discussions about loyalty come up repeatedly, and as a pain specialist, I’ve met many patients who are doggedly loyal to their practitioners under any circumstances. Such people usually feel a second opinion is akin to a betrayal or a breach of trust, and wouldn’t think about it unless they had fallen out completely with their treating doctor.

GPs can have a relationship with their patients which goes back decades, and in my experience are unlikely to feel that it will be permanently derailed by seeing another clinician. When I did some general practice during my training, the much more experienced GPs used to welcome the chance to have a fresh set of eyes on the problem. They were happy to co-operate and provide you with all the information a second opinion doctor might find useful.


Getting a second opinion is not akin
to a betrayal or a breach of trust. 
Image from shutterstock.com
Some of my colleagues tend to have differing levels of comfort with this idea. There are those who learnt their skills during the era of “doctor knows best” who regard articulate, informed consumers with suspicion. There are those with personalities that are naturally authoritarian, and some who are stressed or busy to the point that they react with frustration or anger to a request from a patient for extra information or time to consider their options.
Other colleagues seem to need reminding that they are meant to be assuming some basic responsibilities and duties of care rather than writing prescriptions or giving referrals on demand. With them, the balance is completely towards patient autonomy, and they seem to feel no real responsibility on their part to educate, advise or motivate their patients. They won’t worry if you want to get another opinion; they’ll have moved on the second you’re out the door.

If your first-opinion doctor seems to be like either of the last couple I’ve mentioned – and reacts either poorly or not at all to your request – a second opinion might be exactly what you need.

Why seek a second opinion?

Patients who seek a second opinion do not necessarily think their diagnosis is wrong, nor do they necessarily disagree with the recommended treatment. A recent French study found that having standard practice guidelines which made diagnosis and treatment consistent did not reduce the need for second opinions. Most patients are not just looking for a Dr House to come up with a novel diagnosis or treatment.

Patients aren’t looking for a Dr House, they want
 genuine information in a readily understandable 
form. Flickr/guilhembertholet

The answer is simply communication. Most patients who seek a second opinion do so because they are unhappy with the information they’ve been given about their situation. They may also be unhappy with the way their diagnosis and treatment recommendations were communicated to them; they are seeking a clearer explanation or a doctor they feel a better rapport with.

Clinicians who provide accurate information in a readily understandable form would likely reduce the need for their consumers to seek second opinions.

Tips for getting a second opinion

Every patient story is different but there are some things that make the process of seeking a second opinion a little smoother:

1. Let your usual treating health professional know. It will help preserve your longer-term relationship with them and make sure the new one you are seeing can get all the information they need.

2. Be clear in your mind about what the reason for the second opinion is. Are you seeking an opinion, or possibly ongoing care from the new provider? Are you prepared to re-think the current diagnosis or treatment plan if this is recommended? A 2012 Israeli study found that second-opinion clinicians tended to choose treatment with greater intervention if they knew there was a pre-existing, more conservative opinion.

3. Be open with the new health professional that you are seeking a second opinion. This will focus the clinician’s attention on the part of your care that you’re concerned about. There is limited literature about the real-life benefits of second opinions, but if they are mostly being obtained for reasons of communication style and rapport, it would be plausible to assume that you will be more satisfied and do better generally with a clinician you can relate to well.

4. Second opinions may lead to spending more time and effort, especially if you have to travel to another suburb, town or even interstate. Be aware that you may feel more obliged to follow advice you’ve gone to so much effort to obtain. This is also one of the reasons that you should have clear in your own mind what the point of the consultation is. Take your time to consider the second opinion as carefully as you did the first.

5. Don’t consider the internet to be the final word on second opinions. The smartest people in medicine are not the ones writing on blogs and forums or selling their unique patented products. Stick to reliable, trustworthy sites from big institutions, and use this information to get a “background briefing” rather than to make a diagnosis yourself.
Medical diagnosis is an arcane art form, informed by equal parts of education, training, experience and judgement. It’s about having a whole diagnostic strategy for a given problem, including knowing when a negative test is as valuable as a positive one. Often it’s easy; occasionally it’s impossible – and sometimes it doesn’t matter at all.

Michael Vagg does not work for, consult to, own shares in or receive funding from any company or organisation that would benefit from this article, and has no relevant affiliations.
The Conversation
This article was originally published at The Conversation. Read the original article.

Monday, 17 June 2013

Superfoods: Not so Super After All?

Article reprinted from The Conversation, an expert look at "superfoods" and health.

Superfoods: not so super after all?

By Emma Beckett, University of Newcastle and Zoe Yates, University of Newcastle
Superfoods is a buzzword now part of mainstream food and health language, often touted as miracle foods that cure all ills, stave off ageing and disease, or aid weight loss.

In practice, superfoods are more readily evoked when it comes to exotic and ancient fruits. Goji berry and acai berry, for example, or pomegranate and mangosteen are all famously regarded as being super. Liver is actually more dense in nutrients than any of these foods, but have you ever heard it called a superfood?

As you may have guessed by now, superfood is not a scientifically or technically defined term. It’s not a word that medical professionals or researchers really use. Indeed, it has little meaning in the medical research community.

Nonetheless, enter superfood in any internet search engine and it will return millions of hits – mostly from news, magazines, blogs and sales sites. Repeat the search in the US National Library of Medicines online database of biomedical research publications, PubMed, and you get a grand total of three hits along with the helpful suggestion that you may have, in fact, intended to search for “superfund”.

But that doesn’t mean there’s no scientific research into superfoods. Researchers just don’t call them “super”. And there’s a good reason for this: the giant leap from testing foods in the lab to their amazing marketed powers is simply too far to be scientifically or ethically sound.

Just because a component of a superfood may kill cancer cells in a dish in the lab doesn’t mean that eating lots of a food containing this component will prevent you from getting cancer.

What’s more, the assumptions behind superfood science can be problematic. Much of the available evidence comes from cell culture or animal models. While these models are good tools for scientists, they don’t automatically apply to humans.

Humans have considerable environmental and genetic variances that make us much more complicated.
Even when these studies are done in humans, they’re often tested in very high concentrations over short durations that are not reflective of regular balanced diets. There simply aren’t enough long-term, realistic studies to support the claim that superfoods can stave off illness or old age.

It’s easy to see why the concept is popular; being able to superfoods that protect you from all kinds of harm are a seductive notion. But the idea may be doing more harm than good. At best, it’s a misleading marketing tool, at worst, it may encourage bad habits.

Superfoods can give people a false sense of security, letting them believe that they can somehow balance out other unhealthy habits.

The prohibitive cost of superfoods is also an issue. The average price of “super” berries such as goji and acai is tens of times higher than humble raspberries, blackberries or apples. But they certainly don’t have ten times the nutritional value.

A common feature of superfoods is that they contain large amounts of antioxidants.

Antioxidants protect cells in the body from free radicals, which are reactive molecules originating from sources such as cigarette smoke, processed foods and normal metabolism. Too many free radicals damage cells, leading to age-related diseases, such as cancers.

Most of the research on the health benefits of dietary antioxidants comes from cell and animal models. This research is, again, not necessarily transferable into the regular dietary context.

The studies that have been done in humans generally show short-term elevations of antioxidants after consuming particular foods in very high concentrations, as you would expect. Avoiding sources of free radicals to start with is probably more beneficial than trying to balance them out with antioxidants.
Nutrients are clearly important for good health but seeking out large doses from any one source is not likely to be beneficial. Simply having more of a particular vitamin or mineral is not necessarily better.
Indeed, too much can sometimes be just as harmful as not enough. Also, the body cannot store certain nutrients so there’s no benefit in consuming large amounts of them; they will only be expelled as waste.
A fixation on superfoods can distract people from the benefits of healthy everyday foods. What most western diets are lacking is not any one super source of nutrients, but variety. Everyday fruits, vegetables and whole foods each have their own unique nutrient profile and contain individual factors that can be said to promote health and wellbeing.

No single food item, or even the top ten superfoods combined, have enough superpowers to replace a balanced, varied and healthy diet. Couple this with avoiding excessive consumption of processed and refined foods and alcohol, and you will have done everything you can, nutritionally speaking, to help you stay healthy and well into old age.

Emma Beckett receives funding from CSIRO (CSIRO OCE PhD Scholar)
Zoe Yates does not work for, consult to, own shares in or receive funding from any company or organisation that would benefit from this article, and has no relevant affiliations.

The Conversation
This article was originally published at The Conversation. Read the original article.


I've reprinted this article because, while it's nice to think that there is hope in miracle cures, and foods with special properties, no single food or supplement is going to do all the things people claim "superfoods" do.  Nothing replaces a healthy balanced diet, whatever moderate exercise you can manage, and taking your medication.

Friday, 14 June 2013

Reliable Information

Image: Kookaburra. Text: Let me get this straight. You're not a doctor but you know my doctor's wrong, and you know how to cure my condition because you read it on the internet? I'll answer when I stop laughing.There's a lot of information about lupus on the internet.

Some of it's reliable.  Some of it is anything but reliable.

When I trained to be a journalist, I was taught to check my sources.  Not all sources of information are equal, especially when it comes to issues of health.  In fact, one Australian television station was recently in trouble with the broadcasting watchdog for getting this wrong.

You will notice, that when I'm giving you information, not just my opinion or personal experience, I'll actually say what my sources are. That's so you can check for yourself to see how reliable my sources are.

Sometimes, my sources will be as hyperlinks in the text of the post, and sometimes, I'll list them at the end of the post.

So how do you tell, when you're doing your own research, who is reliable?

Firstly, most things issued by government health departments can be considered reliable.  An example would be http://www.healthinsite.gov.au/a-z-topics  that  ".gov" in the url tells you that it's a government site, and the information provided should be reliable, and should also be independent of any commercial influence.

Another group of sources which should be reliable are official lupus organisations.  An example is the Lupus Foundation of America site:  http://www.lupus.org/newsite/index.html.  You find this out by going to the site, and reading at the top of the page or the "about" section of the site, to find out who the people producing the information are.  An official lupus organisation will normally have access to experts.

Another group of reliable sources is that of experts in the field.  With regard to lupus, experts would be rheumatologists, or perhaps immunologists.  For example, if you go to http://www.arthritissupportboard.com/, you read that it's written by Dr Shashank Akerkar - a consultant rheumatologist.  Since rheumatologists are specialists who deal with lupus, you can assume the information he gives is reliable.

Those are your most reliable sources for information.

Patient blogs, support pages, etc are lesser sources of information. That doesn't mean they're not good.  It means they are shared experience.  They're not necessarily scientifically tested data.  They're opinion, anecdotes about things that worked for one person but may not necessarily work for anyone else.  Their real value is that we feel less alone when we read that other people are going through similar things to ourselves.  Chronic illness is an isolating thing.  Just knowing that there are people out there who understand makes a huge difference.  These are not a source of medical advice or information.

And the least reliable source of information? Pages that are trying to sell you something.  The page that tells you everything will be better if you buy this super amazing supplement for only $99.99 plus shipping and handling, is going to be giving "information" that's been slanted to make their product look better. The site that says this diet will fix everything (and has no scientific proof to back it up), is just someone's opinion.  And if anyone tells you that you need a product to "boost your immune system", point out to them that your immune system is trying to kill you and you don't need to help it.

But wherever you do your research, remember your primary source of information is still your doctor.  Never change anything in how you treat your lupus (or any other health condition for that matter), without discussing it with your doctor first.

Thursday, 13 June 2013

We're Still The Same

Image blue rose. Text: I'm still the same person I was before lupus, I'm tired, I'm sore and I'm swollen up from steroids, but I'm still the same person.
There are two responses of family and friends that really hurt lupies.

The first is simply denial, or minimisation.  People who claim to love someone with lupus, then refuse to believe the amount of pain, or fatigue they say they have. Lovely Lupie gets branded as lazy, or a hypochondriac, or just told to get over it.

The second is making the lupus more important than the person.  This is where "I can't love you if you're sick" comes in, or the families who tell their Lovely Lupie "you're a burden, we'll be better off when you die"  and all sorts of equally horrible things.

Then there are the great families, the ones like my kids, who just accept me as the same person, and we work around my limitations.  They're happy when I can do things, and just accept when I can't. When we went on holiday together, they were even happy to have afternoon nap time as part of our daily routine.

There are great friends like the ones who will go out with me and simply accept that when I say, "I need a coffee," what I really means is I need a half hour rest and we go somewhere, order a coffee and just sit until I regather my energy. (One friend has suggested we need to get hold of a wheelchair for tackling large shopping centres, but we haven't actually tried that yet. I have the horrors of ending up in a wheelchair, but once in a while, with this particular friend, it could be fun.)

Some Lovely Lupies even have great marriages, with a partner who works with them to overcome the challenges of daily life.  I haven't experienced that, but I know it must be incredibly precious to those who do.

Inside these bodies that cause us pain and the frustration of not doing what we want them to do, we are still the same people we always were. Lupies everywhere really appreciate the people who can see that, and can love us as the people we are.

Tuesday, 11 June 2013

Guilt

Image Mr Bumpy Cat drinking out of the sink.  Text: I see the things I need to do, dishes to was, floors to sweep, clothes to wash, dinner to cook, shower to clean, plants to water. I see it and I feel guilty because my body just won't let me do it.One of the frustrations of my life, and I'm sure it is for lots of other lupies as well, is all the things I
don't get done.

My ex-husband used to call me lazy.  I hadn't been diagnosed then, but I would just get exhausted so fast, that I never could keep up with the housework.

I would start on the housework, but I would not be able to keep going.

Even now I know what my problem is, and I don't have an accusing husband any more, I still feel guilty about the things I don't get done.

You see, I don't need the accusing husband.  I'm quite capable of pointing out to myself all the things I haven't done.  I'm quite capable of making myself feel guilty for lying on the couch with my computer instead of doing something about the multiple layers of soap and grime building up in the shower, or the new form of life that's breeding in the back of the refrigerator.

I'm quite aware of the need to change the cat's litter tray and to vacuum the carpet. And I know those last couple of bags from our move in January are not going to unpack themselves, and that I'm going to run out of clothes if I don't wash soon.

And I sit (or lie) here, feeling guilty, because I know it all needs to be done.  But I'm so exhausted, I just can't do any of it.

Sunday, 9 June 2013

Lupus and Relationships

Picture of swans. Text: Lupus tests relationships. The strong ones survive.
Lupus puts stress on all parts of life.

Sadly, for some people, that means relationships and family life seem to come unstuck. 

 The strain of having one person continuously sick is just too much. It can be made worse if partners or family members don't understand what it is like for a lupie to live with pain, fatigue, and other symptoms. Sometimes, family can even be resentful because a lupie just doesn't seem to do their fair share.

Happily, there are some lupies who are able to say their partners and families are very supportive, and have very strong relationships.



Saturday, 8 June 2013

Lupus and Weather

Image of cat snuggled in furry blanket.  Text: Lupus and weather. When it's hot, I'm tired. When it's cold, I'm hurting.It's winter here in Brisbane.

For me, that will mean increasing joint pain as the weather gets colder.

Lots of people with lupus find the weather affects their health. My fatigue increases in hot weather and pain increases with cold weather.  I also find my headaches are worse when there's storms around.

Other people report increased joint pain when it's raining.

For those of you in Queensland, the state government has a subsidy available for concession card holders who have a medical need for air conditioning.  You can get further information on that subsidy here.

The downside to the subsidy (and the reason I'm not trying to claim it), is that you have to already have air conditioning installed in your home to get it. There's no scheme (at least that I can find) to help you get air conditioning installed if you need it.

Friday, 7 June 2013

Gravitationally Challenged

Picture of hand with two broken fingernails.  Text says: The Clumsies: when a task as simple as opening a cupboard involves a fall and two broken nails.You won't find it listed as a symptom of lupus in any book, but I have an issue that I've found lots of other lupus patients also get. Maybe it's just something the doctors haven't connected to lupus. Or maybe it's just an extension of Brain Fog or joint pain and weakness.

Lots of us seem to suffer from what I call "The Clumsies" or being "Gravitationally Challenged" we walk into things, we fall over, we drop things.  I know everyone does these things from time to time.  Lupies (some of us at least) do them a lot.

A classic example of The Clumsies is last night, I was getting plates out of the kitchen cupboard for dinner.  That's a relatively simple task, you might think. I have a history of plates leaping out of the cupboard to attack me, but that didn't happen last night.  Last night, it was an entirely new (for me) manifestation of The Clumsies.  Last night, I was opening the cupboard, when I lost my balance and fell straight into the cupboard door, snapping two fingernails neatly off. I've never broken a bone, which is good, but breaking two nails by opening a door seemed pretty impressive.

The Clumsies get to me in all kinds of situations.  The last time my son and I went to a fast food place, I managed to empty the tray with our meals and two large icy colas straight over my son.  He tells me I am never allowed to carry a food tray again.  On the plus side, he did get to test out the manufacturer's claim that his phone is waterproof (well, cola-proof.)

Lots of lupies have stories about having encounters with The Clumsies. There are days when it just seems that all inanimate objects are conspiring against us. So far as I'm aware, there is no known solution to the problem. So the only advice I can give to my fellow lupies is: never trust an inanimate object.

Thursday, 6 June 2013

Lupus Support and Awareness on Social Media

Image of roses with text: Five million people worldwide have lupus. Lupus affects them, their family, their friends, their community, everyone who counts on them for anything. Lupus has a huge impact.
The Lupus Links Page includes links for social media.  It's out-of-date.  It's always going to be out-of-date, because there seems to always be something new, and I just can't keep up.

So here's a chance, if you have a lupus support/awareness page on any social media, please add your link here, so we can share them further.  (When it asks for "name" give the name of your page as you want it to appear.)

This link list will also replace the social media link list on links page.

I'll try to do this on a semi-regular basis, so everyone can discover whatever exciting things are out there that they don't already know about. If you have a lupus-related blog and would like to share this list, click get the html code here .







Wednesday, 5 June 2013

Help Find A Cure

You may remember my earlier post Towards A Cure about the work of Professor Carola Vinuesa and her team at the Australian National University's John Curtin School of Medical Research.

I promised you a link where you could donate to support their work.  At long last, I have it.

If you want to support this research you can do so here: http://philanthropy.anu.edu.au/philanthropy/donate-online/make-a-general-donation/?cause=lupus-research

The link has been added to the right-hand column of sometimesitislupus.com and will stay there permanently.

The Price of Pills

Photo of pills and coins with text: "The economics of illness. Increased expense. Decreased capacity to earn."My son came with me to the chemist on Monday.  He hasn't been there for a while.

He was OK with the chemist pulling out my file of repeats and watching us go through all of them and look at what I was low on. And he was OK with the basket of boxes and bottles of pills that she handed over - after all, he's seen my medication drawer.

What shocked him was the check-out, where it all added up to $175.

"Holy sh..! Does it always cost that much?" he said.

Actually, sometimes it costs more. Plaquenil and methotrexate last me a long time, so I don't need them every month.

Being on a pension, I have a concession card. That means my PBS (Pharmaceutical Benefits Scheme - federal government subsidy for prescription medicines) prescriptions are only about $6 each. I know of at least one other lupie who has missed out on a concession card because her husband earns a couple of dollars a week too much for the health care card limit. That means she has to pay the full PBS scheduled fee for each drug (up to about five times what I pay.) Of course, even at the full scheduled fee, the government is subsidising medications to some degree.

In other countries, subsidies and supports for people on lupus medications don't cover everyone in the way the PBS does here.

American lupies report some get assistance, and some don't. Some have health insurance that covers prescription medication and some don't. Some have been able to "shop around" and find cheaper retailers. Some have gone directly to the drug companies for assistance. (Thankfully, the drug companies have been known to give discounted or even free drugs for patients who are desperate.)

The frightening thing, is that I do hear from lupies who go without medication because they just can't afford it. Money stands in the way of them having their lupus kept under any kind of control.

Sunday, 2 June 2013

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.)
Menu options are patient, the lupus, doctor, about app.
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.

Saturday, 1 June 2013

The Economics of Illness

Text: Economics of illness: increased expenses; Decreased capacity to earn.

Lupus, or any chronic illness for that matter, changes a lot about life. It affects our financial situation as much as anything else.

For most of us, being sick interrupts our working life.  It stops some people from working all together, it limits the amount of time others can work, and the kinds of jobs they can maintain.

It's simple logic - a life-long illness, affects our income life-long.

There are a number of forms of Government assistance for people with chronic illnesses, and these really do make a difference.

For various reasons, not everyone who has to stop work because of illness is able to receive a pension or other assistance. A partner's income may, or your assets may put you just outside of the range of receiving government support at all,  even if the additional expenses of having a chronic illness, then reduce what is left to live on is far less than the income limit.

With or without assistance, what people with a chronic illness are able to earn or receive as unearned income (eg a pension), is usually far less than they would be able to earn if they were healthy.

Expenses include medication, doctors visits, physiotherapy, and other ancillary medical services.  Those are the obvious things.  There's things other people don't think about as well.  For example, I had to change cars: I'd been driving a manual car that didn't have power steering, but changing gear and turning an unpowered steering wheel got too painful for my left shoulder.

If hanging clothes on a line is too difficult, using a clothes dryer uses extra electricity and is expensive. LED lights are more expensive than fluorescent lights, but are safer for people who react to ultraviolet light.

Gluten free foods are often more expensive than their non-gluten-free counterparts, but for quite a few people with lupus, gluten can cause inflammation, and irritable bowel. Also with regard to food, fatigue and pain can make cooking too difficult, but eating out or buying pre-packaged food is more expensive and usually less healthy.

Many people with lupus react to changes in temperature; for example heat makes my fatigue worse and cold makes my pain worse.  Air conditioners are expensive to buy and to run.

The nett result is that people with chronic illnesses are usually in a far worse economic state than they would have been if they'd not become sick.

Off to the Forum

I've just added a forum page to Sometimes, it is Lupus.

It's another way to communicate with other lupies who follow this blog. You can join in discussions, answer questions, all those forum-type things. (I'm being very vague here because I don't know how people are going to use it, until people start using it.)

The forum's powered by Nabble, so the first time you contribute to the conversation, you'll be asked to set up a Nabble account. The cost of having the forum on this site, is that Nabble will put ads on it.

Be aware, that what you say will be publicly visible.  And please, no matter how much you feel they're appropriate, refrain from rude words - kids can see this site (and some kids do have lupus, so it's appropriate that they can see this site.)

To kick the conversation off, I've asked the question: what's the dumbest thing anyone's said to you?