Saturday, 30 March 2013

I Should Never Do Housework

It's Easter Saturday.
lupus.cheezburger.com

I ought to be reflecting on Jesus in the tomb.

What I'm really reflecting on is just how tired I am, and how much I have to do before my daughter comes around for dinner tomorrow night.

I was doing really well. I went to hydrotherapy this week for the first time in ages.

On Thursday, I had plans to take my daughter for an appointment she had at the hospital (not something to worry about), and to go out to dinner with some friends from church.

Thursday morning, I felt so good, I thought I'd just get a bit of the housework done while I had the chance.

So I swept, mopped, and cleaned the shower.  I still felt fine when I went to pick my daughter up. We spent a little longer than expected at the hospital (one pathology blood collection point was closed which meant a longer wait at the other one.) Then we hit the peak hour traffic on the way home.  I always find driving in traffic exhausting.

Most lupies (and people who know me) can guess what happened next.  I sat down in front of the tv for a few minutes' rest before getting ready to go out again. I fell asleep. I missed dinner, and the next day slept too late to go to the Good Friday service at church.

I think the moral of the story is that I should never do housework.

Either that, or I should be a bit more careful of when I do my housework, so as to budget my energy more appropriately. I should never do housework on days I have other things to do.

Thursday, 28 March 2013

Vote for Me

You may have noticed the Best Australian Blogs competition logo that appeared on this site a little while ago.

It's just changed to a "Vote for Me" logo, because the nominations have now closed, and voting has begun for the "People's Choice" award.

Any readers (anywhere in the world) can vote.

To vote, you either click the "Vote for Me" badge, or follow this link. You need to click through the form to find Sometimes, it is Lupus.

You can click on as many blog titles as you want to vote for, but can only do this once.  You'll be asked for your name and email at the end of the form.

Wednesday, 27 March 2013

Back In The Pool

lupus.cheezburger.com
Well, after months of not going, I finally went back to hydrotherapy.

It hurt a bit, getting joints moving, even with the support of the water. I spent three-quarters of an hour in the pool, and had a thorough work-out. (Or as thorough as I get.)

I found that after so long away from the pool, one set of ten repetitions of each exercise was as much as I could manage.

Today, my joints aren't hurting as much, and have a better range of movement than they've had for a while, but I am incredibly tired. It's always a challenge to balance the energy budget.



For a basic introduction to hydrotherapy exercises, see my earlier post: Hydrotherapy.
To understand my concept of the energy budget, see: The Energy Budget.


Sunday, 24 March 2013

Memorial Page

I've added a new page to Sometimes, it is Lupus.  It's a memorial for those who have lost their lives in the battle against lupus. I don't know if something like this exists anywhere else, but if it does, I haven't seen it.

We set aside times like ANZAC Day and Remembrance Day to recall all those who have fallen in wars against human foes.

To me, it seems appropriate that we have some time or space to recall those who have fought the battle against lupus and fallen.

In this war, there are no volunteers. None of us had a choice to fight it. And there's no leave. Even in times of remission, we know the wolf could launch an attack at any time.

Let's take some time to recall those who have gone ahead of us, and those who have fallen while fighting alongside us, and to pray for the day we see a cure, when the war can be won.

If you would like to leave a personal tribute to someone you know or love who has died from lupus, please feel free to do so in the comments section of the In Memorium page.

Saturday, 23 March 2013

Missed the Goal, But Got Something Better

I just looked back at my first ever blog post, written almost two years ago.  It has had 32 page views. Now, Sometimes, it is Lupus gets up to 600 page views a day. So, I guess I've come a long way.

I've been trying to work out if I've achieved what I set out to do, and realised that I really didn't set very clear, measurable goals.

My early goal was to "increase lupus awareness". I don't know for sure how I can measure that.  I know of one person who is a regular reader, who doesn't have lupus and didn't know about it when she came to this blog (via my cat's blog) and now is a strong supporter of lupus patients in her own country.  So I guess I've increased awareness by at least one person.

I also thought maybe I could make a little extra money by blogging. I've earned $25 with my one and only sponsored post. In theory, I make money when people click the ads on my site, but that only gets paid when  it builds up to $150. At the rate that is going, I'm on target to get paid in another five to ten years.

I added in a goal to help people with lupus and other chronic illnesses who run their own businesses, by building the Lupus Business Directory. Today, I asked on the Sometimes, it is Lupus Facebook Page if anyone had ever bought anything from a business listed in the directory - two people responded. And I've bought stuff out of the directory, so that's three of us.

If you look at what my early goals were, and what can be measured from them, this whole project has been a very limited success, if not a complete failure.

But something else has happened along the way. Something I didn't set as a goal, because I just hadn't thought of it.  A community has formed.  People read this blog and remember that they're not alone fighting this horrible condition. They share their stories on the Sometimes, it is Lupus Facebook page, and give each other the benefit of their experience, and the encouragement needed to deal with the challenges they face. It's a community where we all find someone who understands what it's like.

I can't measure the actual size of that community, but there are some indications of it - there's more than 1400 people following the Sometimes, it is Lupus Facebook page, and as I said earlier, the blog gets up to 600 pageviews a day.

That's probably not a lot in terms of the on-line world, but those numbers represent actual people, and just one person would be worth the work I do.

So I may not have achieved what I set out to do. But I'm fairly sure something worthwhile is going on here, so I'll keep going and see what happens.

Friday, 22 March 2013

Aviva

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

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

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

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



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

Thursday, 21 March 2013

Butterfly Warriors

I was given this YouTube link of some beautiful Butterfly Warriors in the Philippines, a video about their Lupus Club.

Here's the message the Sometimes, it is Lupus Facebook Page was given with the link:


I hope you and your community watch and enjoy this video we made of the Lupus Club in our hospital. This is for all women with lupus, who are fighters in their own right. :)

-Gabriel Borlongan, med student from the Philippines and co-coordinating officer of Pagsama, the student organization that conceived this project



Tuesday, 19 March 2013

Is It Snake Oil?

Lupus patients (and people with other chronic illnesses) get so many suggestions from well-meaning people about "treatments" or even "cures" for our condition. Sometimes, it's another lupie, who has had a good experience with a change of meds, and it may well be that something similar will help us, but far more often, it's snake oil.

When I hear about these things, I often check what the actual research is into the background. Often, it's something like Low Dose Naltrexone, or Stem Cell Therapy, that has shown some promising results in early research, but has a long way to go before it's actually proven whether it will be effective or not. Some will be things that had very mixed results in early testing and may actually be dangerous in some cases, such as "Cannabis cures all cancers".  And there will be some, such as mixes of vitamins, etc, that will probably have no effect at all.

Here are some quick ways to identify that something is more likely to be snake oil, than an actual, proven, treatment.

  • The has a supporters' website or lobby group, talking about the "miracle" cures: Believe it or not, doctors don't need to be harassed to prescribe proven, safe, treatments.
  • The product treats/cures a huge number of unrelated conditions: a panacea (a medication that cures absolutely everything) does not exist.  Different health conditions are caused by different things, so they are cured by different things.
  • The statement there's a "conspiracy" keeping the research proving its effectiveness a secret: science, medical or otherwise, doesn't work in secret. (The exception would be weapons research.) Research is published so it can be peer-reviewed and reproduced.  Peer-review means that other researchers study the methodology to ensure there were no mistakes made. Reproduction means that the study is repeated by other researchers to check whether they get the same results or not. 
  • The statement that "there's no side-effects": any drug that does anything makes changes to the body in some way.  If the drug does anything at all, it will have side-effects.
  • Vague statements of how the product works, such as "it boosts the immune system": real science will tell you the product works on something like t-cell receptors, or increases the volume of white blood cells or something similar. It will be very specific.
  • It's an off-label (not approved) use of the drug: unless you're taking part in a properly-supervised drug trial, you need to ask why the drug you're being offered has not been officially approved for use for this purpose. If it's approved in several other countries but not yours, that's one thing, but if it's not approved anywhere in the world, you have to wonder.

Problogger is currently encouraging bloggers to write a "How To" post as part of a group writing project.

Monday, 18 March 2013

Side-effects

Some of the common drugs for lupus have some quite unpleasant side-effects.

The steroid prednisone helps control pain and inflammation, but it causes fluid retention, drastically increased appetite (leading to weight gain), a charming "buffalo hump" at the base of the back of the neck, cramps, thinning skin, bruising, poor wound healing, and over time reduces bone density.

The chemotherapy drug methotrexate, can cause anaemia, hair loss, bruising, headaches, stomach problems, etc.  And it makes the lupus sensitivity to sunlight even worse.  (The basal cell carcinoma I had a couple of years ago, my GP blamed on methotrexate.)

We must take our medication - lupus is far worse than the side-effects of the drugs we take, and our doctors do weigh up the risks of each medication they prescribe.  But we also have to be aware of the risks.

Each medication comes with a patient information leaflet, which lists things to be aware of, things to avoid (eg, alcohol, sunlight, grapefruit or antacids, etc) while taking the drug.  It also lists symptoms which could indicate dangerous side-effects, which must be reported to your doctor immediately.

While it is a nuisance to keep all the pieces of paper, it is useful to re-read them from time to time.  It's good to know the pieces of paper are now all on the internet as well. This link will take you to one of the sites that can provide you with the patient information leaflets for medications.

Business of the Week - Gemalytics

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




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

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


Our Services

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


Saturday, 16 March 2013

Friday, 15 March 2013

Autoimmune Research

This is about six months old, because I'm waaayyy behind the times, and didn't realise the Australian Broadcasting Corporation put these type of things up on YouTube for everyone to watch again later. Here's the 7.30 program's story on Dr Chris Goodnow from when he won an $80,000 award for his autoimmune research.

His father died from lymphoma, and his mum's a lupus patient, so Dr Goodnow has plenty of reasons to want to find us a cure.


You can find the transcript of the story here. (The same link will take you to the ABC's video, if you find the YouTube clip above doesn't work properly.)

Wednesday, 13 March 2013

Feeling Useful

The less I'm able to do, the more precious those few things I can do become.

There are so many days that I do nothing at all, I stay in bed or lie on the couch, that on the days when I can actually do something worthwhile, it's something to celebrate.

People who are able to go to work each day, to contribute something worthwhile to society, to have some sense of having done something, probably don't realise how awful it is to get to the end of the day and know I haven't done anything at all.

I loved my part-time ministry when I was able to do it, because I was able to feel I was doing something worthwhile, and to do something for a group of people I love dearly, and to fulfil my call to ministry. I miss that and am quite frustrated that my body won't allow me to do what I really feel I need to be doing.

So, I'm very excited about the project I have coming up - partly because I get to do something useful, and partly because it's for something that is very, very important for my lovely daughter.  I have a wedding cake to make and decorate.  I've got plenty of time, which is important, because my hands get tired easily and it's a long time since I've done anything as fiddly as making icing flowers, and because I want it to be perfect.

I'm still in the planning stage right now... not planning how to do the cake, I know how to do that.  But how will I space out the work so I don't become over-tired? Should I see if I can sit at a table for tasks I've always done standing at a bench? All that kind of thing.  As I said, I have plenty of time, and that's a good thing.  I'll post pictures of my project as I work on it, let you see how I'm going.

Tuesday, 12 March 2013

Hip... Hip... Hooray

Everything hurts today, especially my hips.

It was grocery day yesterday.

My son comes with me and pushes the shopping trolley, and I use an app from the supermarket on my phone which tells me which aisles each item on my list is in, so it's a quick trip.

Even so, by the time I left the shopping centre, I could barely walk.  My left hip was so sore, each step was agony.

So today is a day on the couch. The groceries are still on the dining table, not yet put away, and yesterday's dishes are not yet done.

I find, even knowing that it's this stupid disease, that I still feel like some kind of failure when normal, everyday activities are more than I can manage.

Limping through the shopping centre yesterday, I imagined, with dread, reaching the point of needing a walking stick. Hopefully, that's a long way off. I already feel a failure, how much worse will it be if I need help even to walk?

Monday, 11 March 2013

Business of the Week: Fight Like A Girl Club Powergear

This week's Lupus Business Directory Business of the week is Fight Like A Girl Club Powergear




Fight Like A Girl Club Powergear
Sells T-shirts and other material, promoting Fight Like A Girl Club - organisation for women battling serious illness.





Here's some of the products you can buy to support Fight Like A Girl Club



Featured Products

Fight Like a Girl Signature Bull Dog Beanie - Orange Fight Like a Girl Signature Water Bottle - Clear and Purple Fight Like a Girl Signature Contempo Tote Grocery Bag - Pink and Black
Fight Like a Girl Ink Filled Silicone Wristband - Tie Dye Fight Like a Girl Side Wrap Unisex T-Shirt - Black with Purple Pink Ribbon Breast Cancer Temporary Tattoos 6 Pack
Heck Yes, They're Fake Misses Fit T-Shirt - Pink They All Matter Rectangle Magnet Fight Like a Girl Lapel Pin - Yellow

Why not stop by, and help support them, and they help support women who need to fight like a girl, for their own lives.

Friday, 8 March 2013

Healthy Snacking

myfoodlooksfunny.com
The Federal Government's Swap It, Don't Stop It campaign is one which aims to help us become more healthy, by substituting healthier foods and activities for things we ordinarily do.  I was thinking about that and the Go For 2 and 5 campaign to get us eating two serves of fruit and five of vegetables each day.

This led me to thinking about ways to have nice, healthy snacks which feature fruit and vegetables. Can we really enjoy our food and still eat healthy?  Yes we can.

Here's some of the ideas I came up with in a quick brainstorming session:


  1. A slice of fruit bread toast (I use gluten free) topped with sliced banana, a half teaspoon of honey and a sprinkle of cinnamon.
  2. Cut a peach in half and remove the seed.  Cook in a non-stick frypan, to heat through.  Serve topped with two teaspoons of flaked almonds and half a teaspoon of honey.
  3. Cut a tomato in half. Top each half with a little low-fat cheese and your favourite herbs.  Cook in microwave until cheese is melted and tomato heated through.
  4. Cut carrot and celery sticks and serve with hommus for a dip.
  5. For something a little more dressed up, (if you have an afternoon tea), cut a sheet of puff pastry into quarters.  In the middle of each piece, place a thick slice of tomato, a thin slice of onion, a little capsicum, a couple of slices of olive, and a fresh basil leaf.  Add a little shaved parmesan, and bake in a moderate oven until pastry is puffed and crisp.
  6. Fill mushroom cups with bread crumbs, herbs, the finely diced stems of the mushrooms, a small amount of margarine and low-fat cheese, and bake in a moderate oven.
  7. Microwave a potato in its jacket, and top with baked beans, or light sour cream and chives.
  8. Freeze some pieces of fruit (eg banana, grape, berries) and eat like an ice block. (You can even put paddle pop sticks in the fruit before freezing. 
  9. Blend berries or banana with skim milk and yoghurt to make a smoothie.
  10. Traffic light skewers.  Thread skewers with pieces of watermelon, rockmelon and honey-dew melon. A really yummy snack to serve. (You can serve with a dip made of light Greek-style yoghurt mixed with a little honey.)

Wednesday, 6 March 2013

Helpful Advice

Everyone with a chronic illness gets it at some time - "helpful" advice, from someone who actually doesn't know anything about the actual illness.

It's hard to know how to respond to this advice. Usually it is well-intentioned, if ill-informed.  Of course, we can't take the advice, but it's hard to explain that without hurting people's feelings.

Some people honestly believe that just because they read something on the internet or see it on a tv, it must really be good. They think it's in our best interests if we try the great new treatment, instead of the regimes our doctors have given us.

So let's look at a few basic facts:

  • Those of us with diagnosed health conditions are being treated by doctors, often specialists who have devoted their entire careers to understanding our conditions - if there really was a better treatment out there, they would know about it.
  • All medications (including "natural" ones) have side effects. The difference with many of the "natural" therapies is that they have not been clinically tested, and the side effects are not known. The unknowns with these treatments also include - whether they actually work, whether the strength of doses is consistent, what other ingredients have been mixed with them. (Sounds rather like the risks of  using illegal drugs?)
  • Other suggestions like relaxation and improving diet might not hurt, but if they were going to fix our health conditions, we wouldn't be sick - the doctors would know, and we'd all know. Why? Because most of us use relaxation to deal with stress, and are careful of our diet anyway. If a number of us actually got better, there would be clinical research done, and whatever the solution was would become a standard treatment.
  • Conditions like lupus are life-threatening.  Those of us who have them take our treatment seriously. Interfering with our treatment could have far worse results than leaving us in excruciating pain.

Tuesday, 5 March 2013

Let's Talk Leakage

lupus.cheezburger.com
Well, sometimes, you have to think about unpleasant things.

Have you ever had issues with ahem leakage err down there? Maybe when you laugh or sneeze or lift something? The old pelvic floor just not what it used to be?

I found out today there's a whole government website dedicated to bladder and bowel incontinence. It's something I learned a lot from.

Incontinence is far more common than you might realise, and it happens at all ages, from children to the elderly. According to the site, about 4 million Australians are affected.

Some chronic conditions can make it worse. Lupus didn't get a specific mention on the continence site, but some of our medications can contribute to the problem.

Fluid tablets, blood pressure tablets, pain killers, antidepressants, and sleeping tablets can cause bladder issues.

Antidepressants, sleeping tablets, anti-inflammatory tablets, pain killers, bladder medication and fluid tablets can contribute to bowel incontinence.

Well, that includes a lot of what's in my medicine drawer - how about you?

Some of the conditions which can go with lupus (eg kidney disease, irritable bowel syndrome), along with the weight issue a number of us have, can also make things worse.

I can't be the only lupie who checks where the loo is whenever they go anywhere new.

If you do have a problem, your GP may be able to help. (A physiotherapist may also be useful, to teach you pelvic floor exercises.)  In Australia, there's also a Continence Helpline 1800 330 066.

Oh, and if you're in Australia, and, like me, always need to know where the nearest loo is, you might like the link to the Federal Government's Public Toilet Map. (I keep the link on my mobile phone.)

Source: http://www.bladderbowel.gov.au/

Monday, 4 March 2013

Business of the Week: Empowering Patients

This week's Lupus Business Directory Business of the Week is Empowering Patients LLC.



Empowering Patients is a business owned by Alison, a chronic illness survivor who aims to help others manage their chronic illnesses better.

Her business' mission statement (taken from its webiste) is as follows:


Our Mission

  • Empowering Patients DOES NOT give out medical advice!!
  • Empowering Patients does its best to help guide you to see that having a health condition is not the end of the world (The owner/operator lives with a severely complicated health condition, too).
  • Empowering Patients utilizes multiple resources and knowledge to help a patient understand what they are going through within their personal health.
  • Empowering Patients helps you to UNDERSTAND and ORGANIZE information regarding specialist doctors and testings.
  • Empowering Patients are available to accompany you to appointments and testings/procedures, as well as face to face by appointment.
  • Empowering Patients are also available to aide caregivers to learn necessities, too.
  • Empowering Patients is available online, in person, on the phone.
  • Empowering Patients does our best to follow HIPAA regulations, and privacy standards.
  • Empowering Patients DOES NOT give out medical advice!! All decisions are your own, in the end. It is always best to consult your physicians and ask them questions.

Sunday, 3 March 2013

Mornings

lupus.cheezburger.com
I used to be a morning person. Really I did. In fact, up until a couple of weeks ago, mornings were the best time of day for me to get things done. It was when I had energy.

But then lupus fatigue caught up with me again.  My afternoon nap started getting earlier and longer. Until eventually, I was going back to bed pretty much straight after breakfast.

In fact, the last two Sundays, I've missed church, because I've just been unable to get out of bed. I've just been exhausted. Today, I didn't get up for breakfast until lunchtime, and then moved to the couch to lie down.

Hopefully, this will pass in time. Most things with lupus do.  It comes in waves. While I wait for it to pass, I think I'll have a nap.

Saturday, 2 March 2013

Running Away

lupus.cheezburger.com
At my weight loss group this week, we were talking about stress eating, and more constructive ways to deal with stress.

Of course, the best way to deal with stress, is to solve the problem that is causing stress. But that isn't always possible.  Everyone in our group was able to identify sources of stress that were constant, and had no solution.  As someone in the group said to me, "You can't leave your body behind."

Whether it's your own or a family member's chronic illness, or another problem that doesn't have an easy or practical solution, there's often causes of stress that can't be fixed.

It's no wonder that many people, like me, use food as a means of dealing with stress - some of us binge eat, others don't eat enough. In many ways, it's not as bad as using dangerous drugs to cope, but it's still not healthy, and it can still have fatal consequences. (Obesity-related illness is a major killer, and, let's face it, if you're reading this site you've probably got enough health problems without adding any more.)

If it's not possible to deal with the cause of stress, to fix the problem, then it seems the only way to deal with it is to deal with the results. Instead of having stress hormones giving us fight or flight messages our bodies can't do anything with, we need to encourage our bodies to produce the kinds of hormones that tell us everything's fine and we don't need to worry.

We can help ourselves to feel happier, more content (and less likely to feel on edge and to eat to calm that feeling).

For many people, exercise helps with this.  That's not always an option for lupus patients.  Doing what exercise we are able is good for a number of reasons, and regulating those stress hormones is only one of them. It also makes a difference to joint mobility and overall health.

Sometimes, the way to deal with the stressors that we can't change, is to take a tip from small children - to announce that we're just going to "run away".  To simply take a break from the cause of the stress.

We can't take a holiday from our bodies, but we can take our minds away from our stresses for a while.

Here's some suggestions for "running away" from stress:

  • Read a good book.  Slip into a fantasy world, and forget reality for a while.  (If money for buying books is a problem, remember council libraries are free.)
  • Watch a movie or a play.
  • Try writing fiction, create your own fantasy world.
  • Arts and crafts can give you something to focus on, where you can have a sense of achievement, and create something worthwhile. 
  • Pets can give you something to focus on beyond your own stressors.
  • Meditation and prayer give the opportunity to let go of the stress, to relax, to feel that you are not carrying a burden alone.
  • Put on some favourite music and dance. 
  • Play an instrument.
  • Have coffee with a friend. (It's just as good having coffee at home as it is to go out to an expensive coffee shop.)
Do all of these things sound obvious?  Yet, it's easy to go on and on for weeks even months without doing any of these things, or anything else that makes you happy, takes you out of yourself, or gives you some sense of happiness or achievement.

It's possible to have stress just build up and build up and build up, to get depressed, or to engage in self-destructive behaviours, like binge eating, to try to deal with how we feel. It's much better to try to release the pressure in some healthier ways.