Friday, 3 November 2017

Survival Vs Achieving Things

Lupus life lesson #3, On a bad day, surviving is all you need to do.After a couple of weeks of having no energy, and lying exhausted and in pain on the couch, I'm
starting to want to do things again.

I've been going for walks again.  I've learned my lesson - I'm not going for hour long walks as I did a while back - which was great until I crashed.  Now, I'm taking a couple of ten minute walks each day - breaking things down and trying not to overdo it.

Today, I've dug out my Calorie King app and started to track what I eat again. 

I'm getting restless, wanting to do more than just sit mindlessly in front of the television.

I'm starting to care again. 

That means one thing.  I've been having a couple of good days. (Hopefully, it could be the start of a good week, month, dare I hope year?)

The difference between a good day and a bad day is simple.  On a bad day, I have only one aim - survive. (On some bad days I don't care if I even achieve that.)  Sometimes I feel a little frustrated I don't have the energy to do anything, but most of the time, I don't even have the energy for that.

On a good day, I feel like doing worthwhile things.  I have energy, and my pain levels are manageable, and I remember that I'm more than just a diseased lump lying on the couch.

I used to feel bad about all I didn't achieve, once I started to feel better. But I've realised that's just a waste of precious energy.

On bad days, all I have to do is survive.

On good days, I can do practically anything, as long as I'm careful with the energy I have.

Thursday, 2 November 2017

Great Gifts for the Lupie in your Life

Every lupie needs The LupusEncyclopaedia, by Dr Donald
Thomas.
I've just about finished my Christmas gift shopping. (Yes, I'm one of those people.) I don't like going
to shopping centres at Christmas time, when they're crowded and all the kids in the area are on school holidays, and the air conditioning just doesn't seem to be able to cool that number of people. So I get my Christmas stuff out of the way earlier in the year, and just shop on line from late November until about mid-January.

Wrapping presents made me think about the best gifts for lupies.  Here's my suggestions, from a variety of price ranges, of things most lupies should have.


  • The Shade UV light sensor. This could save a lupie's life. It helps track the amount of sunlight she/he is exposed to, and for many of us, sunlight is a very dangerous thing.
  • The Lupus Encyclopaedia, by Dr Donald Thomas, from Johns Hopkins University Press.  For all the general information every lupie needs.  (For specific, personal advice, always speak to your own rheumatologist.  For everything else, Dr Thomas is a great source of information.)
  • A heat pack.  Everyone needs a heat pack or a hot water bottle for the occasional pain that just won't go away.
  • A Tens machine.  This is the machine the physiotherapist uses to help control pain.  Electrodes
    A tens machine, this large type,
    or a small portable one is great
    for temporary pain control.
    are attached to the skin, and gentle electrical pulses help ease pain.  (I have two of these: a big one that also has foot pads to rest my feet on while sitting, and a little portable one to carry with me.)

  • A couple of ready-made home-cooked meals to keep in the freezer for a bad day.
  • A soft blanket, or Egyptian cotton sheets. When you spend a lot of time in bed, you appreciate nice, comfortable bedding.
  • Cute and comfortable pyjamas - for the same reason as comfortable bedding.
  • A massage. (Or a massage chair - if you have the money - or a massage mat that goes on the bed.)
  • A Shade UV light sensor gives the
    freedom to know how long it is safe to
    stay outside.



  • A pill sorter, the type that has three or four sections for each day of the week, and each day's pills can be removed, so it's possible to take enough pills for a day out, without taking the whole week's worth.
  • Something from the Lupus Business Directory, where your purchase will help out someone with a chronic illness, while giving you a unique gift.

Tuesday, 5 September 2017

Review: Shade UV Light Sensor

The Shade UV light sensor.  It may not be
the most attractive piece of jewellery
you will ever wear, but I'm pretty sure it will
be your favourite - because it can help
prevent lupus flares.
There are lots of different things that can trigger a lupus flare.  For many, probably most, of us ultraviolet light is one of those things.

Sadly, ultraviolet light is one of those things it's almost impossible to avoid all together.

Biophysicist Emmanuel Dumont, PhD has developed a gadget that helps us control the amount of UV light we're exposed to.

(I've told you before my heroes wear lab coats.  Dr Dumont, and his team are definitely heroes for lupus patients.)

The Shade is a sensor which detects and measures the amount of ultraviolet light we're exposed to each day.

You simply download the mobile phone app, pair the device up with your mobile phone, and attach the Shade to your clothes.

It's held on with a magnet, so it won't leave pin damage in your clothes.  And this is a strong magnet, so even when a small grandchild jumped at me for a hug, it stayed firmly in place.

Each day, the phone app asks how you are feeling.  After a while you can look at your history - how much sunlight exposure you've had each day, along with how you felt, to work out your personal limit.  (Everyone's limit is different. Some lupies can handle more UV than others.)

Once your limit is set, the device will alert you when you've received 20% of your daily limit, or 40%, 60%, 80% and 100%.

As lupus changes all the time, you can change your limit if you notice the relationship between daily exposure and how you are feeling changes.

If you tell the device the SPF of your sunblock, it will take that into account in measuring your UV exposure.

The phone app gives you the option to talk to the Shade team when you have questions of problems. But really, the device and phone app are so easy to use, you probably won't need it.

You can find out more about the Shade, and how it was developed (and you can buy one) here https://www.wearshade.com/about.

The Shade won't replace your hat, sunblock and everything else you do to protect yourself from too much sunlight.  But it will give you the freedom to know how much time you can safely spend outside, and a fair warning of when you are approaching your limit.

After a week of using it, I am totally in love with it.  It's not the most attractive piece of jewellery I wear, but it's definitely the most useful. It's a great feeling to know that I can safely enjoy being out in the garden for a while, and know I'm not going to overdo my sun exposure.

If I had a magic wand or multi millions of dollars, I'd provide one for every lupie on the planet. As I don't have the money or the wand, all I can do is encourage you to acquire one for yourself.

Now we just need something to help us control everything else that can trigger a flare....



Disclosure: this is not a paid post, however, I was provided with the device free of charge to enable the review.


Saturday, 12 August 2017

Catching Up

Text: I have lupus! Not crazy, not lazy, just sick sore and tired.Do you know some people manage to hold down a full time job, manage their house and garden and still have time for hobbies?

I vaguely remember achieving something of the kind for a little while many years ago.

Now I don't have a job, someone does the bulk of my cleaning, other people mow my lawn, and I'm still struggling.

But I do have times I'm better at the few things I have left to do.

A while ago, I was posting about things I was doing while I was well.  You might have noticed that stopped, as I spent a week or two passed out on the couch.  Just yesterday, I suddenly found myself with energy again.

In the midst of it I had a meltdown about my role in Toastmasters being too much.  (I had an agenda to prepare.  Yeah, that's it, that's all it was. My body was sore and exhausted and my brain wasn't functioning. I couldn't cope.)

Of course, now, having taken a couple of weeks out from life, there's been so many weeds in the garden that the lawnmower guys whipper snipped my miniature roses.  (Yes, I'm back to weeding regularly as I carefully nurse them back to life.) In that same time my kitchen benches disappeared, the arts and crafts studio looks like it's been hit by a bomb, and the sewing work I had out on the studio table has been thoroughly lost in cat hair.

So once again, I'm back to trying to organise and repair all kinds of little bits and pieces of my life, while trying not to push myself to the point of ending back up on the couch for another couple of weeks.

My story's not unique, or even unusual.  Ask anyone with a chronic illness.  This seesaw between being too sick, and then catching up, is just the life we live.

Saturday, 5 August 2017

Realistic Pain Scale

Pain scale.
Source: https://openclipart.org/detail/218053/pain-scale
Do you ever find the pain scale used by medical practitioners is a little inadequate to describe what you are actually experiencing?

Pain Scale used by doctors and nurses:

"On a scale of zero to ten, with zero being no pain and ten being the worst pain imaginable, tell me what level of pain you are feeling now."

Realistic Pain Scale for Lupies:


  • Coma/general anaesthetic (How else could we have no pain?)
  • It's good.  (Pain level is low enough that I can convince everyone that I'm not in pain.)
  • I'm fine. (I can convince people who don't know me well I'm not in pain.)
  • It's OK. (I am still basically functional, but there's a limit to the function.)
  • It hurts a bit. (I want to scream, but I'm gritting my teeth and continuing on.)
  • Distracting. (I can't concentrate on anything, because the pain is overwhelming everything else.)
  • Exploding. (Intense pain in just one place.  Like a burst appendix, or childbirth with no pain relief and a great deal of cutting.)
  • Drawn and quartered. (Intense pain in multiple places.)
  • Hit by a bus. (Intense pain in all places.)
  • Dear God, please just let me die now! (Unbearable pain, and if you show me your smiley and grumpy face chart, I will hit you with it.)

Wednesday, 2 August 2017

Methotrexate for Lupus vs Methotrexate for Cancer

I had an unexpected phone call the other day.

Here's the background.  If you go back to this post from 2015, you will know that through the Queensland Government's community care program, I have someone come for an hour and a half each fortnight to help with the major cleaning stuff around the home.

The lovely lady who comes to help out is Karen.  She does the heavy stuff - vacuuming, bathroom cleaning, changing sheets, etc.  She also brings treats for my dog (not in her job description), and is just  a delight to have around. We all look forward to her visit.

My strange phone call was from a nurse who works for the agency that employs Karen.  The nurse had looked over my file and realised I was taking methotrexate.

The nurse was concerned for Karen's safety - whether she should have been taking care with any potential exposure to cytotoxic material.  (Methotrexate is a chemotherapy drug - in hospitals, the drug, and any body fluids of patients treated with it have to be handled with special gloves.)

So I had to explain to a nurse the difference between methotrexate used for cancer treatment in a hospital, and used for lupus treatment at home.

Cancer patients take methotrexate in high doses over short periods of time. Those high doses mean that while they are taking it, their body fluids still carry lots of poison from the drug.

Lupus patients have methotrexate in much lower doses, and we have it only once per week, and take it for years and years.  I take my methotrexate on Sunday night, by Friday when Karen comes to clean, it is well and truly out of my system.  Even on Sunday night, and through Monday, while it is still in my system, the dose is so low, there's really no risk to someone whose only exposure is cleaning my bathroom.

Methotrexate can be dangerous, and I am careful with it.  I'm careful to take exactly the dose prescribed and always on the same night of the week. (People have died from taking methotrexate incorrectly, always take it exactly as your rheumatologist says to.) If I'm having a bad day and my son is sorting out my pills, I still deal with the methotrexate bottle, and don't have him handle the tablets.

The way we take it for lupus, however, is much safer than the way it is used for cancer treatment.



Sunday, 18 June 2017

Health Insurance

I got the quote to get my tooth fixed, $2700.  Then I went to my health insurance company to find out how much was covered: none. That's major dental, and I'm only covered for basic dental.

Guess what?  It looks like I'm just going to keep having an empty space in my mouth, and keep getting food stuck in my gum until I learn how to eat without using that part of my mouth.

In a sense, it's my own fault I don't have a health insurance that covers this.  I recently gave up my hospital cover, deciding to trust the public system, and just kept basic extras cover.  The reason for this choice was simple:  I just couldn't afford it, and the public system has always been there when I needed it.  (A couple of times I've been rushed to an emergency department in severe pain and had surgery within 24 hours - for service like that, I'm happy to wait my turn when whatever I need isn't urgent.) When I've been able to afford hospital cover, I've opted for the private system to leave space for someone who needed the public system.  I've just had to come to the decision that I can't afford the private system anymore.  (Isn't it wonderful to be in Australia, where we have that choice?)

I could have chosen eat less, or sell my car, or give up my pets, to keep the hospital cover, but I chose to sacrifice the insurance - however with hospital insurance, went the "major dental".

Extras cover, I could keep for about $30 a month.  Now, I am trying to decide if it really is necessary.  With a chronic illness, I can get some ancillary treatment on a teamcare program managed by my doctor.  I can get up to five free visits to a physiotherapist, dietician, psychologist or podiatrist each year.  That doesn't cover optometrists, and the previous chronic illness dental program has been axed.

I've checked, there is a government program for glasses, but it doesn't cover graduated lenses.  And there is a community dental program.

If I just saved the money I've been paying in extras cover, I might just about cover the difference between what's available publicly and what I have now anyway.

So the question is: is health insurance worth it at all, particularly for a middle-aged woman, with a chronic illness, living on a low income?

A great place to compare health insurance policies, without having anyone try to make money from you is the government comparison site: http://www.privatehealth.gov.au/.  After looking through, I can't find any that I can afford that would do everything I need.

So, I've given up hospital cover, and while I'm thinking about it a bit longer, I'm leaning toward giving up extras cover as well.

If I were designing a health insurance policy for someone in my position (middle-aged woman, with chronic health issues, living on a disability support pension):  it would include, all dental (forget major/minor - just teeth stuff done by a qualified person up to a set limit); all the usual things that are possible with ageing and with chronic illness (so everything from hearts to joints to brains); it would cover physiotherapy, psychology, eyes, dietetics and pharmacy.  It would not cover pregnancy, assisted reproduction and random alternative therapies. There seem to be lots of cheaper policies aimed to get young people into health insurance, but there don't seem to be any affordable ones for people at my life stage.

Sunday, 11 June 2017

It's OK to be Unreliable

Image pink rose. Text Lupus life lesson #2. It's OK to be unreliable.One of the things I really hate about lupus is that I am unreliable.

It's not just me.  When I asked what other lupies had learned from lupus, there were a couple of people who responded about being unreliable.

It's not just that we feel bad about being unreliable, but that we also take on how others feel about our being unreliable.

We feel guilty and frustrated because we have to cancel plans.

Our friends and family may get frustrated or upset with us for constantly cancelling plans.  Some of them even give up making plans with us.

Their response makes us feel even more guilty and frustrated.

If they stop making plans with us, it also helps make us feel more isolated.

It's time for a line from my Granddaughter's favourite movie: "Let it go."  (Actually, my Granddaughter thinks the movie is named, "Let it Go", but that's a different story.)

We're going to be unreliable. We're going to plan for things and then be too sick to do them.  But that's no reason to stop planning things.  Beating ourselves up isn't going to change anything.  So we just have to accept that we will miss out on some things, but if we keep making plans, we will get to enjoy actually doing some of them.

We are responsible for how we react to our own being unreliable.  We are not responsible for how other people react to it.  Their thoughts, feelings, and actions are their own.  We don't control them. If they can't come to terms with a friend or family member being sick, that's their issue.

Never Take a Good Day for Granted

Image pink rose. Text Lupus life lesson #1 Never take a good day for granted.It's confession time.  I may not be quite as well as I've been telling you (and myself) lately.  With my effort at eating properly and exercising almost daily,  I don't seem to have the energy to do much else.  I'm not writing much, and I'm sleeping 12 to 14 hours a night.

What I have been feeling is less pain.  And less pain is good, extremely good.

So while I can I'm going to make the most of the low pain days.

I'm going to keep exercising, and I'm going to keep being a careful to try to eat properly.

You see, lupus has taught me a lot.  One of those things is that a good day is a rare and precious thing.  It should never be taken for granted.

So while the good days last, even if I end up going to bed at 5pm, I'm going to continue trying to get my health into the best possible state before my next flare.

I recently asked on Facebook what lessons other lupies had learned from lupus, a lot are things I have also learned. I'm going to share those over the next few days. Lupus has taught us all a great deal - mostly things none of us ever wanted to know.






Tuesday, 30 May 2017

Doing it all wrong

Given that I've been writing this blog for more than five years,  I recently found it very disappointing to discover I'd been doing it all wrong.

I frequently get emails from people who tell me that if I hire them, they could improve my blog significantly,  one today made it very clear that it didn't just need improvement, it was a total disaster.

Here's what my correspondent said:

Dear sometimesitislupus.com Team,

Have you ever checked for sometimesitislupus.com position in Search Engine Result Pages?  If not do it TODAY! Being a contemplating Digital Marketing professional, I found some major issues with your website which are the sole causes for making hurdle to achieve your desired business goal. 

I found some major issues with your website:

·         Poor visibility Of Important and competitive keywords in SERPs

·         Stumpy image optimization

·         Unfocussed and low quality website content

·         Wrong steps followed for Social Media campaign


Our ethical Digital Marketing services with an excellent team of experts are here to assist your business and at the same time, we will fix all the above issues. Having years of experience and incorporate with latest techniques, our experts will deliver you a great result despite of Google’s latest Algorithm Updates such as Penguin and Panda.

If you want, we can send you more details regarding your present website status; we would be glad to share PRE SEO REPORT or WEBSITE ANALYSIS REPORT of sometimesitislupus.com Without any Cost.

Being at the top left of Google (Top 10 organic positions) is the best thing we can do for your company's website traffic and online reputation and there is a saying “More Traffic Leads Better Business”.  You will be happy to know that, our team is willing to guarantee you 1st page Google ranking for most of your targeted keywords in our six months ongoing campaigning period. 

If you are getting satisfaction with these proposals for your business objective, feel free to email me, or can provide me with your phone number and also the best time to call you. I am also available for online meeting to present you this website audit report.

I look forward to hearing from you.

Warm Regards,

Garry (SURNAME DELETED)

Sales Advisor

PSI:  I am not spamming. I have studied your website and believe I can help with your business promotion. If you still want us to not contact you, you can ignore this email or ask to remove and I will not contact again.

PS II: I found your site using Google search and after having a look over your website I recommend you to implement future technologies such as HTML5 and Responsive Design to make your site more accessible in mobile phone, tablets, desktop etc.

Clearly, as this expert points out, I just don't know what I'm doing.  And the mobile version of the site must not have worked for him.  Garry didn't name the organisation he was a sales adviser for. In fact his business doesn't seem to have a name at all.

What could I possibly say to this?  (Frequent readers would know I just couldn't leave this alone.) So this is what I said:

Hello Garry,

Can I make a suggestion?  When you want to convince someone you’ve read their blog, you might want to mention specifics from that, instead of generalisations?  Alternately, you could at least notice when a blog is in fact a personal blog, and neither a business, nor a company. You may even want to acquaint yourself with the “about” page that clarifies that the blog is written by one person, not a team. (Most of the offers I receive for SEO at least get that last part right.)

Oh, could I also suggest that you would appear more professional if you had a business email address, rather than a gmail address?

As a matter of note, my blog's so poorly visible, it’s amazing that you, who are clearly not a part of the niche I write for, even found it.

No, I will not be hiring you. I wish you well in your attempts to gain some employment.  

Regards
Iris Carden
www.sometimesitislupus.com

Was I too harsh? Possibly.

But do you know what?  Even feeling relatively well, at the end of the day I'm tired and in pain, and not in the mood to suffer fools gladly.  I've discovered that ignoring people soliciting for SEO (that's search engine optimisation) doesn't stop them emailing.

And if you're with Garry and find that my images are stumpy and my content is unfocussed and of poor quality, that's OK.  I wish you well as you go and find what you're actually looking for elsewhere on this big world wide web.

If you actually find that me posting random things about my struggles living with chronic illness helps you feel less alone in your struggle with chronic illness, then you are the person I'm writing for.  Yours is the opinion that actually matters.