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.


While I feel well, part 3

I'm continuing my project, while I'm feeling especially well, to get my body in the best possible shape to handle the next flare. (Because all lupies know, feeling well is a temporary state and there'll always be another flare at an unknown future time.)

So, step one was exercise.  I'm now exercising most days.  (Not every day,  I won't claim to be that virtuous, but most days.) I either do the the Lupus Exercise video exercise routine, or I go for a walk.  Some days, I even manage both.  And some days I over-do it and end up going to bed at 3pm.  But I am exercising regularly.

Step two was to bring my vegetable intake up to the five serves a day level, recommended in the Australian Guide to Healthy Eating. I've got that under control, again most days. I've done it in the simplest possible way.  I buy pre-packed bags of salad, and divide them four ways into containers for lunches with a little meat or boiled eggs, and that's four days lunches.  A large stock pot of vegetables, with some canned tomatoes, stock and rice and lentils added makes up a very good vegetable soup - and again I can prepare several days' serves at once.  A salad for lunch, and soup with dinner brings up my vegetable intake nicely.

Now, I'm ready to focus on something new.  I'm looking at the two and a half milk serves the Guide to Healthy Eating recommends for me. Being lactose intolerant, I don't have regular milk, but use lactose-free milk instead. (That is milk, with lactase enzyme added to break down the lactose.)  Non-dairy substitutes are available for people who don't like animal products or can't handle the protein in milk, but it's best to go for calcium-fortified versions dairy substitutes.

At the moment, I have milk with my breakfast cereal.  I really need to intentionally have a second serve of milk, cheese or yoghurt at another time of day as well. I'm thinking of a few options: cheese added to my lunch salad, or a warm milk before bed, or perhaps yoghurt and fruit for dessert.

There was a time when I would have created an exciting, varied, menu for my meals throughout the week.  I really don't have the energy for that now.  It's just easier to have a routine that works for most days, and then I only have to plan occasionally.

So that's my task for the next few days, to intentionally add a little more dairy into my diet.

How about the rest of you lovely lupies out there?  When you're able, what do you do to try to improve your health? Do you find it easier to have a routine that's the same most days, or do you like variety?

Would you like to become a patron (supporter) of this blog?  Find details of how at: https://www.patreon.com/IrisCarden.

Wednesday, 24 May 2017

While I feel well, part 2

So, I'm exercising almost every day.

The next step in improving my overall health is looking at my diet.

So I have been looking at the Australian Guide to Healthy Eating. The diagram below gives the overview of what a healthy diet should look like.

source: www.eatforhealth.gov.au
The guide gives a breakdown of actual number of serves recommended from each food group, for people on the basis of sex and age.

Looking at it, there are a lot of changes I need to make.  The biggest will be to get five serves of vegetables into my diet each day.  But a few weeks ago, getting exercise into every day seemed a major challenge, so I'll do this the same way - work up to it.  I'm going to look for ways to include more vegetables in my diet day by day, until it eventually becomes a habit.

Once I get that under control, I'll start looking at how well I balance the other food groups.

Become  a patron of this blog for as little as $1 a month: www.patreon.com/IrisCarden.

Saturday, 20 May 2017

While I Feel Well

I mentioned my visit with my rheumatologist the other day, talking about costs.

I didn't share my good news.  Not only have I been feeling well most of the time lately, but my test results bear it out.  There's a very small amount of gut inflammation, and my liver function's not perfect, but all of my lupus markers are negative.

So I have a plan to make the most of lupus being inactive.  I'm going to work on my overall health as much as possible to be stronger and better able to cope when the next flare hits.

The first step is I'm exercising every day.  It took a while to build up to it, but I'm doing the Care for Lupus Lupus Exercise Program every day.  I'm also going for short walks with the dog on days when it doesn't rain.

Next, I'm going to try to get back in control of my diet.