Lupus is Sexy Too

This email I received was just so awesome in so many ways, I'm just going to give reprint the whole thing:

Hello!

My name is Genevieve Flati and I am the creator/director of a show called "(Wo)men Rule Broadway." The show is a musical theater review where women perform roles that were originally written for men. But, we perform them as women.The show went up last year, and we were super successful. We sold out every show, with a high demand for more. We had Tara Strong and Eg Daily as our featured celebrity guest performers. (Powerpuff girls, Rugrats, Harley Quinn, etc.)

The concept came from a lifetime of being in entertainment, and seeing that most of the "good" roles went to men, while the women were stuck with the boring songs, side romantic plots, and overall uselessness (except to be objectified and overly sexualized). There ARE amazing roles that express all parts of human nature (Alexander Hamilton, The Phantom, Elder Price, etc), and even though I am a wooooommmaaannnn, I am still a fully complex human with more to me than "O look at that man! I hope he notices me and rescues me from my predicament!"

I wanted to give opportunities to women that have been previously denied because of their gender and/or race. I was tired of waiting around, hoping that someone in a position of power would recognize all of this untapped talent in these women and POC. Eventually, I realized that I was someone, and decided to put myself in a position of power, so I could do just that for the women around me.

In April of 2017 I had a huge medical attack and was diagnosed with lupus. It's an autoimmune disease where your immune system is overactive and attacks your organs. Essentially, your body is trying to kill itself.

As there is no cure, they battle it by putting you on chemo. I have been on weekly chemo treatments every Friday since April, and still have a ways to go. (CHEMO FRIDAYS ARE EVERYBODY'S FAVORITE DAY, YO.)

I was unsure of what I wanted to do about this for a long time. I only told a few friends and family. But, as I am a sociopath, I was like.... "Ok, so what am I gonna do with this?" The answer, of course is... A FREAKING SHOW! YAS KWEEEEN!

So, my Co-Creator and I discussed it for a while, and I said that I wanted to do another Women Rule Broadway and we will donate a portion of our proceeds to a lupus research foundation. (Last year we donated to The Downtown Women's Center)

SO THIS YEAR WE ARE DOING...

(Wo)men Rule Broadway Presents: Lupus is Sexy Too!

https://www.youtube.com/watch?v=-PpTyEdgsRQ&t=1s

Only this time, WE ARE ADDING MEN INTO THE CAST because feminism is about equality for everybody, and men have their own stereotypes/societal pressures to deal with as well.

Please please please help us spread the word about our Kickstarter and our show. We want to fight racial and gender stereotypes in Hollywood, society, and the media. We want to raise money for a disease that many people (including Selena Gomez, Nick Cannon, Michael Jackson, Lady Gaga, and more!)

So we are doing: (Wo)men Rule Broadway Presents: Lupus is Sexy Too!

The name comes from the fact that when you tell people that you are on chemo, they usually get all hot and bothered and say:

Them:  "Oh my god, you are so brave and wonderful for being on chemotherapy..."

                          *heavy breathing* 

              "If you don't mind..."

                         *they stroke your hair, all turned on by your tragedy* 

            "what kind of cancer do you have?"

Me: "O, I don't have cancer, I have lupus, but I'm still on chemo-"

Them: *OUTRAGED* "YOu DoOnt have CANCER?!?! Who cares about your NONCanCER disease!?!?! GET OUT OF HERE YOU HOBO!"

SOOOOOOO....

I want people to know that LUPUS IS SEXY TOO. We want your pitty sex too. Give it to us.

OH, and, I want to help make the world a better, less racist, less sexist place for everybody. That would be great too.

I hope you can help me get the word out about our show!

Thank you for your time!

Genevieve Flati

What can I add to all of that except - is there some wealthy person out there who would sponsor my trip to America to review this?  No? Never mind.  I'll just be happy knowing this is going on...

Trying Again - With Help This Time

Once more I'm feeling fairly well, and want to get active.

The trouble is, that hasn't ended well for me before.

You see, I feel good, so I do things. That goes well, so I do more.  I'm still feeling OK, so I do more.  Then I crash in a heap, and it takes me ages (weeks or even months) to recover.

This time, I'm going to be smart.  I'm getting professional help.

I'm seeing an exercise physiologist.

To start with I'm walking the dog every day (15 minute morning walk), and doing another exercise on alternate days.  At the moment, she has me using a beginners tai chi lesson on you tube, and exercising in the pool. I'm not doing the full hydrotherapy session I used to do, just a few minutes of walking in the pool, a couple of push-ups on the side, and a couple of arm raises and leg raises.

So the program is one day of just walking, then one day of walking plus tai chi, one day of walking, then one day of walking plus the pool.  I have to be careful to do the tai chi or pool only on days I don't already have something else on.  So days I do groceries, or go to church or Toastmasters, I only do the walking and no other exercise.

It's early days yet.  So far it's going well.  I feel good.

However,  I'm starting to get a bit bored, and restless, as I do when I feel well and am not constantly doing things.

My big challenge is to keep within the boundaries set for me.  Hopefully, I will keep feeling well, and keep having to deal with that challenge, for a long time.

Otherwise, I'll crash and try again when I recover.  (And I know I won't be the only lupie doing that.)

Survival Vs Achieving Things

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.

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.

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.


Update: More on the Shade Sensor

Catching Up

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.

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.)

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.

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.

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

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.

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.

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.

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.

Glad To Be Australian

I had an interesting conversation with my rheumatologist yesterday about the cost of managing lupus.

In Australia, as a pensioner, I pay about $6 for my methotrexate.  That's what it costs under the Pharmaceutical Benefits Scheme.  When I've paid a certain amount on medications for the year, they're free from then on.  Overall, including what I pay, and what the government pays, the methotrexate actually costs about $120, because it's a drug that's been around a long time and it's quite cheap.

Dr K asked me to guess what it cost in the USA.  I guessed about $2000, because the US is notorious for the high cost of healthcare. I was way off.
It's about $5,500. (Health insurance companies would pay some of that, if the patient has health insurance.) The government there isn't involved in purchasing drugs, and doesn't negotiate the price.

I'm sure America's a much better country to be a drug company - but as a patient I'm really glad I live here.

So my rheumatologist tells me that American patients can find it cheaper to fly here to see a specialist and buy medications, than to have their treatment there. (If you're not covered by the PBS, that methotrexate would be $120 here.)

I'm finding myself wondering how to start a drug smuggling ring - to smuggle methotrexate, prednisone, plaquenil, pyralin, all the usual lupus meds to people who really need them.

World Lupus Day 2017

It's World Lupus Day lovely lupies!

Since last WLD, some lupies have fallen in the battle, and some newly-diagnosed lupies have joined the fight.

One day this disease will be beaten. But until then, we will be here for each other. We will offer whatever support we can.  We will share whatever resources we have access to, and we will get through this together.

To mark World Lupus Day, the Lupus Knows No Boundaries e-report is now available on the World Lupus Day website.

(While you're on the World Lupus Day website, you might sign the petition for the World Health Organisation to give more attention to lupus.)

And on a much smaller scale, here on Sometimes, it is Lupus, our new resource for newly diagnosed lupies has just been published. A big thank-you to the lupies who contributed their advice to that.

Best Lupus Blogs of 2017

Sometimes, it is Lupus has made it to Healthline's list of the Best Lupus Blogs of the Year.

You've already found this blog, want to see what else is on on the list?  Here's the link: http://www.healthline.com/health/lupus/best-blogs-of-the-year#2




Healthline

Tomorrow is World Lupus Day, so this is your last chance to be part of the Sometimes, it is Lupus World Lupus Day event.  Email iris@sometimesitislupus.com with you first name, country, and what you would say to someone newly diagnosed with lupus. Tomorrow, I will be publishing a new resource for people newly diagnosed.

Want to support this blog? You can become a patron for $1 a month.  (Patrons receive a free electronic copy of each new book I produce.)  Become a patron here: https://www.patreon.com/IrisCarden.

Lavender Lunch

The Autoimmune Research and Resource Centre is holding a Lavender Lunch

for World Lupus Day in Lambton, New South Wales.

For more information email www.autoimmune.org.au 

The Tooth, the Hole Tooth, and Nothing...

It should have been a good thing. My son and I went to the movies to see the new Guardians of the Galaxy movie.  It was great - especially Baby Groot.

What was not great was the popcorn - I bit on a hard an unpopped corn kernel.  I felt a filling in my tooth crack.  Because it was a busy week, I thought dealing with it could wait.

Two days later, the filling simply fell out. So I called the dentist.

It wasn't good news.  It wasn't just the filling that cracked, it was the whole tooth, down to the bone.  After a couple of needles, and lot of pushing and pulling it was good-bye tooth.

So now I'm recovering with a stitch in my mouth, and apparently my options going forward are to leave a gap or get an implant.  In the back of my mind I see dollar signs flying around.

The lesson?  I'm never eating popcorn in the dark again.

Look after your teeth lovely lupies.  We have enough health issues without dental issues as well.

I've received a few tips for the World Lupus Day project, would love to have lots more.

Just email me, iris@sometimeitislupus.com, with your name, country, and what you would say to someone newly diagnosed with lupus. I'll put everyone's comments in together for a resource for people newly diagnosed.

Want to support this blog? (And maybe help with my tooth situation?)  You can become a sponsor for a dollar a month. www.patreon.com/IrisCarden

Some Days

Some days things don't go right. Some days, I can't even go for a blood test and have it go right.

This story begins almost a year ago, when my rheumatologist wrote out the pathology requests for tests to do before I see him again this month.

It should be straightforward - a set of blood tests that require fasting, and a poo test.

Fast forward about six months, and I went to the doctors for a fresh prescription. My usual gp was away, and the one I saw decided I should probably have a cholesterol test.  She said not to worry about an extra trip to pathology. She said not to worry, save it until May when I was doing my other tests.

So today came. I skipped breakfast, just drank warm water to try to get things moving.

Normally, I have breakfast, and need to poo almost as soon as I've finished.

No breakfast, no poo.

So, it was 11.20am before I could go to the pathology collection place. Then I had to wait my turn.  It was 11.50am before I got in.

First issue.  Medicare rules don't allow pathology orders from two doctors on the same day.  So I said skip the one from the fill-in GP, just do my specialist's ones.

Second issue: Have I been fasting? Yes, I have.

When did I last eat? Well, I went to bed about 7pm, so it was a bit before that.

She can't do my tests.

Why?

I've fasted too long. All the results will be messed up.  I can't fast more than 16 hours.

What am I doing tomorrow?

Seeing my GP.

What time? 8.15am. I could do the test after that.

Could I go to bed later than 7pm?  Not if I want to get up in the morning.

Then I'd do the test before the doctor. I can stop in at 8am and do my blood tests on the way there, she'll make sure I'm the first patient through so I can get to the doctor in time.

All of which means I didn't get to eat until lunchtime today, and tomorrow's not shaping up to give me the chance to eat before lunchtime either.

Want to be part of the World Lupus Day activity on Sometimes, it is Lupus?  Email iris@sometimesitislupus.com with your first name, your country, and the advice you would give someone who has just been diagnosed with lupus.  I'll put everyone's advice together.

Flu Season's Coming

Yesterday was ANZAC Day, which means a few things. (No, I'm not talking about the ANZACs or the families who would have preferred their sons and husbands to be coming home, rather than becoming legends.)

It means we're about midway through autumn, so the weather is about to get colder.

It also means it's time to get a flu shot.

The flu shot won't give you protection against every sniff and sniffle going around, but it will give you some resistance to the most kill-ey versions of the flu that are expected to come around this flu season.

For lupus patients (and patients with other immune-compromising diseases) can go to our doctors to get the flu vaccine for free, under the National Immunisation Program.

It's worth asking family to consider getting a flu shot as well.  Them being protected also helps us to be protected.  For family members who aren't covered by the Program, it's possible to get a flu shot fairly inexpensively from a pharmacy or a doctor's surgery.

Want to be part of the World Lupus Day activity on Sometimes, it is Lupus? Email iris@sometimesitislupus.com your first name, your country and the advice you would give someone newly diagnosed with lupus.

I'll put all of the advice together in a resource to be published on this blog on World Lupus Day, 10 May 2017.

Would you give $1 a month to support this blog?  You can become a patron for as little as $1 a month (up to any amount you choose.)  As a thank-you gift, I'll send you a free electronic copy of each new book I release.

www.patreon.com/IrisCarden

When Lupus is Unbearable

Trigger warning: discussion of suicide.


Lupus is a horrible disease, which makes life thoroughly miserable at times.

So when I found out that a lovely lupie I've had a fair bit of online contact with  chose to end her life recently, I fully understood that choice. Lupus caused her death, even though that's not what will be listed on the death certificate.

There have been times I have considered a half-formed plan in case lupus became unbearable. I've talked to other people with chronic illnesses who have had similar ideas. Strangely, having the reassurance that there's a way to stop things being unbearable, makes things easier to bear.

Lupus takes so much away from us: health, the ability to work, the ability to rely on our own bodies and minds, and replaces those things with fatigue, physical pain, and a sense of guilt about all the things we can't do.  That's aside from the risk of organ failure, the constant blood tests, visits to multiple types of doctor, a whole life that at times seems to be built around a disease.

When lupus is really bad, and organs do fail, and pain is worse than usual, just opting out of everything can seem to be a solution.

The discussion of voluntary euthanasia has been going on in Australia for years. Years ago, I was totally against it.  Now, after a few years of living with lupus, I get it.  Now, I think with some proper safeguards, it could be a good option. There would need to be a way to ensure that people weren't pressured by others into making the choice, and to ensure that it wasn't a result of depression.  (Depression is bad, I know from experience, and when you're at the bottom of the pit, it can seem like the pit is all that there is; but with support, medication, counselling and plain old determination, people can and do climb out of the pit and back into the light.)

What keeps us from all taking the option of ending our lupus and everything else? There's a few things:

• Hope.  One day some scientist is going to work out that this tiny change to that tiny gene or whatever is the solution. Lupus is going to be cured and we're all going to go back to normal lives. We want to be around to see that happen.
• Love.  Each of us, no matter what lupus has done to us, have people we love and who love us.  Those people would be devastated if we died. When we have a choice, we live for them.
• Faith. Viktor Frankl observed as an inmate of Auschwitz, that those who found meaning despite their suffering coped far better than those who did not find meaning. Whatever or whoever we have faith in, wherever we find our meaning, helps us get through things that would otherwise be unbearable.
• Future. Sure, things could get worse.  But they could also get better.  I can hold out a bit longer and find out which.
• Present.  Is this a "right now" thing, that will improve tomorrow or next week?
• Past.  I've been through bad things before.  If I could get through those, I can get through this bad thing that's happening now.
• Community. None of us is alone in this.  We belong to a community of people with lupus. Whatever we are going through, there's someone else who has been there and done that.  
• Stubbornness.  The simple determination to not let this dumb disease win.
• Support. Sometimes talking things out with someone, or having a friend or family member come in and catch up the washing we've been too sick to do, is all it takes to make the situation bearable after all.

Suicide is an understandable, and even in some cases reasonable, response to an incurable illness, but if you're considering it, I'd ask you not to take the decision lightly.  First step back, and look at the whole picture of your life and the network of the people your life impacts on.  Talk about it, with fellow lupies, with your doctor, with your family, with a counsellor. Don't make this decision hastily, or alone, or in the pit of depression.

If this post has raised issues for you, and you need to talk about it, you can call Lifeline on 131114 from anywhere in Australia.

Would you give $1 a month to support this blog?  You can become a patron for as little as $1 a month (up to any amount you choose.)  As a thank-you gift, I'll send you a free electronic copy of each new book I release.

www.patreon.com/IrisCarden

World Lupus Day Event - Please Be a Part of It

World Lupus Day is coming up.

Here's what I'd like to do as our WLD event on sometimeisitslupus.com.

I'd like all you lovely lupies to send me your best advice to someone newly diagnosed with lupus.  So email me iris@sometimesitislupus.com with your first name, the country you are from, and the thing you would most want to tell someone who's just been diagnosed.  (Oh, and write in the email that you give me permission to publish that information.)

Think of the things you wish someone had told you when you were diagnosed.  Let's see if we can put those things in a resource that will help someone else.

Please try to get your email to me by 9 May (Australian time - so that would be 8 May US time) so that I can have it collated and ready to go on World Lupus Day - 10 May.

(Oh, and it's yet to be confirmed, but I may have something nice to give to the person who gives the piece of advice I like the best.)

The novel I'm writing at the moment has everything: zombies, romance, a mad scientist and a sinister mystery.  Patrons of my writing will get an electronic version of the book, before it is released to market. You can become a patron of my writing; my books and blogs, for as little as $1 a month.  Just follow the link below.

www.patreon.com/IrisCarden

Out Of Order

I've been utterly useless for almost any purpose for at least a week now.

I've been sleeping at least 18 hours a day, and been exhausted for the time I've been awake.

I've missed things I wanted to do - I didn't get to church for Good Friday, or Easter Sunday.  Last night I was woken by a phone call - because I just hadn't turned up at a trivia night I had been going to with friends from my Toastmasters' Club.  (I completely forgot - and couldn't gather the energy to go if I'd remembered.)

I've moved from the bed to the couch and back, and done very little else.

Right now, I think it's time to stick an "Out of Order" sign on my head until further notice.

My brain's not functioning.  I've sent text messages to the wrong person, and been totally confused about basic things.

I regularly warn people how unreliable I am.  However, when they know functioning Iris, they don't really understand just how bad zombie lupie Iris can be, not until they meet me in this state.

My dog understands.

My dog, however, always understands. Whether I'm functioning properly or not, she's always happy to just be with me whether I'm doing things or just lying around.

Hopefully, in a few days, I'll start to get some energy back, because there's lots of things I'd rather do than just sleep all day.

Until then, I'm putting the tv on and lying on the couch.

Have you ever envisioned yourself as a patron of the arts, but don't have the money of a Medici? Patreon is the 21st century way of sponsoring artists of all types. You can be a patron of my writing for as little as $1 a month.  Patrons will receive electronic copies of each new book I write. 

https://www.patreon.com/IrisCarden

Give Aways - Lupus Care Packs

The contents of the lupus care packs.

A couple of weeks ago, I told you about lovely Corry Ang who brought lovely Lupus Care Packs to Lupus 2017.

It was an absolutely lovely gift for all of us.

I've received a message from Corry, who tells me you could have one if you like, too.

She has about fifty packs left over.

If you would like one, email your address to:
lupuscarecommunity@gmail.com or visit the her website for more information: www.lupuscarecommunity.wordpress.com.

(Remember, Corry is in Australia.  I don't know if she is able to send overseas.)

Of course, if you know a lupie who really needs a lift, you could email their address to Corry as well.

Corry has put a lot work, time, money, and organisation into these beautiful packs, to show some love and support to the lupus community.

Have you ever envisioned yourself as a patron of the arts, but don't have the money of a Medici? Patreon is the 21st century way of sponsoring artists of all types. You can be a patron of my writing for as little as $1 a month.  Patrons will receive electronic copies of each new book I write. 

https://www.patreon.com/IrisCarden

Dry Mouth is Not Just An Inconvenience

How's your mouth? Any ulcers, teeth hurting, dry feeling, always thirsty, just plain uncomfortable?

Dry mouth is annoying, and distracting, making it hard to concentrate on pretty much anything else, but it can cause serious issues too.

If you like having teeth, don't want infections,  of just don't like pain, you really need to do something about it. I treated it as just a nuisance, until I read a post about it by Dr Donald Thomas (the Rheumatologist who wrote The Lupus Encyclopaedia.) He made it more than clear that dry mouth is something we really need to treat seriously.

Now, I'm getting serious.  I talked to my dentist, and have gone from annual to twice-yearly dental check-ups.  I use a dry mouth toothpaste and mouthwash.  I also carry a dry mouth spray in my handbag, and keep a tube of dry mouth gel by my bed.  (The gel is squeezed on the tongue, and the tongue used to coat the mouth with goo.)

Specialist dry mouth toothpastes and mouthwashes are more expensive than the standard ones, of course. But on the other hand, I haven't had mouth ulcers since I started using them. I'm still bothered by the dry feeling in my mouth, but the pain isn't such a nuisance.

I tried using sugar-free gum for a while.  That does help with dry mouth, but there's a limit to how much I can use.  Sugar-free gum is sweetened with a product that acts as a laxative, and I already have gut issues.  So it's good, but needs to be used sparingly.

Have you ever envisioned yourself as a patron of the arts, but don't have the money of a Medici? I'm told Patreon is the 21st century way of sponsoring artists of all types. You can be a patron of my writing for as little as $1 a month.  Patrons will receive electronic copies of each new book I write. 

https://www.patreon.com/IrisCarden

Good News/Bad News

Last week I posted about the weight and health check station at the pharmacy, and how, after the initial weight loss when I stopped taking steroids, it's going to start being work to get my weight under control.

I did another check in today, and it was one of those good news/bad news stories.  The good news is I lost about 5kg last week. The bad news is my overall health score dropped from 3.6 to 2.5.

That happened because my blood pressure and pulse rate had gone up. I can explain that.  Last week I was using my scooter at the shopping centre.  This week, I tried walking.  That's what increased my blood pressure and pulse rate: exercise. With the pain and exhaustion that followed from being on my feet for about two hours doing the weekly shopping and odd jobs, I think next week I'll go back to the scooter. So next week my blood pressure and heart rate will be my resting rate again.

I will keep my exercise to the Lupus Exercise workout a couple of times a week, and a bit of pottering in my garden.

Really, the balancing act between doing enough to care for my health, and over-doing things and making myself sick, is a challenge I struggle with every day. I know other lupies struggle with this too.  It's a tightrope we all have to walk, and the consequences of doing too much or too little can be greater for us than they are for healthy people.

Would you give $1 a month to support this blog?  You can become a patron for as little as $1 a month (up to any amount you choose.)  As a thank-you gift, I'll send you a free electronic copy of each new book I release.

www.patreon.com/IrisCarden

Patreon

You've probably noticed the Patreon link appearing on the end of each post.  If you haven't

encountered it before, Patreon is a system for people to support writers and other artists.  It's kind of like a continuing kickstarter or gofundme.

Patrons pay creators of blogs, art, music, etc, a set amount per post or per month.

So why would you become a patron of my writing? Here's a few reasons:

• You love to read one or more of my blogs, and you think $1 or even more per month is good value for the information or entertainment you get out of them.
• You want the rewards: for $1 per month, you will receive a copy of the electronic version of each new novel I write.  
• More rewards: for $10 per month, you can be a Beta reader - you can read early drafts, and have the opportunity to give feedback and comments, as well as the $1 reward.  
• Even more rewards: For $100 per month, you get to be a Gold Star Patron, and will be acknowledged on my blogs, and in future novels (as well as the $1 and $10 rewards).
• You just think it would be cool to be able to call yourself a patron of the arts.
• You can spare $1 or so a month, and think my writing is as good as anything to spend it on.
• You adore the mrbumpycat.com animals, and would like to help fund their adventures.
• You have lupus and sometimesitislupus.com helps you feel less isolated.
• You enjoy short fiction, and like to read storiesontherun.com.
• You find worship-services.blogspot.com is of value to you.
• You really want to be the first to read my next novel.

For whatever reason.  If you want to sign up as a patron of my work, you can do so here: www.patreon.com/IrisCarden.

Don't Say It!

There are some things you should just never say to someone with lupus.

1. Everyone gets tired. Lupus fatigue is far more than just being tired. Imagine having heavy weights hanging off your legs, feet, hands, arms and head - all day every day.  That's what dragging our bodies through life feels like.
2. At least it's not cancer. I have a horrible illness that may kill me, and means I will take toxic drugs (some of which are the same ones given to cancer patients) probably for the rest of my life, can attack any organ without warning, and makes me sick each and every day.  No, it's not cancer.  People with cancer have a rotten time, but so do people with chronic illnesses.  
3. You should put more effort in. Some days, just getting out of bed takes all the strength I can manage. I do my best, and I already feel guilty for all the things I can't do.  I don't need your judgement as well.
4. You need to take something to boost your immune system.  My immune system is what's killing me. It doesn't need any help.
5. I know someone who can cure it. No, you don't. You know someone who wants to sell me snake oil - who wants to take advantage of me, because they think I might be desperate enough to be vulnerable.
6. A friend of mine had that but they were cured. So far there is no cure. Your friend is either in remission, or was misdiagnosed.
7. Why don't you try... My life is in danger here.  I don't have to justify to you why I choose to do as my doctors say.
8. You need to get out in the sun more. Sunlight makes lupus worse.  Think of me as the vampire you know.  I'll stay out of the ultraviolet light as much as possible, thanks.
9. All those drugs you take are dangerous. I know. They're horrible. The only thing worse than taking them, is not taking them.
10. You should get more exercise. I have a limited amount of energy for the day, once I've used it it's gone.  I will use my precious little bit of energy on whatever seems most important to me.
11. You don't look disabled, you don't need a disabled parking space. You don't look like an idiot either. I guess there's some things you just can't see.
12. You don't look sick. I'm so awesome, I can look well, while my whole body is falling apart.  That's my superpower. What's yours?

www.patreon.com/IrisCarden

Lupus Fatigue

You know what it's like, a healthy person complains of being tired, and you wish that "tired" could be a temporary thing for you, the way it is for them.

Chronic illness fatigue just isn't like any other kind of being tired.

It's more like Sisyphus would feel after an eternity of pushing a boulder up a mountain.  (Of course, according to the myth, he earned his punishment.  We didn't do anything to deserve this.)

We wake up tired and go to bed exhausted, and in between we fumble through life as best we can.

Sometimes, we manage to fight the fatigue and get things done.  But that usually catches up with us in the end.

Have you ever envisioned yourself as a patron of the arts, but don't have the money of a Medici? I'm told Patreon is the 21st century way of sponsoring artists of all types. You can be a patron of my writing for as little as $1 a month.  (Only if you can afford $1 a month.)  Patrons will receive electronic copies of each new book I write. 

https://www.patreon.com/IrisCarden

It's Going to Take Some Work

Health Check Station at my local
pharmacy.

For the last few months, I've had a problem with my bathroom scale.  I will gain and lose more than six or seven kilograms per day.  Clearly my scale was faulty.

Rather than go to the expense of buying another one, I thought I'd check in at the free health check station at my local pharmacy.

It checks weight, BMI, body fat percentage, blood pressure, pulse, all kinds of things, and emails the results.

My results were very sad.  My weight came up worse than the scale at home said at any time. My overall health score was 3.6 out of ten or bottom six per cent of the population.

Now, don't get me wrong,  I wasn't under any delusion I was healthy, but I hoped that despite lupus, I wasn't that bad.

I guess I have a lot of work ahead of me.

Key to that will be slowly building up to daily exercise, and using my Calorie King app to get back in control of my eating.

When my steroids were reduced, I dropped a dress size, without trying, which was great. It's becoming clear, however, that to get any further will take some actual work.

Would you give $1 a month to support this blog?  You can become a patron for as little as $1 a month (up to any amount you choose.)  As a thank-you gift, I'll send you a free electronic copy of each new book I release.

www.patreon.com/IrisCarden