Saturday, 3 March 2018

The Funeral, the Flare, and the Feet

Just under a fortnight ago, my mother rang with horrible news. My younger brother had been killed in a horrible road accident.

I knew that the effort of travelling to the funeral would probably cause a flare, but if I didn't go, the stress and upset would probably cause a flare anyway. So of course I went.

Now, a little tip for pensioners travelling in Queensland.  Queensland Rail charged me $25 each way to travel from Brisbane to Rockhampton on the Tilt Train.  (You need your pension card when you book with them.) With a letter from my doctor saying I needed a carer with me, my son got his ticket free.

The actual trip involved about an hour on a city train to get from Ipswich to  Brisbane.  Then it was eight and a half hours on the travel train.

To help with the pain of sitting so long, I wore the portable tens machine attached to my hips and back the whole time.

I chose to stay at a hotel for the air-conditioning, instead of with family or friends. Because this trip was not planned ahead of time, with no time to save up, I could only afford two nights in the hotel.  So we arrived the night before the funeral,  stayed for the day of the funeral, and left the morning after.

By the time we arrived home, neither my mind nor my body wanted to function at all. To be fair my healthy son was in a similar state.

Two days later, however, he was back to normal, and I was sleeping on the couch all day.  I've been fatigued, in pain and brain-fogged for a week.

With this flare, something new is happening.  Not the crying, that's about my brother.  No, there's something weird happening with my feet.

When the rest of me is hot and pouring sweat (even in the air-conditioning), my feet are freezing cold.  I've been lying on the couch, under the air-conditioner with my feet wrapped in a blanket. Then occasionally I get horrible pains in the soles of my feet.

I suspect it's a circulatory problem.  One of the tests on my brain ages ago showed lupus had caused some vascular changes, so it's not beyond the realms of probability that the same thing is happening to my feet.

So I'm making sure I use the big tens machine at home each day - the one that does the base of the feet as well as having the electrodes for sore spots on the body.

My hope is this flare will burn out quickly, so I can get back to the exercise program the exercise physiologist worked out for me.  But all lupies know a flare will last as long as it lasts.

Sunday, 18 February 2018

Lupies Will Understand

I'm sure lupies will understand these things, healthy people might not.

  • Having to do something important, that involves speaking, when you have a massive ulcer on the tip of your tongue.
  • Going on a short trip, and having to take an extra bag for your medication.
  • When you have a choice between going out and having fun, and having a nap, choosing the nap.
  • Writing absolutely everything down, because otherwise you will forget 90% of it.
  • Checking your pill case five times in an hour because you keep forgetting if you took your pills.
  • Drinking coffee by the litre because otherwise you'll fall asleep, then not being able to sleep when you need to.
  • Postponing dealing with a crisis because you have a doctor's appointment.
  • Getting exhausted doing nothing
  • Not knowing if something new is a symptom or a side-effect.
  • Doing things you know you shouldn't because you're just so sick and tired of being sick and tired.

Tuesday, 13 February 2018

And this little lupie went wee, wee, wee

Let's talk about an embarrassing little issue that some lupies have.  Actually, I was afraid I might be the only one, but I've since found out there are others.

I've always had a little bit of stress incontinence, (advertisers now call it "light bladder leakage") ever since I had my kids, who are now both in their 20s.

Lately, it's been getting worse. More than that, I've been horrified to discover I've wet the bed a couple of times.

So, off to the GP.

Her first question: how much water do I drink?  Well, because I have a horrible problem with dry mouth, a lot.

Next question: do I still do pelvic floor exercises?  Yes, I do.

The options she gave me: a pill for the night time, but it would leave a dry mouth.  I balked at that because I have enough trouble with dry mouth as it is.

The next option was some surgery to correct the leaking when I sneeze or cough.  I've had more than my fair share of surgery, so I wasn't really enthusiastic about that either.

I opted to think about it and get back to her.

Back home, I started to think about her first question again.  Just how ridiculous an amount of water do I drink each day?  I decided to try setting a limit - not so little water I'd be in any danger of dehydration, but less than I've been guzzling.

I have been tracking how much water I drink - limiting it to about ten to twelve cups per day.  So far so good - no wet bed, and not even any little leaks with coughs or sneezes.

Of course, that leaves me struggling with my dry mouth. I'm sipping my allowance of water really slowly, and making a lot of use of moisturising mouthwash, mouth spray and gel. (The brand my local pharmacy has is Biotene, but there's probably other brands of the same thing out there.)

It's quite typical of living with lupus that anything I do to deal with one problem makes another worse. Hopefully, I've found a balance with this particular issue. 

Do other lovely lupies have this problem?  What have you found to help?

Sunday, 21 January 2018

A Bloody Mess

A lot of lupies, including me, take fish oil as part of our drug cocktail.  I don't take quite as much as my rheumatologist wants, because if I throw up if I take the eight to ten capsules a day he recommends.

But I do take six 1000mg capsules each day.

Fish oil is a blood thinner.

Usually, I don't even think about it.  After all, there are so many side effects of the things I take, I wouldn't be able to think of anything else, if I kept thinking about all the things my drugs could do to me.

This morning, I cut my thumb on a broken glass in the kitchen sink.

I dripped blood as I walked across the kitchen to the drawer with the first-aid kit, and found a sticky dressing to apply. The pad of the dressing soaked up immediately, but didn't leak through the other side, so I was able to do a fair clean up and look a little less like Jack the Ripper.

I have a problem with sticky dressings.  Even though I used the ones for sensitive skin, if they're left on too long, they tend to take chunks of skin with them when they're removed.

So a couple of hours later, when I was in the bathroom washing my hands, I decided I wasn't risking having the, now wet, dressing on any longer, and I took it off.  The tiny cut was still bleeding.

With my non-cut hand cupped under the cut one to catch the blood, I dashed (OK, limped as quickly as I could) back up the hall, tripping on two strategically-placed cats on the way to the first-aid drawer again.

So the moral of the story lovely lupies is this, when a medical-type person with a needle or scalpel or other sharp implement asks you if you're on blood thinners - remember that includes fish oil. (Oh, and take a look at what's in the sink before you put your hands in there.)

Friday, 1 December 2017

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:


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)

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

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!"


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...

Sunday, 26 November 2017

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.)

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
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

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.