Work it, baby

Job well done...with a bit of research and experience, Arthur and I have found our perfect occupation, writing.

Job well done…with a bit of research and experience, Arthur and I have found our perfect occupation, writing.

Kicking back on Labour Day made me think about how having rheumatoid arthritis (RA) had affected my working life.

To clarify: my paid, formal, get-out-of-my-pyjamas-before-leaving-home type of work, not my daily schedule of household chores.

If you’re interested in handy tips for working around the home, read a previous post.

A job is one of the best distractions from the ever-present Arthur so it’s important to find the right one.

Your job needs to be something you can do and enjoy doing, and should come with understanding employers.

After a year as a checkout chick last century, I discovered I wasn’t physically cut out for continuous standing interspersed only by packing and lifting groceries.

Nor was my mind agile enough to calculate change and remain perky and helpful while longing for a comfortable chair, a cold drink and a foot massage.

I hadn’t told my employer or managers about my chronic disease because I assumed they wouldn’t hire me and I didn’t want them to think I was incapable of doing the job.

Back then I didn’t have the visual cues most people associate with RA: swollen and misshapen, a.k.a. dodgy, hands and feet so I figured I could get away with simply looking young, fit and healthy.

And, anyway, I considered myself able bodied – and still do – even though arthritis is a recognised disability.

Under the Disability Discrimination Act, I could have asked for “reasonable adjustments” so that I could perform my job properly, for example, a stool to sit on at the checkout when I was tired or more regular rest breaks.

For that matter, anti-discrimination laws protect workers with a disability from being treated unfairly, including during recruitment.

If you need advice on your rights and options at work, you can contact organisations such as JobAccess and Centrelink.

I’ve had three career changes in my working life and there may be more to come because retirement is still a speck on the horizon.

Because of Arthur I’ve had to be adaptable and a bit choosy about my occupations.

In doing so I’ve ended up in enjoyable, doable and fulfilling jobs.

These days I tell employers about my RA within my first few months in the role.

This has led to understanding and accommodating workplaces when I’ve needed to take time off for doctor’s appointments, surgery or during a flare up.

And once my colleagues are aware of my limitations, they usually help with tasks I can’t do such as lifting heavy boxes.

If ever you can’t do your job because of illness or disability you may qualify for a superannuation disability benefit.

You may also be able to claim disability benefits if you have insurance policies such as income or mortgage protection.

For more information about accessing your super or insurance policies, visit the Chronic Illness Alliance website.

10 Arthur-related Q&As

As my solo departure for a distant land approaches, I’m reminded of the inevitable questions I’m asked when strangers notice the manifestation of my constant companion Arthur: my dodgy hands and feet.

Don’t get me wrong, I’d rather people ask me questions than stare because they don’t want to be intrusive or offend me. I get a bit paranoid when people stare.

So just in case you’re curious, these are the answers I usually give to the 10 questions I’m most asked about my experience with rheumatoid arthritis (RA):

1. Does it hurt/do you get much pain?

Pain has different degrees. I always have some degree of pain, usually minor, which I can ignore. For example, if I let myself think about it, the ball of my foot behind my big toe feels sore where it rests on the carpet but it’s not worth whingeing about. Luckily I don’t have too much pain of the highest degree where it hurts to breathe, move or get out of bed, let alone whinge.

2. Do you take any drugs?

I’m on that many pills and complementary medicines to minimise pain, swelling, stiffness and deformity it’s lucky I don’t rattle when I walk. I’ve been taking a combination of methotrexate, plaquenil, prednisone, arava, folic acid, actonel and somac for quite some time. My rheumatologist and I have discussed switching to biological drugs if/when this combination is no longer effective in controlling my RA.

3. Have you tried alternative medicine/therapies?

Yes. Not long after I was first diagnosed with Juvenile RA in the late ’70s, my parents took me to a specialist in Chinese medicine for an alternative treatment to the 12 dispirin a day prescribed by my GP. They were worried about the serious side effects of taking so many painkillers. Arthur was content on the herbal concoction for a long while but after a serious flare-up, my mum sought help from another GP. In consultation with the closest rheumatologist 500km away, Arthur was brought under control with a combination of steroids and non-steroidal anti-inflammatory drugs.

I know every medicine has side effects but for me the risks are outweighed by reduced pain, swelling, stiffness and deformity. I keep informed about the drugs I’m taking and have regular check ups with my specialist. Some people swear by non-medical treatment but I’d need more proof of its effectiveness before I quit medication that is working well for me.

4. Are you on a special diet?

No. I’ve heard ‘nightshade’ foods such as tomato, potato, eggplant or cucumber can aggravate RA but over the years I’ve had no problem with anything edible. I try to eat healthily from all the food groups. Of course if research proves certain foods are better avoided, I’d change my diet.

My 9-year-old self before being diagnosed with juvenile rheumatoid arthritis.

My 9-year-old self before being diagnosed with juvenile rheumatoid arthritis.

5. Aren’t you a bit young to have arthritis?

Granted I don’t get asked this as much as I used to because I fit the stereotype of a person with arthritis, i.e., older, but this was a common question back in the day. RA isn’t ageist. It can affect anyone from newborns to the elderly.

6. How long have you had rheumatoid?

This usually necessitates a quick mental subtraction of 9 from my current age. So, as of today, it’s 37 years.

7. What’s the difference between rheumatoid arthritis and ‘normal’ arthritis?

There’s no ‘normal’ arthritis because there are more than 100 types. The 2 most common are osteoarthritis and rheumatoid arthritis. Osteoarthritis is caused by joint wear and tear, which weakens cartilage. Rheumatoid arthritis is an autoimmune disease where the body attacks and destroys joint cartilage. Both types have common symptoms, including joint paint, stiffness and swelling.

8. How did you get RA/what causes rheumatoid?

I don’t know how I developed RA. It’s thought RA may be genetic and is triggered by environmental factors such as a virus, infection or smoking. Research into a cause is ongoing, including at the University of Queensland’s Diamantina Institute.

9. Is it hereditary?

Studies have shown RA is likely to be hereditary. But in my case, I’m the only lucky one on either side of the family, in 4 generations anyway, who has RA.

10. Is there a cure?

No. Not yet but with the treatments available nowadays, most people lead a normal life and it’s unusual to see deformities like my dodgy fingers and toes.

Beating the blues

Being a glass is half full type, i.e. having a positive attitude, is an asset for someone with a chronic illness such as rheumatoid arthritis (RA).

Pain, joint swelling, stiffness and disability can lead to emotional problems such as stress and depression, which tend to aggravate Arthur.

I admit that as a cynical optimist there are times I have to work at looking on the bright side of life.

Over the years I’ve found a range of feel-good tactics that help Arthur and I cohabit peacefully, including:

Laughing

‘They’ say laughter is the best medicine so phone that funny friend, watch American Pie again, play frisbee with your dog or borrow the latest Janet Evanovich from the library. Do something that tickles your funnybone.

Adventure seeking

Jump in your car, crank up the stereo and head off down the highway. I find singing and head bangin’ along to the likes of Bohemian Rhapsody increases my sense of adventure.

Looking for adventure keeps the blues at bay.

Looking for adventure keeps the blues at bay.

Exercising

Exercising doesn’t have to be a chore. Replace the weeds in the garden with some flowering plants, walk the dog by the river, bop to your favourite tunes while vacuuming or join your friends for a yoga class.

Helping out

Whether you lend an ear to a friend, donate to a worthy cause or volunteer your time, helping others takes your mind off your troubles and gives you a warm glow inside. It also reminds you there are others worse off than you.

Indulging

The endorphin-inducing power of Tim Tams dunked in a good coffee or beer battered fish and chips with a sav blanc shouldn’t be underestimated.

Looking bright

Have you ever noticed that on a cloudy or cold day, everyone is clad in black and wearing a frown? Your clothes definitely influence your mood so lift it by wearing something bright and happy. If you must wear black, spice it up with a cheerful item such as a pink belt or sky blue scarf.

Having a hobby

I suck at anything arty and crafty, and reading is more a way of life than a hobby, so I collect recipes. Not that I’m a great chef. I just love pasting recipes into large exercise books, which I take hours to flip through before grocery shopping each week.

Downloading

I’m a big fan of the whinge. I could whinge for Australia if whingeing was an Olympic sport. But there’s a fine line between getting something off your chest and becoming that person people duck into doorways to avoid. Make sure you know someone who will warn you before you cross that line.

But sometimes, no matter what you do, you just can’t get out of your funk.

That’s when you need to talk to your family or friends or head to the websites of support organisations such as Arthritis Queensland or Beyond Blue for resources to help you cope with your RA or depression.

If you’re feeling particularly overwhelmed and unable to cope, you should visit your doctor who can advise on options such as counselling or medication.

Arthur halts dream trip

Cancelling my long-awaited trip to South America because I couldn’t have a yellow fever vaccination made me resent Arthur like I did as a kid who couldn’t roller skate.

It’s not fair that having rheumatoid arthritis (RA) firstly stopped me from rolling around a skating rink and, now, travelling to my dream destination.

Specifically, it’s the immunosuppressant drugs that keep Arthur pacified – arava and methotrexate – that prevent me from having the yellow fever vaccine.

For the vaccine to be effective, I’d need to stop taking the medication 2 weeks before and 2 weeks after vaccination, pretty much ensuring I’d have a flare up.

And, when I’m feeling like I’ve been hit by a Mack truck, there’s a good chance I’d get yellow fever because it’s a live vaccine.

While I could get a certificate to say I couldn’t have the vaccination because of medical reasons, and take my chances in the Amazon, I’m immunocompromised so there’s a good chance I’d succumb to the virus.

Let’s just say my rheumatologist wasn’t very supportive of my travelling anywhere with yellow fever.

Once I stopped crying and moaning about things I couldn’t change, I realised I’d made the rookie mistake of not investigating vaccination requirements before booking an overseas tour.

In my head I’d packed my bags, including the Dencorub in case of aches, light hoodie in case of cold on the plane and Birkis sandals for comfortable walking in the Brazilian heat.

I’d written a reminder note to ask the doctor for extra scripts to stock up medication for the trip and a letter explaining why I was carrying so many prescription drugs overseas.

I’d even dragged my bag down from the top shelf in my cupboard to check it was still light enough to carry and the wheels worked.

But I’d neglected to check vaccination requirements.

That’s something that needs to be done in the early stages of planning – and something I did first before booking my next best adventure holiday…

A Southern Africa safari.

Handy tips for daily living

After failing in my third attempt to remove the plastic covering the cheddar bound for the Christmas Eve cheese platter, I conceded defeat and handed the less-than-sharp knife to a hovering Mum.

Knowing me well, Mum had been watching to make sure I wasn’t in danger of losing a finger, and waiting for me to ask for help.

Having had rheumatoid arthritis (RA) for a long time, I’m used to people looking askance at the way I do things manually, such as chopping vegetables or carrying groceries, to compensate for my dodgy hands.

My methods may look a little clumsy or time consuming but usually they work and I don’t have to ask for help – handy if you live alone.

I just need a little patience, perseverance, creativity and the help of simple assistive devices, either bought specifically for the purpose or adapted from household items.

My electric can opener is indispensible for opening tinned food, as is my hand-held jar opener, bought from a hardware store.

The jar opener doubles as a plastic milk container lid opener and childproof pill bottle opener.

Maybe you shouldn’t try this at home – but I find toenail clippers are perfect for keeping my fingernails trim and shapely.

A long-handled wooden spoon is useful for rubbing sunscreen or moisturiser on my back and shoulders.

I can wear dresses with zips if the zipper has an ‘eye’ in which I can clip a large safety pin which is fastened to the end of a long, thin, flexible, macramé rope.

After putting on the dress, I simply reach behind and grab the end of the rope, pulling up the zip.

Buttons on denim jeans or shorts can be hard to do up with sore fingers so enlarging the buttonhole by carefully cutting one of the edges just a millimetre or two with a sharp pair of scissors works a treat.

Looping heavy grocery bags over my forearms, instead of gripping them by hand, has helped prevent my fingers from deviating.

As has lifting saucepans from the stove with both hands firmly on the handle.

If you’d like more information about managing day-to-day tasks with RA, I recommend speaking to an occupational therapist or visiting the Arthritis Queensland website.

If you have any handy tips you’d like to share that have helped make your life with Arthur easier, I’d love to hear from you.

Operation Holiday

At this time of year, most people look forward to the festive season, especially having time off to relax and spend time with family and friends.

I, too, am looking forward to rest and recreation this year’s end because 2013 will be a bit different for me.

For the first time in 8 years, I won’t be recovering from surgery to repair rheumatoid-arthritis-damaged joints, or to reduce pain or deformity or improve function.

rheumatoid arthritis, RA, juvenile rheumatoid arthritis, JRA

Pesky nodules.

No hands, fingers, toes or feet are going under the knife.

No procedures to remove pesky nodules that sprouted up a year or so after they were last removed.

No rehabilitation sessions with the physiotherapist or hand therapist to regain or improve range of movement.

No x-rays to be taken, plastic bags to be worn when showering or multiples of stitches to be removed.

This year Arthur and I are on Operation Holiday.

Mostly because my hand surgeon said, that after 3 surgeries in a row, he didn’t want to see me again this Christmas.

He was only half-joking so I took his advice and I’m trying instead the “ignore them and they’ll go away” approach to my nodules.

You never know, it could work.

It’s not that I’m a surgery addict it just happens that when I moved to Brisbane, I gained better access to specialist surgeons, doctors and associated health professionals.

My arrival in the big city also coincided with 30 years of arthritic wear and tear that could do with seeing to, and having a job that afforded me to have 6 weeks leave when needed.

And at the same time my “nurse”, Mum, retired with Dad so she was available to supervise my recovery.

But this year the only recovering I plan on doing is after a huge Christmas lunch.

I hope your festive season is also full – full of great company, happiness, health and good cheer.

Being normal

When I was diagnosed with juvenile rheumatoid arthritis (JRA), I didn’t think much about what the future held for me.

I was 9 and at that stage I knew I was going to be a famous fashion designer, get married at 23, have twins named Lynelle and Janelle and live happily ever after.

I didn’t consider for one minute that my aches and, sometimes excruciating, pains or my stiff and swollen joints would stop me living my life.

And I still don’t, nearly 37 years later, even though my life went in another direction to the one I had mapped out at 9.

As a kid living in a country town in far north Queensland, having JRA, or Arthur as one of my school friends called my illness, was a novelty.

Back then not many people had heard of JRA, let alone met a child who had it.

I remember a friend telling me I couldn’t have arthritis because her mum said I was too young.

In high school, some boys said I was “bunging it on” when I gave my teacher a note from my doctor saying I couldn’t take part in physical education classes because I had JRA.

I guess I can’t blame them because I looked and acted like there was nothing wrong with me.

Except when my joints were so stiff and sore that Mum had to rub me with linament after a hot shower and dose me up with paracetamol so I could function enough to go to school.

Then I smelt weird, looked unhappy, and moved stiffly and slowly.

I thought people probably didn’t think I was “normal” then.

I felt more normal when Mum showed me a magazine story about a boy in New South Wales who had JRA like me.

He was in a wheelchair because his arthritis was so bad he couldn’t walk but he was still getting on with his life.

‘See,’ Mum said. ‘There are other kids with rheumatoid like you. Some are even worse off. Always remember that no matter how bad you feel, there’s someone worse off than you, whether they have arthritis or not.’

That’s probably when it dawned on me that I had no cause to feel sorry for myself.

I had loving parents who cared for me when I was in pain, encouraged me to be independent and helped me to believe I could achieve anything I wanted.

But still I would have loved to talk to somebody like that boy who knew what I was going through.

As a teenager Mum took me to a few arthritis group meetings but the people all seemed really old and complained a lot, instead of sharing their experiences of how they lived life with their “Arthurs”.

While I understood everyone handled pain differently, by then I’d worked out my life with rheumatoid was better, even easier, if I stayed positive.

It seemed Arthur was more likely to flare up like an angry old man if I was stressed or depressed.

If I did the things I love – hanging out with family and friends, reading, watching my favourite TV shows, and going to the movies and for walks – I kept my positive outlook and Arthur was a calm, nice old man.

Today I’ve added travelling to my list of things I enjoy and the world has become a much smaller place in other ways too.

With the arrival of the Internet, it’s a lot easier to compare notes with other people with RA.

That’s why I’ve started this blog.

By sharing my life with Arthur and writing about the things I enjoy, I hope at least one more person with RA won’t think much about what the future holds for them.

They’ll believe they, too, can live a happy, fulfilled, and normal life with “their Arthur”.

I look forward to hearing from you.

Andie :-)