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13/May/2020

Thanks to one of our MSK Kids parents who has written this blog for us. They have chosen to remain anonymous. 

When our world changed rapidly at the end of March due to COVID-19 social distancing regulations and remote learning, I was amazed that my child wasn’t freaking out about all the changes taking place. I put it down to her wonderful teachers and the fact that she has dealt with a major event in her life already, a chronic health condition and immunosuppressive treatment. Here are some of the ways my child has had the dress rehearsal to COVID-19, and so have we as parents.

Experienced at social distancing

When you have an immune suppressed child you have already had to cancel play dates, sleepovers and extra-curricular activities. Your child has already stopped sport at some stage, and has probably missed important days at school or with friends. You have already been fearful of every cough and sneeze in the classroom and you know the times of the year when chicken pox cases increase.

We’ve been using hand sanitiser already

Ask any parent who has spent time with a child in hospital, and chances are they know the smell of Microshield® very well (the brand of hand sanitiser in most Australian hospitals). We’ve been used to having good hand washing habits and know the importance of alcohol-based agents to clean hands. You probably already had a decent amount of hand sanitizer at home before COVID-19, as well as alcohol-based wipes (especially if you have to administer subcutaneous injections).

We know and appreciate our healthcare workers

It didn’t take this pandemic for us to appreciate our wonderful healthcare workers. We’ve known this for years through our regular interactions with doctors, nurses and allied health workers. Hopefully everyone else now recognises the importance of good health in our lives and our amazing healthcare workers.


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13/Mar/2020

Having children, self-belief and acceptance

Written by Shirani Wright

Read part 1 of Shirani’s story.

Another thing that was very hard for me – and I’m sure turned out much better than the doctors thought – was having my children. I don’t think my rheumatologist was overly keen on the idea, but he knew me well enough, not to try and talk me about of it as he knew that nothing was going to stop me and nothing did!

I was advised that I had to come off my methotrexate for three months before we started trying to get pregnant. This is because it’s a category X drug for pregnancy and can cause serious birth defects, including spina bifida. This was a bit scary.

The doctors thought that, by coming off methotrexate, I might have a big flare-up and not be able to even get pregnant. I came off methotrexate and luckily for me, no flare-up. They also thought if I did get pregnant there were a lot of other possible complications that could have resulted in the baby being born early.

My doctors pretty much implied I was too sick to get pregnant and carry to full term. Well, you know what they could do with that idea!! Even if I had to sit in bed for nine months and not move, I was determined to have children and that’s what I did. I have two beautiful girls, Chloe and Jacinta. I’m not going to say it was always easy, but it was worth it. I feel extremely luckily to have my two healthy girls.

I’d like the all the parents of kids with arthritis, and children with arthritis, to know it’s possible to have children of your own if you want to, even if you do have arthritis.

Having arthritis does make looking after my girls difficult sometimes, but I wouldn’t have it any other way. I wasn’t about to let arthritis stop me from having children!!! It’s easier, now they are both at school. I’m also very lucky to have a very supportive husband who understands my health issues and does a lot with the children as well as working full time and supporting me emotionally.

I also get emotional support from my friends, and family, but I’ve found that the Young Women’s Arthritis Support Group has helped greatly, as everyone in the group knows what it’s like to be in pain, be on medication, have bad days and everything that goes along with having a chronic illness.

I believe having arthritis has made me a strong person mentally and that it has helped me develop a positive attitude towards life. It often hasn’t been easy but I’m not one to back down from a challenge. I sometimes wonder what I’d be like as a person if I didn’t have arthritis.

We all have our limitations whether we have a disability or not. There are those who might not be able to walk but they might be a terrific artist. People with a disability can have just as fulfilling a life as someone without one. We can do anything we set our mind to. It might just take a bit of extra work but we can do it.

If I can give any advice to children with arthritis I would say, we need to believe in ourselves. We need to accept that we have a disability and that we have limitations but we shouldn’t let our disability define who we are. We are more than our disability.

To leave you, I’ll finish with a thought. Never give up and always shoot for your dreams!


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12/Mar/2020

Growing up, school and working

Written by Shirani Wright

I wake up in the early morning to go to the toilet. I look at the time – 5.00am – early enough to take my tablets. I turn on the lamp and automatically reach over and take my prednisolone, plus eight other tablets so they have time to work before I need to get up and get my girls ready for school. I go back to sleep until my alarm goes off at 6.50am and then I start my day.

Taking medication is a part of my life as I have systemic juvenile idiopathic arthritis. I was three and a half when it all began.

It started when I got bronchitis. My condition worsened and I was in hospital for six weeks. No one knew what was wrong with me. The doctors thought I had pneumonia, and although I was on IV antibiotics I just wasn’t getting better.

I was transferred to The Royal Children’s Hospital, where I had a number of investigations on my lungs and they discovered that I had a massive amount of inflammation. With this discovery and further tests, I finally had a diagnosis – systemic juvenile idiopathic arthritis or SJIA, an autoimmune condition that has stayed with me to this day. Not many people know that lung involvement, like I had, can be a part of some types of arthritis. And for me, joint involvement happened a bit later.

Since I was diagnosed at 3, I don’t remember not having arthritis. I think maybe this has made it easier for me than other people I’ve met who got arthritis at an older age, who might have been used to a certain life. I don’t remember what it’s like not to be in pain or discomfort every day or not to regularly go to the doctors, have tests, and be in hospital. It’s all just a part of my life and I’ve accepted it.

My twin sister and I had tennis lessons for a while but I remember I couldn’t run fast enough. I also did gymnastics too, so as you can see I didn’t let my arthritis stop me! My sister played basketball with a school friend for a time, I didn’t because of my arthritis. I don’t remember being particularly upset by this. I used to go and watch her team play and sometimes score for them.

At school, my arthritis didn’t affect me that much. I pretty much always joined in with PE unless I was having a particularly bad day. Sometimes if we had to walk somewhere from school my mum would organise for me to get driven by one of the teachers and I could always take a friend. Sometimes I’d be late getting to school if I was waiting for my tablets to work.

I felt like I had a bit of support from Musculoskeletal Australia growing up but not as much as there is available now. The Arthritis Foundation of Victoria (as it was known back then) ran camps during the summer holidays as a way for young people with arthritis to get together, meet each other etc. On these camps, they offered workshops run by doctors, massages and free time. It also gave us the chance to meet other young people with arthritis.

Up until those camps, I think I had only met one other child with arthritis; that’s why I think MSK Kids is a really great idea. It gives kids and young people an opportunity to meet each other and support each other. It also gives their parents the same thing. I’m sure my parents would have liked to have known some parents of kids with arthritis.

One thing I didn’t like about having to take medication for my arthritis is that because I’ve taken prednisolone since I was 3 (and I’m still on it 41 years later) it has stunted my growth. So when I was 15 years old, I looked 10 or younger, and that really used to bug me! I remember once I was in a shop with my mum and the shop assistant said, “are you mum’s little helper” and I got really upset. As my mum said though, it’s not her fault she doesn’t know. Now that I’m an adult, being short doesn’t worry me really from a social point of view, it’s more on a practical side when I sometimes have trouble reaching things at the supermarket, or glasses on shelves etc.

I think one thing that got me through childhood with arthritis,(apart from my mum)
is a positive attitude. Because I have arthritis there are things I can’t do. However, I try to concentrate on what I can do rather than what I can’t. This isn’t always easy, but I try and take the attitude that there’s no use worrying about what I can’t do, as that won’t change the situation. I try not to get grumpy or sad about it as this doesn’t change anything. It just gets me down and isn’t much fun for the people around me.

It’s not always easy to accept my limitations but I try and think “well everyone, including healthy people, has limitations”. Not everyone can run a marathon but does that mean they’re not as good as someone who can? I would say NO. Those people who can’t do one thing might be able to do something that another person can’t do. A fish can’t walk, but they’re happy.

One limitation I have had to deal with because of my arthritis is that I’m not working.

I left school and went to university and then TAFE. I worked in several part-time jobs over 10 years. I had to change fields of jobs from Nanning to reception/admin work as nannying was too physical. I did try working full-time for a year and a half but ended up in hospital as I often became breathless (which happens a lot with my type of arthritis).

At that stage, my doctor said I needed to cut my hours back. I found this hard as up until then my arthritis had not really limited me in a big way. But the fact that I couldn’t work full time was a big thing. It made me feel like I was sick and not normal.

One of my friends didn’t understand this. She said it was good that I only had to work part-time. What she didn’t understand was that working part-time wasn’t a choice! I didn’t choose it, I had to do it for health reasons. After some time and thought, I accepted this change and continued with my life. I no longer do any paid work as my health isn’t up to it.

Read part 2 of Shirani’s story.


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20/Jan/2020

How we discovered Sam had arthritis

My son Sam is now 18 years old. He was diagnosed with juvenile idiopathic arthritis (JIA) just after his 13th birthday.

Seeing your previously healthy and sport-loving son crawling down the hall just to get to the bathroom is heartbreaking. The impact on our whole family was enormous. You just can’t imagine the changes you suddenly have to make. One minute we were dealing with all the normal teenage activities and the next we had an occupational therapist talking to us about putting grab rails and mobility aids through our house. The whole future you envisage for your child changes in a split second.

Sam complained for a few weeks of sore knees but like most mum’s vying for that “Mum of the Year trophy” I pretty much ignored him, figuring it was too much sport or growing pains or something along those lines.

It was the Queen’s Birthday long weekend and he had a weekend off sport so I thought ok, this will give his knees a rest and a chance to settle down and everything will be fine. We went for a short walk as a family on the Sunday and after about ten minutes he said to me “Mum, I can’t walk anymore, my knees are killing me”. We headed home where he lay down on the couch and after an hour or so he got up and discovered that it wasn’t just his knees anymore, the pain had now spread to his ankles and hips.

The next morning I took him up to our GP who ran a range of blood tests and told me she wanted to see him again on the Friday but if it got worse before then, to take him to the ER. On Wednesday morning he woke up and the pain had also moved to his wrists, shoulders and elbows. We headed out to the Monash Hospital where we began what would be a long relationship with the wonderful paediatric rheumatology team there.

Sam was officially diagnosed with JIA two weeks later and started on methotrexate that day. His pain got worse and worse and he was admitted to the hospital for a week for further testing. After ruling out a lot of other nasties, he was eventually diagnosed as having pain amplification syndrome (PAS) also known as amplified musculoskeletal pain syndrome (AMPS).

To be honest, this floored me more than the diagnosis of JIA. I really felt that they didn’t know what he had, so they were just pulling something out of thin air! The PAS was harder to deal with in many ways than the JIA. With JIA I felt we had a well-trodden path to follow whilst with the PAS it felt very hit and miss.

We saw a pain specialist through Monash and Sam was put on a lot of different drugs with various success. Eventually we found some websites and read a lot of information on pain and educated ourselves about what pain is and the importance of movement. Sam did a lot of hydrotherapy and got moving and strengthening his body once again and slowly we began to see improvement.

Sam missed the majority of the second half of year 8 and a similar amount of year 9 before finally finding the right combination of medications that worked for him. The burden of the pain was enormous but missing out on school, playing sport and contact with his friends was even harder. The medication he was on also made him put on a lot of weight and some of the kids at school could be cruel.

I was no longer able to work as Sam needed my support at home for both his day to day care as well as his multiple appointments so I approached Musculoskeletal Australia about volunteering half a day per week. To be honest it also gave me a much needed break from the stresses of suddenly becoming a full time carer! I started working on the Help Line which not only gave me vital information about JIA but gave me access to a knowledgeable nurse as well as a number of other volunteers who could share their own stories with me.

Along with a great rheumatology team and the correct medications, Sam works hard on his fitness to ensure he remains well enough to do the things he wants to do. He also needs to pace himself which, like many teenagers, he does with varying degrees of success! Although he still has challenges that other teenagers just can’t imagine, he’s now studying full time at Uni, has a part time job and is able to participate fully in life – just as any 18 year old should be doing.

On a side note – I’m now working at MSK Australia 3 days a week running the MSK Kids program. It’s a program I love and am very passionate about. You can contact me about MSK Kids Tuesdays-Thursdays on 8531 8039 (1800 263 265) or buffy@msk.org.au




Musculoskeletal Australia (or MSK) is the consumer organisation working with, and advocating on behalf of, people with arthritis, osteoporosis, back pain, gout and over 150 other musculoskeletal conditions.

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