BLOG

Shirani2.jpg
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!


Shirani.jpg
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.


cortisone-foot.jpg
22/Jan/2020

Written by Steve Edwards

“A cortisone injection? You want to stick a needle in my sore foot?”

Your health care clinician has suggested you have a cortisone injection into your foot. As with any medical procedure, both of you are best advised to discuss the benefits and risks before proceeding. It helps to know what cortisone is, what it does, and why it’s been offered to you.

Cortisone is an anti-inflammatory medication that’s often used to treat musculoskeletal conditions. It’s a synthetic version of cortisol, a hormone that naturally occurs in your body. Injected into the affected area, cortisone can lower inflammation and pain, remove fluid, and thin scar tissue or adhesions. So if your clinician diagnoses a musculoskeletal condition affecting your foot or ankle – such as arthritis, bursitis, neuroma, or tendinitis – a cortisone injection is commonly raised as an effective treatment option.

Cortisone injections also contain a local anaesthetic. For certain conditions an injection can be painful, so the anaesthetic may be injected separately before the cortisone to block this pain.

The clinician may or may not use ultrasound technology to guide the injection. For pain relief in the foot or ankle, research finds no statistically-significant difference between procedures conducted with or without ultrasound. Interestingly, trials on cadavers injected with dyed cortisone show how it rapidly spreads from the injection-point to adjacent tissue, indicating that pinpoint accuracy is not key to effectiveness.

There are several types of cortisone. In most cases the clinician will administer a long-duration cortisone, taking effect within 1-3 weeks, with benefits lasting between 1-9 months, depending on the condition and its severity. There’s a clinical consensus that no more than 3 injections should be administered to the same body-part within a 12-month period, though there’s no research literature to clearly support this belief.

After the injection, you can quickly return to most activities. The clinician may recommend you avoid strenuous physical exertion such as gym workouts or running for a few days, so the cortisone isn’t displaced from the target tissue.

As for risk-factors, there’s been research into whether the injection may risk tearing tendons in the target area. There’s no recorded case of this in human trials, though it has occurred in trials on dogs and horses. There were cases of more general tissue damage recorded in early trials on American gridiron players, but various factors could have produced this result – the needle used, the amount of fluid injected, and the subjects receiving multiple injections within a short period.

No medical procedure has a 100-percent success rate, but a single cortisone injection administered by a trained clinician is both safe and effective in providing medium-term pain relief. Side effects are minimal, and the benefit to your musculoskeletal condition is potentially vast. And for some foot-specific conditions – such as a neuroma (pinched nerve), or plantar fasciitis (heel pain due to scar tissue) – a cortisone injection can often be a cure.

Our guest blogger

Steven Edwards is a trainee foot and ankle surgeon with the Australasian College of Podiatric Surgeons. He also teaches pharmacology and foot surgery to undergraduate podiatry students at La Trobe University.


hands-1200x795.jpg
02/Aug/2018

Gathering your all-star support team

Written by Amanda Sobey

Attempting to take control of your chronic condition can at times be a daunting and uncertain challenge. Ensuring you have a strong team around you to help tackle each milestone, step by step, can make it feel achievable.

So who might be in your personal support team?

Health professionals

Depending on your individual needs, your team may be made up of a variety of health professionals. These could include your GP, rheumatology nurse, specialist, pharmacist, physiotherapist, rehabilitation practitioner, occupational therapist, nutritionist or dietitian, physiotherapist, remedial massage therapist, acupuncturist, health coach, counsellor, podiatrist, or your exercise physiologist. Share your goals with your health practitioner up front to maximise the limited time in your appointments and so they can help you progress.

Your personal cheer squad

Surrounding yourself with people who lift you up and encourage you to take charge of your condition can be empowering.

Family and friends

Let them know how they can help you and keep them in the loop as you go along. Let them celebrate the small wins with you. Examples could be receiving positive results of reduced inflammation from your latest blood test, that you managed to walk around the block comfortably, or that you had a pain-free night’s sleep. They might be able to help you hang out that load of washing or put a home cooked meal in your fridge. They can provide a second pair of ears when you need to off-load, question information you’ve been given or accompany you to your next medical appointment. They can also be great companions for a belly laugh, keeping active and getting out of the house!

Peer support group contacts

Being able to connect with people who are going through the same challenges can mean the world. This might be through online social networks or contacts you’ve made at meetups. Group members will be at various stages of their conditions. Some will be newly diagnosed, others may be long-time chronic illness warriors. They’ll be happy to share their experiences and provide insight based on what has helped them.

Studying?

Consider letting your teacher or course convenor know about your condition, so that they can provide assistance if you need to ask for an extension, or are unable to attend a class. It’s also worth finding out about other support services available at the school or university you are studying with.

In the workplace

If you feel comfortable, let your employer or HR Manager know about your condition so that they can provide flexibility, if and when you need it. They’ll be appreciative of any information you can share with them about your condition, so they know how best to help.

On the road to wellness

With the right support around you, taking control of your chronic condition can feel even more possible. Keep your care team in the loop, share your highs and lows and be sure to celebrate each milestone on your wellness journey.

Our guest blogger

Amanda Sobey is a co-founder of Young Adults with Arthritis+ (YAWA+), an online peer support network for young adults in Australia aged 18-35 with arthritis and related chronic conditions. Amanda was diagnosed with rheumatoid arthritis at age 22 and is passionate about raising awareness and helping others on their wellness journey.

For more information please visit the following links:

Facebook: www.facebook.com/yawaplus
Twitter: www.twitter.com/yawaplus
Instagram: www.instagram.com/youngadultswitharthritisplus


2579-1200x664.jpg
27/May/2018

Support is available from people just like you

There’s nothing like talking to someone who knows what it’s like to live with your health condition.

They struggle with the same things you do. They’ve gone through similar experiences, upheavals and successes. They’ve felt similar emotions and thought similar thoughts.

They really understand, in a way that’s almost impossible for people who aren’t in the same boat to understand.

This is peer support. And it can be so helpful and valuable.

Meeting with others like yourself, you can share information, provide support, get advice, and know that you’re not alone.

Support groups can be found all over the place. Some meet face-to-face, while others connect via social media and websites.

We can help you find one near you.

Contact us today on 1800 263 265 for group details.

‘I could walk a mile in your shoes, but I already know they’re just as uncomfortable as mine. Let’s walk next to each other instead…’ – Lynda Meyers


2567-1200x800.jpg
26/May/2018

It really does.

When you live with persistent pain, it can sometimes feel like the world is flying by while you stay still…grappling with pain, anger, anxiety and frustration.

It’s important to acknowledge these feelings, and not ignore them or keep them bottled up. Talking honestly and openly with a family member, a close friend, or a health professional can help you move past this moment and get back to doing the things that you want to do.

But it’s not always easy.

There are often stumbling blocks and hurdles and barriers that get in your way. You’ll have your ups and downs, and sometimes you need to work really hard to keep moving. But the rewards are there.

Remember you don’t have to do it by yourself.

Apart from family, friends or a professional, consider getting in touch with a support group. They often meet in person, in local halls, cafes or someone’s home.

Or if that’s not for you, go online. There are so many forums available through websites and social media for you to get support, and in return provide it to others. There’s really nothing more valuable than connecting with others who know exactly how you feel, because they’re going through the same thing.

So reach out today. Talk with someone about how you feel. It’s ok, and it’s healthy to get it out in the open so you can deal with it. If you need help finding a group, contact us and we can help you find one.

“I’ve been helped by acts of kindness from strangers. That’s why we’re here, after all, to help others.” Carol Burnett




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.

Useful Links


Key Conditions

Recent Posts

Copyright by Musculoskeletal Australia 2020. All rights reserved

ABN: 26 811 336 442ACN: 607 996 921