Rethink MS

05/09/2024

📣 𝗛𝗔𝗩𝗘 𝗬𝗢𝗨 𝗛𝗘𝗔𝗥𝗗 𝗧𝗛𝗘 𝗡𝗘𝗪𝗦? 📣

The countdown is on - there's just one month to go until the MS Society SA & NT's 𝙋𝙖𝙞𝙣𝙩 𝙞𝙩 𝙍𝙚𝙙 𝙂𝙖𝙡𝙖!! Don’t delay - grab your tickets today!

This special 60th Anniversary event aims to raise awareness and funds for people living with multiple sclerosis, supporting vital services, like our dedicated nurses.

Join us at the Morphettville Racecourse on Saturday, 5 October 2024, for an unforgettable evening. Enjoy world-class entertainment featuring Billy Joel Tribute Concert Australia and the incredible Brad Blaze - Speed Painter, Artist and Entertainer.

Get your tickets today and be part of something truly special! https://bit.ly/3RRJrXO

17/08/2024

My favourite event of the MS Society SA & NT’s. Had a beautiful day volunteering and seeing so many familiar faces ♥️

Amy and Jess from our Client Services team 🥰

15/08/2024

NO NEW LESIONS! Is there anything better than receiving these results? I mean yeah.. a cure would be nice.. but I’ll absolutely take this for now 🥳

12 months of relapses and uncertainty, I can see the light again! It has been some of the darkest months of my life, it’s the reality of living with an unpredictable and progressive disease. We need to talk about this more, even if it helps one person feel less alone.

If you’re having a rough time, hang in there beautiful.

06/08/2024

Incredible Australian movie, written and directed by a husband and his wife who lives with MS. It’s a beautiful representation of the realities of this disease. It brings awareness and gives hope. I’ll be asking everyone in my life who wants to understand better, to go see it! PS. TAKE TISSUES 🥹

17/04/2024

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MS Australia’s ‘What is MS?’ video is a new educational resource produced to demystify and explain a complex, and often at times, invisible disease that now ...

15/04/2024

Kesimpta dose day! 💉

I collected it from the pharmacy at 4.30, forgot to put it in the fridge, realising 2 hours later. The brain fog is real currently. Called the pharmacy in a flurry, they said I can still use it. Phew 😮‍💨 I’m fairly sure that’s Month 4 done and dusted.. or is it 3? I’m not sure 😆 pleaaase do your thing.

12/04/2024

Update 🫶🏼 Since transitioning off Gilenya and starting Kesimpta, I have enjoyed a side effect free treatment that is easy! I genuinely love it!!

During this time I noticed significant changes in my body, particularly in my legs and balance. Truly, I was expecting a spine lesion because of this but it would crush me because until this point I had none, all brain.

This attack has hit left periventricular in the brain and T7 and T8 in my spine 💥

I will do a separate post on my symptoms as they are many and the spinal lesion is enhanced and active.

I am taking time to process this and ride the waves of emotions that come with an MS relapse, and wrapping myself in gentleness and compassion and the love from my family and friends. I have a busy few months ahead to keep me distracted with holidays, caravan adventures and birthdays 🥰

I am hopeful this progression is due to Gilenya rebound and that when we do another MRI in July, the Kesimpta is actually doing its job!! 🤞🏼🤞🏼

Thank you for so many kind messages checking in while I’ve been very very quiet. It amazes me that this humble little account has so many beautiful people who actually notice when I’m not updating! What a lovely reminder of why I started this account to begin with!

16/01/2024

Progress! It has been 21 days since I stopped taking Gilenya. Every Monday I have had bloods taken to check my lymphocyte count. They began at 0.2, the next week they were 0.49 and yesterday they were 0.6. Slow and steady! My neuro would like it to hit 0.8 or as close as possible, to commence the first dose of Kesimpta so that there are cells for the Kesimpta to target. If any are slow to exit my lymph nodes, they should be hit in the follow up loading doses.

The main concern at this stage is to reduce the likelihood of a rebound relapse from Gilenya withdrawal.
That’s why this is being done so carefully.

I have a tentative start date for Monday to commence Kesimpta! I am ready to heal again and put my body back in remission 💪🏽 ✨

12/01/2024

“Mummy is feeling very tired today, let’s play a puzzle on the floor together for now, if I’m feeling better tomorrow I’d love to kick the ball with you!” - And you know what? She loves doing a puzzle on the floor together ❤️

Whatever your best looks like today, it’s enough ❤️

Sometimes we can’t be as active as we’d like. That’s life with chronic illness. But naturally the guilt kicks in right?
It’s times like this that I grieve the healthy life I once lived. But it is okay to rest. It really is okay 🌻

27/12/2023

Today is Day one of Gilenya withdrawal!

Since my diagnosis I have been taking a tablet every day that halted my MS disease progression. I consciously take it to lock up my lymphocytes into my lymph nodes so they can’t attack my CNS. So very fortunate 🙌🏼 Now I’m meant to just stop. Not take anymore and let them out. It’s like being a victim of a targeted criminal act that led to permanent illness and disability, and I’ve just been told the perpetrators are getting out of prison, looking for revenge and there is no protection available for a while, and when it arrives, it may not be enough to stay safe. Just have faith and stay positive.

Am I grateful to have an incredible medical team? Yep! Do I trust them? 100% yes!
Do I have a good relationship with my body? Nope, we just live together, nothing more than that.
Am I going to be alright? Absolutely. I’ve been here, this feels so familiar, so I know it will keep hurting for a while yet, but I’ve made it through before, I will again ❤️

If you too are in a rough patch of your chronic illness journey, I see you and you too will be ok. We got this 🙌🏼

16/12/2023

When you’re one snapped handle away from a Menty b😅

Not quite, but it was enough for one day. On Friday, I was trying to process my MRI results, tackled grocery shopping at the markets with a tired 5 year old, survived a drive home listening to every song choice of said 5 year old just so that we could make it home happy, had to do a second grocery run for things the market doesn’t have, had to speed bag our Aldi groceries, and then we make it home and the handle snaps 🫰

Tomato puree EVERYWHERE, glass EVERYWHERE, behind the camera are splatters on my favourite rug where I sat and stared at this for way too long before giving myself one more pep talk to make it to bedtime.

I did it, I coped, I enjoyed bedtime cuddles with little Hazel, she was asleep. I sat on the couch for a big exhale. Then appears sweet Hazel, with a strong smell of chocolate breath and crackling sounds coming from her mouth.

“Why are you awake and why do you smell like chocolate?” Sweet Hazel had stashed popping candy chocolate from a Christmas card, pretended to be asleep, ate the chocolate and proceeds to advise she is in fact not sleepy at all. I inhaled, gave her cheeks a squeeze, kissed her chocolate face and smiled through my exhaustion. I had not made it this far to lose it now.

And they brushed their teeth, cuddled to sleep after a whisper “sorry mummy” and “I love you infinity” and lived happily ever after, THE END (of the week) 😂😘

15/12/2023

New disease activity and 4 new lesions 👎🏼

Not the news any person fighting MS wants to hear. But this is the reality of living with this disease. It’s unpredictable and every day remains uncertain.

Unfortunately Gilenya is no longer working for me, it is time to step up to a more effective treatment and slow this beast down again.

Withdrawing from Gilenya comes with risks, I’ll share this process as I go but in the meantime, I’ll keep everything crossed nothing further happens in the time it takes to get on a new effective treatment.

This is a scary and unsettling time. I feel super fragile.

I don’t have motivating positive things to say today, It’s important I just stop and allow myself to feel everything.

Soon I’ll pick myself up again and do everything I can to get well! I’ve done it before, I can do it again 🙌🏼